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Transcript
BLOOD BORNE VIRUSES
A RESOURCE PACK FOR
PRIMARY AND COMMUNITY
HEALTHCARE STAFF IN LOTHIAN
Written by
Euan MacLeay, Anne Whittaker, Ewen Stewart
Steven Maxwell and Judith Craven
Primary Care Facilitator Team
NHS Lothian
Substance Misuse Directorate
Woodlands House
Astley Ainslie Hospital
Edinburgh, Scotland, EH9 2TB
Published by
NHS Lothian©2014
CONTENTS
(Crtl + Click on links or entries to be taken there and Alt+Left Arrow key to return)
CONTENTS .........................................................................................................................2
INTRODUCTION .................................................................................................................4
BACKGROUND AND EPIDEMIOLOGY.............................................................................6
HIV (HUMAN IMMUNODEFICIENCY VIRUS)................................................................6
HEPATITIS C ..................................................................................................................8
HEPATITIS B ..................................................................................................................9
HEPATITIS A ..................................................................................................................9
TRANSMISSION ...............................................................................................................13
SUMMARY OF RELATIVE RISKS OF TRANSMISSION .............................................14
HIV TRANSMISSION....................................................................................................15
HEPATITIS C TRANSMISSION....................................................................................15
HEPATITIS B TRANSMISSION....................................................................................16
HEPATITIS A TRANSMISSION....................................................................................17
SIGNS AND SYMPTOMS .................................................................................................20
KEY SIGNS AND SYMPTOMS OF ALL BBVS.............................................................21
HIV DISEASE PROGRESSION....................................................................................21
HEPATITIS C DISEASE PROGRESSION....................................................................24
HEPATITIS B DISEASE PROGRESSION....................................................................26
HEPATITIS A DISEASE PROGRESSION....................................................................27
THE PSYCHOLOGICAL AND SOCIAL IMPACT OF BLOOD BORNE VIRUSES........28
PREVENTION (Risk Reduction Strategies and Immunisation)....................................34
SECTION LINKS FOR PREVENTION..........................................................................34
HEPATITIS A AND B IMMUNISATION ('VACCINATION') TARGET GROUPS ...........35
IMMUNISATION SCHEDULES FOR HEPATITIS B AND A .........................................36
REDUCING THE RISK OF SEXUAL TRANSMISSION OF BBVs................................38
NEGOTIATING SAFER SEX ........................................................................................39
REDUCING THE RISK OF TRANSMISSION OF BBVs THROUGH INJECTING DRUG
USE..........................................................................................................................40
OCCUPATIONAL INJURIES ........................................................................................42
POST-EXPOSURE PROPHYLAXIS (PEP & PEPSE)..................................................43
RISK REDUCTION INFORMATION FOR PEOPLE WHO KNOW THEY ARE
INFECTED ...............................................................................................................44
TESTING ...........................................................................................................................45
WHY TEST FOR BLOOD BORNE VIRUSES...............................................................47
WHO SHOULD BE OFFERED A TEST?......................................................................49
RISK ASSESSMENT ....................................................................................................50
RAISING THE SUBJECT OF BBV TESTING ...............................................................51
THE PRE-TEST DISCUSSION.....................................................................................52
UNDERSTANDING THE TESTS ..................................................................................53
WHICH TESTS TO ASK FOR.......................................................................................54
GIVING THE TEST RESULT ........................................................................................57
MANAGEMENT and CARE of HIV, HEPATITIS B and C ...............................................62
PRIMARY CARE...........................................................................................................62
REFERRAL TO SPECIALIST CARE FOR BBV INFECTIONS.....................................63
HIV INFECTION............................................................................................................64
HIV-RELATED CONDITIONS.......................................................................................66
HEPATITIS C INFECTION............................................................................................71
PHARMACOLOGICAL TREATMENT...........................................................................74
HEPATITIS B INFECTION............................................................................................76
SOCIAL CARE ..................................................................................................................87
SECTION LINKS FOR SOCIAL CARE .........................................................................87
Blood borne virus resource pack 2014 © NHS Lothian
2.
SEXUAL AND REPRODUCTIVE HEALTH ......................................................................92
DISCUSSING SEXUAL HEALTH ISSUES AND ONWARD REFERRAL .....................94
ASSESSMENT OF SEXUAL HISTORY .......................................................................95
REDUCING THE RISK OF SEXUAL TRANSMISSION OF BBVs................................95
ADVICE FOR BBV POSTIVE INDIVIDUALS ON MAINTAINING SEXUAL HEALTH ..99
LEGAL ISSUES ............................................................................................................99
REPRODUCTIVE HEALTH ........................................................................................100
CONCEPTION AND PREGNANCY............................................................................101
PREGNANCY (incl Post-Natal Management) ..............................................................107
HIV AND PREGNANCY..............................................................................................108
HEPATITIS C (HCV) AND PREGNANCY...................................................................109
HEPATITIS B (HBV) AND PREGNANCY ...................................................................111
INFECTION CONTROL...................................................................................................115
CLEARANCE FOR HEALTHCARE WORKERS.........................................................116
STANDARD INFECTION CONTROL PRECAUTIONS ..............................................116
BODY FLUID SPILLAGE PROCEDURE ....................................................................116
MANAGEMENT OF NEEDLE-STICK AND OTHER CONTAMINATION INJURIES ..117
POST-EXPOSURE PROPHYLAXIS AND POST-SEXUAL EXPOSURE (PEP and
PEPSE)..................................................................................................................117
SOCIAL CONTACT/HOUSEHOLD TRANSMISSION GUIDANCE ............................117
LIVING WITH A BLOOD BORNE VIRUS .......................................................................118
COPING WITH A DIAGNOSIS ...................................................................................119
WHOM TO TELL.........................................................................................................119
INFORMATION ON STAYING ‘HEALTHY’.................................................................120
STIGMA AND DISCRIMINATION ...............................................................................122
EMPLOYMENT ...........................................................................................................124
IMMIGRATION............................................................................................................124
TRAVEL AND TRAVEL INSURANCE ........................................................................125
PALLIATIVE CARE.........................................................................................................127
WHAT IS PALLIATIVE CARE? ...................................................................................127
PALLIATIVE CARE IN HIV/HEPATITIS......................................................................127
SERVICES.......................................................................................................................132
APPENDICES .................................................................................................................138
APPENDIX A: CLINICAL INDICATOR DISEASES FOR ADULT HIV INFECTION....139
APPENDIX B: RISK FACTOR CLASSIFICATION – A ROUGH GUIDE.....................141
APPENDIX C: LIST OF AREAS WITH INTERMEDIATE TO HIGH SEROPREVALANCE.......................................................................................................142
APPENDIX D: COMPONENTS OF A BBV RISK ASSESSMENT ..............................143
APPENDIX E: YOUR JOURNEY THROUGH HEPATITIS C CARE...........................145
APPENDIX F: SAFER SEX AND BLOOD BORNE VIRUSES (BBVs) LEAFLET.......146
APPENDIX G: INJECTING DRUG USE AND BLOOD BORNE VIRUSES LEAFLET 148
APPENDIX H: HCV TESTING FLOW CHART ...........................................................150
Blood borne virus resource pack 2014 © NHS Lothian
3.
INTRODUCTION
Welcome to the Blood Borne Virus Resource Pack. The pack contains important
information regarding HIV, Hepatitis C, Hepatitis B and Hepatitis A.
NHS Lothian is committed to providing good quality evidence based care and treatment to
people infected with and/or affected by blood borne viruses. This pack is aimed at
healthcare staff working in Primary Care and the community. Other professionals and
students, however, may find it useful too. The pack includes policy and good practice
guidance on prevention, testing, treatment and care. The resource pack applies primarily
to adults rather than children.
All healthcare professionals may be involved in the care of patients infected/affected by
HIV, hepatitis C, hepatitis B and hepatitis A. Blood borne viruses are an increasing public
health concern as they are linked with multiple health and social inequalities. This
resource pack is designed to provide accurate, relevant and practical information so that
healthcare staff can provide good quality care and advice to patients.
HOW TO USE THE RESOURCE PACK
The pack is not designed to be read as a whole but we recommend specific topics should
be accessed as and when required. Hyperlinks provide access to information which is
cross-referenced. You can access specific information with hyperlinks on the contents
page and the summary box page at the start of each section. The use of the PDF
bookmark facility on the left of the page also aids easy navigation of the pack.
Although every effort has been made to acknowledge source material, the resource pack
is not fully referenced. Those references that are cited are recommended either for further
reading or for accessing more detailed information on the topic concerned. Careful
attention has been paid to the terminology used in this document in an effort to avoid
language which might be considered stigmatising or inappropriate. The reference lists are.
Available at: the end of each section.
The resource pack is copyrighted. However, professionals are welcome to reproduce the
contents in full or in part, as long as the source is acknowledged. Recommended citation:
MacLeay, E., Whittaker, A., Stewart, E. Maxwell, S. and Craven, J. (2014) ‘Blood borne
viruses: a resource pack for primary and community healthcare staff in Lothian’, NHS
Lothian: Edinburgh.
This resource pack does not replace the need for professionals to use their clinical
judgement when deciding how to proceed in individual situations and acts as a guide only.
Professionals should always refer to departmental protocols, service delivery guidelines
and NHS Lothian policy/procedures.
Feedback is very welcome, so if you notice any omissions or errors, then let the PCFT
know by email [email protected] or by phone 0131 446 4422.
Blood borne virus resource pack 2014 © NHS Lothian
4.
Blood borne virus resource pack 2014 © NHS Lothian
5.
BACKGROUND AND EPIDEMIOLOGY
SUMMARY
• HIV, hepatitis B and hepatitis C are commonly referred to as blood borne viruses
(BBV). They are found in the blood and other body fluids in varying amounts.
• Hepatitis A is a water-borne virus that is also carried in the blood.
• HIV attacks the immune system and the hepatitis viruses affect the liver. They
can all lead to serious health problems.
• In some ways the viruses behave in similar ways but they have important
differences.
SECTION LINKS FOR BACKGROUND AND EPIDEMIOLOGY
HIV and HIV Epidemiology
Hepatitis C
Hepatitis B
Hepatitis A
The following section provides information about each virus and figures on world-wide and
local prevalence.
HIV (HUMAN IMMUNODEFICIENCY VIRUS)
HIV is a type of virus known as a retrovirus. Retroviruses cause a copy of their genetic
material to be incorporated into the genetic material of human cells. HIV ‘hijacks’ the cell's
replicating machinery to make more copies of HIV. HIV prevents the immune system from
working properly by infecting and disabling key cells (called CD4 cells) which co-ordinate
the immune system’s response to fight infection.
Important indicators of the progression of HIV are the viral load, an indication of how
much of the virus is in the blood, and the CD4 count – a measurement of the number of
CD4 cells in the blood.
The damage to the immune system caused by HIV means that individuals become
vulnerable to infections and disease.
AIDS stands for Acquired Immune Deficiency Syndrome. It is a set of symptoms caused
by the HIV virus, and is the result of damage to the immune system. Individuals are
diagnosed with AIDS if they have had one or more specific infections known as
opportunistic infections. These infections occur when the immune system has been
significantly damaged by HIV.
HIV EPIDEMIOLOGY
Centres for Disease Control (CDC) collect data and look for patterns in infections and
illnesses. In Scotland, reporting is co-ordinated by Health Protection Scotland (HPS).
Access up-to-date information from HPS on their website http://www.hps.scot.nhs.uk/ or
subscribe to their weekly published reports.
HIV infection world-wide
• UNAIDS – the joint united nations programme on HIV/AIDS estimated in 2009 there
were 33.3 million people living with HIV/AIDS
Blood borne virus resource pack 2014 © NHS Lothian
6.
• By the end of 2009 36% (about 5.2m) of the 15m in need of treatment in low/middle
income counties were receiving antiretroviral therapy – a 30% increase from 2008
• In 2009 there were an estimated 2.6m people who became newly infected with HIV.
Source: UNAIDS 2010.
In UK
• An estimated 91,500 adults were living with HIV in the UK at the end of 2010, of
whom approximately 22,200 (24%) were unaware of their infection
• Retention in HIV care is high in the UK – with on average 90% of HIV diagnosed
adults regularly attending services. In 2010 82% of HIV diagnosed adults in care
received antiretroviral therapy
• There were 6,660 people newly diagnosed with HIV in 2010.
Source: Health Protection Agency 2011.
In Scotland
The cumulative total of known HIV positive cases in Scotland was 6,845 as of end
September 2011.
• Men 4,947 (72%)
• Women 1,898 (28%)
• At least 1,817 (27%) are known to have died
• An estimated 4,000 people are living in Scotland who have been diagnosed HIV
positive with around another 1,000 who have not been diagnosed.
In 2010 the number of reported new diagnoses was 359 (compared with 404 in 2005, and
153 in 2000); exposure categories were identified in cases:
• Men who have sex with men (MSM) 130 (91 exposed within Scotland)
• Heterosexual sex 151 (19 exposed within Scotland)
• Injecting drug use 19
• The majority of cases of heterosexual transmission happened outwith Scotland with
the vast majority taking place outwith the UK.
Source: Health Protection Scotland 2011.
In Lothian
• Lothian has the highest number of detected cases of HIV in Scotland (2,402
cumulative total to end September 2011) – followed by Greater Glasgow and Clyde
(1,974)
• There were 92 new cases of HIV detected in 2010 in Lothian.
Source: Health Protection Scotland 2011.
Trends in reports of new infections in Lothian
• Since 2000 there has been an increase in the number of reported cases of sexual
transmission, both heterosexual and MSM – with MSM being the most important
route detected.
• Since the late 1990s there has been relatively low reporting of transmission through
injecting drug use (although there are signs that in other parts of the UK, this is an
increasingly important route of transmission).
• Marked fall in AIDS-related cases and deaths since 1995 (since introduction of
Highly Active Anti Retroviral Therapy).
Source: Evans et al. 2006.
Blood borne virus resource pack 2014 © NHS Lothian
7.
HEPATITIS
Hepatitis means inflammation of the liver. There are many identified types of viral
hepatitis. In this resource pack the focus is on hepatitis C, B and A as they are the most
common forms of viral hepatitis seen in Scotland.
HEPATITIS C
Hepatitis C is inflammation of the liver caused by the hepatitis C virus (HCV). First
identified in 1989 (previously known as ‘non-A non-B’ hepatitis), many different strains
(genotypes) of the virus exist. Hepatitis C is referred to as ‘acute’, if infection lasts less
than six months, or ‘chronic’, if infection lasts longer than six months.
Of those infected with HCV, up to 80% go on to develop chronic illness and the rest clear
the virus naturally. Hepatitis C usually progresses slowly over a number of years. Effects
on the individual vary from case to case. Most people with chronic hepatitis C will develop
cirrhosis in the long term, leading to liver cancer and liver failure in some cases. There are
certain factors linked to earlier disease progression – see the Signs and Symptoms
section.
HEPATITIS C EPIDEMIOLOGY
Hepatitis C infection world-wide
Hepatitis C is a global public health concern. Estimates from WHO (2002) suggest that
around 3% of the world’s population have been infected with the hepatitis c virus (HCV)
and world-wide there are over 170 million people chronically infected with HCV.
In UK
• In 2010 the Health Protection Agency estimated that around 216,000 people are
living with chronic HCV in the UK
• Prevalence of HCV among injecting drug users (IDUs) varies by region. Evidence
suggests that almost half of past and current injectors have been infected with HCV.
Source: Health Protection Agency 2012a and 2012b.
In Scotland
• As at end of September 2011 there were a total of 30,934 cases of HCV antibodypositivity diagnosed
• Of those, 2/3 are men and 1/3 are women
• 57% reported a history of injecting drug use (90% of those with a known risk factor)
• 14% are known to have died
• It is estimated that around 50,000 people in Scotland have been infected with HCV
and that 39,000 have developed chronic infection
• Less than half of individuals with chronic infection have been diagnosed
• It is estimated that there are 1,000 – 2,000 cases of HCV acquired through injecting
drug use in Scotland every year.
Source: HPS 2011a, Hutchison et al 2006.
In Lothian
• As of end of September 2011 there were 4,330 cases of HCV antibody-positivity
detected second only to Greater Glasgow and Clyde with 12,567
• In 2010, 268 new cases were reported compared to 239 in 2005, and 151 in 2001.
Source: Health Protection Scotland 20011a.
Blood borne virus resource pack 2014 © NHS Lothian
8.
HEPATITIS B
The hepatitis B virus (HBV) is a blood borne virus that affects the liver, causing
inflammation. HBV is referred to as ‘acute’ if infection lasts less than six months and
‘chronic’ if infection lasts longer than six months. Chronic HBV ‘carriers’ can also be ‘e’
antigen positive (HBeAg) which indicates the presence of viral protein – associated with a
higher level of infectivity.
Longer term, HBV can lead to cirrhosis, liver cancer, and liver failure. It is second only to
tobacco as the leading cause of cancer worldwide (WHO 2002).
HBV is significantly more infectious than the other blood borne viruses discussed in this
pack. Many different strains of the virus exist. Immunisation against HBV is available and
provides lifelong immunity in most cases. See the Signs and Symptoms section.
HEPATITIS B EPIDEMIOLOGY
Hepatitis B infection world-wide
• The World Health Organisation (WHO) estimates that 1/3 of the world’s population
has been infected at some point – some 2,000 million people
• It is thought there are around 350 million people who are chronically infected
• Around 600,000 people die annually
• In areas such as south-east Asia, Central Asia, some of the Pacific rim, parts of the
Middle East, the Amazon basin, and some countries in Eastern Europe around 7090% of the population have been infected by the time they are 40.
Source: WHO 2002b, WHO (2008).
In UK
• WHO categorises the UK as an area of low prevalence of HBV infection (less than
2%) – however accurate figures are not available
• The Department of Health estimates that there are about 180,000 people in the UK
affected by HBV. The Hepatitis B Foundation estimates that there over 325,000
people living with chronic HBV infection in the UK.
Source: Department of Health 2002, Hepatitis B Foundation 2007, WHO 2002b.
In Scotland
• Current estimates suggest there are between 5,000 and 15,000 cases of chronic
HBV
• It is likely that the number of newly acquired cases of HBV are in the range of 200400 per year.
Source: Scottish Government 2011.
HEPATITIS A
Hepatitis A is inflammation of the liver caused by the hepatitis A virus (HAV). It is usually a
short term illness which most people recover from in 6-8 weeks. Once the individual
recovers they develop life long immunity. In very rare cases (around 1 in 1,000) people
can suffer liver failure and death, usually people with pre existing liver damage – see the
Signs and Symptoms section for further details.
The spread of HAV is mostly by the oral-faecal route and is usually linked to poor
hygiene – see the Transmission section for further details. Immunisation against HAV is
available and provides life long immunity in most cases.
Blood borne virus resource pack 2014 © NHS Lothian
9.
HEPATITIS A EPIDEMIOLOGY
Hepatitis A infections world-wide
• The virus is present world-wide and is directly linked to levels of sanitation and
hygiene
• In countries with poor environmental hygiene, almost all children are infected with
HAV before the age of nine
• It is difficult to estimate the prevalence world-wide due to under reporting and lack of
reporting systems however the WHO estimates there are around 1.4 million cases
annually.
Source: WHO 2000.
In UK
• HAV was a common childhood infection in the early 20th Century but now in the
21st Century it is an unusual infection in the UK
• In 2009 there were 352 cases detected in England and Wales and 48 in Scotland.
Source: HPA 2012, HPS 2012.
In Scotland
• Over the last 10 years the number of detected new cases of HAV infection in
Scotland has been generally falling, with a peak in 2001 when an outbreak of HAV
among injecting drug users in Aberdeen contributed to a figure of 148 cases. In
2010 there were 36 cases detected. Under-reporting is an issue as many people
only suffer only mild illness so never approach their GP.
Source: Health Protection Scotland 2012.
No Lothian-specific HAV data are available.
Blood borne virus resource pack 2014 © NHS Lothian
10.
SECTION REFERENCES
Department of Health (2002) Getting Ahead of the Curve – A Strategy for Combating
Infectious Diseases
ECDC TECHNICAL REPORT (2010) Surveillance and prevention of hepatitis B and C in
Europe
McCallum, A., Evans, C., Massaro-Mallinson, M., Rostant, M. (2007) AIDS Control Act
1987 - Report 2006-2007
Health Protection Agency (2012a) Hepatitis C in the UK 2012 report
Health Protection Agency (2012b) Shooting Up - Infections among people who inject
drugs in the UK 2011, An update: November 2012
Health Protection Agency (2012) HIV in the United Kingdom: 2012 Report
Health Protection Agency (2012) Hepatitis A Laboratory Reports and Statutory
Notifications, England and Wales, 1997-2009
Health Protection Scotland (2011) HPS Weekly Report 23 November 2011 Vol 45 No.
2011/47. Available at: http://www.documents.hps.scot.nhs.uk/ewr/pdf2011/1147.pdf
Health Protection Scotland (2011a) HPS Weekly Report 08 February 2012 Vol. 46 No.
2012/06. Available at: http://www.documents.hps.scot.nhs.uk/ewr/pdf2012/1206.pdf
Health Protection Scotland (2012) Hepatitis A: 10 year data set. Available at:
http://www.hps.scot.nhs.uk/giz/hepatitisa.aspx
Hepatitis B Expert Group (2007) European Orientation Toward the Better Management of
Hepatitis B in Europe. Available at:
http://www.hepb.org.uk/news/archive/spring_2008_03_03/new_recommendations_from_e
uropean_hepatitis_b_expert_group
Hepatitis B Foundation (2007) Rising Curve, Chronic Hepatitis B infection in the UK.
Available at: http://www.hepb.org.uk/information/resources
Hutchison, S.J., Roy, K.M., Wadd, S., Bird S.M., Taylor, A., Anderson, E., Shaw, L.,
Codere, G., and Goldberg, D.J. (2006) 'Hepatitis C Virus Infection in Scotland:
Epidemiological Review and Public Health Challenges'. Scottish Medical Journal Vol 51,
Issue2, pp 8-15. Available at:http://scm.sagepub.com/content/51/2/8.abstract
Scottish Government (2011) The Sexual Health and Blood Borne Virus Framework 20112015. Available at: http://www.scotland.gov.uk/Publications/2011/08/24085708/0
UNAIDS (2013) Report on the global AIDS epidemic. Available at:
http://www.unaids.org/en/media/unaids/contentassets/documents/epidemiology/2013/gr20
13/UNAIDS_Global_Report_2013_en.pdf
World Health Organization (2000) Hepatitis A. Available at:
http://www.who.int/csr/disease/hepatitis/whocdscsredc2007/en/index.html
World Health Organization (2002) Hepatitis C. Available at:
http://www.who.int/csr/disease/hepatitis/whocdscsrlyo2003/en/index.html
Blood borne virus resource pack 2014 © NHS Lothian
11.
World Health Organization (2002b) Hepatitis B. Available at:
http://www.who.int/csr/disease/hepatitis/whocdscsrlyo20022/en/
World Health Organization (2013) Global Alert and Response: Hepatitis - Fact Sheets
(July 2013). Available at: http://www.who.int/csr/disease/hepatitis/en/index.html
Blood borne virus resource pack 2014 © NHS Lothian
12.
TRANSMISSION
SUMMARY
• The main routes of transmission of HIV and hepatitis B are sexual, blood-to-blood
and mother-to-child.
• The main route of transmission of hepatitis C is blood-to-blood, especially
through injecting drug use.
• Hepatitis A is mainly transmitted through the oral-faecal route and specifically
linked to poor hygiene.
SECTION LINKS FOR TRANSMISSION
Table showing relative risks of transmission
HIV transmission
Hepatitis C transmission
Hepatitis B transmission
Hepatitis A transmission
This section looks at the way HIV, HCV, HBV, and HAV are passed from individual to
individual. Although there are similarities in the routes of transmission, there are also
some important differences.
Blood borne virus resource pack 2014 © NHS Lothian
13.
SUMMARY OF RELATIVE RISKS OF TRANSMISSION
The following table shows the relative risks of transmission from a positive source for
all the viruses – however, these figures must be viewed with a degree of caution as risks
vary between individuals and situations.
TABLE 1
Hepatitis C
Hepatitis B
HIV
Hepatitis A
Parenteral
(blood to blood)
Medium
High:
(if ‘e’ antigen
positive)
High:
Blood
transfusion
Medium:
Sharing
injecting
equipment
Low:
Blood spill /
needle-stick
Low
Sexual
transmission
(unprotected
intercourse)
Low:
less than 5%
lifetime
perceived risk
in monogamous
heterosexual
couples
High:
around 40%
risk through
sexual contact
with someone
with active HBV
–e antigen /
high DNA levels
Medium:
0.08% risk in a
single
unprotected
vaginal sex; up
to 18 times
higher (1.44%)
with anal sex
Low:
risk through
oral-faecal
route during
sexual contact
and higher
potential in
MSM
Needle-stick
injury from
infected person
3-10%
30%
0.3%
Low
Close
household
contact
None:
avoid sharing
razors,
toothbrush
Low to
Medium:
immunise
household and
avoid sharing
razors,
toothbrush
None:
avoid sharing
razors,
toothbrush
High:
if poor hygiene
Low:
if good hygiene
Vertical
(Mother-tochild)
transmission
rates with no
intervention
5% (increases
in co-infection
with HIV)
Up to 85%
15-25%
Very low risk by
oral-faecal
route during
delivery
Vertical
transmission
rates with
appropriate
interventions
5% - no
effective
intervention
identified.
No evidence of
transmission
through breast
milk
<5% if active
and passive
immunisation
given to
neonate
<2% using
antiretroviral
therapy for
mother and
neonate and
avoiding
breastfeeding
No effective
intervention
identified
Blood borne virus resource pack 2014 © NHS Lothian
14.
HIV TRANSMISSION
HIV is present in blood (including menstrual blood), semen, vaginal fluids, and breast milk.
The virus is also thought to be transmissible in saliva although it is known to be a far less
risky route of transmission when compared to other bodily fluids (BHIVA, 2012). HIV is a
fragile virus which normally dies quickly when outside the body (i-base 2007a).
The main transmission routes for HIV are:
• Blood-to-blood contact
• Sharing of drug injecting equipment (needles, syringes, spoons, filters, blood
contaminated water) (NAT, 2010)
• Blood transfusions (unscreened blood and blood products) – risk almost nil in the
UK since the introduction of screening techniques in 1985. Possible risk of
transmission during medical procedures and blood transfusion in other countries
with varying adherence to infection control policy
• Very rarely through occupational accidents such as needle-stick injuries.
• Sexual
• Unprotected anal or vaginal intercourse
• Unprotected oral sex.
The likelihood of sexual transmission is increased when either individual has an untreated
sexually transmitted infection (STI) (NAM 2006) – see the Sexual and Reproductive
Health section for further details.
• Mother-to-child (vertical transmission)
• Without treatment the risk of transmission during pregnancy is around 25% (UK
and Europe)
• Transmission can take place while the baby is in the womb (intrauterine), but
normally happens during childbirth (vaginal delivery) or through breastfeeding
• The risk of transmission can be reduced to below 2% with effective treatment and
obstetric management of the mother and baby (for further details see the
Pregnancy section).
Source: BHIVA, 2012.
HEPATITIS C TRANSMISSION
HCV has been detected in various body fluids, however, blood has been identified as the
main route of infection (SIGN, 2006). The virus on average can remain infectious for 16
hours outside of the body but this can extend to 4 days (Kamili et al 2007).
The transmission routes for HCV are:
• Blood to blood
• Sharing needles, syringes and all other related drug injecting equipment is an
important route of transmission. Equipment includes spoon (cooker), cups, water,
filters, swabs, tourniquets, preparation surfaces and home made equipment, e.g.
compass, guitar string (especially used in prison). There is a low risk of
transmission shown in those who have shared straws used for snorting drugs
• Blood transfusion and blood products – since September 1991, when screening
of blood donors was introduced, the risk of transmission via this route in resource
rich countries has been extremely low. There are countries with varying or no
screening protocols which have significant levels of HVC prevalence
• Before screening of blood in the UK, haemophiliacs accessing transfusions were
exposed to HCV. This has led to a higher prevalence of hepatitis C in this group
than the general population.
Blood borne virus resource pack 2014 © NHS Lothian
15.
• Sexual transmission (unprotected sex)
• The risk of sexual transmission of hepatitis C is low. Studies of monogamous
heterosexual couples where one partner was positive for hepatitis C and the
other negative showed an HCV incidence of below 1% for every 190,000 sexual
intercourse acts (American Association for the study of Liver Disease, 2012)
• Increased risk of sexual transmission is linked to co-infection with HIV, increasing
number of sexual partners, men who have sex with men (MSM), sexually
transmitted infections (STIs), duration of relationship and chronic liver disease
• Risk increases with trauma to the vaginal and/or anal mucosa which can present
in tissue tearing and the possible exchange of blood (Turner et al 2006) The anal
mucosa is thought to be more susceptible to tearing than vaginal tissue giving a
possible higher risk of transmission
• Risk may also increase during the menstrual period (i-base, 2007a, SIGN, 2006).
• Mother-to-child
• The risk of mother-to-child (MTC) transmission in the UK is approximately 5%
• There are no proven interventions to reduce the risk of MTC transmission
Screening during pregnancy may be beneficial to allow the mother to minimise
risk of transmission to other adults
• There is no evidence to link breastfeeding to an increased risk of transmission
but breastfeeding is not recommended if nipples are cracked or bleeding
• The risk of MTC transmission increases to 10% if the mother is co-infected with
HIV – in the case of a co-infected mother, Caesarean Section is considered
• Babies born to hepatitis C PCR +ve mothers are followed up by a specialist at the
Royal Hospital for Sick Children – see the Services section.
• Non-sterile medical and dental procedures
• There is a risk of transmission if equipment is not sterilised properly; this may be
more likely in resource poor countries.
• Unsterile tattooing and/or body piercing
• Non sterile procedures during body piercing, tattooing, acupuncture, etc. have
been associated with transmission.
• Household contact and sharing toiletry items
• Sharing razors, toothbrushes, nail scissors or other household items poses a
potential risk if the shared item is contaminated with positive HCV blood.
• Occupational exposure
• Occupational injuries, e.g. needle-stick injury (risk approx. 10%) and exposureprone procedures – see the Infection Control section.
HEPATITIS B TRANSMISSION
The hepatitis B virus is transmitted by blood to blood, seminal and vaginal fluid and
contamination of mucous membranes. HBV is up to 100 times more infectious than HIV
and can survive for up to 7 days outside of the body. (WHO, 2012). Hepatitis B is mainly
an imported infection into the United Kingdom.
Blood borne virus resource pack 2014 © NHS Lothian
16.
The transmission routes for HBV are:
• Blood to blood
• Sharing any drug injecting equipment, i.e. needles, syringes, filters, water, spoon
etc and lesser possible risk of sharing straws for snorting drugs
• Blood or blood products – all blood in the UK is screened for HBV but travellers to
countries where screening is not routine may be at risk. In general the current risk
of transfusion transmitted infections is very remote in the UK (HSE, 2010),
although there may be variations for some ethnic minority populations living in
Lothian who were born in or who travel regularly to visit family and friends in high
prevalent countries.
• Sexual transmission
• Any sexual activity which involves the possibility of exchange of body fluids
between individuals, e.g. semen, vaginal fluid, saliva and blood. Sexual
transmission and intravenous drug use accounts for most HBV transmissions in
the UK.
Source: BASHH, 2008.
• Mother-to-child
• Routine antenatal screening in the UK now means this is rare. Immunisation of
the baby can cut the risk to nearly zero but without intervention the risk of motherto-child transmission can be up to 90%. Breastfeeding is deemed OK where the
baby has started a course of immunisation at birth.
Source: BASHH, 2008.
• Unsterile medical and dental procedures
• There is a risk of transmission if equipment is not sterilised properly; this may be
more likely in resource poor countries.
• Unsterile tattooing and body piercing
• Body piercing, tattooing, and acupuncture using unsterile equipment have been
associated with transmission.
• Household contact and sharing toiletry items
• HBV is easily transmittable through household contacts (e.g. children playing,
sharing toothbrushes or razors etc), than compared to HIV and HCV.
• Saliva
• There are small amounts of HBV in saliva which could potentially carry a low risk
of transmission if it contaminates an open wound (e.g. human bite).
• Occupational risk
• Needle-stick injury (30% risk of transmission from ‘e’ antigen positive source)
• High risk during exposure prone procedures – see the Infection Control section.
HEPATITIS A TRANSMISSION
Hepatitis A (HAV) is mainly transmitted through the oral-faecal route (normally from
person to person or by eating food or drinking water contaminated by particles of faeces).
The virus is passed in the faeces of infected individuals. Transmission is usually linked
with poor sanitation and hygiene and is endemic in resource poor countries.
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17.
The transmission routes for HAV are:
• Blood and blood products
• Transmission through infected blood and blood products is extremely rare
• Sharing injecting equipment and paraphernalia
• Injecting drug use is linked with an increased risk of transmission. However this
can be through a combination of factors such as poor general hygiene, poor
injecting practices, and exposure to infected blood through sharing injecting
equipment. It is thought that the parenteral route (blood to blood) of transmission
does occur, but rarely. There have been reports of sporadic hepatitis A outbreaks
in injecting drug users.
• Mother-to-child
• Very low risk of transmission and some reported cases but thought to be related
to the oral-faecal route during delivery.
• Sexual transmission
• Hepatitis A could be transmitted sexually through the oral-faecal route during
sexual contact such as rimming (anal oral sex), fingering, fisting or oral sex after
anal sex. There have been recent cases amongst men who have sex with men.
Source: HPA, 2009.
• Occupational risk
• Risk to food handlers and sewage workers
• Healthcare workers at increased risk, especially those working in large
institutions and residential care for people with learning difficulties.
• Household contact
• High risk of transmission if there is poor hygiene – low if hygiene is good, i.e.
effective hand-washing and good sanitation during food preparation and personal
grooming/toilet routines.
Blood borne virus resource pack 2014 © NHS Lothian
18.
SECTION REFERENCES
Terrault, N et al (2013), 'Sexual transmission of hepatitis C virus among monogamous
heterosexual couples: The HCV partners study', Hepatology 57(3), pp 881-889
(DOI: 10.1002/hep.26164)
BASHH, BHIVA, and BIS (2008). 'Guidelines for HIV testing'. Available at:
http://www.bashh.org/documents/1838.pdf
BHIVA (2012). 'Guidelines for the Management of HIV Infection in Pregnant Women'.
Available at: http://www.bhiva.org/PregnantWomen2012.aspx
Health Protection Agency (2013). 'HIV in the United Kingdom: 2013 Report'. Available at:
http://www.hpa.org.uk/Publications/InfectiousDiseases/HIVAndSTIs/1311HIVintheUk2013r
eport/
HSE (2010). 'Advisory Committee on Dangerous Pathogens Protection against bloodborne infections in the workplace: HIV and Hepatitis'.
Available at: http://www.hse.gov.uk/biosafety/diseases/bbv.pdf
i-base (2013). 'Guide to hepatitis C for people living with HIV: testing, co-infection,
treatment and support'. Available at: http://i-base.info/guides/wpcontent/uploads/2013/11/HIV-and-HCV-coinfection-Nov2013e.pdf
Kamili, S., Krawczynski, K., McCaustland, K., Li, X., Alter, M.J. (2007). ‘Infectivity of
Hepatitis C Virus in Plasma After Drying and Storing at Room Temperature’. Infection
Control Hospital Epidemiology 28(5), pp 519-524
NAM (2006) 'Living With HIV'. London: NAM Publications. Available at:
http://www.aidsmap.com/Living-with-HIV/page/1550303/
Bernard, E.J. (2010). 'Towards a UK Consensus on ART and HIV Transmission Risk'.
Available at: http://www.nat.org.uk/Information-and-Resources/NATpublications.aspx#Prevention and Testing
SIGN (2013). 'Management of Hepatitis C – A National Clinical Guideline'. SIGN 133.
Available at: http://www.sign.ac.uk/guidelines/fulltext/133/index.html
Turner, J.M., Rider, A.T., Imrie, J., Copas, A.J., Edwards, S.G., Dodds, J.P., and
Stephenson, J.M. (2006). ‘Behavioural predictors of subsequent hepatitis C diagnosis in a
UK clinic sample of HIV positive men who have sex with men’. Sexually Transmitted
Infections 82(4), pp 298-300
WHO (2013). 'Hepatitis B Factsheet'.
Available at: http://www.who.int/mediacentre/factsheets/fs204/en/
Blood borne virus resource pack 2014 © NHS Lothian
19.
SIGNS AND SYMPTOMS
SUMMARY
• Human Immunodeficiency Virus (HIV)
Approximately 80% of individuals infected with HIV will have symptoms around
the time of infection which resemble a flu-like illness (seroconversion illness).
Late diagnosed or untreated HIV will compromise the immune system leading to
development of opportunistic infections and other symptoms/signs of HIV.
• Hepatitis C
An adult who has been exposed to HCV has up to an 80% chance of developing
chronic HCV which in many some cases if left untreated can lead to serious liver
problems.
• Hepatitis B
An adult who has been exposed to HBV has around a 5-10% chance of
developing chronic HBV which in some cases if left untreated can lead to serious
liver problems.
• Hepatitis A
Hepatitis A usually leads to a short term systemic illness from which the individual
recovers after 6-8 weeks. In very rare cases it can lead to more serious liver
problems.
This section outlines the signs and symptoms of HIV, hepatitis C, hepatitis B, and hepatitis
A, both short and long term.
An individual may be infected with a blood borne virus (or viruses) for many years before
they become aware of it. One of the most important issues for individuals is early
detection as this gives the option for early treatment. Early treatment is associated with an
improved outcome. In many cases early diagnosis also enables the individual to consider
making lifestyle changes and taking measures to prevent the onward transmission of the
virus(es).
SECTION LINKS FOR SIGNS AND SYMPTOMS OF BBVs
Summary of all BBVs key sign and symptoms
HIV signs and symptoms
Hepatitis C signs and symptoms
Hepatitis B signs and symptoms
Hepatitis A signs and symptoms
Psychological and Social Impact
Co-Infection Summary on BBVs
Blood borne virus resource pack 2014 © NHS Lothian
20.
KEY SIGNS AND SYMPTOMS OF ALL BBVS
TABLE 2
HIV
Hepatitis C
Hepatitis B
Hepatitis A
Clinical illness
at time of initial
infection (acute
illness)
80-90% of
adults
25-35% in
adults
30-50% in older
children / adults
Around 50% of
adults –
children rarely
symptomatic
% Becoming
chronic carrier
100%
Up to 80%
5%-10% of
healthy adults
0%
Asymptomatic
period
Average 10
years in UK –
wide variation
between
individuals
Very variable,
20-30 years in
some cases
Very variable
for adults –
15-30 years in
some cases
2-6 weeks
Progression in
carriers without
treatment
50% develop
symptomatic
disease within
10 years
5-15% progress
to cirrhosis
within 20 years
25% of adults
develop serious
liver disease
In most cases
full recovery in
6-8 weeks
Treatment
available – see
Treatment
section of this
chapter for
details
Antiretroviral
combination
therapy is very
effective at
suppressing
and slowing the
progression of
HIV
Pegylated
interferon and
ribavirin can
clear the virus
in 40-80% of
cases. Triple
therapy with
boceprevir and
telaprever
increases the
response in
people with
genotype 1
Oral antivirals
(tenofovir or
entecavir) or
pegylated
Interferon is
used to reduce
the amount of
virus in the
system and
slow
progression
Supportive and
symptomatic
treatment only –
no long term
illness
HIV DISEASE PROGRESSION
This section describes the progression of HIV and its complications if undiagnosed or
untreated.
HIV infection can generally be broken down into four clinical stages:
• 1. Primary infection
• 2. Clinically asymptomatic stage
• 3. Symptomatic HIV infection
• 4. Progression from HIV to AIDS
Source: NAM, 2013.
1. Primary HIV Infection
After being infected with HIV, the person may have a short illness usually known as
Primary HIV Infection (PHI) or seroconversion illness. This illness coincides with the
period when the body first produces antibodies to HIV.
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21.
HIV symptoms usually include:
• Rash
• Nausea
• Aches in the joints and muscles
• Diarrhoea
• Fever
• Fatigue
• Headache
• Mouth ulcers
• Swollen glands, often in the groin
Not everyone experiences the same symptoms. Symptoms are commonly attributed to
another cause (tonsillitis, glandular fever). Approximately 80% develop symptoms. A small
proportion of people develop a more severe illness. During PHI the viral load is high,
making transmission more likely.
2. Clinically asymptomatic stage
Once the acute initial infection has passed, a person may remain well for many years
(without any treatment) before illness develops. In the UK this asymptomatic stage lasts
for an average of 10 years with a wide variation between individuals. As the name
suggests this stage is usually free of any major symptoms although the individual may
have persistently swollen lymph glands. HIV is not ‘dormant’ during this stage.
Progressive suppression of the immune system is ongoing and the individual can pass on
infection.
3. Symptomatic HIV infection
Over time the immune system becomes severely damaged by HIV. This is thought to
happen for three main reasons:
• HIV mutates and becomes more pathogenic, in other words stronger and more
varied, leading to more T helper cell destruction
• The body fails to keep up with replacing the T helper cells that are lost.
Symptomatic HIV is mainly caused by the appearance of mild/moderate symptoms that
could include:
• Unexplained severe weight loss (over 10% of presumed or measured body weight)
• Unexplained chronic diarrhoea for longer than one month
• Unexplained persistent fever (intermittent or constant for longer than one month)
• Persistent oral candidiasis
• Oral hairy leukoplakia
• Pulmonary tuberculosis
• Severe bacterial infections (e.g. pneumonia, empyema, pyomyositis, bone or joint
infection, meningitis, bacteraemia)
• Acute necrotizing ulcerative stomatitis, gingivitis or periodontitis
• Unexplained anaemia (below 8 g/dl), neutropenia (below 0.5 billion/l) and/or chronic
thrombocytopenia (below 50 billion/l).
This stage is often diagnosed with the presence of some or all of the above symptoms
and emergence of opportunistic infections (see Table 3) that normally the immune system
could prevent. A full list of indicator conditions that should trigger HIV testing is available
in the UK National HIV Testing Guideline:
http://www.bhiva.org/documents/Guidelines/Testing/GlinesHIVTest08_Tables1-2.pdf
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22.
4. Progression from HIV to AIDS
Progression in duration and disease presentation varies dramatically between individuals.
As the immune system becomes more damaged, the illnesses that occur become more
severe, leading eventually to a diagnosis of AIDS (Acquired Immune Deficiency
Syndrome). In the UK, a diagnosis of AIDS is confirmed if a HIV positive person develops
one or more specific opportunistic infections or cancers and/or the CD4 count is below
200 cells/mm 3 (Common diseases are below in Table 3).
For further information on diagnostic criteria see
http://www.bhiva.org/documents/Guidelines/Testing/GlinesHIVTest08.pdf
A linear progression through the various stages does not occur in every case. People
have been known to become very ill, recover, and go on to remain well for years. A very
small number of people have never required treatment for their HIV and remain well
decades later.
TABLE 3: Common opportunistic infections
System
Examples of infection / cancer
Respiratory system
Pneumocystis carinii pneumonia (PCP)
Tuberculosis (TB)
Kaposi’s Sarcoma (KS)
Gastro-intestinal system
Cryptosporidiosis
Candida
Cytomegolavirus (CMV)
Isosporiasis
Kaposi’s Sarcoma (KS)
Nervous system (including eye)
Cytomegalovirus
Toxoplasmosis
Cryptococcosis
Non-Hodgkin's lymphoma
Varicella zoster
Herpes simplex
Skin
Herpes simplex
Kaposi’s Sarcoma (KS)
Varicella zoster
Source: Avert, 2013.
For further information on HIV see the following links:
http://www.avert.org/ and http://www.aidsmap.com/hiv-basics/
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23.
HEPATITIS C DISEASE PROGRESSION
People from the point of transmission up to six months are acutely infected and chronic
infection is defined as infection for six months or more.
Acute infection
Around 25-35% display symptoms at or around the time of infection. Symptoms at this
acute stage include:
• Fatigue
• Flu-like symptoms (fever,
headaches, sweats)*
• Weight loss
• Anxiety/Depression
• Loss of appetite
• Difficulty concentrating
• Joint pains
• Alcohol intolerance and pain in the
liver area
• Nausea and vomiting
*Often people mistake their symptoms for flu and do not realise they are infected.
Chronic Infection
Between 70% and 85% of individuals will go on to develop chronic infection. The
remainder will spontaneously clear the virus within the first six months.
All chronically infected persons are ‘carriers’ and remain infectious. Most people do not
realise they are chronically infected with HCV.
• People with chronic infection may not experience ill health, even over long periods
of time, whilst others experience various non-specific symptoms, particularly fatigue
• On average it takes 20 years of infection for significant liver scarring to develop
• Around 5% with cirrhosis will progress to liver failure or liver cancer annually.
Symptoms of chronic hepatitis C infection may include:
• Fatigue
• Fever
• Lethargy
• Abdominal pain
• Loss of appetite
• Nausea
• Weight loss
• Poor concentration and memory
• Muscle ache and joint pain
• Irritability
• Itching
• Anxiety
• Headache
• Mood swings
Source: Hepatitis C Trust (2012).
Advanced diseases related to chronic hepatitis C infection:
• Thyroid dysfunction
• Liver failure
• Type 2 Diabetes
• Liver cancer
• Depression
• Non-Hodgkins Lymphoma
• Cirrhosis
• Gall bladder disease
• Ascites, varices, encephalopathy
and other symptoms related to
decompensated cirrhosis
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24.
Long term outcomes without treatment:
• Some people will never develop liver disease
• Some people develop mild to moderate liver damage either with or without
symptoms
• The majority will develop liver cirrhosis within 20 to 40 years
• A number who develop liver cirrhosis will progress on to developing HCC or liver
failure.
Source: RCGP (2007).
Factors which can accelerate progression to cirrhosis include:
• Co-infection – with HIV, hepatitis B, hepatitis A
• Smoking
• Alcohol consumption
• Weight – increased if Body Mass Index above 25
• Age at infection – (older age = faster progression)
• Gender – men progress more rapidly than women
• Ethnicity – two US studies demonstrate more rapid progression in non-AfricanAmerican than African-American patients.
Source: SIGN (2006) and RCGP (2007).
For further guidance see the links below:
http://www.sign.ac.uk/guidelines/fulltext/133/index.html
http://www.smmgp.org.uk/download/guidance/guidance003.pdf
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25.
HEPATITIS B DISEASE PROGRESSION
People can be acutely (<6 months) or chronically (>6 months) infected with HBV.
Acute infection
Around 30-50% of adults will have symptoms in the acute phase, including:
• Nausea and vomiting
• Joint pain
• Diarrhoea
• Muscle aches
• Loss of appetite
• Fever
• Pain in the abdomen
• Rarely jaundice
• Malaise
Symptoms are often attributed to other causes and often people do not realise they are
infected. In rare cases (<1%), individuals will develop fulminant hepatitis, leading to liver
failure.
Symptoms of fulminant hepatitis include:
• High fever
• Jaundice
• Marked abdominal pain
• Hepatic encephalopathy
(associated with coma and seizures)
• Vomiting
Source: Chen and Morgan 2006; BASHH, 2008; Hepatitis B Expert Group, 2007.
Chronic infection
Around 5-10% of adults who are acutely infected go on to develop chronic infection.
Progression to chronic infection is much higher if infected during infancy or childhood.
People who develop chronic infection will become ‘carriers’ and most will remain
infectious.
• Cirrhosis is irreversible scarring of the liver and can lead to toxicity that affects the
brain, oesophageal varices, and fluid retention including ascites
• Up to 20% of persistently chronic hepatitis B cases will go on to develop cirrhosis
• The life time risk of developing hepatocellular carcinoma with chronic hepatitis b is
between 10% and 25%
• Without treatment, approximately 15% of those with cirrhosis will die within 5 years.
Source: Lundren et al, 2011; World Health Organisation, 2013.
For further guidance see the links below:
http://79.170.44.126/britishlivertrust.org.uk/home-2/looking-after-your-liver/viral-hepatitis-2/
http://www.bashh.org/documents/1927.pdf
Hepatitis B can be prevented through immunisation – see the Prevention section.
Blood borne virus resource pack 2014 © NHS Lothian
26.
HEPATITIS A DISEASE PROGRESSION
The course of hepatitis A can be extremely variable. Some infected individuals have only
a mild illness or remain asymptomatic; children generally belong to this group and only
very rarely develop jaundice. In other cases, hepatitis A is usually an acute (short-term)
infection and once people recover after around 6-8 weeks they have lifetime immunity. In
very rare cases, people can develop fulminant hepatitis, leading to liver failure.
Acute hepatitis A infection is divided into four clinical phases:
• 1. Incubation period
• 2. Prodromal phase (pre-jaundice stage)
• 3. Icteric phase
• 4. Convalescent period
1. Incubation period
This usually lasts between 15 and 50 days and the individual remains asymptomatic while
the virus replicates. At this stage the virus can be passed to others even though the
individual is unaware they are infected.
2. Prodromal phase (pre-jaundice stage)
Normally lasts a few days and consists of any or more of the following symptoms:
• Nausea and vomiting
• Fatigue
• Diarrhoea
• Low grade fever
• Loss of appetite
• Dark urine
• Pain in the abdomen
• Pale stools
3. Icteric phase
At this phase clinical features can include fatigue, vomiting, diarrhoea, jaundice and
pruritus in 40% cases with jaundice. Patients often seek medical help. Fever usually
improves after the first few days of jaundice. Faeces remain infectious for a further 1-2
weeks although the virus is at very low levels in the blood at this stage. Fulminant
hepatitis can develop in rare cases (1 in 1,000). Studies show that injecting drug users
(IDUs) who become infected with hepatitis A are more likely to progress to fulminant
hepatitis.
Source: Wells et al, 2006.
4. Convalescent period
Recovery is usually slow and on average takes two months from the point of infection
although can last up to six months. Symptoms in this phase include malaise and liver
tenderness, but is usually uneventful and complete. Following infection individuals
develop lifetime immunity to HAV.
Source: Health Protection Agency, 2009; NHS Choices, 2013.
For further guidance see the links below:
http://www.hpa.org.uk/web/HPAweb&Page&HPAwebAutoListName/Page/1200660055743
www.nhs.uk/Conditions/Hepatitis-A/Pages/Introduction.aspx
At risk individuals are advised to be immunised against HAV – see the Prevention section
for further details.
Blood borne virus resource pack 2014 © NHS Lothian
27.
THE PSYCHOLOGICAL AND SOCIAL IMPACT OF BLOOD BORNE VIRUSES
Prevalence levels of depression and anxiety are commonly higher in individuals with
hepatitis B and C and HIV than compared to the general population. Hepatitis C is a
neurotropic virus, infecting brain cells, and directly causes cognitive problems in infected
individuals.
Common psychological reactions can include:
• Shock, numbness and disbelief
• Often experienced at time of diagnosis
• In finding out about the source of infection
• Fear and anxiety of
•
•
•
•
• Depression from
• Altered self-image and low self-esteem
• Prolonged illness or treatment failure
• Anger
• At discovering source of infection
• As part of grief reaction
• Towards medical profession for lack of
‘cure’
• Uncertainty about
• The future
• Treatment success
• Who will look after children if they become
ill or die
• Loss off
•
•
•
•
• Grief
• Coming to terms with chronic illness, death
and dying
• Losing other HIV/HCV positive friends,
partner or children
• Guilt
• In finding out that a sexual partner or
children are infected
• Stigma
• In family, community, culture
• At school or place of work
• Discrimination with
• Insurance and mortgages
• Travel and employment opportunities
• Access to treatment
Becoming unwell
Infecting others
Sexual activity and relationships
Other people finding out about diagnosis
Healthy identity
Future plans and aspirations
Sexual freedom
Employment and income
Source: NAT, 2013; Grundy and Beeching, 2004; Tompkins, 2005.
For further guidance see the link below:
http://www.nat.org.uk/Information-andResources/New%20publications.aspx#healthandsocialcare
Psychosocial support is offered by a number of agencies throughout Lothian.
See the Services section for details.
Blood borne virus resource pack 2014 © NHS Lothian
28.
CO-INFECTION SUMMARY
• Co-infection increases the risk of transmission.
• Individuals with HIV, hepatitis B, or hepatitis C are likely to experience more
severe symptoms if infected with hepatitis A and progression of hepatitis B and C
is accelerated with the presence of HIV.
• Testing for all blood borne viruses is advisable if at risk or already diagnosed with
a BBV.
• Progression of hepatitis B and C is accelerated with the presence of HIV.
• Immunisation against hepatitis A and B is strongly recommended for people
diagnosed with HIV and/or hepatitis C or are at risk of contracting BBVs.
• People who are co-infected tend to respond less well to hepatitis treatment and
hepatitis can reduce the effectiveness of HIV medication).
In the UK around 5% to 10% of HIV positive people are co-infected with HCV. It is
estimated that a similar percentage is co-infected with HBV.
Source: BHIVA, 2010.
Co-infection with HIV/HCV is more common in those infected through the parenteral route
(blood to blood). Co-infection with HIV/HBV is more commonly seen in those infected
through sexual contact.
Source: BHIVA.
For further guidance see the links below:
http://www.bhiva.org/Guidelines.aspx
http://i-base.info/guides/hepc
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29.
HIV and HCV
• Individuals who have a compromised immune system due to HIV may not produce a
detectable antibody response to HCV – a PCR test is more sensitive in these cases
(see the Testing section)
• HIV appears to accelerate progression of hepatitis C
• As people are living longer with HIV due to improved treatment, end-stage liver
disease from hepatitis C co-infection has become a leading cause of death among
HIV-positive people in Europe
• The impact of hepatitis C on HIV disease progression is less clear although
individuals who are co-infected with HIV/HCV are more likely to experience
unwanted effects from their HIV medication (HCV co-infection increases the risk of
liver toxicity by 2-3 times). This can lead to a drop in adherence levels and
compromises treatment outcomes
• There have been several studies reporting a large number of cases of sexual spread
of hepatitis C in UK among men who have sex with men (MSM) – usually HIV
positive. It appears that co-infection with HIV may increase the likelihood of sexual
transmission
• HIV/HCV co-infected individuals are more likely to experience severe symptoms if
infected with HAV or HBV.
Source: i-base, 2009; NAM, 2012; BHIVA, 2010.
HIV and HBV
• Individuals with HIV who are exposed to HBV are more likely to develop chronic
HBV infection than those who do not have HIV
• HIV appears to accelerate the progression of hepatitis B
• The impact of hepatitis B on HIV disease progression is less clear although
individuals co-infected with hepatitis B are more likely to experience unwanted
effects from HIV medication and therefore do not seem to be able to adhere to
medication regimes as well as individuals with HIV alone – this compromises
treatment outcomes
• Individuals with HIV are less likely to respond to treatment for hepatitis B
• HIV/HBV co-infected individuals are likely to experience more severe symptoms if
infected with HAV or HCV.
Source: BHIVA, 2010; Cooper, 2007; Chun and Landrum, 2007; Lundgren et al, 2011.
HBV and HCV
• Dual infection with HBV/HCV leads to more severe liver disease, and an increased
risk of progression to liver cancer compared to mono-infected individuals
• Usually there is an interaction between the two viruses leading to suppression of
one and over time there can be wide variation in virus activity
• When exposed to a viral hepatitis, the risk of developing fulminant hepatitis is
increased in individuals with pre-existing liver problems such as hepatitis B or C
• Adequate response for treating hepatitis C or B is more complex and less clear in
co-infected individuals compared to mono-infected individuals.
Source: Chu and Lee, 2008; Liu and Hou, 2006; Sagnelli et al, 2006.
HIV, HBV and HCV
• Chronic infection with HBV significantly increases risks for people with HIV and HCV
• It is associated with a high risk of accelerated progression to cirrhosis, liver cancer
and increases mortality risk by 75%
• Individuals are likely to experience unwanted effects from HIV medication and
therefore adherence and outcomes may be compromised
• Individuals are less likely to respond to treatment for hepatitis B or C.
Source: Chun and Landrum, 2007; Teira, 2013; Sollima et al 2007.
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30.
TREATMENT
Individuals who are co-infected should be referred to the Regional Infectious Diseases
Unit (RIDU) for assessment and treatment.
BHIVA have produced guidelines on treatment for co-infection with HIV and hepatitis C,
and HIV and hepatitis B available at: http://www.bhiva.org/HepBC2010.aspx
Blood borne virus resource pack 2014 © NHS Lothian
31.
SECTION REFERENCES
Avert (2013) 'Different Stages of HIV'. Available at: www.avert.org
Chen, S.L., Morgan, T.R. (2006) ‘The Natural History of Hepatitis C Virus (HCV) Infection’.
International Journal of Medical Science 3, pp 47-52
British Association of Sexual Health and HIV – Clinical Effectiveness Group (2008),
'United Kingdom National Guideline on the Management of the Viral Hepatitides A, B,& C
2008'. Available at: http://www.bashh.org/documents/1927.pdf
BHIVA (2010) 'Management of coinfection with HIV-1 and hepatitis B or C virus'. Available
at: http://www.bhiva.org/HepBC2010.aspx
Chun, H., Landrum, M. (2007) ‘Liver-related complications in HIV infected individuals.’
Infectious Diseases in Clinical Practice 15(1), pp 38-48
Cooper, C. (2007) ‘HIV antiretroviral medications and hepatoxicity’. Current Opinion. HIV
and AIDS 2, pp 466-473
Lundgren, J., Peters, L., Eramova, I., (Eds.) (2011) 'Management of Hepatitis B and HIV
Co-Infection – Clinical Protocol for the WHO European Region'. Available at:
http://www.euro.who.int/__data/assets/pdf_file/0011/152012/e95792.pdf
Grundy, G., Beeching N. (2004) ‘Understanding social stigma in women with hepatitis C’.
Nursing Standard 19(4), pp 35-39
Health Protection Agency (2009) 'Guidance for the Prevention and Control of Hepatitis A'.
Available at:
http://www.hpa.org.uk/web/HPAweb&Page&HPAwebAutoListName/Page/1200660055743
Hepatitis B Expert Group (2007) 'European Orientation towards the Better Management of
Hepatitis B in Europe'. Available at: http://www.ilcuk.org.uk/files/pdf_pdf_36.pdf
i-base (2013) 'HIV and Hepatitis C'. Available at: http://i-base.info/guides/hepc
Liu, Z., Hou, J. (2006) ‘Hepatitis B Virus (HBV) and Hepatitis C Virus (HCV) Dual
Infection’. International Journal Medical Science 3, pp 57-61
NAM (2013) 'HIV transmission'. Available at: http://www.aidsmap.com/hivbasics/Transmission/page/1412438/
NAT (2013) NAT Publications. Available at: http://www.nat.org.uk/Information-andResources/New%20publications.aspx#healthandsocialcare
NHS Choices (2013) 'Hepatitis A'. Available at: http://www.nhs.uk/conditions/hepatitisa/pages/introduction.aspx
RCGP (2007) 'Guidance for the prevention, testing, treatment & management of hepatitis
C in primary care'. Available at:
http://www.smmgp.org.uk/download/guidance/guidance003.pdf
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32.
Sagnelli, E., Coppola, N., Marrocco, C., Onofrio, M., Sagnelli, C., Coviello, G., Scolastico,
C., Filippini, P. (2006) ‘Hepatitis C virus superinfection in hepatitis B virus chronic carriers:
a reciprocal viral interaction and a variable clinical course'. Journal of Clinical Virology 35
(3), pp 317-320
Sollima, S., Caramma, I., Menzaghi, B., Masseto, B., Acquaviva, V., Giuliani, G., Moroni,
M., Antinori, S. (2007) ‘Chronic coinfection with Hepatitis B and Hepatitis C viruses in an
Italian population of HIV Infected patients.’ Journal of Acquired Immune Deficiency
Syndrome, 44(5), pp 606-607
The Hepatitis C Trust (2012) 'Stages of HIV'. Available at:
http://www.hepctrust.org.uk/Hepatitis_C_Info/Stages+of+Hepatitis+C/Introduction
Teira, R. (2013) 'Hepatitis B virus infection predicts mortality of HIV and hepatitis C virus
coinfected patients'. AIDS 27(5), pp 845-848
Tompkins, C.N., Wright, N.M., Jones, L. (2005) ‘Impact of a positive hepatitis C diagnosis
on homeless injecting drug users: a qualitative study’. British Journal of General Practice
55(513), pp 263-268
Wells, R., Fisher, D., Fenaughty, A., Cagle, H., Jaffe, A. (2006) 'Hepatitis A prevalence
among injecting drug users'. Clinical Laboratory Science 19(1), pp 12-17
World Health Organisation (2013) Hepatitis B: Factsheet No 204. Available at:
http://www.who.int/mediacentre/factsheets/fs204/en/index.html
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33.
PREVENTION (Risk Reduction Strategies and
Immunisation)
Reducing the risk of BBV transmission
SUMMARY
The risk of transmission of blood borne viruses can be reduced by:
• Immunisation against hepatitis A and B for all those at risk – (see the next page).
• Practising safer sex (i.e. using condoms if having penetrative or oral sex).
• Only using your own sterile equipment for using and preparing drugs – i.e. do not
share any needles or syringes, other injecting equipment (foil, filters, tourniquet,
water) or other non injecting drug use equipment (snorting equipment, pipes).
• Using sterile equipment for body piercing, tattooing (do not share ink),
acupuncture and electrolysis.
• Using infection control procedures to avoid cross infection (e.g. standard
precautions, hand washing, cleaning up blood and body fluids carefully).
• Post-exposure prophylaxis, e.g. after high-risk sexual exposure (PEPSE) or after
occupational accidents such as needle-stick injury (PEP).
• Testing and treatment for mother during pregnancy and also for infant after birth
to reduce the risk of vertical ‘mother-to-child’ transmission – see Pregnancy
section.
• Only using your own personal items such as razors, toothbrushes, scissors,
tweezers, which may have tiny amounts of blood and/or saliva on them.
• Good access to effective BBV treatment: effective treatment reduces the chance
of an infected individual passing on a BBV.
• Good access to effective substitute prescribing such as methadone or suboxone
has been show to reduce BBV risk behaviours such as frequency of injecting.
• Good access to sterile injecting equipment from Injection Equipment Provision
sites (click on the link to access the list of IEP sites).
SECTION LINKS FOR PREVENTION
Groups to target for BBV prevention interventions
Hepatitis B immunisation target group
Hepatitis A immunisation target group
Immunisation schedules for hepatitis B and A
Schedule immunisation guidance for drug-using groups
Immunisation – Incomplete courses
Reducing the risk of sexual transmission of BBVs
Negotiating 'Safer' Sex
Travel advice
Reducing the risk of transmission of BBVs in drug-using groups
Promoting safer injecting practices
Occupational injuries
Clearance for healthcare workers
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Groups to target for BBV prevention interventions:
• People infected with blood borne viruses (e.g. HIV or hepatitis C positive, hepatitis B
‘carriers’)
• Sexual partners of people with a BBV
• At risk contacts, e.g. partners, children and household contacts of known infected
persons (Hep B ‘carriers’)
• Drug users
• Men who have sex with men
• Sex industry workers and their clients
• Communities and individuals from areas of high seroprevalence, e.g. African,
Chinese communities
• Those serving a custodial sentence
• Homeless individuals
• Gypsy/Traveller community
• People travelling to or from areas of high seroprevalence, e.g. Africa, Asia and
Eastern Europe (see the Background and Epidemiology section for more details).
HEPATITIS A AND B IMMUNISATION ('VACCINATION') TARGET GROUPS
Hepatitis B Immunisation
Immunisation is recommended for:
• People infected with other blood borne viruses
• People with a history or current injecting drug use or other forms of non injecting
drug use
• Sexual partners and close contacts of injecting drug users
• Pregnant women at risk of infection (e.g. partner is an injecting drug user)
• Babies / children born into families experiencing problem drug use
• Babies of infected (‘carrier’) mothers
• At risk contacts, e.g. partners, children and household contacts of known infected
persons (Hep B ‘carriers’)
• Individuals who change sexual partners frequently
• Prisoners
• Men who have sex with men
• Sex industry workers and their clients
• People with chronic liver disease
• Individuals receiving regular blood or blood products and their carers
• Patients with chronic renal failure requiring haemodialysis
• Those exposed to hepatitis B infection, e.g. needle-stick injury, mucosal or nonintact skin exposure (given PEP)
• Individuals at occupational risk – including all NHS staff, laboratory staff, and others
at occupational risk such as prison staff, embalmers, etc.
• Foster carers
• Individuals in residential accommodation for those with learning disabilities
• Those travelling to or going to reside in and families adopting children from countries
with a high or intermediate prevalence,
http://www.nathnac.org/pro/factsheets/hep_b.htm
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Hepatitis A Immunisation
Immunisation is recommended for:
• People infected with HIV, HCV, HBV
• Travellers to countries of high prevalence
• Men who have sex with men
• Injecting drug users
• People with chronic liver disease
• Individuals at occupational risk
• Those exposed to hepatitis A infection (given as Post-Exposure Prophylaxis – see
the section on PEP).
Hepatitis A immunisation usually involves two doses of vaccine, given 0 and 6-12 months.
Studies show that good levels of immunity are achieved even when the second dose is
delayed by several years (Salisbury et al 2006). Immunity lasts for at least 10 years after
the booster dose.
Pregnancy is not a contra-indication for immunisation.
For further information see the following two links:
https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/148308/Gre
en-Book-Chapter-18.pdf.
NHS Lothian Guidelines 2012 on Immunisation of Drug Users and their Families.
IMMUNISATION SCHEDULES FOR HEPATITIS B AND A
There are several schedules for immunisation (see Tables below). The choice of schedule
depends on several factors, including adherence issues, risk factors (e.g. injecting),
opportunity and local policy. For example, prisoners may get a super accelerated course
so that the immunisation can be completed before release.
Hepatitis B vaccine schedules
Table 1
Injections
Routine Schedule
Accelerated
Schedule
(Recommended)
Super-accelerated
Schedule
1st injection
0 months
0 months
0 days
2nd injection
1 month
1 month
7 days
3rd injection
6 months
2 months
21 days
4th injection
Not applicable
12 months
12 months
• Super-accelerated schedule licensed for Engerix B vaccine only in adults. It may be
used in individuals aged 16 to 18 in an unlicensed capacity where rapid protection is
required or compliance may be an issue
• Babies born to hepatitis B infected mothers require a pre-school booster dose of
vaccine at 39 months of age.
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Hepatitis B and A vaccine schedules for immunisation of drug users
All past and current injecting drug users and drug users with HIV and / or HCV should be
offered HBV and HAV.
Table 2
Injections
HBV Accelerated Schedule plus
vaccination: separate vaccines
HAV HBV & HAV (Twinrix)
Super-accelerated
Schedule
HBV
HAV
1st injection
0 months
0 months
0 days
2nd injection
1 month
No 2nd injection
7 days
3rd injection
2 months
No 3rd injection
21 days
4th injection
12 months
6-12 months booster
12 months
Schedule hepatitis immunisation guidance for drug-using groups
• Past and current injecting drug users: Hep A and Hep B immunisation is
recommended. Single Hep A and Hep B vaccination is recommended for use in
primary care. Twinrix vaccination only contains half the amount of single Hep A
vaccine. Administer an accelerated schedule of hepatitis B in order to maximise
compliance and early immunity; administer hepatitis A separately in a different site.
Other schedules can be considered if it encourages administration and full
immunisation. The recommended and alternative schedules for drug users are
shown in Table 2
• Any drug users infected with HIV or Hep C: Hep A and Hep B immunisation is
recommended as shown in Table 2
• Non-injecting drug users: Single Hep B vaccination is recommended at the
accelerated schedule in Table 1
• Household and sexual contacts of drug users: Single Hep B vaccination is
recommended at the accelerated schedule in Table 1
• Babies born at risk of peri-natal transmission, babies born to parents with
problematic drug use, babies born to those mothers with HIV: Single Hep B
vaccination is recommended at the accelerated schedule in Table 1. See the
hyperlink on the next page to take you to the policy for babies at risk
• Immunisation against hepatitis A and hepatitis B can be given under Patient Group
Direction (PGD) – PGDs should be kept in each clinical area – ask your manager for
details
• Document immunisations in patient’s notes and according to PGD
• Ensure system for follow up / recall for patients who do not return to finish course
• For individuals at risk of occupational exposure and patients with renal failure, check
antibody levels 8 weeks post-completion of immunisation course. A booster can be
given if antibody level too low for full immunity Some people (around 10%) will be
‘non-responders’ so may never achieve immunity and should be given advice about
PEP – see the section on PEP
• The ‘Green Book’ recommends offering a one-off booster around five years after
immunisation for those at continuing risk of infection (Salisbury et al 2006 updated
reference)
• Immunisation for hepatitis B is currently thought to provide life-long protection for the
majority of the population immunised.
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Immunisation – Incomplete courses
If a patient presents with a confirmed history of incomplete immunisation then give the
remaining doses. In this situation there is no need to restart the course (BASHH 2008). If
previous doses of immunisation cannot be confirmed then restart the course – serological
confirmation of response is only recommended for those at risk of occupational exposure
and patients with renal failure.
See Immunisation against Infectious Disease (2013), also known as "The Green Book’’,
Chapter 17 (Hepatitis A) and Chapter 18 (Hepatitis B), Department of Health.
NHS Lothian (2012) has produced guidance for the immunisation of drug users and close
contacts against hepatitis A and B.
NHS Lothian (2012) has also produced guidance for the immunisation of babies born to
parents experiencing problem drug use.
BASHH, 2008, Management of the viral hepatitides A, B and C.
http://www.bashh.org/documents/1927.pdf.
REDUCING THE RISK OF SEXUAL TRANSMISSION OF BBVs
Use the patient leaflet to initiate a discussion on Safer Sex and Blood Borne Viruses
Appendix F. This leaflet can be printed, photocopied double-sided, and given to the
patient.
‘Safer’ Sex
• Sexual activity within a long-term mutually monogamous relationship with an
uninfected partner is safe
• In any other circumstances practising safer sex (using barrier methods) can reduce
the risk of transmission of blood borne viruses, as well as other sexually transmitted
infections and unintended pregnancy
• Oral (hormonal) contraceptives or Intra-Uterine Devices (IUD) can offer a good level
of protection against unintended pregnancy but they do not protect against sexually
transmitted infections.
Condoms
• Consistent use of condoms or Femidom (the female condom) reduces sexual
transmission of BBVs as well as other STIs – see the Sexual and Reproductive
Health section for a guide to proper use
• A range of condoms are available. They come in all sorts of textures, flavours,
sensitivities, strengths, sizes and brands
• Oil-based lubricants such as Vaseline should not be used for anal or vaginal sex
• The ‘C Card’ scheme provides free condoms and sexual health advice via a number
of outlets (e.g. health centres and community projects). Contact the Harm Reduction
Team (Tel. 0131 537 8300) for a list of outlets and further information or see
http://www.ccard.org.uk/.
Anal sex
• Recommend the use of a water-based lubricant (e.g. KY Jelly)
• Oil based lubricants (e.g. Vaseline) should not be used as these can damage the
condom rubber
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• Stronger strength condoms (e.g. Mates Superstrong) can be used (with a water
based lubricant) but the effective use of a condom is more important than the
strength.
Oral Sex
• Oral sex (fellatio and cunnilingus) poses less risk for BBV transmission than anal or
vaginal sex
• Risk of BBV transmission can be reduced by using a condom or a dental dam
• Risk is increased if the person has poor dental hygiene or cuts and sores in the
mouth
• Avoid performing oral sex on a woman during menstruation
• Avoid semen in the mouth.
Other Sexual Practices
• Rimming (licking the anus) is associated with the transmission of hepatitis A
• Sex toys, like a dildo or vibrator, should not be shared – or if shared should have a
new condom put on them between each partner
• Risk is increased with any sexual activity that causes bleeding or genital trauma.
Post-Exposure Prophylaxis after Sexual Exposure (PEPSE)
Individuals can be offered treatment to reduce the likelihood of infection with either HIV or
hepatitis B following sexual exposure (PEPSE). There is no PEPSE available for hepatitis
C – see NHS Lothian Referral Guidelines, RefHelp.
NEGOTIATING SAFER SEX
Practising safer sex involves more than just getting a supply of condoms. It is just as
important to be able to negotiate safer sexual practices (e.g. the use of a condom) with a
sexual partner/s.
Safer Sex Negotiation Skills include:
• Being aware of one’s own sexual health needs and the risk of sexually transmitted
infections
• Having the confidence to raise the subject with a sexual partner
• Negotiating which sexual activities are desirable or acceptable
• Agreeing with a sexual partner about protection and contraception methods
beforehand
• Being able to say ‘no’ if safer sex is not possible
• Being able to deal with any form of coercion to practice unsafe sex
• Knowing how to deal with any problems that might occur, e.g. burst condoms
• The ability to predict risky situations and to stop them happening.
Unsafe sexual practices are often associated with drug and alcohol use. People are more
likely to engage in unprotected sex whilst intoxicated or under the influence of drink/drugs.
Some drugs reduce levels of anxiety and fear, some affect judgement, reaction times and
emotions, levels of consciousness and decision-making ability. It is therefore important
that people who use substances take time to consider how they might negotiate safer sex.
Issues that can create power imbalances between individuals, or that can create expected
behaviours can also affect the ability to negotiate. For example:
• Gender inequalities and norms, i.e. men can be expected to sleep with multiple
partners, where women can be expected to be passive and ignorant about sex.
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• Sometimes the expectations are that women are responsible for contraception and
should not require a male partner to use a condom
• In some cultures women are not allowed to choose their sexual partners or who they
marry
• In some religious sectors it is believed contraception should not be used and it is
possibly expected of women to have no choice over sexual health protection
• Women can also be more vulnerable to infection through their own or a partner’s
injecting drug use due to the difficulty of negotiating safer sex / safer injecting
practices especially if the male partner has control of the drug supply
• It can be difficult for those working in the sex industry, especially street workers, to
negotiate safer sex – sometimes more money can be made if riskier sex is
undertaken
• People with low self-esteem may find it hard
• People with learning disabilities or other communication issues can be vulnerable.
These power imbalances or expected roles should be taken into account when providing
treatment and care for individuals with, or vulnerable to, BBVs.
Travel advice
All people travelling abroad should be given the following advice in order to prevent BBV
transmission:
• Always practise safer sex, especially if having sex with locals in areas of high
seroprevalence, e.g. sub-Saharan Africa, parts of Asia and Eastern Europe
• Always take a good supply of condoms
• Get immunised against hepatitis A & B at least six months before travelling.
A useful Health Protection Scotland website that gives travel health information for people
travelling abroad from the UK is "Fit for Travel".
Note: the biggest risk for travellers is accidents/trauma, e.g. road traffic accidents. In
resource-poor countries hospitals and clinics may not have access to single use, sterilised
medical equipment, including clean needles and syringes. Blood transfusions may be
unsafe in countries with inadequate screening facilities. Think about BBV risk before being
treated. Consider taking travel kit for medical emergencies.
REDUCING THE RISK OF TRANSMISSION OF BBVs THROUGH INJECTING DRUG
USE
Discuss BBV prevention with ALL drug users, whether or not they report injecting. Always
promote safer injecting practices.
Use the patient leaflet (see Appendix G) to initiate a discussion on Injecting Drug use and
Blood Borne Viruses. This leaflet is designed to be printed out, photocopied double-sided,
and given to the patient.
Safer Injecting Practices can reduce the risk of:
• Blood borne viruses (HIV, hepatitis B and C) and hepatitis A
• Overdose
• Vein damage
• Infection from bacteria (e.g. abscesses, cellulitis, septicaemia, endocarditis)
• Increasing drug tolerance (dependence).
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Note:
• Lending, borrowing and sharing injecting paraphernalia is common practice among
injectors – it is hard to avoid any risk of transmission when injecting with others in
the same room
• Sharing is frequently reported with ‘sexual partners’ and ‘friends/acquaintances’
• Most people initiate injecting after hearing injectors talk about injecting, or after they
see someone else inject drugs, it can be commonplace at the start for someone else
• to do the injecting for them. It is advised to ask: Have you ever been injected by
others or have you injected others?
• Generally hepatitis C and B are more easily transmitted through sharing injecting
paraphernalia than HIV
• Commonly injected drugs include: heroin, cocaine, amphetamines (‘speed’), diconal,
cyclizine and steroids (intramuscular).
‘Sharing’ means sharing any of the following:
• Needles
• Syringes
• The preparation surface
• Water for injecting, and the cup/container
• Spoons (‘cookers’)
• Filters
• Acidifiers, e.g. lemon juice, vinegar, Vitamin C, citric acid
• Swabs
• Tourniquets
• Straws (for snorting drugs – most commonly cocaine/amphetamines)
• Other utensils, such as knives and lighters
• Unsafe disposal and re-sheathing of needles
• Methods of dividing doses, i.e. ‘frontloading’ and ‘backloading’. 'Frontloading' and
'backloading' are terms used to describe methods of sharing drug solutions, using
the syringe as a measuring device.
‘Breaking the cycle’ of Injecting Drug Use
Reducing the prevalence and/or frequency of injecting, and preventing initiation into
injecting, are important objectives in preventing the spread of blood borne viruses. Various
interventions can be employed to help achieve this. The ‘Break the Cycle’ campaign is the
most widely known. For further information, click on the link.
Preventing initiation into injecting drug use involves:
• Identifying non-injectors to help them resist adopting injecting as a method of drug
ingestion
• Working with current injectors to help them reduce their influence on non-injecting
drug users.
Promote alternatives to injecting, i.e. ‘switching’ from injecting to:
• Smoking or ‘chasing’
• Snorting
• Swallowing
• Rectal or ‘up yer bum’ (see http://www.hiwecanhelp.com/safer-using/how-drugs-aretaken/rectal.aspx)
• Taking oral substitute drugs, e.g. methadone.
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PROMOTING SAFER INJECTING PRACTICES
Safer injecting advice can include:
• Discussion about the use of sterile equipment
• Where to get supplies of needles, syringes, swabs, spoons, acidifiers, cinbins and
so on and discuss taking enough new equipment for every injection (hit)
• How to prepare drugs for injection and what needles to use
• Where and how to inject
• How to remedy poor injecting technique
• How to deal with problems of injecting
• Information about cross infection
• How to clean injecting equipment if sterile equipment is not available – see leaflet
• Referral to Harm Reduction Team and/or local drug agency (see the PCFT Services
list).
‘Cleaning’ injecting equipment – see Appendix G.
Other advice for safer injecting
• Do not use lemon juice to dissolve heroin as this may cause fungal infections. Use
Vitamin C or citric acid as alternative
• Always use new filters each time. Old filters may have traces of blood on them
• Dispose of used paraphernalia (‘works’) in a sharps bin or sealed container (jar or
bottle). Do not re-sheath used needles.
OCCUPATIONAL INJURIES
Lothian policy can be accessed on the NHS Lothian intranet through this link.
Needle-stick and other injuries
• Risk of HIV infection from needle-stick injury is 0.3%. None ever recorded from
discarded needles in community
• Medium risk of infection from hepatitis C positive source – reported transmission
rates between 3% - 10%
• High risk of infection from hepatitis B carriers – ‘surface antigen positive’ (30%).
Human bites from carriers should be regarded as infectious due to the possibility of
infection from saliva.
Procedure following injury
• Wash thoroughly with soap and lukewarm water, do not scrub
• Gently encourage bleeding
• Cover with a waterproof plaster
• Thoroughly irrigate exposed mucous membranes and eyes with water
• Refer to the policy on the intranet
• Consider source patient testing
• Report incident to line manager as soon as possible
• Contact Occupational Health Service
• Follow normal procedures for dealing with contamination – see Lothian Infection
Prevention and Control Manual
• For community exposure, expert advice is available from on-call consultants in GUM
or RIDU (via switchboard 0131 536 1000, out of hours RIDU only, on the same
number)
• Needle-stick injury: encourage bleeding, wash with water and soap or antiseptic,
cover with waterproof plaster, and seek medical advice immediately.
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For occupational exposure through Occupational Health Service (OHS). NHS Lothian
staff OHS on 0131 537 9369 or 0131 537 6000 outwith normal hours.
There are two important factors in assessing risk of needle-stick injury:
• The injury – the depth? hollow-bore needle?, gloves worn?
• The source – known to be positive? if so, viral load for HIV? high risk group?
In most cases the risk is low, however in all cases:
• Report injury to your manager and follow the Standard Operating Procedure
following needle-stick injury (click on the link to access the Procedure).
POST-EXPOSURE PROPHYLAXIS (PEP & PEPSE)
Following any suspected exposure to blood borne viruses seek expert advice and
assessment for the appropriateness of PEP or PEPSE (post-sexual exposure) – see GUM
for HIV, specialist virology department for HBV or HCV or occupational health for NHS
occupational exposure; Occupational Health Service (OHS) are contactable on 0131 537
9369 or 0131 537 6000 out with normal hours. Click on the link to access the NHS Lothian
PEP Policy.
HIV
• Consider after sexual exposure, needle-stick injury, unsafe injecting practice,
incidents involving exposure to blood
• No vaccine available
• If exposure risk is significant: antiretroviral drugs given as a prophylaxis to prevent
infection – individually tailored by HIV specialist
• Ideally, PEP should be commenced as soon as possible after injury (i.e. within 2
hours) but may be considered up to 2 weeks after injury.
Hepatitis C
• No vaccine currently available
• No specific PEP treatment currently recommended
• Follow-up blood tests advised.
Hepatitis B
• Consider after sexual exposure, needle-stick injury, unsafe injecting practices, close
household exposure, incidents involving exposure to blood
• If the individual has not had a previous effective course of immunisation, PEP
includes HBV Immunoglobulin (HBIG) and an accelerated immunisation course –
see immunisation schedules earlier in this section assuming a significant exposure?
• If the individual has had a previous course of immunisation consider a booster dose
of hepatitis B vaccine
• Follow-up bloods advised.
Hepatitis A
• Consider after close exposure to infected cases
• PEP for hepatitis A includes giving HAV Immunoglobulin (IgG) and immunisation
course
• Follow-up bloods advised.
•
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43.
CLEARANCE FOR HEALTHCARE WORKERS
• The General Medical Council (GMC), Nursing and Midwifery Council (NMC) and
General Dental Council (GDC) offer guidance on professional accountability of
doctors, nurses and dentists respectively
• Department of Health (2007) published guidance on health clearance for serious
communicable diseases (HIV, hepatitis B, hepatitis C and TB). It recommends: preappointment/pre-admission health checks for serious communicable diseases for
ALL new entrants to the NHS, including healthcare students. This includes checks
for TB disease/immunity and hepatitis B immunity (with immunisation if needed),
and the offer of testing for hepatitis C and HIV.
• Currently all healthcare workers who are involved in Exposure-Prone Procedures
(EPP) must be up-to-date with hepatitis B immunisation and must show an adequate
immunity status, or be non-infectious with HBV. They must also be non-infectious
with HIV. Click this link to the Health Protection Scotland website for further details.
RISK REDUCTION INFORMATION FOR PEOPLE WHO KNOW THEY ARE INFECTED
WITH BBVS, OR ARE AT RISK OF INFECTION
• Check with your GP that you have been tested for all blood borne viruses
• Ask your GP whether you have been vaccinated for hepatitis A and B
• Check whether other adults in your household have been vaccinated for hepatitis B
• Ensure that babies and any children in the household are vaccinated for hepatitis B
• Don’t donate blood, semen or breast milk
• Don’t carry a donor card
• Don’t share toothbrushes, razors and scissors/nail clippers/sex toys
• Always clean up spilled blood and bodily fluids carefully – contaminated areas can
be disinfected using ordinary bleach (one in ten dilution) or hot soapy water
• Practice safer sex and safer injecting – Appendix F
• HIV positive people should continue to use condoms if having sex with another HIV
infected person. Some HIV infected people develop drug resistance to antiretroviral
drugs. Safer sex can prevent you being infected with a drug resistant strain of HIV.
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TESTING
SUMMARY
• Promote BBV testing
• EARLY DIAGNOSIS SAVES LIVES
• If testing for any of HIV, HCV, or HBV, consider testing for all three
• Know the components of pre and post test discussion
• Refer patient to alternative sites for testing if you cannot do the test, or if the
patient requests referral to another testing site
• Be aware of other sources of support for the individual
• Offer referral to specialist services for assessment and treatment if positive for
one or more BBVs. Referral to an agency for practical and psychosocial support
is also encouraged – link to Blood Borne Viruses on RefHelp
• Testing is not a one-off event – if individuals continue be at risk then repeat
testing is indicated
Offering testing to appropriate patients, and being able to perform, or arrange access to
testing, is an important role for all healthcare staff.
Healthcare professionals are advised to actively promote BBV testing for those at risk and
to consider testing for HIV, HCV, and HBV at the same time.
The flowchart on the next page is a guide to the typical stages that may be involved when
carrying out a BBV test.
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45.
Testing for Blood Borne Viruses (BBVs)
Advantages
Why test for BBVs?
Other issues to consider
when testing for BBVs
Why test for all major
BBVs at the same time?
Medical history
Who should be
offered a test?
Effective communication
At risk groups
Risk assessment
Drug and alcohol history
(including injecting
history)
Sexual history
Raising the subject of BBV
testing
Offering a test
Where to refer / signpost
for testing?
Understanding the tests
Taking the sample
and asking for
the correct tests
Interpreting and
giving the result
Arranging
appropriate
follow-up
Risk reduction advice
Pre-test discussion
Arranging to give the
result
Which tests to ask for?
Venepuncture
Sending a sample
Dried blood spot (DBS)
Arranging for the return
of results
Interpreting the test results
Giving the result
Laboratory services
Where to do it
Confirmatory tests
Post-test discussion
Where to refer
Still at risk? – repeat
testing
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Selected patient
information websites
46.
WHY TEST FOR BLOOD BORNE VIRUSES?
Statistics indicate that there are large numbers of individuals living in Scotland who are
chronically infected with one or more BBVs and are not aware of it as recognisable
symptoms can take years to develop (see Background and Epidemiology section).
Testing allows them to access treatment, be more aware of their health care needs, and
consider making lifestyle changes to take care of themselves and reduce the risk of
passing a BBV to others.
Early diagnosis and access to treatment dramatically improves the effectiveness of
treatment for HIV, HBV, and HCV.
Why test for all the major BBVs at the same time?
People testing positive for one blood borne virus have an elevated risk of being coinfected with other BBVs due to common routes of transmission. Testing for a single virus
may lead to missed diagnoses and false reassurance for people who believe they are
being tested for all. It is therefore advisable to test for all major BBVs (HIV, HBV, HCV) –
especially in target groups.
Advantages of BBV testing
• Testing can allay anxiety even if the result is positive
• Individuals who are diagnosed with one or more BBVs can access treatment and
care
• Early diagnosis and treatment is associated with better outcomes
• People receiving treatment are more likely to remain well and live longer than those
not in treatment
• Known HIV positive or hepatitis B infected pregnant women can access treatment
and interventions that greatly reduce the risk of vertical (mother-to-child)
transmission
• Testing can allow patients to consider changing behaviours which put them at risk of
infection or further illness (e.g. not drinking alcohol with hepatitis or using condoms
for penetrative sex)
• Diagnosed people can consider taking action that will reduce the risk of them
infecting others (e.g. practising safer sex and safer injection techniques)
• A diagnosed person can inform their sexual partners and other at-risk contacts so
that they may themselves seek BBV testing
• Women who have been diagnosed can seek testing for their existing children and
plan appropriately for any future pregnancies.
Other issues to consider when testing for BBVs
In addition to the benefits of testing, it is important to appreciate that there can be negative
effects for the individual of being diagnosed with one or more BBVs; it is rare that these
outweigh the benefits of knowing about the infection.
• Psychological impact – people who receive a BBV positive diagnosis are likely to
experience a whole range of emotions which may include: bereavement, loss of
sexual identity, prospect of living with a chronic illness, fear of death, anxiety,
depression – see the Living With A BBV section for more details.
• Stigma – there is still a stigma attached to being infected with one or more BBVs.
This stigma can negatively affect people’s mental and physical wellbeing and
severely affect their ability to function day to day. It can also lead to discrimination
against individuals limiting their choices, opportunities and their ability to access
services. For more information about stigma see the Living with a BBV section.
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47.
• Who to tell – some individuals who have been recently diagnosed may be confused
about who to tell about their status. It is important for them to reflect carefully on who
to tell as they may regret disclosing information in the future. The healthcare
professional should encourage people to disclose their status to contacts that may
have been exposed to a BBV.
In some rare cases the healthcare professional may be required to breach
confidentiality if “the benefits to an individual or to society of the disclosure outweigh
the public and the patient’s interest in keeping the information confidential” see
http://www.aidsmap.com/Confidentiality-and-medical-professionalstandards/page/1505552/ #item1505557.
• Work issues – individuals who are chronically infected with HIV or HCV cannot
undertake any job where it is a requirement to perform ‘exposure prone procedures’
– see www.hpa.org.uk for further information.
Those infected with HBV may also be excluded depending how much virus they
have in their blood. In the majority of cases people have no obligation to tell their
employer about their BBV status, however it may be helpful as powerful antidiscriminatory laws are in place to protect employees, see:
http://www.aidsmap.com/The-Disability-Discrimination-Act-DA/page/1255094/.
• Financial issues – The Association of British Insurers has agreed not to ask
questions about negative test results so only positive test results need to be
declared. Negative test results should not be supplied to insurance companies
(beware computer generated medical reports which may contain this information).
They have also agreed not to ask ‘lifestyle’ questions about sexual or other
behaviour. If these are still included in a questionnaire they should not be answered.
Positive tests, wherever they are carried out, require to be declared and will make it
more difficult but not impossible to get life policies and mortgages. Remember life
assurance issues are not confined to BBVs and should not delay a potentially life
saving test!
For more details of financial products for those with HIV see AIDSMAP–Social and
Legal Issues for People with HIV:
http://www.aidsmap.com/Social-and-legal-issues/cat/1525/.
A history of hepatitis A will not affect access to financial products.
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48.
Effective communication
Effective communication is essential when discussing BBVs and related risk factors such
as sexual behaviour and drug history. Sexual and/or drug history-taking begins with
general issues and progresses to more detailed and specific questioning regarding risk
behaviours. Factors that will assist effective communication during sexual and drug
history-taking include:
• A comfortable space and adequate time
• Privacy and the absence of interruptions
• Assurance and explanation of confidentiality
• A non-judgemental attitude
• Knowledge about alternative lifestyles and a willingness to learn
• A willingness to discuss sexual and drug-use behaviour in detail
• Listening carefully to the patient
• A focus on the goals of the interview
• The cultural appropriateness of sexual history-taking may require consideration,
particularly with regard to the gender of the clinician.
Adapted from Bradford 2008, French 2007
WHO SHOULD BE OFFERED A TEST?
There are differing approaches to identifying who should be offered a test for BBVs. One
is identifying ‘at risk’ groups and actively promoting testing among people identified as
belonging to those groups.
Another method is to do a thorough risk assessment in order to identify risk behaviours.
The advantage of using the ‘at risk’ group approach is that it is less time consuming and
will identify the majority of individuals at risk. However it may not identify individuals who
have high risk behaviours but are not obviously identified as being part of an ‘at risk’
group. The ‘at risk’ groups approach is perhaps the most common approach used in
Primary Care in Lothian although in practice there is probably a mixture of both
approaches. The list on the next page provides a summary of current guidance on ‘at risk’
groups.
Proactively offer BBV testing to:
• Risk related to an environment of high prevalence or incidence:
• People from / who have lived in / or travelled to areas of medium to high
seroprevalence of HIV / HCV / HBV – see example in Appendix C
• People who have been in prison
• People who have had a household contact who is HCV / HBV infected or in a
high risk group
• Risk related to drug or alcohol use including injecting:
• Anyone who has ever injected drugs at any time – this may be years ago and you
may have to ask specifically.
• Anyone who is, or has been dependent on drugs or alcohol
• People who have or are currently snorting or smoking drugs such as cocaine,
particularly if they have shared pipes, straws or other equipment
• Risk related to sexual behaviour:
• Anyone who has had unprotected vaginal or anal sex with a sexual partner who
is chronically BBV infected or in a high risk group
• Sexual assault victims
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49.
• People with multiple sexual partners (including male and female sex workers)
who do not routinely use condoms
• Men who have disclosed unprotected sexual contact with other men
• Men who register at a general practice in an area with a large community of men
who have sex with men
• Female sexual contacts (unprotected) of men who have sex with men
• All those diagnosed with a Sexually Transmitted Infection (STI)
• Anyone who reports unprotected anal or vaginal sex with a new partner
• Women attending for termination of pregnancy
• Risk related to medical procedures / receipt of blood products / body piercing:
• People who have had unsterile medical or dental treatment – more common in
resource-limited countries e.g. outwith Western Europe, North America, Australia
and New Zealand
• People who have had procedures such as body piercing, tattooing, electrolysis or
acupuncture without appropriate sterile precautions – more common in prison or
home
• Historical recipients of blood and blood products in the UK (all blood products
checked for HIV since 1985, HCV since 1991 and HBV since the early 70s)
• Anyone planning to donate blood or body tissue
• Patients undergoing renal dialysis
• People displaying symptoms that may be associated with HIV, HCV, HBV:
• HIV – chest infections not responding to treatment, TB, shingles, oral candidiasis,
severe or chronic diarrhoea, general malaise or weight loss – see Appendix A for
a list of Clinical Indicator Diseases for Adult HIV infection.
• HCV and HBV – signs of jaundice, chronic liver disease, unexplained abnormal
LFTs especially elevated ALT or AST, and chronic fatigue
• Others:
• Anyone with a BBV unsure about their status regarding other BBVs
• All antenatal women (HIV, HBV routinely), and antenatal women at risk (HCV)
• Children born to a mother who has a BBV should have paediatric follow-up
currently provided by Dr Laura Jones at the Royal Hospital for Sick Children.
Source: BASSH 2008, BHIVA 2008, Lok and McMahon 2009, NICE 2011a, NICE 2011b,
SIGN 2013.
RISK ASSESSMENT
It is recommended that if patients fall into one of the groups detailed above in ‘Who should
be tested?’ that they should be offered a test regardless of detailed risk assessment.
However this method could miss people who are not obviously displaying one of the listed
risk indicators.
Risk assessment can also allow appropriately targeted advice to be given on reducing risk
in the future and ensures that patients can be given correct advice on the ‘window period’
and the need for repeat testing if the results come back negative. It is not expected that a
full risk assessment would be done at one appointment, rather conducted over several
appointments. Referral to a specialist service which can provide dedicated time for a
thorough risk assessment may be indicated – such as the Genito-Urinary Medicine clinic,
BBV counselling clinic at RIDU, Substance Misuse Directorate BBV team – see the
Services section for a list of testing services.
Risk assessment would consist of obtaining information about:
• General medical history
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50.
• Drug and alcohol history – including how they use/used drugs i.e. injecting, snorting,
smoking etc
• Sexual history
• Details about living arrangements.
See Appendix D for more details.
Indicators of high risk of BBV transmission:
• Unprotected sex – especially if with multiple partners or new partners, between men,
with bisexual men, with an injecting drug user, with anyone from an area of high or
intermediate seroprevalence – see a list of areas in Appendix C
• Injecting drug use – especially if sharing needles or syringes, or any other
equipment used (filters, water, spoons, tourniquets, swabs, preparation surfaces)
• Received medical care, including receipt of blood products, where hygiene
standards may not adequate to prevent BBV transmission. This may be more
common in areas outside of North America, Western Europe, and Australia and New
Zealand
• People from / who have lived in / or travelled to areas of medium to high
seroprevalence of HIV / HCV / HBV – see example in Appendix C.
For a fuller discussion of risk factors see the Transmission section.
See Appendix B on risk factors and Appendix D for components of a BBV risk
assessment.
OFFERING A TEST
RAISING THE SUBJECT OF BBV TESTING
Most people will attend voluntarily for BBV tests but it is no longer acceptable to wait for
patients to request these tests if they are known to be at risk of infection or have clinical
indications for testing, such as possible BBV-related illness.
In most cases it is entirely appropriate to carry out BBV testing in the primary care setting.
Any delay in testing, e.g. referring elsewhere, increases the risk that the person will not
attend.
Note: Doctors who fail to diagnose a patient who has had clear risk, or signs and
symptoms of a BBV could potentially be seen as negligent. See Local AIDS sheet Number
106 available at:
http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/AZ/MedicinesManagement/LocalAIDsSheets/Documents/Forms/AllItems.aspx.
However, remember the following:
• Informed consent should be obtained for all BBV tests taken from a patient with the
exception of life-threatening emergencies where testing is important for the patient’s
own care
• HIV and HBV (but not HCV) testing is offered as part of ‘routine antenatal
screening’. Pregnant women are given a brief description of the tests being taken
and written information. They can opt out of any or all of the tests
• Blood, blood products and tissue donations are routinely screened and donors are
informed of all positive results
• Limited pre-test discussion is recommended for anyone attending voluntarily for a
BBV test (see below for details)
• Patients can be given the leaflet ‘Testing for blood borne viruses’. Copies are
available from NHS Lothian Library and Resource Centre (Tel. 0131 536 9451) or
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51.
via this link: http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/AZ/PCFT/Documents/BBV%20Leaflet%20Dec%2010.pdf.
It is possible to develop strategies for raising the issue of BBV testing with patients at
appropriate opportunities. Suggested examples of opening phrases include:
‘This is a condition that is sometimes associated with HIV infection and I usually
recommend HIV testing in these circumstances – can we discuss whether you could have
been at risk?’
‘When we investigate abnormal liver function tests we usually recommend testing for
some viral infections called Hepatitis A, B and Hepatitis C – can we discuss whether you
could have been at risk?’
‘Anyone who has ever injected drugs is possibly at risk of chronic viral infections such as
hepatitis B and C and HIV, even if they have not done so for a long time – have you ever
thought about having these tests?’
Do you have any concerns about your risk of exposure to hepatitis C, HIV or other
sexually transmitted infections?'
THE PRE-TEST DISCUSSION
The aim is to achieve informed consent for testing. In most cases lengthy counselling is
not required. What needs to be covered will depend on the risk assessment and the
individual’s own concerns.
The most basic discussion should cover the benefits of testing to the individual and details
of how the result will be given. Allow the patient to ask questions and be able to answer
them. The person can then give informed consent to testing.
The pre-test discussion may also include the following if required for that individual:
• Assessment of risk
• The ‘window period’ for each test
• Person’s understanding of the tests
• Person’s understanding about BBV infections
• Treatment advances, monitoring & support available
• Confidentiality
• Person’s ability to cope with the result
• Implications to the individual of a positive result
• Arrangements for getting the result and support meantime
• Risk reduction advice (e.g. safer sex & safer drug use).
Where to refer / signpost for BBV testing in Lothian
There are various sites within Lothian where people can access BBV testing. Remember
– the best way to get testing done is to offer it and do it on the spot – referring people on
to another agency for testing increases the chance that it will not get done.
Specialist BBV testing services – see the Services section.
Person’s ability to cope with the result
• It is important to discuss how the person will cope with anxiety whilst awaiting
results and who can give support during that time
• Is the timing of taking the test right for the individual? Are there other issues that the
individual wants to deal with first?
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52.
UNDERSTANDING THE TESTS
HIV – Testing in Lothian combines both antibody and antigen tests. A positive test always
indicates ongoing infection but does not indicate how long this has been present, or the
current state of the immune system.
After acquiring the infection, levels of antibodies and antigens can take some time to
develop to detectable levels (the window period). In Lothian the routine use of sensitive
4th generation testing has considerably reduced the window period until the detection of
antibodies. However any negative test should be repeated at 3 months to pick up any
delayed antibody development.
HCV – Initial tests are for HCV antibodies only. The window period can be up to 6 months.
If antibody positive then an antigen test is required to determine whether there is ongoing
active infection. In Lothian this test will be undertaken automatically on any sample with a
new positive HCV antibody result.
If antigen positive then the individual has active hepatitis C viral infection.
If antigen negative the lab will request a follow up sample of >5 mls anticoagulated blood
in red EDTA tubes (2x2.7ml most commonly) for a PCR test.
If the PCR test is positive then they have active hepatitis C viral infection.
If negative they do not and should be offered risk reduction advice.
Note: In the case of Dried Blood Spot testing there is no antigen test, only antibody and
PCR – if the PCR test is positive then they have active hepatitis C viral infection.
HBV – Initial tests for HBV are for antibodies and viral antigens, and can show past or
current infection, or past immunisation. The lab will usually interpret results on the result
form. The window period can be up to 6 months.
Note:
• Further confirmatory blood tests are required for positive results to ensure accuracy
of the test and to confirm that the sample was from correct patient. The lab will
request these if necessary. Although important these rarely change the initial result
• Tests may need to be repeated if taken during the window period (up to 3 months
for HIV, 6 months for HCV/HBV).
Risk reduction
Use testing as an opportunity to give advice on reducing the risk of BBV transmission.
Infected individuals can pass on infection and can also be re-infected with different strains
of HIV or HCV.
• Discuss safer sex practices
• Advise on the use of condoms and where to get supplies
• Advise patients to avoiding sharing injecting equipment including spoons, filters,
water, acidifiers and needles/syringes
• Discuss safer injecting practices and where to obtain sterile supplies of injecting
equipment – see list of Injecting Equipment Provision sites.
Use the patient leaflets on Safer Sex and Blood Borne Viruses (Appendix F) and Injecting
Drug Use and Blood Borne Viruses (Appendix G) to lead a discussion.
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53.
Arranging to give the result
• Results normally take around 7 days to come back (2-3 weeks for dried blood spot
samples)
• Ensure that you have system in place to follow up every BBV test taken
• Results should be given in person and usually at a pre-arranged appointment
• Suggest that the patient may want to bring someone with them.
Taking the sample and asking for the correct tests
• A sample of blood is usually taken from a vein or, less commonly, by obtaining a
dried blood spot sample by pricking the finger.
Venepuncture
• If requesting testing for HCV, HBV and HIV, a single form and a single brown tube
(7.5ml serum gel) can be used for all the tests.
Dried Blood Spot Testing (DBS)
BBV testing can be performed on spots of dried blood. The blood in this case is most
commonly obtained from a finger by pricking with a sterile lancet device. The drops of
blood are then thoroughly soaked into circles marked on the provided piece of card. At
least 3 filled circles of blood are required.
This card is put in the designed packaging and sent to laboratory services in Glasgow who
will then analyse these samples to provide results for HIV, HBV, and HCV (including PCR
if indicated) as requested. Follow up confirmatory venous tests are usually required
however this can be done after referral to specialist services. Details on how to order and
use DBS packs can be found on:
http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/UsefulResources/Pages/BloodB
orneViruses.aspx.
WHICH TESTS TO ASK FOR
• HIV and HCV antibody (serology) tests
• HCV antigen testing – in Lothian the lab will run this test on all new HCV antibody
positive tests to see if there is evidence of active chronic infection. From 1st April
2011 this replaces PCR as the initial test performed on venous samples after people
are found to be antibody positive (DBS tests will continue to use PCR testing). If this
is positive then offer referral to specialist treatment services and consider referral for
practical and psychosocial support
• HBV – full clinical details including the reason for testing and any previous HBV
immunisation history will allow the lab to determine the correct antibody and antigen
tests to run – there are boxes on virology form to indicate which tests you need
• HAV – test for the presence of IgM antibodies if patient is likely to have been
exposed to the virus. A total antibody test can tell whether the patient is immune to
HAV.
Sending the initial sample and arranging for the return of the results
Venepuncture samples should be sent in a sealed bag (provided) containing:
• a 7.5ml brown capped serum gel tube with as much sample that is obtainable
• a completed virology form clearly indicating clinical details and which tests are
required
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54.
• clear details of where to report the results including departmental address and
phone number
• a ‘high risk’ sticker is still required on the bottle.
Dried Blood Spot samples:
• should be sealed in the bag provided
• the marked circles on the card need to be thoroughly soaked with blood so that the
blood is visible on the back of the card
• should be clearly marked with the requested tests
• make sure your full return details are on the form including phone number.
INTERPRETING THE TEST RESULT
Hepatitis C
• Initial test is serology for antibodies to hepatitis C
• Hepatitis C antibody positive – shows there has been exposure to the virus but not
whether infection is ongoing
• In Lothian a positive antibody result will automatically be sent for an HCV antigen
test – a positive antigen test indicates chronic infection with ongoing viral replication.
Offer referral to a specialist treatment service and consider referral to other BBV
support services for help with practical and psychosocial issues – see Referral to
Specialist Care
• If the antigen test is negative the lab will request a follow up sample of >5 mls of
anticoagulated blood in red topped EDTA tubes for PCR testing (usually 2 x 2.7mls)
If this is positive then offer referral to a specialist treatment service and consider
referral to other BBV support services for help with practical and psychosocial
issues
• If antibody positive but antigen and PCR is negative – repeat PCR test and if 2
negative PCR results then reassure patient they do not have chronic infection –
discuss ways of reducing risk of contracting a BBV. If they continue to be at risk they
will require repeat testing for HCV antigen (every 6-12 months)
• Flowchart illustrating the HCV testing process – see Appendix H
• For dried blood spot samples there is no antigen test, a PCR test will be
performed if requested and indicates chronic infection if positive.
Hepatitis B
Serology and surface antigen (viral particle) detection tests are carried out depending on
the clinical information entered on the request form – be as full as possible about
exposure and HBV immunisation history.
Interpretation of the results can be complicated and the laboratory usually provides an
interpretation of the tests on the result form. The clinician must be clear about what each
test means as it is possible to confuse chronic infection with immunity.
• Hepatitis B surface antigen (HBsAg): A positive result indicates an active infection
but does not indicate whether the virus is in the acute or chronic phase
• Hepatitis B surface antibody (anti-HBs): a positive result indicates immunity to
hepatitis B from immunisation, or recovery from an infection
• Hepatitis B e-antigen (HBeAg): A positive result is associated with much higher
rates of viral replication and enhanced infectivity. A negative result does not indicate
the person cannot infect others
• Anti-hepatitis B core antigen (anti-HBc): If it is present with a positive anti-HBs, it
usually indicates recovery from an infection and the person is not a carrier. In acute
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55.
infection, the first type of antibody to HBc to appear is an IgM antibody. Testing for
this type of antibody can show that a person has recently been infected by HBV
(where IgM anti-HBc would be positive) or for some time (where IgM anti-HBc would
be negative)
• HBV DNA: A positive (or reactive) result indicates the presence of virus that can be
passed to others. A negative result usually means the virus is less likely to be
spread to others, especially if tests that can pick up as few as 1,000 viruses (copies)
in one ml of blood are used.
Patients with evidence of acute or chronic infection should be offered referral for specialist
assessment – see Where to refer for Treatment.
Interpretation of Serological Markers
Status
Detection of
HbsAg
HbeAg
Anti-HBc
Anti-HBs
IgM Anti-HBc
Acute Infection
+
+/-
+/-
-
+
Chronic Infection
(>6 months)
+
+/-
+
-
-
Past Infection
(immune)
-
-
+
+/-
-
Immunity due to
immunisation
-
-
-
+
-
Contact tracing and immunisation of contacts
Hepatitis B is a notifiable disease and the Health Protection Team (HPT) will be informed
by the Regional Virus Lab about any acute or chronic Hep B infections. HPT will then
determine the partner notification required and will notify the GP or testing clinician.
• For acute hepatitis B infections the HPT will make contact with the patient and
determine who requires hepatitis B immunoglobulin, immunisation and testing
• For chronic hepatitis B infections the HPT will notify the GP and request contact
tracing and immunisation of household and sexual contacts. A letter is supplied to
give to patients to give to contacts that are not registered with the same GP so that
they can approach their own GP.
Hepatitis A
If the test result is positive (or reactive) and the patient has not been given the HAV
vaccine, they have, or have had HAV infection. About 30% of adults over age 40 have
antibodies to HAV. If they have been given the immunisation, a positive result means they
are immune to HAV and cannot be infected by it.
HIV
• HIV test – initial test is an antibody test, in which a positive test indicates chronic
infection and the patient should be referred to a specialist service for further testing
to determine stage of HIV infection – see Where to refer for treatment
• PCR (viral load) – viral RNA detected to give indication of level of viral replication. It
is used to make decisions on when to treat and to monitor treatment
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• CD4 count – immune marker, can be used in General Practice to determine risk of
opportunistic infections but is not a diagnostic test as per PCR.
GIVING THE TEST RESULT
Where to do it
Arrange to give the result in a comfortable and confidential environment. Ensure enough
time to give the result face to face and to deal with issues that may arise.
Post-test discussion
If negative:
• Check if retesting required due to window period – see Understanding the Tests
• Discuss how to reduce future risk including safer sex and safer drug use if
appropriate
• Offer HBV and HAV immunisation if required
• For HCV antibody positive with negative HCV antigen and negative PCR – offer
reassurance but recommend repeat PCR testing asap to confirm resolved infection.
If positive (reactive):
Note: although a lot of information needs to be discussed when giving a positive result,
this can be done over more than one consultation. If you have a positive result it may be
possible to phone the relevant treatment centre to pre-arrange an appointment where they
will be able to reinforce and expand on initial discussions – see Blood Borne Viruses on
RefHelp.
• Tell the patient about their result
• Check understanding of the result – for example, a positive HCV antibody test
shows exposure to the virus but does not tell you if people have chronic HCV – a
further antigen and possible PCR test is needed for this
• Review pre-test discussion and address concerns of the person. What is their
biggest anxiety?
• Reiterate benefits of assessment and treatment – give a positive message
• Whom to tell and not to tell? Identify supports in family and friends. Most employers
do not need to be aware of the diagnosis. For health professionals it is very
important that Occupational Health are informed and decisions are made about what
work can be undertaken
• Take confirmatory tests as requested although this should not delay referral to
specialist services – the confirmatory tests can be performed at specialist services
post referral – however if the person DNAs they should be done in primary care
• Discuss how to reduce future risk, including HBV and HAV immunisation if required
• Discuss implications for family members, sexual partner/s who may require BBV
testing and immunisation
• Give information on the nature of infection, routes of transmission and ways in which
risk of transmission can be reduced
• Advise that sharing information about infection with sexual partners is important as
not doing so could lead to legal proceedings if there is onward transmission
• People with HIV, HBV, HAV should be advised about availability of post-exposure
prophylaxis (PEPSE) following unprotected sexual intercourse or condom split – see
the Prevention section
• For HIV, PCR positive HCV and chronic HBV – offer referral to specialist treatment
centre and for practical and psychosocial support – see Blood Borne Viruses on
RefHelp
• Give details of locally available support or helplines (see the Services section).
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Confirmatory tests
Confirmatory BBV tests can be performed at specialist services (post referral) if the
person attends. If not they should be taken in Primary Care.
What will be requested for confirmation?
• A follow up blood test will be requested for HIV, HBSAg positive result, and also if
HCV antigen positive
• If HCV antigen negative and a follow up EDTA blood sample requested for PCR
testing then this will also act as the confirmatory sample.
Arranging appropriate follow up
Follow up can be provided in one, or all three of, Primary Care, Secondary Care, or in the
Third Sector (voluntary agencies), with there being a greater or lesser degree of self
management depending on the patient’s health status and ability. See the following
sections for details:
Primary and Secondary Care Management
Living with a Blood Borne Viruses
Repeat testing should be offered annually or more frequently if clinical symptoms
are suggestive of seroconversion, or ongoing high risk exposure to BBVs.
Repeat testing should also be offered to all individuals who have tested BBV negative but
where possible exposure has occurred within the window period (3 months for HIV, 6
months for HBV and HCV).
Individuals who are at identified at risk of BBV transmission through for example injecting
drug use or unprotected sex, should also be offered BBV re-testing on a 6-12 month basis
(RCGP, BHIVA, BASHH Management of viral hepatitides).
Where to refer for treatment
If an individual is diagnosed with an ongoing BBV infection, i.e.
• HIV antibody positive
• HBsAg positive (surface antigen)
• HCV Ag (antigen) or HCV PCR positive, then a referral to a specialist treatment
centre should be considered in all cases to enable assessment and consideration
for treatment
• HIV antibody positive – refer to Genito-Urinary Medicine Department at Chalmers or
the Regional Infectious Diseases Unit (RIDU) at the Western General. Cases can be
discussed with the on-call consultant – see RefHelp
• HBsAg positive – refer to Centre for Liver and Digestive Disorders – see RefHelp
• HCV Ag (antigen) or HCV PCR positive – refer to Centre for Liver and Digestive
Disorders or Regional Infectious Diseases Unit depending on patient choice and
geography – see RefHelp. There is an HCV assessment clinic which runs at St
John’s hospital in West Lothian – refer to CLDD marking St John’s clinic on the
referral
• Co-infection with two or more BBVs refer to RIDU.
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Help to prepare for the treatment process
A significant percentage of people who have been diagnosed with a chronic BBV and
referred to treatment centres never attend, particularly regarding hepatitis C. It is
recommended that, when offering referral for treatment, referral to an agency that can
help to engage the individual in the treatment process is also considered. See the
Services section for a list of these supporting services.
Useful websites for patient information
Hepatitis
• British Liver Trust http://www.britishlivertrust.org.uk
• Children’s Liver Disease Foundation www.childliverdisease.org
• Hepatitis B Foundation UK http://www.hepb.org.uk/
• National Hepatitis C Resource Centre (Mainliners) http://hepccentre.org.uk/
HIV / AIDS
• AVERT – HIV and AIDS Education and Research Trust http://www.avert.org/
• National AIDS Manual (NAM) http://www.aidsmap.com/en/default.asp
• Stonewall works with a range of agencies to address the needs of lesbians, gay
men and bisexuals in the wider community http://www.stonewall.org.uk
• Terrence Higgins Trust – HIV/AIDS information, safer sex, online booklets and help
line http://www.tht.org.uk/.
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SECTION REFERENCES
Bradford, D., Hoy, J. and Matthews, G. (2008) 'HIV, viral hepatitis and STIs: a guide for
primary care' Darlinghurst, NSW: Australasian Society for HIV Medicine. Available at:
http://www.ashm.org.au/default2.asp?active_page_id=133
British Association of Sexual Health and HIV (2008) 'United Kingdom National Guideline
on the Management of the Viral Hepatitides A, B & C.
Available at: http://www.bashh.org/guidelines
British HIV Association 'Clinical Audit Reports'.
Available at: http://www.bhiva.org/NationalAuditReports.aspx
British HIV Association, British Association of Sexual Health and HIV, and British Infection
Society (2008) 'UK National Guidelines for HIV Testing 2008'.
Available at: http://www.bhiva.org/HIVTesting2008.aspx
Department of Health (2002) 'Getting Ahead Of The Curve A strategy for combating
infectious diseases (including other aspects of health protection)' London. Available at:
http://webarchive.nationalarchives.gov.uk/20040104233105/http://doh.gov.uk/cmo/idstrate
gy/execsum.htm
European Association for the Study of the Liver (2009) ‘EASL Clinical Practice Guidelines:
Management of chronic hepatitis B’. Journal of Hepatology 50 pp 227–242. Available at:
http://www.easl.eu/_clinical-practice-guideline
Foundation for Liver Research (2004) 'Hepatitis B: Out of the Shadows'. Available at:
http://www.liver-research.org.uk/liver-research-publications/publications-links.html
French, P (2007) ‘BASHH 2006 National Guidelines – consultations requiring
sexual history-taking’. International Journal of STD & AIDS Vol 18 pp 17-22.
Available at: http://www.bashh.org/guidelines
Public Health England (2013) 'HIV in the United Kingdom: 2013 Report' London.
Available at:
http://www.hpa.org.uk/Publications/InfectiousDiseases/HIVAndSTIs/1311HIVintheUk2013r
eport/
Health Protection Scotland (2010) 'HPS Weekly Report Vol 44 No. 2010/43'.
Available at: http://www.hps.scot.nhs.uk/ewr/index.aspx
Hepatitis B Foundation (2007) Rising Curve, Chronic Hepatitis B infection in the UK.
Available at: http://www.hepb.org.uk/
Hutchinson, S.J., Roy, K.M., Wadd, S. et al. (2006) 'Hepatitis C Virus Infection in
Scotland: Epidemiological Review and Public Health Challenges'. SMJ 51(2): 8-51.
Available at: http://scm.sagepub.com/content/51/2/8.abstract
Lok, A.S.F. and McMahon (2009) ‘AASLD Practice Guideline Update – Chronic Hepatitis
B: Update 2009’. Hepatology vol 50, No. 3 pp 1 – 35. Available at:
http://www.aasld.org/practiceguidelines/Pages/SortablePracticeGuidelinesDate.aspx
National Institute for Health and Clinical Excellence (2011a) 'PH 34 Increasing the uptake
of HIV testing among men who have sex with men' London. NICE.
Available at: http://www.nice.org.uk/guidance/PH34
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National Institute for Health and Clinical Excellence (2011b) 'PH33 Increasing the uptake
of HIV testing among black Africans in England' London. NICE:
Available at: http://publications.nice.org.uk/increasing-the-uptake-of-hiv-testing-amongblack-africans-in-england-ph33
SIGN (2013) 'Management of Hepatitis C – A National Clinical Guideline'. SIGN 133.
Available at: http://www.sign.ac.uk/guidelines/fulltext/133/index.html
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MANAGEMENT and CARE of
HIV, HEPATITIS B and C
SUMMARY BOX
• All clinical staff in the primary care team should be able to identify those who are
at risk of infection and recognise all key signs/symptoms for HIV. HCV and HBV.
• Increased patient identification and testing for BBVs in primary care will lead to
earlier diagnosis and better outcomes for patients.
• Any patient diagnosed with one or more BBVs should be offered specialist
referral. Primary care should remain involved in the care of these patients
providing general medical services.
• Immunisation against hepatitis A and B should be actively promoted among at
risk groups.
• If an individual is receiving pharmacotherapy for HIV, HBV, or HCV it is important
to understand the advantages of treatment and what the potential adverse and
unwanted effects are, and how to respond to them.
• Medications should be recorded in patient records in a way that allows safe
prescribing of other medications that may potentially interact with them.
• Primary care staff may be requested to take a role in the monitoring and care of
an individual who is also seen in a specialist service or for those who are not
engaged with such a service.
SECTION CONTENT AND LINKS
Referral to Specialist Care for BBV Infections
HIV Infection
Specialist HIV Care and Antiretroviral Treatment
Hepatitis C Infection
Hepatitis B Infection
Treatment of Chronic Hepatitis B in Secondary Care
Children and BBVs
See the Services section for details of support agencies and organisations mentioned in
this chapter.
PRIMARY CARE
HIV infection, chronic HCV and chronic HBV infections are all long term illnesses requiring
medical care and treatment over a prolonged period of time. As such they fit into the
model of chronic disease management that is familiar to primary care. They may be best
managed on a ‘shared care’ model with the primary care team offering support and care in
the community whilst specialist treatment is delivered from the hospital setting.
Historically patients with HIV have often received the bulk of their care in a hospital-based
setting, including much care that would usually be seen as primary care. As numbers of
patients increase, largely due to long term survival on treatment, this model is becoming
unsustainable and a move to a model of care similar to other chronic diseases would be
more appropriate. Patients with HCV infection are often seen in primary care as only 1 in
4 of those diagnosed in Scotland are receiving specialist management each year.
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These patients have a high DNA rate at clinics due to their multiple medical and social
problems. Monitoring of those not being seen in specialist care is an important role as
disease may be progressing and patients may be becoming more unwell without obvious
symptoms.
Diagnosis and Testing in Primary Care
Everyone in the primary care team should be able to identify those who are at risk and
should directly offer or facilitate testing for HIV, HCV and HBV. Advances in treatment
mean there are real benefits to individuals of being aware of their BBV status. Early
diagnosis and treatment will help to improve long term outcomes for all of the BBV
infections – see the Testing section for details on the process of testing.
REFERRAL TO SPECIALIST CARE FOR BBV INFECTIONS
It is recommended that anyone diagnosed with HIV, active HCV (PCR positive) and acute
or chronic HBV is referred for specialist assessment and treatment. There is no reason to
delay referral as early treatment is beneficial for all the BBVs. All patients should be
offered referral regardless of any issues that may initially affect their ability to take
treatment.
Acutely unwell patients with HIV-related illnesses or acute hepatitis should be discussed
with the on-call doctor for the Regional Infectious Diseases Unit, or the Centre for Liver
and Digestive Disorders, with a view to admission.
Referral pathways: see RefHelp at:
http://www.refhelp.scot.nhs.uk/index.php?option=com_content&view=article&id=689&Item
id=1534
• HIV positive patients should be referred urgently to Sexual Health Services at
Chalmers Centre or to the Regional Infectious Diseases Unit (RIDU) at the Western
General Hospital
• HCV PCR +ve or Antigen +ve patients can be referred to RIDU or the Centre for
Liver and Digestive Disorders (CLDD) at the Royal Infirmary of Edinburgh (RIE). In
some areas of Lothian referral can be made to HCV nurse-led outreach clinics which
offer assessment and treatment. The decision where to refer would take into
account geography, patient, and GP preference. Patients with signs of
decompensated cirrhosis should be referred urgently. Symptoms of decompensated
liver disease include (but are not limited to) ascites, encephalopathy and
gastrointestinal haemorrhage
• Patients with acute or chronic HBV should be referred to RIDU (WGH) or CLDD
(RIE). The decision where to refer would take into account geography, patient, and
GP preference. People with acute HBV or signs of decompensed cirrhosis should be
referred urgently
• Patients with co-infection (HIV/HCV and/or HBV) should be referred to RIDU
(WGH).
Specialist referral allows further assessment of patients to determine the stage of their
infection and their requirements for treatment. Do not make assumptions about eligibility
for treatment at this stage i.e. exclusion of injecting drug users or heavy drinkers.
Decisions on appropriateness for treatment can be made after further assessment at the
specialist unit.
Specialist clinics are often a source of information for patients and relatives, including
health promotion and methods of avoiding onward transmission of BBVs.
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Patients with complex social, psychological and physical problems, in addition to their
BBV infection, may require additional information and support to enable them to
understand their infection and to attend specialist clinics for assessment and treatment.
In complex cases a referral to a dedicated support agency at the same time as
referral for specialist care will help reduce the risk of non-attendance at the clinic.
HIV INFECTION
New Diagnosis of HIV
Initial assessment in primary care
When you see a patient with newly diagnosed HIV infection it is important to get a
baseline history, BUT NOT TO DELAY URGENT REFERRAL:
• Route of infection (indicates risk for other infections such as hepatitis B and hepatitis
C), also important epidemiologically
• Other past medical history
• Other medication
• Any illnesses and admissions over the last 2-3 years with conditions that could have
been related to HIV infection?
In addition to assessing physical condition, the following areas should be addressed:
• Assess patient’s understanding of the meaning of a positive result and need for
information about monitoring, treatment and prognosis
• Assess ongoing risk behaviour and give advice about reducing risk to themselves
and others
• Assess social circumstances and social support available
• Assess mental health
• Consider needs of family members, including children, babies and carers.
Examination should include:
• Weight – as baseline
• Check for lymphadenopathy and rashes
• Check mouth for oral thrush and oral hairy leukoplakia (see below).
Initial investigations for patients who decline specialist referral
• Repeat HIV test to confirm result
• Full blood count and ESR – anaemia and platelet abnormalities can occur due to
HIV
• Liver function tests – especially if hep C or B positive
• Serology:
− hepatitis B, hepatitis C
− CMV, toxoplasma
− Syphilis
• Lipid studies and ASSIGN score if > 35 years – may underestimate cardiac risk in
people with HIV
• CD4 count – measures the level of the CD4 subgroup of T-lymphocytes and
indicates damage already done to the immune system. Send 2 x EDTA tubes to HIV
Immunology lab at WGH. Lab will supply forms on request. Specimen can be kept
overnight at room temperature if required.
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• Viral load – measures the number of viral RNA copies per ml of blood and is a proxy
of current disease activity and predictor of future immune damage. Test only
following discussion of the case with a specialist. Send 2 x EDTA tubes to Specialist
Virology Centre at RIE with normal virology form
• Chest X-ray: as a baseline for future and to exclude past/current tuberculosis.
The most important test for a patient not under regular specialist review is
a CD4 count to determine the level of immunodeficiency and
risk of opportunistic infections
NEW PATIENT TO PRACTICE - ALREADY DIAGNOSED WITH HIV
Initial assessment in primary care
When you see a new patient with known HIV infection it is important to get a baseline
history of their HIV disease including:
• Time of diagnosis and probable length of infection (may predate diagnosis by some
time)
• Current specialist care, last and next appointment
• Recent CD4 count – a count taken within the last three months can be used to judge
the persons susceptibility to opportunistic infections
• Current antiretroviral medication – medication should be recorded on GP prescribing
system as a hospital prescribed medication to allow interaction alerts to be triggered
(for VISION it is suggested that the medication is entered as a repeat medication,
prescribing one tablet with the instruction ‘for interactions only’)
• Other medication – e.g. are they on co-trimoxazole for PCP prophylaxis if
CD4<200?
• Any HIV-related illnesses and admissions?
• Medical history: standard past medical history including drug allergies.
PRIMARY CARE MEDICAL MANAGEMENT OF HIV-RELATED ILLNESS
Patients with diagnosed HIV who are under specialist care will often still use primary care
for support, management of non-HIV-related conditions, and for diagnosis of signs and
symptoms they experience.
Primary care clinicians may find it difficult to assess whether a presentation is HIV-related
and how to judge its significance. The CD4 count can be a valuable tool to assist in
assessment of the patient if a recent (<3 months) result is available.
In general a patient with a lower CD4 count is more likely to have an HIV-related
condition and to be more seriously unwell – refer early.
CD4 Count and Risk of Illness
Cd4 Count
Immune deficiency
Disease state
300-1000
Minimal/None
Risk of opportunistic infections (OI) is low, some
tumours are more common (e.g. lymphoma,
cervical carcinoma)
200-300
Moderate deficiency
Bacterial chest infections, diarrhoeal illness, skin
infections, reactivation of TB
<200
Severe deficiency
At risk of pneumocystis carinii pneumonia (PCP)
and other OI – seek advice and refer early
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HIV-RELATED CONDITIONS
Patients in the UK are often diagnosed late in the course of their infection – their CD4
count is below 350, the point at which antiretroviral treatment would be started, or even
below 200. Studies have shown that patients have often presented in general medical
settings prior to diagnosis with symptoms and illnesses that were related to HIV infection
but were not offered testing. THINK HIV AND OFFER TESTING – you are more likely to
harm someone by not offering a test than by taking a test with informed consent.
You are more likely to see the following conditions in a patient with HIV who has not yet
been diagnosed.
Pneumocystis Carinii Pneumonia (PCP)
This is a respiratory infection with a typically insidious onset. It occurs in patients with a
CD4 count of less than 200 and is often the first Opportunistic Infection (OI) acquired in an
untreated patient. This means that it can be the presentation of HIV infection in an
undiagnosed patient and a high index of suspicion must be maintained for patients at risk.
Typical symptoms are:
• Dry cough
• Slowly increasing breathlessness over a few weeks
• Fevers.
Examination is often unremarkable and the CXR normal or minimal hazy changes.
Differential diagnoses include mild chest infections and asthma/COPD. Clues to HIVrelated disease may be obtained from clinical history of risk of infection and examination
for other signs of immunodeficiency such as oral thrush, oral hairy leukoplakia (see
below), seborrhoeic dermatitis, shingles or recent history of these.
If there is a suspicion of PCP pneumonia, refer urgently for specialist assessment and
diagnosis. Do not treat chest infections empirically with Co-trimoxazole.
Skin conditions
The skin is a common site for the early manifestations of immune deficiency. These are
often common medical conditions but may be more severe, more resistant to treatment or
recurrent:
• Fungal infections such as tinea pedis and cruris, nail infections and thrush
• Herpetic recrudescences – cold sores, genital herpes and shingles (especially
recurrent or multi-dermatomal)
• Seborrhoeic dermatosis – extensive and resistant to treatment
• Papular pruritic rashes
• Extensive viral warts and molluscum contagiosum (unusual in an adult)
• Bacterial infections – impetigo.
If an undiagnosed patient presents with these in conjunction with other signs and
symptoms (chest infections, lymphadenpathy), or if the skin conditions seem more severe
or recurrent than usual, discuss HIV risk and testing with the patient.
Mouth and mucous membranes
Opportunistic infections and neoplastic diseases affecting the gastrointestinal and genital
tracts are common even in patients with less severe immunodeficiency (CD4 350 and
below):
• Oral thrush and, more severely, oesophageal thrush causing heartburn and
dysphagia
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• Oral hairy leukoplakia is only seen in patients with HIV. It is seen as white
filamentous lesions on the side of the tongue
• Oral herpes – severe and recurrent
• Gum and dental problems
• Vaginal or penile thrush
• Genital herpes or warts
• Cervical cancer is more common and HIV positive women should have annual
cervical cytology.
Other HIV-related conditions
Some other conditions may also be seen as first presentation of HIV disease or in existing
patients:
• Kaposi’s sarcoma – a multi-focal skin tumour that typically appears as purplish firm
plaque on the skin or mucous membranes but can occur anywhere in the body.
Patients require urgent referral for treatment
• Abnormalities on full blood counts – lymphopaenia, thrombocytopaenia and
anaemia
• Tuberculosis – reactivation of pulmonary TB can occur at relatively high CD4 counts
and extrapulmonary TB in more immunodeficient patients
• Lymphomas are more common in HIV patients and all patients with lymphoma will
now be tested for HIV
• Cytomegalovirus infection of the retina affects patients with more severe
immunodepression. Initially causing floaters and blurred vision it advances to
blindness if untreated
• Neurological symptoms such as headaches, meningism, focal neurological signs,
cognitive impairment and seizures may all be caused by HIV-related conditions.
These include fungal cryptococcal meningitis, abscesses due to toxoplasmosis and
direct HIV infection of the brain. Patients with lower CD4 counts should be
investigated more urgently and aggressively if presenting with neurological
symptoms.
For a full list see Clinical Indicator Diseases for Adult Infection – see Appendix A.
Monitoring and ongoing review for HIV patients not attending specialist care
Patients with HIV should be encouraged to attend specialist services regularly for their
ongoing review. If they are unable or unwilling to do so, they should be encouraged to
attend for review in primary care or that review is undertaken opportunistically. In these
cases close links should be maintained with specialist colleagues to inform them and for
advice on management.
As a minimum, a CD4 count should be undertaken every 3 – 6 months.
At consultation patients should have:
• History taken – ask re diarrhoea, rashes, sore mouth, dysphagia, weight loss,
sweating, visual disturbance
• Examination – weight, lymphadenopathy, oral thrush and oral hairy leukoplakia
• Bloods – CD4, FBC + LFTs, a-fetoprotein if HCV-positive (tumour marker for
hepatoma). Viral load if possible
• Annual Lipid studies and ASSIGN score due to increase cardiovascular risk (but
ASSIGN may underestimate risk)
• Assess level of support and consider referral to support agencies
• Emphasise avoidance of transmission and offer follow-up to contacts
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• Cervical smear annually – increased risk of dysplasia and faster progression in HIVpositive women. SCCRS can now organise annual recall for HIV positive women.
Patients should have a sexual history taken at least annually – see Sexual and
Reproductive Health – and, if at risk, be screened for STIs including syphilis, gonorrhoea
and chlamydia.
Symptomatic treatment
• Consider oral acyclovir for recurrent herpes
• Sore mouth – consider oral thrush – treat with fluconazole 50mg daily for
1 week
• Pneumocystis carinii pneumonia (PCP) – unlikely to develop unless CD4 <200.
Discuss with GUM / RIDU if suspicious and do not treat empirically. Start Septrin
480mg per day as PCP prophylaxis when CD4 <200
• If CD4 <500 or viral load >60,000 copies per ml, discuss advancing
immunosuppression, risk of illness and effectiveness of antiretroviral treatment
available through specialist care.
SPECIALIST HIV CARE AND ANTIRETROVIRAL TREATMENT
Pharmacological treatment of HIV usually involves the use of a combination of three or
four antiretroviral drugs. A table of some of the most common antiretroviral drugs and
related adverse and unwanted effects is available at:
http://www.aidsmap.com/resources/Antiretroviral-drugs-chart/page/1412453/
CD4 count is the most important indicator of when to start treatment for HIV. It measures
the number of CD4 lymphocytes in the blood and is an indicator of the health of the
immune system. Current UK guidelines recommend commencing treatment before the
CD4 count drops below 350. In general the trend is to start people earlier on treatment
especially as successful treatment considerably reduces the risk of onward transmission.
Treatment is also used to prevent mother-to-child transmission and in anyone who has
had significant HIV-related condition regardless of CD4 count.
Viral load is a measure of the amount of HIV in the blood. This test, also known as the
PCR test, is a useful measure to detect whether or not treatment is effective. A high viral
load (>30,000) means that a large amount of virus is circulating. A low viral load (<1000)
means that there is less HIV in the blood, with fewer CD4 cells being destroyed. The
immune system will remain healthy for longer if the viral load remains low.
Treatment for HIV aims to stop the virus replicating, allowing the immune system to
recover and to control the amount of the virus. Treatment aims for an undetectable viral
load (<40 copies/ml). A baseline measure is always taken before treatment is started.
It is recommended that viral resistance testing is undertaken before starting treatment.
Resistance can develop when an individual’s treatment regime is not effective enough to
adequately suppress HIV replication. This may be due to an individual missing doses of
their treatment.
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Highly active antiretroviral drug therapies
Known as Highly Active Antiretroviral Treatment or ‘HAART’ (also sometimes referred to
as ART or combination therapy):
• A combination of antiretroviral drugs can significantly reduce HIV viral replication
and allow the immune system to recover. Most combinations consist of three or four
drugs. There are now over 20 drugs to choose from, so a suitable regime can be
found for the majority of patients
• Good adherence is necessary to maintain viral suppression and to avoid drug
resistance
• Regular monitoring (Viral load, CD4, and blood tests) are necessary to monitor
treatment effectiveness and to detect possible toxicity at an early stage
• Sometimes people have to change drug therapy because they have adverse effects
or their HIV has not responded or they have become resistant to initial drug regimes
• HAART is not a ‘cure’ for HIV infection. Even with an ‘undetectable viral load’ there
is still HIV present in the body that would replicate if HAART stopped
• HAART is most effective if started when the CD4 is above 350. If started early it is
thought that life expectancy for an individual on treatment will be almost normal
• An undetectable viral load does not mean that an individual cannot transmit HIV but
it significantly reduces the risk
• Many of the drugs are now available in combination tablets in an attempt to reduce
the pill burden and improve adherence.
Currently there are five different types of approved antiretroviral medication. These drugs
are all aimed at stopping HIV reproducing. A list of these groups and individual
medications is available at http://i-base.info/guides/category/arvs.
Drug interactions
Drug interactions with antiretroviral drugs can be problematic. Other antiretroviral drugs
can affect levels of methadone, other illicit drugs such as amphetamines, and many
commonly prescribed drugs. Patients are normally given a ‘drug information sheet’ when
they first start new medication. This warns them of drug interactions and advises them to
contact the hospital pharmacy or their prescriber for advice if needed.
Add Antiretroviral Medications To Existing Clinical Systems So That Automatic
Checks For Interactions Are Activated.
On the VISION system the medications can be entered as repeat prescriptions.
Prescribe one tablet, in the directions for use write ‘for interactions only’ and authorise
for one repeat only.
Some common drugs that can have important interactions with HAART include:
• Statins
• Clarithromycin and Erythromycin
• Proton Pump Inhibitors
• Phenytoin, Carbemazepine
• Methadone
• Sildenafil and other Ed Drugs
• Oral contraceptives
• Tricylic antidepressants and St John's Wort.
Do not prescribe these drugs without checking for interactions.
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The University of Liverpool provides a comprehensive HIV drug interactions site at
http://www.hiv-druginteractions.org and an app is also available for the i-phone.
For further details see the British National Formulary www.bnf.org or
http://www.aidsmap.com/Drug-interactions-and-pharmacokinetics/cat/1465/.
Information about interactions can also be obtained from the HIV pharmacist at the
Western General Hospital (0131 537 1000) or at GUM (0131 536 2079).
If you are still uncertain about prescribing any drug to a patient on HAART, check
with the HIV pharmacist at GUM or RIDU or the HIV medical team at GUM or RIDU.
Adverse and unwanted effects
Adverse and unwanted effects can be early, persistent, or long term. Each antiretroviral
drug has its own particular profile of unwanted effects.
Common unwanted and adverse effects include:
• Diarrhoea
• Nausea and vomiting
• Skin rash
• Dry, skin, nail problems, hair loss, frozen
shoulder
• Sexual problems
•
•
•
•
•
•
More serious unwanted and adverse effects include:
• Peripheral neuropathy
•
• Lactic acidosis
•
• Pancreatitis
•
• Fatty Liver
•
• Hypersensitivity reaction to Abacavir
•
• Kidney toxicity including kidney stones
•
•
Fatigue
Insomnia
Mild mood alteration
Anxiety
Dizziness
Headache
Liver toxicity and rash
Injection site reactions (T-20)
Lipodystrophy
Increased CV risk and heart
disease
Bone mineral changes
Increased bilirubin, jaundice
Severe mood alteration
Source: http://i-base.info/guides/side
The patient should be supported through the initial adverse effects (usually done by the
specialist antiretroviral prescriber) most of which are short term. Some adverse effects are
life-threatening and necessitate stopping the medication immediately.
A quick reference guide to managing adverse effects can be found in the MEDFASH
publication HIV in Primary care, available at:
http://www.medfash.org.uk/uploads/files/p17abjng1g9t9193h1rsl75uuk53.pdf.
A useful guide to avoiding and managing unwanted and adverse effects (aimed at patients
but useful for staff) is produced by i-base and available at:
http://www.i-base.info/guides/side/.
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Metabolic diseases in HIV patients and cardiovascular risk
Antiretroviral treatment, especially with protease inhibitors, can have significant effects on
lipid and glucose metabolism which are becoming increasingly important.
The changes in lipid metabolism were first noticed when patients developed facial wasting
and dorsal humps. Increases in cholesterol levels and triglycerides also occur and lead to
an increased risk of cardiovascular disease. Patients should be screened for impaired
glucose tolerance and diabetes.
It is increasingly important, due to longer life expectancy with effective antiviral therapy,
that assessment of cardiovascular risk factors, including family history, smoking, exercise,
alcohol intake and blood pressure, are undertaken on all patients and appropriate advice
and/or treatment is given.
Risk factors should be managed appropriately using existing guidelines for primary and
secondary prevention but with an awareness of possible drug interactions with HAART.
HEPATITIS C INFECTION
Most patients are asymptomatic during acute infection but very rarely it can cause an
acute hepatitis with jaundice. Screening for hepatitis C is important in patients who
present with such symptoms.
About 80% of those infected develop a chronic infection which can be asymptomatic, or
can cause non-specific ill health such as malaise, myalgia, poor concentration and low
mood. LFTs may be within normal range even in people with significant liver disease.
Initial screening is with an antibody test (see the Testing section for details). A positive
antibody test shows exposure to the virus but not whether infection is ongoing.
It is very important to establish whether the patient has had a viral load (PCR) test or a
positive ANTIGEN test. The PCR test detects HCV RNA and, if it is positive, shows
evidence of active infection. The ANTIGEN test detects a viral protein and, if it is positive,
also shows an active infection.
All patients with a positive HCV antibody test should have an ANTIGEN or PCR test
taken. In most cases this will have been done automatically by the virus lab but if the test
was taken some years ago this may not have happened. In Lothian the initial test for
ongoing infection is now the ANTIGEN test (see the Testing section):
• Antigen or PCR test positive: this indicates ongoing active infection and these
patients should be referred for specialist assessment – see Referral to Specialist
Care
• Antigen test negative: requires confirmation with a subsequent PCR test to confirm
that there is no evidence of ongoing hepatitis C infection (see Testing section)
• PCR test negative: a negative test suggests that the patient has cleared the virus.
They should be given further advice about preventing future infection as HCV
antibody positive status does not confer immunity to future re-infection.
Patients who continue to engage in risk-taking behaviour should have repeat PCR testing
every 6-12 months.
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Initial assessment and investigations of Antigen or PCR positive patients
A baseline assessment of a new patient with hepatitis C should include the following:
• An estimate of how long since infected (may predate diagnosis by some time)
although this may be difficult to ascertain
• Route of infection (indicates risk for other infections such as hep B and HIV) and is
important epidemiologically
• Current specialist care, if any
• Medical history: standard past medical history including drugs and drug allergies.
Past and current illicit drug use is very important
• History of testing for HIV, HBV and HAV.
Other investigation in active (Antigen or PCR positive) HCV disease:
• FBC to check for anaemia, neutropaenia
• U+E, creatinine, calcium
• LFT
• Glucose
• HIV, HBV and HAV testing should be considered for all patients who have been
tested for HCV (PCR positive or negative).
Primary care medical management of HCV
Encourage all patients who are Antigen or PCR positive to have a specialist referral.
Increasing evidence suggests that early referral for assessment and treatment is
beneficial. In some areas of Lothian there are HCV nurse-led outreach clinics which offer
information, education, assessment and treatment.
At the same time as you refer for HCV specialist care, think about whether there are other
medical or social issues that may prevent the patient from starting or completing HCV
treatment – aim to help the patient with these from the start. Referral to an HCV support
agency such as C-Plus or Waverley Care should be done at the same time as specialist
referral.
• Discuss avoidance of further infection risk and prevention of onwards transmission.
It is important to document this discussion
• Inform them about the implications for their health of long term infection
• Offer immunisation against hepatitis B and hepatitis A if required (see the
Prevention section)
• Encourage abstinence from alcohol or at least drinking below maximum
recommended limits. Alcohol causes liver disease progression in HCV infection and
reduces response to treatment (SIGN 2013). Offer referral to alcohol support
services if required
• Stabilisation of problem drug use, especially if injecting, improves both general
health and adherence to treatment. Refer to local drug services for assessment and
initial management
• If patients continue to inject, ensure they are aware of how to access clean injecting
equipment / IEP service or needle exchange
• Assess for depression and treat / refer for treatment if required. HCV treatment with
interferon can exacerbate or precipitate a depressive episode
• Monitor weight and provide help with weight reduction (risk of non-alcoholic fatty
liver disease which causes cirrhosis irrespective of any other causes). Provide
nutritional advice and support to people who are HCV positive to optimise their diet.
Advice can be sought from the community dietitian
• Advise all patients to stop smoking, as smoking can increase progression of HCV –
refer to smoking cessation services if necessary
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• Inform patient about support services for people with hepatitis C in Lothian and refer
or advise self-referral. People with complex social and psychological needs will
benefit from referral to support services at the same time as referral for specialist
medical treatment.
Referral and treatment
Early referral is advantageous. Chronic HCV does not progress in a linear fashion but
accelerates with ageing: many patients with HCV will develop cirrhosis in the long term.
Therapy is more effective when administered in the early stages of the disease.
The aim of HCV treatment is to eradicate the virus, effectively curing the infection. A
negative PCR test for HCV six months after the end of treatment, is taken as proof of viral
eradication. This is called a sustained viral response or SVR.
The most recent SIGN guidance (2013) advocates assessment for treatment for all
patients with HCV, including those with mild to moderate hepatitis on biochemical
markers. It recommends that drug and alcohol use, including active injecting, should not
exclude individuals from assessment for treatment.
Assessment
Assessment at the specialist clinic will include blood tests and transient elastography as
the initial tests for liver disease in adults newly referred for assessment. Elastography,
also known as fibroscanning, is an ultrasound-based technique to determine liver fibrosis.
In most cases this has replaced liver biopsy, although liver biopsy may still be required in
some younger patients with a normal fibroscan but with biochemical evidence of liver
disease and high HCV viral loads.
Blood and other tests will include:
• hepatitis B surface antigen (HBsAg)/antibody (anti-HBs) status
• IgM antibody to hepatitis B core antigen (anti-HBc lgM)
• HIV antibody (anti-HIV)
• lgG antibody to hepatitis A virus (anti-HAV)
• additional laboratory tests including alanine aminotransferase (ALT) or aspartate
aminotransferase (AST), gamma-glutamyl transferase (GGT), serum albumin, total
bilirubin, total globulins, full blood count and prothrombin time
• tests for hepatocellular carcinoma, including hepatic ultrasound and alphafetoprotein testing.
The patient will also have an assessment of psychological status, dietary status and
general medical health. It is important to advise patients that they will not receive Hepatitis
C treatment at their first few appointments but will require an assessment process over a
few weeks before starting treatment. A patient leaflet showing this process is available –
see Appendix H.
Current treatment depends on the genotype of the HCV that the patient is infected with
but it is possible to achieve up to a 75% cure rate for all the common genotypes if a
patient is treated before they have significant liver disease.
Genotype testing is carried out by the specialist unit after referral. There are seven
genotypes of HCV of which G1, G2 and G3 are the most common in the UK. In Lothian
45-60% of people will be infected with genotype 1 (G1).
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PHARMACOLOGICAL TREATMENT
Non-genotype 1 HCV (all genotypes except G1)
Treatment for non-G1 HCV is with a combination of pegylated Interferon alpha given as a
weekly injection and oral ribavirin given daily. Treatment usually lasts between 16 and 26
weeks but can be up to 48 weeks.
Interferon alpha is a synthetic copy of natural protein produced by the human body in
response to infection. It has some direct antiviral effects and stimulates the immune
system to fight foreign organisms. Pegylated interferon alpha is a modified version of
interferon alpha which has been designed to stay in the body for longer. This allows for
the interferon to be taken by injection once a week.
Ribavirin is a nucleoside analogue (NRTI) which disrupts viral replication.
In treatment trials combination therapy (pegylated interferon and ribavirin) achieved up to
an 80% success rate for non-G1 patient without advanced liver disease. These large trials
do tend to produce slightly higher levels of treatment response than are achieved in actual
clinical practice, and only include patients who have not been previously exposed to
treatment.
Treatment success is determined by undetectable viral load six months after treatment
(Sustained Virological Response - SVR):
• Treatment of genotype, 4, 5, and 6 last for 48 weeks and leads to SVR rates of
between 38 to 50%
• Treatment of genotype 2 and 3 lasts for 24 weeks and leads to SVR rates of
between 75 to 80%
• Early Virological Response (EVR) is important in deciding if treatment should be
continued beyond week 12. If a minimum of a hundredfold drop in viral load is not
achieved then treatment is stopped early as further treatment is very unlikely to
produce any response.
Genotype 1 (G1) HCV
G1 HCV, the most common genotype in Scotland, does not respond so well to standard
interferon and ribavirin treatment. Since 2012, new drugs, which are direct acting antivirals called protease inhibitors, have been available to treat G1 infected patients.
The new drugs are used in combination with standard interferon and ribavirin treatment
and have increased the cure (sustained viral response) rate in patients without advanced
liver disease to 75%.
The currently available protease inhibitors (PI) are Telaprevir and Boceprevir. They are
taken for 12 - 40 weeks along with IFN/Ribavirin treatment which may last up to 48 weeks.
The duration of treatment depends on factors including virological response to treatment,
previous treatment failure and stage of liver disease.
The PI treatments have greatly improved the success rate of G1 HCV treatment but have
added new adverse effects on top of those already caused by IFN/ribavirin.
New drugs are on the horizon for treating Hepatitis C that offer the potential of treatment
regimes without using interferon, which would greatly reduce side-effects for patients. As
of July 2013, none of these drugs is licensed and there are significant concerns about
affordability when they do become available, particularly as existing regimes offer high
cure rates, albeit with notable adverse effects.
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Unwanted and adverse effects of treatment
IFN/Ribavirin
Unwanted and adverse effects are common and vary greatly between individuals.
Adherence to treatment can be improved by good management of the individuals’
symptoms.
• Flu-like symptoms: Experienced by most patients, they include: fever, rigors,
aching joints and muscles and headache. This can be helped by information,
paracetamol, increased fluids and rest
• Anaemia is common. Regular testing is important, with treatment as required.
Effective treatment can avoid the need for a dose reduction with associated drop in
treatment response. Erythropoietin has been found to be helpful in some people
• Depression: Assess mental state before treatment and monitor regularly during
treatment. Anti-depressants can be of benefit
• Skin reactions: Dry skin, eczema and pruritis are common and affect about 20% of
patients. Manage with emollients, antihistamines, and topical steroids as required.
Existing psoriasis may deteriorate. Severe skin reactions are uncommon
• Thyroid dysfunction: Monitor regularly during treatment as about 6% of those
receiving treatment become either hyperthyroid or hypothyroid
• Fatigue is commonly reported and is probably related to several things including
sleep disturbance, anaemia, depression, nutrition etc. – advise on rest, diet, and
sleep hygiene
• Insomnia is commonly reported. Discuss sleep hygiene measures
• Weight loss is common – offer nutritional advice. Referral to a dietitian may be
appropriate
• Dyspnoea is rare and may be related to anaemia: dyspnoea in the absence of
anaemia requires urgent investigation
• Alopecia is relatively common – hair will grow back after completion of treatment.
Source: RCGP 2007
Protease Inhibitors (PIs)
In addition to the side-effects of IFN/Ribavirin patients on these medications can suffer
from additional adverse effects:
• Telaprevir – rash, itch and peri-anal itch have proved to be problematic side-effects
in use
• Boceprevir – anaemia is more common.
The PIs also have important drug interactions including with benzodiazepines and
methadone which have to be taken into account for both prescribed and non-prescribed
medications.
A full searchable list of interactions is available at:
http://www.hep-druginteractions.org/
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HEPATITIS B INFECTION
The incubation period after exposure is 40-160 days. Most children, and up to half of
infected adults, have an asymptomatic acute infection. Others may have symptoms
including flu-like symptoms followed by jaundice, nausea and fatigue. These usually last
about three weeks but can be up to 12 weeks. Fulminant life-threatening hepatitis occurs
in 1% of cases and chronic infection (lasting more than six months) occurs in 5-10% of
adults. Chronic infection is more likely in immuno-compromised patients, after vertical
transmission and in children when it occurs in up to 90% of cases.
Acutely ill patients with jaundice and other symptoms should be discussed with on-call
physician at RIDU or CLDD with a view to an urgent appointment or admission.
Initial assessment and investigations
Testing for hepatitis B is based on a series of antibody and antigen detection tests. It is
very important to clearly state clinical history, including possible time of exposure
to infection, and immunisation history on the test request form.
Interpretation of the results is complicated and the laboratory usually provides an
interpretation of the tests on the result form. The clinician must be clear about what each
test means as it is possible to confuse chronic infection with immunity (also see Testing
section).
The initial test for ongoing hepatitis B infection is for hepatitis B surface antigen (HBsAg) –
this is a viral protein detected in the blood stream. Chronic hepatitis B describes a
spectrum of disease usually characterised by the presence of detectable hepatitis B
surface antigen (HBsAg) in the blood or serum for longer than six months.
In some people, chronic hepatitis B is inactive and does not present significant health
problems, but others may progress to liver fibrosis, cirrhosis and hepatocellular carcinoma
(HCC). The progression of liver disease is associated with hepatitis B virus (HBV) DNA
levels in the blood.
Without antiviral treatment, the 5-year cumulative incidence of cirrhosis ranges from 8 to
20%.
People with cirrhosis face a significant risk of decompensated liver disease if they remain
untreated. Five-year survival rates among people with untreated decompensated cirrhosis
can be as low as 15%. Chronic hepatitis B can be divided into e antigen- (HBeAg) positive
or HBeAg negative disease based on the presence or absence of e antigen. The
presence of HBeAg is typically associated with higher rates of viral replication and
therefore increased infectivity.
Investigations in primary care
The latest NICE guideline on the management of chronic hepatitis B infection
recommends that we arrange the following tests in primary care for children, young people
and adults who are HBsAg positive:
•
•
•
•
•
•
•
hepatitis B-e antigen (HBeAg)/antibody (anti-HBe) status
HBV DNA level
IgM antibody to hepatitis B core antigen (anti-HBc lgM)
hepatitis C virus antibody (anti-HCV)
hepatitis delta virus antibody (anti-HDV)
HIV antibody (anti-HIV)
lgG antibody to hepatitis A virus (anti-HAV)
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• additional laboratory tests, including alanine aminotransferase (ALT) or aspartate
aminotransferase (AST), gamma-glutamyl transferase (GGT), serum albumin, total
bilirubin, total globulins, full blood count and prothrombin time
• tests for hepatocellular carcinoma, including hepatic ultrasound and alphafetoprotein testing.
However, awaiting these tests should not delay referral to the specialist unit (RIDU
or CLDD in Lothian), especially if there are signs of decompensated liver disease.
(Hepatitis B (chronic) Diagnosis and management of chronic hepatitis B in children, young
people and adults, Issued: June 2013; NICE clinical guideline 165:
http://publications.nice.org.uk/hepatitis-b-chronic-cg165)
Interpretation of Serological Markers
Status
Detection of
HbsAg
HbeAg
Anti-HBc
Anti-HBs
IgM Anti-HBc
Acute Infection
+
+/-
+/-
-
+
Chronic Infection
(>6 months)
+
+/-
+
-
-
Past Infection
(immune)
-
-
+
+/-
-
Immunity due to
immunisation
-
-
-
+
-
Primary care medical management of HBV-related illness
All patients with evidence of acute or chronic infection should be encouraged to accept
referral for specialist assessment at RIDU or CLDD - see Referral to Specialist Care.
Treatment with antiviral drugs can suppress viral replication reduce long term liver
damage, and in some cases result in viral eradication.
All patients with active infection should be advised to avoid unprotected sexual intercourse
(vaginal and anal), including oral sex, until they have become non-infectious or their
partners have been successfully immunised.
Advice on routes of transmission and prevention should be given and this advice
documented. Advice about the health implications of long term infection and the
implications for their partners and family should be given. Household members should be
offered a course of immunisation.
Contact tracing
The Health Protection Team at Lothian NHS Board is available to offer advice on the
management of contacts of cases of acute and chronic viral hepatitis. (Tel: 0131 536
9192). All practitioners have a legal duty to notify all new cases of viral hepatitis to this
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Team – in practice notification is usually done directly by the virus lab. Information is sent
from the Team directly to those found positive as well as to their GP.
For cases of acute hepatitis B, the Health Protection Team in the Public Health
Department will perform the contact tracing as a matter of urgency and liaise with a) acute
services to arrange hepatitis B immunisation (and immunoglobulin for those at highest risk
where indicated) and b) with primary care to arrange hepatitis B immunisation of other
close contacts.
For cases of chronic hepatitis B, the Health Protection Team will obtain information on
each case and any known contacts before sending a letter to GPs asking them to do the
contact tracing, testing and vaccination of contacts within their practice. A letter will be
included which GPs can give to the patient to hand to any contacts not registered with the
practice. GPs can request assistance with contact tracing from the Health Protection
Team.
Treatment of chronic hepatitis B in secondary care
The goal of treatment for chronic hepatitis B is to prevent cirrhosis, HCC and liver failure.
In clinical practice surrogate markers are used to monitor progression of disease and
treatment response, and include normalisation of serum alanine aminotransferase (ALT)
levels, decrease in inflammation scores with no worsening or improvement in fibrosis on
liver biopsies, suppression of serum HBV DNA to undetectable levels, loss of HBeAg and
seroconversion to HBe antibody (anti-HBe), and loss of HBsAg and seroconversion to
HBs antibody (anti-HBs).
Antiviral therapy suppresses HBV replication and decreases hepatic inflammation and
fibrosis, thereby reducing the likelihood of serious clinical disease. Since the introduction
of effective treatment in the form of interferon alfa, several nucleoside and nucleotide
analogues are now approved for use in adults with chronic hepatitis B, together with a
pegylated form of interferon alfa. With multiple treatment options that are efficacious and
safe, the key questions are which patients need immediate treatment and what sequence
and combination of drug regimens should be used, and which patients can be monitored
and delay treatment.
(Hepatitis B (chronic) Diagnosis and management of chronic hepatitis B in children, young
people and adults, Issued: June 2013; NICE clinical guideline 165:
http://publications.nice.org.uk/hepatitis-b-chronic-cg165)
Assessment of liver disease in secondary specialist care
In addition to the blood tests suggested above, prior to referral patients will have transient
elastography as the initial test for liver disease in adults newly-referred for assessment.
Also known as fibroscanning, this is an ultrasound-based technique to determine liver
fibrosis. In most cases this has replaced liver biopsy, although liver biopsy may still be
required in some younger patients with a normal fibroscan but with biochemical evidence
of liver disease and high HBV viral loads.
Anti-viral treatment for hepatitis B
The offer of treatment is individually tailored but will generally be offered to people with
evidence of inflammation or fibrosis of the liver, especially if they have a high HBV viral
load.
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First line treatment in almost all cases will be a 48-week course of peginterferon alfa-2a
(see Treatment of hepatitis C for side-effects and contra-indications to this treatment).
The new NICE guidance suggests that the direct acting anti-virals entecavir or tenofovir
disoproxil are offered as second-line treatment to people with detectable HBV DNA after
first-line treatment with peginterferon alfa-2a.
They also suggest that tenofovir disoproxil is given to pregnant HBV infected women with
HBV DNA greater than 107 IU/ml in the third trimester to reduce the risk of transmission of
HBV to the baby. This is in addition to immunisation of these babies after birth - see the
Prevention section.
Unwanted and adverse effects of hepatitis B treatment
The unwanted and adverse effects of interferon treatment are the same as those under
the hepatitis C treatment section. There are separate effects related to the use of
antiretrovirals Entecavir and Tenofovir, as well as important drug interactions which can
be seen at http://www.hep-druginteractions.org/interactions.aspx:
• Tenfovir – Kidney damage is now regarded as a rare side-effect of tenofovir;
anyone on tenofovir who begins to experience symptoms of extreme thirst, frequent
urination, confusion, or muscular weakness should report these symptoms to their
doctor immediately.
Other side-effects include nausea, vomiting, diarrhoea and flatulence, dizziness,
and a decrease in the amount of phosphate in the blood.
• Entecavir – The most common side-effects of Entecavir include headache,
tiredness, dizziness, and nausea. More serious side-effects include lactic acidosis
and liver damage.
Management of the End Stage Liver Disease (ESLD) in Hepatitis C and B
Treatment is multidisciplinary and may require the involvement of a palliative care
specialist – see the Palliative Care section. Management of the patient at home will
usually involve the GP and community nurses:
• Malnutrition is common in ESDL and can contribute to fatigue, wasting and
weakness. Dietary interventions can be effective, aiming for an increased intake of
calories and proteins. Protein supplements may be used and frequent snacks may
be encouraged. An assessment by a dietitian should be considered.
• Ascites or fluid retention is also common and impacts on the mobility and comfort.
A low salt diet can be helpful: assessment by a dietitian should be considered.
Diuretics can also help. Surgical procedures such as paracentesis or inserting a
shunt may be considered
• Chronic encephalopathy can improve with protein restriction – consult a dietitian.
The laxative lactulose can also be helpful. Long-term prophylaxis with norfloxacin
can improve or prevent spontaneous bacterial peritonitis, as well as improve
encephalopathy and reduce the risk of gastric bleeding
• Liver transplant is considered in cases of liver failure or hepatocellular cancer
where the cancer is still operable.
Source: ASHM (2006), Larson and Curtis (2006)
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Mental health
Depression is common in all patients with a chronic illness but particularly with BBV
infections. HIV and hepatitis C can also result in organic brain disease which can present
with symptoms such as memory problems and depression. Hepatitis C treatment with
interferon can aggravate or precipitate depression, as can some HIV treatments.
Screening for depression is important. Treatment options may be affected by interactions
with medications used to treat HIV or hepatitis C. Support services and psychological
treatments are available at the specialist clinics for infected individuals. The Community
HIV Team works specifically with HIV positive individuals who have mental health
problems. Voluntary organisations can also offer support and counselling to people with
blood borne viruses. See guidelines on pre-treatment mental health assessment HCV.
Children and BBVs
• HIV
• In Lothian, children diagnosed with HIV are treated by a specialist Consultant
Paediatrician at the Royal Hospital for Sick Children. See Services for details.
• Most children are infected through vertical transmission from their mother during
pregnancy or at birth. With the advent of antenatal screening for HIV and
hepatitis B in the UK and treatment to prevent vertical transmission the rate of
new infections is extremely low. Children born to HIV and HBV infected mothers
will be closely followed under specialist care up to determine their status.
• Children arriving from abroad, especially from the high risk areas of Africa, Asia
and Eastern Europe, may not have been detected antenatally if the mother’s HIV
or HBV status is not known. Referral to the RHSC for testing is recommended.
See the Services section.
• HCV
• Vertical transmission of HCV is rare and children are not commonly infected.
There is no routine ante-natal testing for hepatitis C but targeted testing of risk
groups may be undertaken by the midwives; this is not yet universally applied. All
children born to a mother known to be PCR positive are followed up by a
specialist from the RHSC – see the Services and Pregnancy sections.
• HBV
• Most paediatric infection is through vertical transmission which is endemic in
certain areas of the world such as South East Asia. Transmission from mother-tochild usually results in chronic infection which can cause severe liver damage in
later life. In the UK, antenatal screening for HBV should detect all pregnant
mothers who are carriers. This allows treatment of the newborn with passive and
active immunisation which effectively prevents infection.
• Children who are household contacts of an HBV carrier should be tested for HBV
and offered an accelerated immunisation course. This should be started
immediately and can be stopped if they are found to be immune due to previous
infection or if they are found to be currently infected. Any infected child should be
referred to the RHSC. (links to referral pathway).
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Complementary therapies
A wide range of ‘alternative’ therapies and treatment approaches are available. For
example, aromatherapy, massage, reflexology, acupuncture, herbal remedies,
homeopathy, shiatsu. Some are available on the NHS, some from HIV and BBV voluntary
services and many are provided privately.
There is a lack of supportive evidence from good quality studies; however, some people
find complementary therapies helpful for general relaxation and wellbeing. Therapies aim
to ‘complement’ conventional medical treatment.
It is important that treatment providers know if their clients are using complementary
therapies and that clients let their doctor know if they are using complementary therapies
as there can be important interactions with any pharmacological therapy.
Immunisation - also see the Prevention section
• Immunisation against hepatitis A and B should be actively promoted among at-risk
groups
• All patients with HIV or HCV should be immunised against hepatitis B and annually
against influenza
• All patients with HBV or HCV should be immunised against hepatitis A – consider
also for patients with HIV
• For HIV positive patients also consider immunisation against Pneumococcus.
Advanced care directives
For details on advanced care directives and the Incapacity Act Scotland 1990 see the
Palliative Care section.
Death certificates
It is important to record the actual cause of death on the death certificate. This may cause
some concerns about confidentiality – however, if the cause of death is not accurately
recorded there is a risk of underestimating BBVs as a public health concern, and
contributing to the stigma already attached to BBVs. The General Medical Council advises
that death certificates must be completed ‘honestly and fully’. See:
http://www.gmc-uk.org/guidance/current/library/confidentiality_faq.asp#q18
Note: the death certificate is a public document and not confidential. However it is
possible to provide confidential information by choosing the option on the death certificate
to state that more information will be available later. Correspondence with the General
Register Office for Scotland is totally confidential and it is possible therefore to amend a
death certificate in a confidential manner. The major concern with this method is the
possibility of fraud on insurance companies who rely on death certification to settle claims.
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BBVs and the Law
Confidential information is both legally and ethically protected from disclosure. A failure to
maintain confidentiality can give rise to a legal or professional body action. However,
confidentiality is not absolute and public interest favouring disclosure to third parties may
outweigh the duty to the patient. A health care worker cannot refuse to divulge
confidential information in court or in response to a court order. It is good practice to
advise patients about circumstances in which confidentiality may be breached.
If you diagnose a patient as having a serious communicable disease then you should
explain to the patient:
• The nature of the disease and its medical, social, and occupational implications
• Ways of protecting others from infections
• The importance of disclosing infection status to those giving medical care to allow
adequate clinical management.
If a patient who has been diagnosed with a BBV is not advised or improperly advised on
ways of protecting others, and a sexual partner becomes infected, the healthcare worker
is potentially liable even if the other person is not their patient. This also applies to
patients who have not been diagnosed with a BBV but in whom the diagnosis should have
been made because of clear risk signs and clinical symptoms and signs.
It is important to inform the patient of the risk of legal action if they do not disclose their
BBV status to sexual partners and there is then onward transmission of the virus. It is not
clear whether the consistent use of condoms (without disclosure) could provide a
successful defence.
Always consult expert advice and your defence union in all individual cases of disclosure
of confidential information.
HIV Scotland has produced a leaflet for people affected by HIV explaining the latest
situation which is available at: http://www.hivscotland.com/policy/policy-documentlibrary/view-document/prosecutions-for-hiv-and-sti-transmission-and-exposure-leaflet/
Occupational / needle-stick injury
For details of what to do after an occupational / needle-stick injury – see the Infection
Control section.
Post exposure prophylaxis (PEP) and post exposure prophylaxis after sexual
intercourse (PEPSE)
PEP can be given to reduce the likelihood of an individual developing infection after
exposure to HIV, HBV or HAV. Effectiveness of these interventions is critically time
dependent so act immediately - see the Prevention section for details.
PEPSE – individuals can be offered treatment to reduce the likelihood of infection with
HIV, hepatitis B, or hepatitis A following sexual exposure (PEPSE). There is no PEPSE
available for hepatitis C – see the Sexual and Reproductive Health section for details.
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The following list focuses on conditions more likely to present
or be picked up incidentally in a primary care setting.
For a full list of indicators see www. bhiva.org
DERMATOLOGICAL
• Fungal Nail
Infection
• Nodular Prurigo
• Seborrhoeic
Dermatitis
• Adult onset psoriasis or worsening of psoriasis in a person with previously mild
disease
• Shingles
(in an individual from a risk group or >1 episode or involving >1 dermatome)
ORAL
• Oral or
Oesophageal
Candida
• Oral Hairy Leucoplakia
(Lateral border of tongue)
NEUROLOGICAL
• Unexplained
Dementia
• Peripheral
Neuropathy
• Unexplained
Psychosis
• Neutropenia
• Lymphopenia
HAEMATOLOGICAL
• Thrombocytopenia
• Mononeucleosis like syndrome in adults
(Consider Seroconversion)
• ↑ ESR
OTHER
• Bacterial
Pneumonia
• Unexplained
Chronic Diarrhoea
• Unexplained
Lymphadenopathy
• Any STI
• Hep B or C
Infection
• Renal Impairment
• Cervical Intraepithelial Neoplasia - Grade 2 or above
• Herpetic Genital Ulceration persisting > 2 weeks
• Constitutional Symptoms, Unexplained Fever, Weight Loss
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Referring and re-referring hepatitis C individuals for specialist care
All HCV infected individuals should be offered referral for hepatitis C specialist
assessment for treatment and follow-up at either the Royal Infirmary of Edinburgh Liver
Unit or Western General Hospital, Infectious Diseases Unit. This includes:
• Newly infected individuals
• Those previously infected individuals who are now accepting / actively requesting
referral
• All infected individuals with evidence of significant liver dysfunction / cirrhosis/ signs
of hepatoma
• Anyone previously treated for HCV who did not achieve viral clearance should be
referred back if no longer in follow-up. They require monitoring and may be eligible
for new treatments
• Patients not wanting hepatitis C treatment currently but can benefit from HCV
monitoring at the specialist units.
When referring to a specialist centre please use the SCI template for referral and
• Obtain consent at the time for onward referral to support services indicating this on
the referral form where requested
• Consider also referring all patients simultaneously to support services for
information and support about hepatitis C
• Consider health, social and psychological issues which may need addressing to
enable the person to consider hepatitis C treatment.
For patients who have not engaged with hepatitis C treatment services after previous
referrals, consider the issues that may have led to failure to engage. It may be better to
address these issues (see Management of individuals with co-existing support needs
below) before referring back to the hepatitis C treatment services – DNA rates at these
clinics typically run at 60%. Remember:
• Referral to support services also qualifies for payment under the BBV LES if this is
more appropriate than a direct referral to the specialist service
• All hepatitis C and drug support agencies can directly refer patients for treatment.
Treatment clinics may contact you about re-referrals of patients who have previously
DNA’d at their service to discuss what other management and support they may need to
help them engage with HCV treatment.
Management of individuals with co-existing support needs
Some individuals may require additional support and management in addition to or before
referral to a hepatitis C specialist centre. Discuss additional needs with the patient and
refer for appropriate support - See the Hepatitis C Referrals flowchart below. If they are
already attending support agencies, consider contacting them to ensure adequate support
is available before they start hepatitis C treatment. This includes:
• Those who are unsure about wanting hepatitis C treatment / follow-up: refer to C
Plus/ Waverley Care
• Those with significant other physical health issues (including dental) where current
management is suboptimal (e.g. epilepsy, skin complaints, pain control, COPD, IHD,
diabetes): refer to relevant specialty and if appropriate to BBV Care Management
Team/Drug Referral Team/Alcohol Referral Team or generic social work care if
outwith Edinburgh
• Those with active/severe mental health problems, including untreated or partially
treated depression or severe anxiety, suicidal ideation or active psychosis: refer
back to or discuss with mental health services who know the patient. If not known to
services, refer to local mental health team or CDPS psychiatrist
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• Those with substance misuse problems (alcohol or drugs) who are not currently
stable in treatment: refer to CDPS/ Drug Referral Team / Alcohol support
• Those with significant active personal or social problems (housing, relationships,
social, benefits problems): refer to BBV Care Management Team/Drug Referral
Team or generic social work care if outwith Edinburgh.
Those not wanting a hospital referral / not attending hospital appointments should be:
• Offered a referral to C-Plus or Waverley Care for hepatitis C support, and
• monitored using the Primary Care Protocol until they attend hospital appointments.
This is important in order to assess potential liver cirrhosis and liver cancer.
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Hepatitis C Referrals
Hepatitis C infected
patient agrees to hospital referral
YES
NO
Co-existing needs? (addiction,
physical, psychiatric, social)
Unsure about or refuses hospital
referral/or persistent hospital DNA:
Primary Care Protocol AND refer to
C-Plus/Waverley Care
No: Refer to
RIE/WGH AND
C-Plus/ Waverley
Care
Yes
Previous persistent DNA?
Yes: Think, WHY?
Refer to C-Plus/
Waverley Care
AND
Consider referral for additional
support before or along with
referral to RIE/WGH
Mental health
problems
including
untreated/ partially
treated
depression/
anxiety: Refer to
local Mental
Health team or
CDPS psychiatrist
Significant
physical health
problems
(incl dental)
requiring attention:
Refer to relevant
specialty/ manage
in primary care
No: Refer to
RIE/WGH AND
C-Plus/
Waverley Care
AND CONSIDER
Substance Misuse
issues/Multiple or
Complex needs:
Refer to
substance misuse
service and
relevant social
care
Social/personal
problems: Refer to
BBV Care
Management
Team (Social
Care if outwith
Edinburgh)
Significant liver
dysfunction,
cirrhosis or signs
suggesting
carcinoma of liver:
Refer to RIE AND
BBV Care
Management
Team or Social
Care if outwith
Edinburgh
When more
stable refer to
RIE/WGH
Contacts:
Substance Misuse Services NHS: 0131 537 8343
Alcohol Problem Service: 0131 537 6557
Drug/Alcohol Referral Team (City of Edinburgh Council): 0131 469 6222
West Lothian Addiction Services (WLDAS): 01506 282 845
Mid & East Lothian Drugs (MELD): 0131 660 3566
BBV Care Management Team (City of Edinburgh Council): 0131 469 6222
Social Care: Midlothian: 0131 271 3900; E Lothian: 08456 03157; W Lothian: 01506 777 777
C-Plus: 0131 478 7929
Waverley Care: 0131 558 1425
C-Plus or Waverley Care will be able to tell you about hepatitis C infection - how it can affect you, what you can do to help
yourself and what treatment involves. They can also help you get to clinic appointments and to get other support that you might
need.
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SOCIAL CARE
SUMMARY BOX
• Good quality social care can:
• Increase access to treatment
• Improve outcomes for those in treatment
• Improve outcomes for those not in treatment
• Lead to a reduction in risk behaviour and a cut in BBV transmission.
• Social care should be well integrated with health services.
• It is vital that support is provided for carers.
• Patients and their carers can be referred or self-refer for social work support and
this will be dependent on level of need.
• Support for various types of social needs is available for people with a BBV,
carers or family from statutory and voluntary services.
‘Good’ social care is vital in maintaining and improving an individual’s health and it has
been shown to improve access to blood borne virus (BBV) treatment, improve treatment
outcomes and improve BBV-related outcomes for those not in treatment (Tran et al, 2013;
Joy et al, 2008; Mitchell et al, 2007). Improving an individual’s social circumstances can
also lead to a reduction in risk-taking behaviour leading to reduced transmission of BBVs
(Latkin et al, 2013; Rhodes and Treloar, 2008).
Social care support can be provided by Statutory and Non-Statutory (voluntary) services,
private sector services, by families, partners, and friends. Social care should be provided
in an integrated model, i.e. a person accessing health services should be able to find it
easy to access social care services, and vice versa.
The Services section lists organisations, agencies and groups that can provide various
types of support.
SECTION LINKS FOR SOCIAL CARE
Social Work Assessment and Support
Carer Assessment and Support
Welfare Benefits Advice
Housing and Home Support
Social Support
Counselling
Respite Care
Children and Young People’s Services
Transport Support
Further information on social issues for people with HIV and hepatitis C:
http://www.aidsmap.com/resources/Social-legal-issues-for-people-withHIV/page/1497492/
http://www.hepctrust.org.uk/Support/Types+of+Support/The+importance+of+support.htm
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Social Work Assessment and Support
In Edinburgh City people diagnosed with HIV and hepatitis C can access advice and
assessment for their social needs. Support that can be offered can include housing if
poorly housed or homeless, short-term support in the home, counselling and access to
services for employment and education. For people leaving the Western General Hospital
as an inpatient benefits advice can also be provided.
Short-term support can be provided to people living with hepatitis C in overcoming issues
that prevent them from accessing treatment. The Regional Infectious Diseases Unit has
attached social worker support. For further information:
http://www.edinburgh.gov.uk/info/1404/health_and_medical_information/760/hiv_aids_and
_hep_c
Patients and/or carers may be provided with a comprehensive Community Care
Assessment (CCA). The provision of a CCA may be dependent on individual
circumstances and level of support required. To refer it is recommended to contact Social
Care Direct (see above link for further detail). A CCA can include the following:
• Social circumstances – family,
childcare, support networks, local
community services
• Housing (appropriateness of
accommodation and safety issues)
• Financial assessment (benefits,
budgeting, debts etc)
• Legal issues (offending, court cases,
need for legal representation,
immigration etc)
• Activities of daily living and practical
needs (shopping, cooking, dressing,
washing, cleaning etc)
• Mobility needs
• Communication needs
• Employment, training, education
needs
• Spiritual needs
• Planning for death and dying
• Carers needs
A social worker can carry out a community care assessment to help identify social care
needs. If required, the social work department may be able to form a package of care
which will help meet these needs. This may involve a range of statutory and non statutory
services. In some cases people will be allocated a care manager responsible for
coordinating the care provision.
The level and availability of assessment and support may vary in Lothian Local Authorities
Social Work Departments. We advise contacting your local authority for further
information.
Carer assessment and support
Some Carers require support to:
• Enable them to provide good care for the individual
• Reduce the risk of them developing their own physical and mental health problems.
Carers often experience health problems because of a lack of appropriate support,
isolation, financial stresses, and lack of information (Carers UK, 2013).
Support is available to carers on benefits advice and carer support groups and if carers
provide regular and substantial advice they may be entitled to a needs assessment by
social work.
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For further information on carer support:
http://www.carersuk.org/scotland
http://www.edinburgh.gov.uk/info/1352/carers
Welfare benefits advice
Benefits-related information can be provided by hepatitis and HIV support services that
can refer people on to the most suitable service for advice and support. You can also seek
advice online or in person from the Citizens Advice Bureaux.
For further information see the links below:
http://www.waverleycare.org/content/adviceandinformation/116/
http://www.adviceguide.org.uk/scotland/benefits_s.htm
Support agencies for patients and carers can also provide help with accessing financial
advice.
Housing and home support
Information and support can be provided by non voluntary agents on housing issues and
can act as a support when communicating with housing landlords, housing associations
etc.
http://www.waverleycare.org/content/adviceandinformation/116/
Support in the home can be given to people with HIV and hepatitis C to allow them to live
as independently as possible. This can include help with tasks such as cooking, ironing
and cleaning. For further information:
http://www.positivehelpedinburgh.co.uk/page-sub.aspx?pageID=12
Edinburgh City Council social work service can provide housing support for vulnerable
people with HIV/HCV in Edinburgh. Social Services will carry out an assessment of need
in this area and offer support required for your level of need. For further details of Social
Services, see the Services section and below:
http://www.edinburgh.gov.uk/info/1404/health_and_medical_information/760/hiv_aids_and
_hep_c
Social support
There are agencies throughout Edinburgh that can provide support to individuals with a
BBV diagnosis. They can provide peer group support, one-to-one befriending support,
help with accessing services and agencies, practical day-to-day help, education, healthy
living advice, social activities and more. They can also provide support in accompanying
people to appointments for their blood borne viruses.
Further information on local support:
http://www.waverleycare.org/content/ourservices/108/
http://www.addaction.org.uk/page.asp?section=363&sectionTitle=C+Plus+%2D+Helping+
you+live+positively+with+hep+C
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Counselling
Many BBV-positive people and their carers benefit from supportive counselling as this
offers an opportunity for them to talk about their diagnosis and the effects of the illness on
them and their family. Counselling and support are offered by a number of agencies
throughout Lothian.
See the link below for further information on support:
http://www.waverleycare.org/content/counselling/123/
Respite care
Residential respite care can be accessed in Lothian for people with HIV and hepatitis C.
There may be times when this is beneficial, including decline in physical and mental
health, when changing treatments and if care needs at home are high and a carer and
diagnosed individual may benefit from a break. In Lothian BBV respite services are
provided by Milestone House, St Columba’s and Marie Curie Hospices which can also
provide support to carers in the community.
Children and young people’s services
Children and young people can be the main carer for BBV-positive individuals, usually for
relatives and not uncommonly their own parents. There may also be issues around young
carers who are BBV-positive after mother-to-child transmission. Individual and group
support can be provided to children and young people who have BBV-positive parents or
main guardian, or if the young persons are positive themselves. The Edinburgh Young
Carers Project provides support to young carers in the Edinburgh area.
For further information:
http://www.positivehelpedinburgh.co.uk/page-sub.aspx?pageID=11
http://www.waverleycare.org/content/childrenandfamilies/120/
http://www.youngcarers.org.uk/index.php
Transportation support
Transportation services can be provided to people with a blood borne virus and their
families. This is to help in attending hospital appointments, social care appointments and
to help with journeys for children to schools, nurseries etc.
For further information:
http://www.positivehelpedinburgh.co.uk/page-sub.aspx?pageID=10
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SECTION REFERENCES
Carers UK (2013) Carers suffering due to lack of support. Available at:
http://www.carersuk.org/newsroom-scotland/item/3161-carers-suffering-due-to-lack-ofsupport-scotland
Joy, R. Druyts, E. Brandson, E. Lima, V. Rustad, C. Zhang, W. Wood, E. Montaner, J.
Hogg, R. (2008) ‘Impact of Neighbourhood-Level Socio-Economic Status on HIV Disease
Progression in a Universal Health Care Setting’. Journal of Acquired Immune Deficiency
Syndromes, 47(4), pp 500-505
Latkin, C. German, D. Vlaov, D. Galea, S. (2013) Neighborhoods and HIV: A social
ecological approach to prevention and care. The American Psychologist, 68(4), pp 210224
Mitchell, S. Edwards, L. MacKenzie, S. Knowlton, A. Valverde, E. Arnsten, J. Santibanez,
S. Latka, M. Mizuno, Y. (2007) ‘Participant Description of Social Support Within a Multisite
Intervention for HIV-Seropositive Injection Drug Users (INSPIRE)’. Journal of Acquired
Immune Deficiency Syndrome, 4 Supp 2, pp S55-S63
Rhodes, T. Treloar, C. (2008) The social production of hepatitis C risk among injecting
drug users: a qualitative synthesis. Addiction, 103(10), pp 1593-1604
Tran, B. Nguyen, L. Nguyen, N. Hoang, Q. Hwang, J. (2013) Determinants of antiretroviral
treatment adherence among HIV/AIDS patients: a multisite study. Global Health Action,
15(6)
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SEXUAL AND REPRODUCTIVE HEALTH
SUMMARY BOX
• HIV, hepatitis B, hepatitis C, and hepatitis A can all be transmitted through sexual
contact.
• Sexual contact is the most common route of transmission for HIV and
probably for HBV in the UK.
• The chance of transmitting hepatitis C through sexual contact is generally
much lower, but the risk increases with certain risk behaviours and coinfection with HIV / other STIs.
• Hepatitis A can be spread through the oral-faecal route during sexual contact.
• People are more likely to access sexual health services which are nonjudgemental, anti-discriminatory, confidential, and well publicised.
• Sexual health is a sensitive topic – feeling unable to discuss sexual health is one
of the main barriers to accessing advice and treatment. Therefore it is important
that staff raise the subject and take a sexual history in order to identify individuals
at risk of STI (including blood borne viruses).
• Information and advice about safer sex should be offered to individuals and
couples when required.
• Family planning and options around safe conception and effective contraception
should be discussed.
• Post exposure prophylaxis after sexual exposure (PEPSE) should be offered to
people at significant risk of HIV, hepatitis B and A infection – there is no PEPSE
for hepatitis C.
• Staff should refer to specialist services for advice and/or treatment and care
when required.
This section aims to provide information to staff so that they can support individuals to
acquire and maintain the knowledge, skills, and values necessary for good sexual health
and wellbeing. Information is included on:
• The sexual transmission of blood borne viruses
• Sexual history
• Prevention and/or risk reduction
• Reproductive health, including conception and pregnancy and contraception
• Where to refer.
SECTION CONTENT AND LINKS
Definition of sexual and reproductive health
BBVs and risk of sexual transmission
Discussing sexual health and onward referral
Assessment of sexual history
Reducing the risk of sexual transmission of BBVs
Immunisation
PEPSE and contact tracing
Advice for BBV positive individuals on maintaining sexual health
Legal Issues
Reproductive Health and Conception and Pregnancy
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Sexual health is defined by the World Health Organisation (WHO)(2006) as:
'A state of physical, emotional, mental and social wellbeing related to sexuality; it is not
merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive
and respectful approach to sexuality and sexual relationships, as well as the possibility of
having pleasurable and safe sexual experiences, free of coercion, discrimination and
violence. For sexual health to be attained and maintained, the sexual rights of all persons
must be respected, protected and fulfilled.’
Of reproductive health, the WHO says
'Reproductive health implies that people are able to have a responsible, satisfying and
safe sex life and that they have the capability to reproduce and the freedom to decide if,
when and how often to do so.'
BBVs AND RISK OF SEXUAL TRANSMISSION
HIV
Sexual contact is the main route of transmission for HIV. HIV can be passed on through
unprotected vaginal and anal sex, and there is also a risk from unprotected oral sex. The
British Association for Sexual Health and HIV reports that the risk of transmission per
exposure from a known positive contact during unprotected sexual intercourse ranges
from 0.01-0.38% (i.e. one in 10000 to one in 3800) (insertive vaginal intercourse) to 0.043% (receptive anal intercourse) and 0-0.04% for receptive oral sex (Benn et al 2011).
HEPATITIS C
The risk of sexual transmission of hepatitis C is thought to be extremely low (close to
zero) in discordant heterosexual monogamous couples – one partner with hepatitis C, one
partner without (Ackerman et al 2000, Kao et al 2000, Vandelli et al 2004). However, the
risk can increase with different factors.
HEPATITIS B
The hepatitis B virus is very infectious through sexual contact. For infections acquired
within the UK, sexual transmission is the most common route of infection.
HEPATITIS A
The hepatitis A virus can be transmitted by the oral-faecal route during sexual contact.
The infected individual is most infective in a three week period after which infectivity
rapidly reduces to zero.
BBV Type
HIV
An Increased Risk of Sexual Transmission
Is linked with:
• The presence of an active untreated sexually transmitted infection (STI)
such as herpes, syphilis, chlamydia or gonorrhoea
• Increased number of sexual partners
• Anal sex – tearing of the lining of the anus and rectum is more likely
leading to a higher rate of transmission than in vaginal sex
• Generally the risk is higher for the receptive partner than the insertive
partner during penetrative intercourse
• Viral load – in general the higher the viral load the greater the chance of
transmission. Individuals who have a lower viral load are less likely to
pass on the virus. Those on treatment who have an undetectable viral
load carry a very low risk of viral transmission through sexual
intercourse; current advice is that they should continue to use condoms
to protect themselves and their partners.
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Hep C
Is during unprotected penetrative sex linked with:
• An increasing number of sexual partners
• Mucosally traumatic sexual practices. These are practices which may
cause some tearing in the vaginal or anal lining leading to the presence
of blood, e.g. anal sex, fisting, the use of sex toys, vigorous and
prolonged sex
• Co-infection with HIV
• The presence of an untreated STI
• Increased duration of relationship
• Chaotic drug and alcohol use.
Hep B
•
•
•
•
•
Hep A
Is during sexual contact linked with any practice which may increase the
likelihood of swallowing particles of contaminated faeces:
• Rimming (licking the anus)
• Unprotected fisting
• Oral sex after anal sex
• Fingering (digital-rectal contact)
• Handling used condoms or sex toys.
Unprotected vaginal or anal sex
Unprotected oral-anal contact (rimming)
The presence of an untreated STI
Increased number of sexual partners
Men who have unprotected sex with men (MSM).
DISCUSSING SEXUAL HEALTH ISSUES AND ONWARD REFERRAL
Discussing sexual health issues is often difficult for both patients and healthcare
professionals and is one of the main barriers to receiving advice and treatment (Gott et al
2004). Individuals are more likely to discuss their sexual health if they feel as though they
are in a supportive, non-judgemental environment. Privacy and the assurance of
confidentiality are essential (French 2006). It is recommended that statements of
confidentiality and non-discriminatory practice are clearly visible in areas where sexual
health services are available – including general practice (Department of Health 2003).
Suggested lines to open discussion on sexual health include:
• ‘There are certain viruses and infections that can be passed on during sex – can we
discuss your sexual health?’
• ‘What do you know about sexually transmitted infections? – Can we discuss them
further?’
• ‘Do you have any concerns about infections that are passed on during sex?’
These are only examples and many different opening strategies will work in different
scenarios. One of the main points to remember is that embarrassment can be infectious –
if the professional shows sign of embarrassment then the patient is likely to pick up on
this.
The NHS Lothian Sexual Health and HIV Strategy is based on a five tiered level of service
provision. This system relies on all healthcare staff assessing need and referring to the
appropriate service if required. (NHS Lothian, 2011).
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National Institute of Health and Clinical Excellence (2007) guidelines recommend that
health professionals working in general practice, genito-urinary medicine, community
health services, voluntary and community organisations, and school clinics should identify
individuals at high risk of STIs (including blood borne viruses) by taking a sexual history.
They also recommend that health professionals have one-to-one structured discussions
with individuals at high risk of STIs, or arrange for these discussions to take place with a
trained practitioner. This can involve referral to Chalmers Sexual Health Centre or other
sexual health services – see the Services section for further details.
Primary care management
Guidance is also available for the management of sexually transmitted infections in
primary care as some GP practices now provide testing. The guidelines offer advice on
what tests to do, symptoms summary and when to refer to sexual health services. For the
primary care guidance see:
www.lothiansexualhealth.scot.nhs.uk/Professionals/Resources/STI/Documents/NHS GP
STI Guidance.pdf
Sexual health services, with the exception of enhanced services for IUD and Implanon
insertion, are part of the basic GP contract so all GP surgeries are required to provide a
basic level of screening for STIs including HIV, HCV and HBV. The level of sexual health
service available from a GP surgery will vary depending upon resources, available
expertise and the availability of practice nurse services, and of course the particular
interest of individual doctors.
ASSESSMENT OF SEXUAL HISTORY
Recommended components of a basic sexual health history can be found on the NHS
Lothian referral guidelines website.
http://www.refhelp.scot.nhs.uk/index.php?option=com_content&task=view&id=355&Itemid
=228
The site recommends that a basic sexual history should include:
• Date of last sexual intercourse
• Details of condom use
• Casual or regular partner
• Partner’s gender
• Partner’s nationality
• Contraceptive method
• Nature of sexual activity
• Other partners in the last three months
• Sex outside the UK
• Previous STIs including hepatitis B, C, and HIV.
There are also guidelines for when and how to refer to GUM services
Further advice and information
More information on sexual history taking, testing for STIs, when to refer to specialist
services and services offered by Chalmers Health Centre can be found on Refhelp.
REDUCING THE RISK OF SEXUAL TRANSMISSION OF BBVs
Safer sex
• Practising safer sex (using barrier methods) can reduce the risk of blood borne
viruses as well as other sexually transmitted infections (STIs) and unintended
pregnancy
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• Non barrier methods of contraception can prevent unintended pregnancy but they
do not protect against sexually transmitted infections.
Condoms
Effective use of either male or female condoms during penetrative sex can dramatically
reduce the risk of transmission of most sexually transmitted infections (STIs) including
BBVs, and also reduce unintended pregnancy.
Consistent use of a condom for each episode of vaginal intercourse in couples where one
partner has HIV and one does not, reduces the risk of HIV transmission by 80%. (Weller
and Davis, 2002)
The use of barrier contraceptives also reduces the risk of super infection (infection with a
different strain of BBV).
Education on the proper use of condoms is important, as their effectiveness is userdependent. A clear user-friendly guide to using condoms can be found at:
www.condomessentialwear.co.uk.
More information on male and female condom use can be found at:
http://www.ffprhc.org.uk/
Oral sex
• Oral sex (fellatio and cunnilingus) is safer if using a condom or a dam
• Oral sex is usually less risky than anal or vaginal sex
• The risk increases if the person has poor dental hygiene, cuts or sores in the mouth,
or if there are cuts or sores on the penis, vagina, or anus
• Oral sex on a menstruating woman should be avoided
• Oral sex which involves semen in the mouth should be avoided
• Rimming (licking the anus) is associated with the transmission of hepatitis A and
hepatitis B.
Other sexual practices
• Avoid sharing sex toys such as a dildo or vibrator – if they are, a new condom
should be used for each individual.
Free condoms, lubricant, and sexual health advice is provided by Lothian’s C:Card
service. There are C:Card outlets throughout Lothian – full details can be found on the
website: http://www.ccard.org.uk/
For further information on providing C:Card or free condom provision within primary care
contact the Harm Reduction Team, tel. 0131 537 8300.
Condoms come in a range of different sizes, shapes, colours, flavours, textures,
thicknesses and materials. Condoms should have a Kitemark or CE mark – this indicates
they are suitable for all forms of penetrative sex. No specific type of condom is more
‘protective’ than others.
Negotiating safer sex
Practising safer sex involves more than just getting a supply of condoms. The individual
must be able to negotiate safer sexual practices (e.g. the use of a condom) with their
sexual partner(s).
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Safer sex negotiation skills include:
• Being aware of one’s own sexual health needs and the risk of sexually transmitted
infections
• Having the confidence to raise the subject with a sexual partner
• Negotiating which sexual behaviours are desirable or acceptable
• Agreeing with a sexual partner about protection and contraception methods
beforehand
• Being able to say ‘no’ if safer sex is not possible
• Being able to deal with any form of coercion to practice unsafe sex
• Knowing how to deal with any problems that might occur, e.g. burst condoms.
Negotiating safer sex can be difficult due to cultural norms, expected behaviour, low selfesteem, inexperience, lack of negotiation skills, power imbalance within a relationship,
and a range of other factors. There are organisations that can offer advice to different
groups of individuals about safer sex, e.g. Waverley Care has produced a condom pack
with appropriate information for Black Africans in Lothian, in association with c:card.
Healthy Respect is a service for young people and those working with young people,
which aims to improve sexual health and relationships.
See http://www.healthyrespect.co.uk.
There are specific sessions relating to condom use and negotiating safer sex in the
SHARE programme (Sexual health & relationships education)
People with learning disabilities can find it particularly hard to negotiate and practice safer
sex. They can experience multiple barriers to sexual health education, information and
services. Many of these barriers arise from the nature of particular learning disabilities in
combination with societal barriers and stigma (Fraser and Sim 2008). They have a well
documented vulnerability to abuse (Brown, 2004, Elvik et al 1990, Joyce 2003, and
McCormack et al 2005), and studies have shown a high prevalence of BBVs in people
with learning disabilities (Merrick 2002, Vellinga et al 1999).
A liaison nurse service designed to facilitate access to appropriate services for people
with learning disabilities is available in Lothian. Details can be found at:
http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/AZ/LearningDisabilities/Pages/LearningDisabilities.aspx
For other organisations aimed at specific groups see the Services section.
Increased risk-taking is associated with drug and alcohol use. People are more likely to
engage in unprotected sex whilst intoxicated or under the influence of drink/drugs (Castilla
et al 1999, Celentano et al 2006, Independent Advisory group on Sexual health and HIV
2007, NICE 2007).
Some drugs reduce levels of anxiety and fear, some affect judgement, reaction times and
emotions, levels of consciousness and decision-making ability. It is therefore important
that people who use substances take time to consider how they might negotiate safer sex
when intoxicated.
IMMUNISATION
Individuals can be protected against hepatitis A and B by a course of immunisation. There
is no immunisation available to protect individuals against HIV, hepatitis C or most other
STIs.
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97.
Immunisation should be offered to individuals who engage in risk behaviours or are HIV or
hepatitis C PCR positive, and to sexual or household contacts (including infants and
children) of at-risk individuals – see the Prevention section for further details.
PEPSE (Post-exposure Prophylaxis Following Sexual Exposure)
Individuals can be offered treatment to reduce the likelihood of infection with either HIV or
hepatitis B following sexual exposure (PEPSE). There is no PEPSE available for hepatitis
C. Post Exposure Prophylaxis is available to reduce the complications of hepatitis A and is
used to control outbreaks.
PEPSE for HIV
PEPSE against HIV is recommended after certain limited high risk exposures to HIV
infection through sexual intercourse. These mainly include exposure to a person with
known HIV or of unknown status but from a high risk group or area.
PEPSE for HIV involves taking antiretroviral drugs for four weeks soon after sexual
exposure to HIV. It is believed that there is a short ‘window of opportunity’ between the
virus entering the body and detection of the virus in lymph nodes and in the blood. PEPSE
is aimed at stopping the replication of the virus and consequent infection with HIV.
British Association for Sexual Health and HIV (BASHH) guidelines indicate that PEPSE
should only be considered within 72 hours of exposure and it is recommended to
administer PEPSE as soon as possible after exposure
Source: Benn et al 2011.
Individuals can contact their GP or Chalmers Sexual Health Centre directly or go to the
walk-in clinic: www.lothiansexualhealth.scot.nhs.uk. If the Sexual Health clinics are closed
then contact NHS24 or the Accident and Emergency Department who can provide urgent
assistance and consult with Infectious Disease on Call.
For advice on PEPSE assessment, contact the department of Genito-Urinary Medicine on
0131 536 1070. NHS Lothian has a policy and procedure on PEP following sexual
exposure (PEPSE). Details of the policy and procedure are available on refhelp at:
http://www.refhelp.scot.nhs.uk/index.php?option=com_content&view=article&id=892:preve
nting-hiv-and-hbv-infection-post-exposure-prophylaxis-after-sexual-exposurepepse&catid=87&Itemid=1435
All HIV positive individuals should be made aware of the policy and procedure.
PEPSE for Hepatitis B
PEPSE for hepatitis B is aimed at reducing the risk of an individual developing acute and
chronic hepatitis B infection (PHLS Hepatitis Subcommittee 1992, Salisbury et al 2006). It
takes the form of either a course of immunisation against hepatitis B, or a course of
immunisation plus the administration of a dose of immunoglobulin. The window of
opportunity for administering hepatitis B PEPSE is up to two weeks.
For advice on PEPSE assessment contact 0131 536 1070. See the above paragraph for
out-of-hours advice and the RefHelp site for further details:
http://www.refhelp.scot.nhs.uk/index.php?option=com_content&view=article&id=892:preve
nting-hiv-and-hbv-infection-post-exposure-prophylaxis-after-sexual-exposurepepse&catid=87&Itemid=1435
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PEPSE for Hepatitis A
Post exposure prophylaxis for hepatitis A has been shown to be around 70% effective at
reducing the severity of symptoms. PEP should be considered for sexual and household
contacts of a confirmed case regardless of their age.
Hepatitis A vaccination may be given and in addition human normal immunoglobulin
(HNiG) may be offered for contacts who are more at risk. This may be dependent on time
of exposure and take into consideration factors such as people over 50, chronic liver
cirrhosis, pre-existing hepatitis B or C infection (Crowcroft et al 2001, Salisbury et al
2006).
Public health would normally interview the identified case and follow up identifying
potentially vulnerable contacts. See the Health Protection page for contact details:
http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/AZ/PublicHealth/HealthProtection/Pages/HealthProtection-1.aspx
Contact tracing
It is important to try to identify and trace sexual (and household where appropriate)
contacts of individuals who are identified as positive for HIV or hepatitis B. This allows for
testing of individuals who have been at risk, appropriate immunisation against hepatitis A
and B and advice on prevention and/or treatment.
Hepatitis B is a notifiable disease and Public Health will help with contact tracing.
Chalmers Sexual Health Centre can also help with contact tracing and advice on
confidentiality and disclosure.
ADVICE FOR BBV POSTIVE INDIVIDUALS ON MAINTAINING SEXUAL HEALTH
It is very important to provide BBV positive individuals with information on maintaining
their own sexual health and the health of other people. Topics for discussion should
include:
• The risk of sexual transmission of BBVs
• Safer sex
• Risk behaviours linked to other routes of transmission, e.g. injecting/snorting drugs,
household transmission
• Accessing services
• Awareness of PEPSE policy at GUM and RIDU.
BHIVA/BASHH/FFPRHC (Fakoya et al 2007) guidelines recommend that all HIV positive
individuals under regular follow up are offered a full sexual health screen on an annual
basis.
It is also recommended that HIV-positive and hepatitis C-PCR positive individuals are
offered hepatitis B immunisation and hepatitis A immunisation where indicated – see the
Prevention section for further details.
LEGAL ISSUES
Healthcare staff should be aware of the important legal issues surrounding BBV
transmission.
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99.
There have been a number of criminal convictions for the ‘reckless transmission ‘of HIV.
The successful prosecutions are usually based on the issue of non–disclosure of HIV
status to sexual partners. Individuals should be made aware of the risk of legal action if
they do not disclose their status. It is likely that other BBVs such as hepatitis B would be
treated in the same way.
Confidentiality is not absolute and there are situations where information may be
disclosed to a third party, i.e. in court or in response to a court order, or where disclosure
may prevent risk of death or serious harm to another person. It is good practice to inform
individuals of circumstances in which confidentiality may be breached. Consult expert
advice (Chalmers Sexual Health Centre) and your union in all cases of disclosure of
confidential information.
If a person who has been diagnosed with a BBV is not advised, or is improperly advised,
on ways of protecting others, and a sexual partner becomes infected, the healthcare
worker is potentially liable – even if the other person is not their patient. This also applies
to patients who have not been diagnosed with a BBV but in whom the diagnosis should
have been made because of clear risk and/or clinical signs and symptoms.
A patient information leaflet on this subject is available from HIV Scotland.
http://www.hivscotland.com/policy/policy-document-library/view-document/prosecutionsfor-hiv-and-sti-transmission-and-exposure-leaflet/
REPRODUCTIVE HEALTH
Infection with a blood borne virus raises a number of issues to do with an individual’s
reproductive health. These issues include:
• Sexual dysfunction
• Contraception
• Conception
• Pregnancy
• Treatment and teratogenic drugs.
Sexual dysfunction
Men and women with one or more blood borne viruses commonly report sexual problems
(Danoff et al 2006, Fakoya et al 2007, Guo et al 2007). These range from the loss of
desire, to difficulties in making and maintaining relationships, to specific erectile
dysfunctions. The cause may be one of (or a mixture of) physical problems such as
neuropathy, blood pressure abnormalities, circulation problems, altered hormone levels,
psychological problems potentially linked with the risk of transmission, depression,
relationship problems, and the effects of drug therapy. Erectile dysfunction could affect
condom use leading to unsafe sexual practices and should be treated.
Note that there are interactions between antiretroviral therapy and the pharmacological
treatment for erectile dysfunction. Referral to Chalmers Sexual Health Centre or
Psychosexual Services may be indicated.
Contraception for women
For a woman to achieve optimal protection against BBV transmission and lowest risk of
pregnancy, she may require to use two methods, i.e. condoms – effective at reducing
transmission of BBVs, plus (for example) LARC – more effective at preventing pregnancy.
However, it is important to consider the reaction between drugs for the treatment of BBVs
and hormonal contraceptives. Useful resources are http://www.hiv-druginteractions.org/
and http://www.fsrh.org/pdfs/UKMEC2009.pdf.
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100.
HIV
Most available methods of contraception may be considered for HIV positive women and
are safe and effective. However, special considerations need to be made in women
currently taking, or about to enter into, pharmacological therapy.
Some medications used for treatment, especially some antiretroviral drugs used in the
treatment of HIV can reduce the effectiveness of hormonal contraception including COCP,
POP and Implants but not DMPA. Condoms are usually recommended in conjunction with
any hormonal method. Women on enzyme-inducing antiretrovirals should switch to
another form of contraception such as depot DMPA or IUS/IUD. The Cu-IUD is the only
recommended method of emergency contraception for HIV positive women on HAART.
Contact Chalmers Sexual Health Centre for advice – see Services for contact details.
Hepatitis
Women with acute viral hepatitis should not use combined hormonal contraception. Those
with severe cirrhosis should avoid all hormonal methods and consider a copper (UKMEC
guidelines 2009), http://www.fsrh.org/pdfs/UKMEC2009.pdf
Men and women undergoing treatment for hepatitis C are asked to use two forms of
contraception to prevent pregnancy for the duration of therapy and six months thereafter.
There is a risk of damage to the developing fetus from the drugs used. Some of the drugs
used may reduce the effectiveness of hormonal contraception.
CONCEPTION AND PREGNANCY
More women with blood borne viruses are choosing to have children and an increasing
number of couples request fertility investigation and assisted conception. Couples where
either one or both partners have a BBV require specific management strategies
throughout conception and pregnancy. There is a risk of transmission both during
conception or pregnancy and a risk of mother-to-child and household transmission later.
The following table lists the issues for HIV, HCV, HBV and HAV
BBV
Type
HIV
Conception
There is a risk of transmission
during unprotected sexual
intercourse. Strategies which have
been used to try to reduce the risk
include:
• Timed conception
• Insemination using donor sperm
• Sperm washing.
Where there is an undetectable
viral load, the risk of transmission is
reduced but not completely
eliminated especially if adherence
is variable or if there is a coexisting STI.
Couples can be referred to
Chalmers Sexual Health Centre or
a fertility clinic.
Sperm washing is available in
Dundee, but not on the NHS.
Blood borne virus resource pack 2014 © NHS Lothian
Pregnancy
There is a risk of mother-to-child
transmission of HIV during pregnancy –
see the Pregnancy section. The risk
can be significantly reduced by
ensuring that the mother has effective
treatment for her HIV, a Caesarean
Section if appropriate, HIV treatment
for the baby, and avoiding
breastfeeding.
Questions about the long term effects
of HIV drugs on the fetus and baby are
still largely unknown. Current thinking
is that the biggest risk to a baby, born
to a mother with HIV, is HIV itself. It is
thought that the benefits of
pharmacological treatment far outweigh
the risks.
So far, careful follow-up of children
exposed to HIV drugs during
pregnancy has not shown any
101.
differences compared with nonexposed children (de Reuter et al
2008).
Hep C
The risk of transmission during
unprotected sexual intercourse is
low although it can increase with
certain factors as discussed earlier
(see above for the risk of sexual
transmission).
SIGN guidelines on the
management of hepatitis C advise
that people infected with HCV
should consider using condoms for
sexual intercourse after being
advised of the low risk of sexual
transmission. Men who have sex
with men and those with a partner
who is HIV positive should be
advised to use condoms for sexual
intercourse (SIGN 2013).
Hep B
If one partner has hepatitis B and
the other does not, then the other
partner can be protected by
undergoing a course of
immunisation.
Immunity should be confirmed
before any unprotected sex.
The risk of mother-to-child transmission
of hepatitis C during pregnancy is low –
around 5%.
Testing for hepatitis C is not part of the
routine antenatal screening
programme, however, at-risk mothers
should be offered the test- see
Pregnancy section.
There are no proven interventions to
reduce the risk of transmission. The
risk increases when co-infected with
HIV, in this case a Caesarean-Section
would be considered.
Ribavirin, which is used in the
treatment for hepatitis C, is known to
cause abnormalities in the fetus (i.e. is
teratogenic), and therefore is not used
during pregnancy. Individuals wishing
to conceive should wait for a period of
six months after taking ribavirin.
In the UK, the incidence of mother-tochild transmission of hepatitis B has
been reduced to very low levels by the
introduction of routine antenatal testing
to identify pregnant women who are
HBV carriers.
Immunisation of the infant commencing
soon after birth is shown to be 95%
effective at preventing mother-to-child
transmission – this is important
because children infected with hepatitis
B have a higher risk of developing
chronic infection than adults (around
90% vs 5-10% in adults).
In NHS Lothian, hepatitis B vaccine is
now offered to all babies born to
problem drug-using parents at birth.
http://intranet.lothian.scot.nhs.uk/NHSL
othian/Healthcare/AZ/PublicHealth/HealthProtection/Immun
isations/Pages/PreexposureHepatitisBimmunisationfor.as
px
Hepatitis B is an inactivated vaccine
and can safely be given to high risk
women during pregnancy.
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102.
Hepatitis B treatment is not
recommended during pregnancy – see
Pregnancy section.
Hep A
There is a risk during sexual contact of the transmission of the virus but this is
thought to happen by the oral-faecal route.
A course of immunisation is available for individuals at risk and can be
administered during pregnancy if clinically indicated (WHO 2000, Salisbury et
al 2006).
Mother-to-child transmission has yet to be confirmed as a route of transmission
of HAV. There have been some documented cases but these were thought to
occur via the oral-faecal route during delivery (Leikin et al 1996).
Blood borne virus resource pack 2014 © NHS Lothian
103.
SECTION REFERENCES
Ackerman, Z., Ackerman, E., and Paltiel, O. (2000) ‘Intrafamilial Transmission of Hepatitis
C virus: a systematic review’. Journal of Viral Hepatology 7(2) pp 93-103
Benn, P. Fisher, M. Kulasegaram, R. (2011) 'UK guideline for the use of post exposure
prophylaxis for HIV following sexual exposure'. Available at:
http://www.bhiva.org/documents/Guidelines/PEPSE/PEPSE2011.pdf
Brown, H. (2004) ‘A Rights-Based Approach to Abuse of Women with Learning
Disabilities’. Learning Disability Review 9 (4) pp 41-44
Celentano, D.D., Valleroy, L.A., Sifakis, F., MacKellar, D.A., Hylton, J., Thiede, H.,
McFarland, W., Shehan, D.A., Stoyanoff, S.R., Lalota, M., Koblin, B.A., Katz, M.H., and
Torian, L.V. (2006) ‘Associations Between Substance Use and Sexual Risk Behaviour
Among Very Young Men’. Sexually Transmitted Diseases 33(4) pp 265-271
Castilla, J., Barrio, G., Jose Belza, M., and de la Fuente, L. (1999) ‘Drug and alcohol
consumption and sexual risk behaviour among young adults: results from a national
study’. Drug and Alcohol Dependence 56 pp 47-53
Crowcroft, N.S., Walsh, B., Davidson, K.L., Gungabissoon (2001) ‘Guidelines for the
control of hepatitis A virus infection’. Communicable Disease and Public Health 4, pp 213227
Danoff, A., Khan, O., Wan, D., Hurst, L., Cohen, D., Tenner, C., Bini, E., (2006), ‘Sexual
Dysfunction is Highly Prevalent Among men with Chronic Hepatitis C Virus Infection and
Negatively Impacts Health-Related Quality of Life’. American Journal of Gastroenterology
101 pp 1245-1243
Department of Health (2003b) 'Information for midwives: hepatitis B testing in pregnancy'.
Available at:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuid
ance/DH_4007742dGuidance/DH_4007742
De Ruiter, A., Mercey, D., Anderson, J., Chakraborty, R., Clayden, P., Foster, G., GillingSmith, C., Hawkins, D., Low-Beer,N., Lyall, H., O’Shea, S., Penn, Z., Short, J., Smith, R.,
Sonecha, S., Tookey, P., Wood, C., and Taylor, G. (2008) ‘Guidelines for the
management of HIV infection in pregnant women 2012’. HIV Medicine 9 pp 452-502.
Available at: http://www.bhiva.org/PregnantWomen2012.aspx
Elvik, S.L., Berkowitz, C.D., Nicholas, E., Lipman, J.L., and Inkelis, S.H. (1990) ‘Sexual
Abuse in the Developmentally Disabled: Dilemmas of Diagnosis’. Child Abuse and
Neglect 14 pp 497-502
Fakoya, A., Lamba, H., MacKie, N., Nandwani, R., Brown, A., Bernard, E.J., Gilling-Smith,
C., Lacey, C., Sherr, L., Claydon, P., Wallage, S., and Gazzard, B. (2007) 'UK guidelines
for the management of sexual and reproductive health (SRH) of people living with HIV
infection'. Produced jointly by BHIVA, BASHH, and FFP. Available at:
http://www.bhiva.org/cms1191550.aspx
Fraser, S. and Sim, J. (2008) 'The sexual health needs of young people with learning
disabilities'. Briefing paper. NHS Health Scotland
Blood borne virus resource pack 2014 © NHS Lothian
104.
French, P ‘BASHH (2006) ‘National Guidelines – Consultations requiring sexual historytaking’. International Journal of STD & AIDS 18 pp 17-22
Gott, M., Galena, W., Hinchcliff, S., and Elford, H. (2004) ‘Opening a can of worms’.
Family Practice 21/5 pp 528-536
Independent Advisory Group on Sex and HIV (2007) Sex, Drugs, Alcohol, and Young
People. Available at:
http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_co
nsum_dh/groups/dh_digitalassets/documents/digitalasset/dh_075591.pdf
Joyce, T.A. (2003) ‘An audit of investigations into allegations of abuse involving adults
with intellectual disability’. Journal of Intellectual Disability Research 47 (8) Nov pp 606616
Kao, J.H., Lui, C.J., Chen, P.J., Chen, W., Lai, M.Y., and Chen, D.S. (2000) ‘Low instance
of hepatitis C virus transmission between spouses: a prospective study'. Journal of
Gastroenterology and Hepatology 15(4) pp 391-395
Leikin, E., Lysikiewicz, A., Garry, D., Nergesh, T. (1996) ‘Intrauterine Transmission of
Hepatitis A Virus’. Obstetrics and Gynecology 88/4 (part 2) pp 690-691
McCormack, B., Kavanagh, D., Caffrey, S., and Power, A. (2005) ‘Investigating Sexual
Abuse: Findings of a 15-year Longitudinal Study’. Journal of Applied Research in
Intellectual Disabilities 18 pp 217-227
Merrick, J., Morad, M. and Porath, E.B. (2002) ‘Prevalence of anti-hepatitis A antibodies,
hepatitis B viral markers and anti-hepatitis C antibodies among persons with intellectual
disability in institutions in Israel’. Journal of Intellectual and Development Disability 27 (2)
pp 85-91
NICE (2007) 'One-to-one interventions to reduce the transmission of sexually transmitted
infections (STIs) including HIV, and to reduce the rate of under 18 conceptions, especially
among vulnerable and at risk groups'. Available at: http://www.nice.org.uk/phi003
NHS Lothian (2011) 'Sexual Health and HIV Strategy 2011-2016'. Available at:
http://intranet.lothian.scot.nhs.uk/NHSLothian/Corporate/AZ/HealthPromotionService/Pages/SexualHealth.aspx
PHLS Hepatitis Subcommittee (1992) ‘Exposure to Hepatitis B virus: guidance on postexposure prophylaxis’. CDR Review 2/9. Available at:
http://www.hpa.org.uk/CDR/archives/CDRreview/1992/cdrr0992.pdf
Public Health England (2013) 'Immunisation Against Infectious Disease'. ("The Green
Book"). Available at:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuid
ance/DH_079917
SIGN (2013) 'Management of Hepatitis C: a national clinical guideline'. Available at:
http://www.sign.ac.uk/guidelines/fulltext/133/index.html
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105.
Vandelli, C., Renzo, F., Romano, L., Tisminetsky, S., De Palma, M., Stroffolini, T.,
Ventura, E., and Zanetti, A., (2004), ‘Lack of Evidence of Sexual Transmission of Hepatitis
C among Monogamous Couples: Results of a 10-Year Prospective Follow-Up Study’.
American Journal of Gastroenterology 99(5) pp 855-859
Vellinga, A., Van Damme, P., and Meheus, A. (1999), ‘Hepatitis B and C in institutions for
individuals with intellectual disability’. Journal of Intellectual Disability Research 43 (6) Dec
pp 445-453
WHO (2000) Department of Communicable Disease Surveillance and Response 'Hepatitis
A'. Available at:
http://www.who.int/csr/disease/hepatitis/HepatitisA_whocdscsredc2000_7.pdf
WHO (2006) 'Defining sexual health – Report of a technical consultation on sexual health
28-31 January 2002'. Geneva. Available at:
http://www.who.int/reproductivehealth/publications/sexual_health/defining_sh/en/index.ht
ml
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PREGNANCY (incl Post-Natal Management)
SUMMARY BOX
• Pregnancy and BBV transmission
• HIV, hepatitis B and hepatitis C can all be passed from mother-to-child
(vertical transmission). Hepatitis A can also be passed mother-to-child but only
rarely.
• Reducing mother-to-child (vertical) transmission
• HIV – Interventions to reduce mother-to-child transmission include:
• The use of antiretroviral drugs for the mother with the aim of having a
undetectable viral load for the mother at the time of delivery
• Careful obstetric management during pregnancy and delivery
• Avoidance of breastfeeding
• Antiretroviral drugs for the newborn baby (to reduce risk of seroconversion)
• Hepatitis C – Interventions to reduce mother-to-child transmission:
• There are no proven interventions to prevent or reduce the risk of vertical
transmission
• Hepatitis B – Interventions to reduce mother-to-child transmission include:
• Immunisation of mother before conception or during pregnancy
• Immunisation of baby and if appropriate Immunoglobulin
• Hepatitis A – Interventions to reduce mother-to-child transmission:
• Immunisation for (at-risk) mother
SECTION CONTENTS AND LINKS
HIV and Pregnancy
Hepatitis C and Pregnancy
Hepatitis B and Pregnancy
Co-Infection
Social Support
KEY MOTHER-TO-CHILD (‘VERTICAL’) TRANSMISSION ROUTES
HIV
• During pregnancy (intrauterine) – virus crossing the placenta
resulting in infection of the fetus
• During delivery (intrapartum) – neonate infected from contact
with blood and cervical secretions during childbirth
• During breastfeeding – infant infected from HIV in mother’s
breast milk.
Hepatitis C
• During pregnancy (intrauterine) – virus crossing the placenta
resulting in infection of the fetus
• During delivery (intrapartum) – neonate infected from contact
with blood and cervical secretions during childbirth.
Hepatitis B
• During pregnancy (intrauterine) – there may be a small risk of the
virus crossing the placenta resulting in infection of the fetus
• During delivery (intrapartum) – transmission occurs mainly during
or soon after delivery, through contact of the infant with maternal
blood and other bodily fluids.
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107.
Hepatitis A
• Transmission occurs very rarely, mainly through oral / faecal
route during childbirth.
HIV AND PREGNANCY
The risk of vertical transmission is related to maternal health, obstetric factors and infant
pre maturity. There is a close correlation between maternal viral load and risk of
transmission (the higher the viral load the greater risk of transmission). CD4 counts and
clinical disease stage have been shown in some studies to be linked with an increased
risk of transmission even when controlling the viral load. Without intervention the baby can
be infected and go on to develop significant health issues, with a high risk of death before
the age of two years (WHO, 2013). Effectively managing the antenatal and postnatal
stages can greatly reduce the risk of transmission and significantly improve health
outcomes for mother and baby.
SUMMARY GUIDE TO HIV AND PREGNANCY
Vertical
transmission
risk
• Without intervention, approximately 15%-25% of babies can
contract HIV. Without treatment HIV infected children develop
chronic disease and about 50% can develop AIDS or die by the
age of two years. If appropriate interventions are accepted, the
risk of vertical transmission can be reduced to below 1%.
Antenatal
screening
programme
• Routine screening aims to reduce the number of babies born
with HIV and improves the health of infected women and their
children. Diagnosis during pregnancy means that women can
be offered interventions to reduce the likelihood of mother-tochild (vertical) transmission and appropriate paediatric care for
the baby can be arranged. Pregnant women can opt out of the
antenatal screening programme but very few do when the
benefits of testing are explained to them.
Antiretroviral
drug therapy
(ART) for
mother
• Aims to reduce maternal viral load to ‘undetectable’. All women
should have commenced ART by week 24 of pregnancy.
Women who become pregnant whilst taking ART that is
successfully suppressing viral load will normally continue with
their ART throughout pregnancy.
• Women with HIV are at a small increased risk of adverse
pregnancy outcomes such as spontaneous abortion, stillbirth
and intra-uterine growth restriction (IUGR). An increased risk of
pre-term delivery has been reported with combination therapies
and this has important implications. All pregnant HIV positive
women should be routinely screened for genito-urinary tract
infections in the third trimester (De Ruiter et al, 2008).
Mode of
delivery
• This is dependent on the viral load. BHIVA (2012) guidance
recommends vaginal delivery is recommended for women on
ART with an HIV viral load of <50 HIV RNA copies/ml at week
36 (with no obstetric complications) and Caesarean Section if
the viral load result at week 36 is 50-399 HIV RNA copies/ml.
Caesarean is also recommended for a mother with dual BBV
infection. Options for delivery should be discussed with the
mother.
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108.
Breastfeeding
• This is not recommended as HIV is expressed in breast milk
and breastfeeding, therefore it increases the risk of
transmission.
Antiretroviral
drug therapy
(ART) for
babies
• Infants are normally given antiretroviral drug therapy (ART) for
the first four weeks. Most neonates born to mothers known to
have HIV will be exposed to ART in-utero, as well as
neonatally. The possible adverse effects of ART to the fetus
and developing child continue to be monitored. All women who
receive ART in pregnancy are registered with the International
Drug Registry and exposed infants are followed up for at least
one year. To date, no increased risk of birth defects or growth
problems have been documented with ART. However, much
less is known about the safety of other anti-HIV drugs. All
babies who have been exposed to ART are reported to the
British Paediatric Surveillance Unit.
Management
of HIV positive
pregnant
women in
Lothian
• The care offered to HIV positive pregnant women in Lothian is
jointly managed by specialists from midwifery, obstetrics, HIV,
paediatrics, primary care and other services (e.g. social work,
drug and HIV services). Healthcare staff should refer to the
agreed management protocol and care pathway. The approach
to treatment is individualised according to the needs of the
mother. Good liaison is required between all professionals to
ensure that the pregnancy and birth plan proceed appropriately
and that the views and wishes of the woman are respected.
• A paediatrician at RHSC undertakes diagnosis of HIV infection
in infants born to HIV positive mothers – see the Services
section. Babies are tested at birth, six weeks, three months
and sometimes four months to look for the HIV virus. If all of
these are negative, a HIV antibody test will be done at 18
months to confirm that this is negative.
For further information and guidance on recommended interventions, see British HIV
Association (BHIVA) and Children’s HIV Association ‘Guidelines for the management of
HIV infection in pregnant women’ (2012):
http://www.bhiva.org/documents/Guidelines/Pregnancy/2012/hiv1030_6.pdf
HEPATITIS C (HCV) AND PREGNANCY
Hepatitis C is a viral infection, which affects the liver and can be passed from mother-tochild, either during pregnancy or childbirth, although the transmission rate is low (around
5%) People who are chronically infected with hepatitis C can remain well for many years
and may not know they are infected. Babies who are infected are at risk of developing
serious liver disease later in life.
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SUMMARY GUIDE TO HCV AND PREGNANCY
Vertical
transmission
risk
The transmission rate is thought to be around 5% (BASHH,
2008).
Antenatal
screening
Antenatal testing is not routine but can be useful because
infected babies can be identified, they can be immunised against
hepatitis B and their paediatric care can be managed
appropriately. Testing at-risk pregnant women for hepatitis C
infection can be useful for a number of reasons:
• The woman’s health can be monitored
• The diagnosis is being made at a time when she is likely to be
in contact with healthcare staff and motivated to engage with
support services
• She can be given healthy lifestyle advice
• She can be given advice to prevent further risk of exposure
• She can be immunised against hepatitis B and hepatitis A
• She can be given information on infection control in the home
and elsewhere
• She can be referred for specialist hepatitis C treatment and
care once the baby is delivered.
Mode of
delivery
The risk of the baby acquiring HCV does not increase by the
mode of delivery (SIGN, 2013). Caesarean is also recommended
for a mother with dual BBV infection. Mode of delivery should be
discussed with the obstetrician and midwife as part of the
birthing plan.
Breastfeeding
Breastfeeding is advised as there is not sufficient evidence to
prove the risk of transmission via breast milk (Health Protection
Agency, 2013; World Health Organisation, 2013). If there are any
concerns they should be discussed with the paediatrician.
Breastfeeding guidance to be followed as per the Infant Feeding
Policy, NHS Lothian (2013).
Immunisation
and treatment
There are no proven interventions to reduce the risk of vertical
transmission (except in the case of co-infection) and there is no
vaccine currently available. Combination therapy for hepatitis C
(interferon alpha & ribavirin) is contraindicated during pregnancy
and breastfeeding (because of fetotoxic and teratogenic effects)
and in young babies and children.
Management
of HCV
positive
pregnant
women in
Lothian
Pregnant women found to be infected with HCV (PCR positive)
are referred for specialist care. A paediatrician at the RHSC is
part of the European Paediatric Hepatitis C Network and will see
all infants born to mothers with HCV. The paediatrician will test
and monitor infants for signs and symptoms of hepatitis C during
the first year of life.
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110.
HEPATITIS B (HBV) AND PREGNANCY
Hepatitis B is a viral infection which affects the liver and is highly infectious. Acute
infection may be asymptomatic or may cause a non-specific illness with nausea, vomiting,
loss of appetite and jaundice. Infection without apparent illness is common in children.
Most persons who are infected as adults recover fully and develop lifelong immunity.
However, approximately 5%-10% remain infected (chronic ‘carriers’) and potentially
infectious.
People who are chronically infected with hepatitis B can remain well for many years and
may not know they are infected. Children infected before the age of six have between a
30% and 50% chance of becoming a chronic carrier and this is particularly the case for
babies infected at birth (80%-90%). Adults infected during childhood have a 15%-25%
chance of developing cirrhosis or liver cancer. (World Health Organisation, 2013)
SUMMARY GUIDE TO HBV AND PREGNANCY
Vertical
transmission
risk
• Mother-to-child transmission of hepatitis B is very high – around
90% (BASHH 2008). The majority of transmission occurs during
childbirth although immunisation of the baby can prevent around
90% of newborn infections. There is an assumption and some
evidence to suggest that some of the remaining 10% who do not
respond to neonatal immunisation are infected by intrauterine
transmission during pregnancy (Hou et al, 2005; Jonas, 2009).
Mode of
delivery
• There is no conclusive evidence about mode of delivery and
HBV transmission (Umar et al, 2013). The obstetrician will
discuss options with each woman and take individual clinical
factors into consideration.
Reducing
HBV motherto-child
transmission
• The high rate of mother-to-child transmission can be largely
prevented through immunisation (over 90% effective). If the
mother’s antenatal hepatitis B surface antigen test is positive
(HBsAg) an immunisation programme is started at birth to enable
the baby to develop immunity.
• The midwife delivering intrapartum care notifies the neonatal
paediatrician that the woman is in labour and ensures that the
medications for the baby are in stock. Within 12 hours of birth the
baby may receive immunoglobulin (which neutralises the virus)
and the first dose of the vaccine. The baby is provided with an
accelerated schedule in four doses at 0, one, two and 12
months. Babies born to mothers infected with hepatitis B require
a 5th booster dose at 39 months.
• Immunity checks are carried out approximately two months after
their vaccine at 12 months. The GP and health visitor are
informed, as they are responsible for ensuring that the baby
receives all the vaccines to complete the immunisation
programme. The SIRS (Scottish Immunisation Recall System)
database is notified to alert staff that administration of the
vaccine is due. When the mother leaves hospital with her baby
she is given a hepatitis B immunisation record card. Healthcare
staff should refer to the ‘Hepatitis B Antenatal Resource Pack’:
• The Health Protection Team (Public Health) is also informed
about any person with hepatitis B infection (HBsAg positive), as
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111.
it is important to trace contacts. Sexual partners, children and
other household contacts are offered testing and immunisation
where appropriate.
Immunisation
for at risk
pregnant
women
• Immunisation for hepatitis B should be considered for at-risk
pregnant women – for example all drug users. Neither pregnancy
nor breastfeeding is considered a contraindication to
immunisation. There are no apparent adverse effects to the
developing fetus since the vaccine is not alive.
• It is recommended to offer all women with a history of injecting
drug use full screening for HBV in pregnancy (i.e. the Ab test in
addition to the Ag test). Women with no prior infection with HBV
can be safely immunised during pregnancy (NHS Lothian, 2012).
• Hepatitis B and hepatitis A immunisation is recommended for
any hepatitis C-positive or HIV-positive woman (BHIVA 2008,
Salisbury et al 2006) and is also recommended for all injecting
drug users.
Immunisation
for others at
risk
• It is recommended that pregnant women’s sexual partners with a
history of drug use have screening for HBV.
• Hepatitis B immunisation is recommended for all babies born to
injecting drug users (both mothers and fathers). Current sexual
partners and household contacts (including existing children) are
immunised against hepatitis B.
• Hepatitis A immunisation is recommended for all injecting drug
users.
Breast
feeding
• Before the availability of the hepatitis B vaccine, HBV
transmission through breastfeeding was not reported.
Breastfeeding can be promoted as per the Infant Feeding Policy,
NHS Lothian (2013).
For the Hepatitis B Antenatal Resource Pack:
http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/AZ/ReproductiveMedicine/PoliciesAndGuidelines/Documents/Maternity%20RIE/Antenatal/H
ep%20B%20resource%20pack%20%2030-11-10.pdf
The protocol for Hepatitis B immunisation for babies born to drug using parents is
available at:http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/AZ/PublicHealth/HealthProtection/Immunisations/Pages/PreexposureHepatitisBimmunisationfor.aspx
Blood borne virus resource pack 2014 © NHS Lothian
112.
CO-INFECTION (HIV AND HEPATITIS)
Co-infection with HIV, HCV and HBV can occur due to shared routes of transmission. The
mother-to-child transmission of HCV can rise to up to 40% in pregnant women co-infected
with HCV and HIV.
Effective treatment of HIV in the mother and baby will reduce the risk of HCV transmission
as well as the risk of HIV transmission. If the mother is receiving ART and there are no
obstetric complications, vaginal delivery can be recommended. Caesarean Section may
be considered in some circumstances and there should be discussion between the mother
and obstetrician.
BHIVA (2010) have produced guidelines on treatment for co-infection with HIV and
hepatitis C or hepatitis B available at: http://www.bhiva.org/HepBC2010.aspx and
guidelines on management of HIV infected mothers at:
http://www.bhiva.org/documents/Guidelines/Pregnancy/2012/hiv1030_6.pdf
Follow-up
All infants and children born to BBV positive mothers are followed up by a paediatrician
based at the Royal Hospital for Sick Children – see the Services section.
SOCIAL SUPPORT
All professionals supporting infected pregnant women should be aware of the
psychosocial issues that can impact on treatment and care. Women may need
considerable help and support to come to terms with the implications of their diagnosis
and the management of their infection.
• An early referral for psychosocial support for the newly diagnosed pregnant woman
is recommended
• Consider specially tailored antenatal care
• All positive pregnant women should be encouraged to disclose their status to their
partner but this may require time and support from the health/social care team
• Testing other biological children for BBVs is recommended but can often be
deferred until after delivery.
There are services available to support positive individuals and their families. See below
and the Social Care section.
Waverley Care provides emotional and social support to those infected with hepatitis and
HIV, http://www.waverleycare.org/.
The Children’s Liver Disease Foundation is an organisation that specialises in
supporting children with liver disease, www.childliverdisease.org.
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113.
SECTION REFERENCES
BASHH (2008) 'United Kingdom National Guideline on the Management of the Viral
Hepatitides A, B & C 2008'. Available at: http://www.bashh.org/documents/1927.pdf
BHIVA (2012) 'British HIV Association guidelines for the management of HIV infection in
pregnant women'. Available at:
http://www.bhiva.org/documents/Guidelines/Pregnancy/2012/hiv1030_6.pdf
Coavadia, H.M., Rollins, N.C., Bland, R.M., Little, K., Coutaoudis, A., Bennish, M.L., and
Newell, M (2007) 'Mother-to-child transmission of HIV-1 infection during exclusive
breastfeeding in the first 6 months of life: an intervention cohort study'. Lancet 369 pp
1107-1116
De Ruiter, A., Mercey, D., Anderson, J., Chakraborty, R., Clayden, P., Foster, G., GillingSmith, C., Hawkins, D., Low-Beer,N., Lyall, H., O’Shea, S., Penn, Z., Short, J., Smith, R.,
Sonecha, S., Tookey, P., Wood, C., and Taylor, G. (2008) ‘BHIVA and Children’s HIV
Association Guidelines for the management of HIV infection in pregnant women 2008’.
HIV Medicine 9 pp 452-502. Available at: http://www.bhiva.org/cms1221368.asp
Health Protection Agency (2013) 'Hepatitis C: general information'. Available at:
http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/HepatitisC/GeneralInformat
ion/
Hou, J. Liu, Z. Gu, F. (2005) 'Epidemiology and Prevention of Hepatitis B Virus Infection'.
International Journal of Medical Science. 2(1), pp 50-57
Jonas, M. (2009) 'Perinatal Hepatitis B virus transmission'. Liver International. 29(s1), pp
133-139
NHS Lothian (2012) 'Guidance for Immunisation of drug users and close contacts against
Hepatitis A and B'. Available at:
http://www.escro.co.uk/Trusts/Lothian/documentation/lo_Guidance_for_Immunisation_Ha
patitis_A%20_B.pdf
Public Health England (2013) 'Immunisation Against Infectious Disease'. ("The Green
Book"). Available at:
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuid
ance/DH_079917
SIGN (2013) 'Management of Hepatitis C: a national clinical guideline'. Available at:
http://www.sign.ac.uk/pdf/sign133.pdf
Umar, M. Bushra, H. Umar, S. Khan, K. (2013) 'HBV Perinatal Transmission'. International
Journal of Hepatology. Available at: http://www.hindawi.com/journals/ijhep/2013/875791/
World Health Organisation (2013) 'Hepatitis B'. Available at:
http://www.who.int/mediacentre/factsheets/fs204/en/
World Health Organisation (2013) 'Hepatitis C'. Available at:
http://www.who.int/mediacentre/factsheets/fs164/en/
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INFECTION CONTROL
SUMMARY BOX
• The potentially infectious nature of blood and all body substances means the
implementation of infection control practice in all healthcare settings is essential.
• Standard precautions are required in the treatment and care of all patients to
prevent transmission of HIV, HCV, HBV, and HAV.
• Healthcare workers have a responsibility to protect themselves and their patients
from exposure to blood borne viruses within all healthcare settings.
• Individuals with a blood borne virus, or people living with someone with a blood
borne virus, need to be aware of basic measures that will reduce risk of
transmission to close contacts and with people they live.
It is the responsibility of all healthcare staff to follow infection control guidance. All
healthcare staff should implement standard precautions. Standard precautions include
aseptic technique, barrier protection, safe disposal systems, and the appropriate use of
instruments and equipment. They are effective in the prevention of the transmission of
blood borne viruses. Additional precautions, transmission-based precautions, are
necessary to prevent the transmission of other important pathogens, e.g. tuberculosis
(airborne route of transmission).
The principles of Standard Precautions and decontamination procedures are the same
whether caring for someone in a health centre, hospital, residential centre or patient's own
home. Lothian Infection Control Manual local policies are available at:
http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/AZ/InfectionControl/icm/Pages/default.aspx
Alternatively, contact the Infection Control Team if you have any questions:
http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/AZ/InfectionControl/Pages/default.aspx
SECTION LINKS FOR INFECTION CONTROL
Clearance for HealthCare Workers
Standard Infection Control Precautions
Body Fluid Spillage Procedure
Management of Needle Stick and other contaminated Injuries
Post-exposure Prophylaxis
Social and Household Transmission Guidance
Immunisation – see the Prevention section for guidance
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115.
CLEARANCE FOR HEALTHCARE WORKERS
• The General Medical Council (GMC), Nursing and Midwifery Council (NMC) and
General Dental Council (GDC) offer guidance on professional accountability of
doctors, nurses and dentists.
• Department of Health (2007) and Scottish Government (2008) published guidance
on health clearance for serious communicable diseases (HIV, hepatitis B, hepatitis
C and TB). It recommends: pre-appointment/pre-admission health checks for
serious communicable diseases for ALL new entrants to the NHS, including
healthcare students. This includes checks for TB disease/immunity and hepatitis B
immunity (with immunisation if needed), and the offer of testing for hepatitis C and
HIV.
Currently all healthcare workers who are involved in Exposure-Prone Procedures (EPP)
must be up-to-date with hepatitis B immunisation and must show an adequate immunity
status, or be non-infectious with HBV. They must also be non-infectious with HIV.
Further Scottish National Guidance on Clearance can be found at:
http://www.scotland.gov.uk/Publications/2008/04/25104624/0
Further guidance on infected healthcare workers can be found at:
http://www.hps.scot.nhs.uk/bbvsti/guidelines.aspx
STANDARD INFECTION CONTROL PRECAUTIONS
• Healthy intact skin provides an effective barrier against infection
• Cover all cuts, abrasions and skin lesions with waterproof dressing
• Hand washing between procedures and patients is an important factor in preventing
the spread of infection
• Take care with the disposal of needles and syringes – never re-sheath needles
• Wear gloves when using sharps – they may not prevent injury but they do remove a
lot of blood from the sharp, reducing the chance of infection
• Clean all patient equipment thoroughly
• Never re-use single use equipment
• Wear the appropriate protective clothing for the situation and task
• Cover any cuts or abrasions with a waterproof dressing
• Wash hands after handling all waste or laundry
• Dispose of waste appropriately (e.g. sharps containers).
See the Lothian Infection Control Manual for detailed advice.
BODY FLUID SPILLAGE PROCEDURE
• Deal with any blood or body fluid spillage promptly as per Lothian policy:
http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/AZ/InfectionControl/icm/Documents/CP009_v2.1.pdf
• Get someone to guard the area while you collect the necessary equipment
• Use disposable nitrite gloves, disposable plastic apron and eye protection if
necessary
• Clean area with the advised disinfectant as per the policy (link above), dry area well
with disposable towels
• Discard all towels and protective wear in the appropriate wastage bags
• Cleanse hands as per NHS Lothian hand wash policy
• If further cleansing is required contact Domestic Services.
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116.
MANAGEMENT OF NEEDLE-STICK AND OTHER CONTAMINATION INJURIES
Transmission risk
following needle
stick injury
HIV
0.3%
HEPATITIS
C PCR
positive
3% - 10%
HEPATITIS
B
30%
Whom to
contact
following
injury
Procedure following injury
• Wash thoroughly with soap and lukewarm
water, do not scrub
• Gently encourage bleeding
• Cover with a waterproof plaster.
• Thoroughly irrigate exposed mucous
membranes and eyes with water
• Refer to the policy on the intranet
• Consider source patient testing
• Report incident to line manager as soon as
possible
• Contact Occupational Health Service
• Follow normal procedures for dealing with
contamination – see Lothian Infection
Prevention and Control Manual
• Report the injury to your manager and follow
the Standard Operating Procedure (for needlestick injury, click on the link to access the
Procedure)
For community exposure, expert advice is available from on-call
consultants in GUM or RIDU via switchboard 0131 536 1000 and out
of hours RIDU only on the same number.
For occupational exposure contact the Occupational Health Service
for NHS Lothian on 0131 537 9369 or outwith normal hours 0131 537
6000.
POST-EXPOSURE PROPHYLAXIS AND POST-SEXUAL EXPOSURE
(PEP and PEPSE)
Following any suspected exposure to blood borne viruses seek expert advice and
assessment for the appropriateness of PEP or PEPSE (post-sexual exposure). Consult
GUM for HIV, specialist virology department for HBV or HCV and Occupational Health for
NHS occupational exposure. Occupational Health Service (OHS) are contactable on 0131
537 9369 or outwith normal hours 0131 537 6000. Click on the links to access the NHS
Lothian PEP Policy and the Prevention section.
SOCIAL CONTACT/HOUSEHOLD TRANSMISSION GUIDANCE
Infection is not acquired through everyday social contact, for example from sharing a cup
for drinking or by touching an infected person. However, if a person is infected with a
blood borne virus they should use their own personal items such as nailbrush, scissors,
tweezers, or razor and be meticulous about cleaning up any blood from cuts or scratches.
Undiluted household bleach should be used to clean up blood from floors and work
surfaces. Scratches, cuts and wounds should be carefully cleaned and covered with a
waterproof dressing or plaster. Sanitary products should be safely disposed of. Members
of a household where one person is infected with a blood borne virus should be aware to
take basic precautions with blood and body fluids.
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LIVING WITH A BLOOD BORNE VIRUS
SUMMARY BOX
• Living with one or more blood borne viruses can have a huge impact on an
individual’s quality of life. This can affect their physical health, mental health,
relationships, employment, financial and social circumstances.
• The stigma associated with a positive BBV status or a perceived positive status
can act as a barrier to testing, accessing services, seeking treatment and
engaging with treatment.
• On-going support, advice, and counselling may be required to help people cope
when they are ill and recovering from illness.
• Individuals can be given advice and support on how to remain healthy from
services, carers, family or friends.
Blood borne viruses are a long term condition and coping with any long term condition can
be complex. People can find it hard to deal with fluctuating ill health, which means people
can struggle to maintain their sexual identity, maintain relationships and become socially
isolated. This can be due to discrimination or a feeling that they have lost their BBVnegative status.
Those who have been unwell and recovered to a good level of functioning may well find
themselves caught in a ‘benefit trap’ where the level of benefits that they are receiving
outweigh the financial rewards of going back to work.
These issues, and others, make it essential that people receive good support from the
appropriate resource throughout the course of their condition. This section considers
issues that BBV-positive people may have to contend with on a daily basis.
See the Services section for various support services relating to the topics in this chapter.
SECTION LINKS FOR LIVING WITH A BLOOD BORNE VIRUS
Coping with a Diagnosis
Information on Staying ‘Healthy’
Stigma and Discrimination
Employment
Immigration
Travel and Travel Insurance
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118.
COPING WITH A DIAGNOSIS
It is important to provide individuals who have been newly diagnosed as BBV-positive
information about sources of support. Giving written information is important as they may
not take in what is said during a consultation.
Further information can be found on:
HIV Scotland, http://www.hivscotland.com/living-with-hiv/i-just-found-out/.
Hepatitis Scotland – Hepatitis C
http://www.hepatitisscotlandc.org.uk/just-found-out.aspx.
Hepatitis B Foundation UK, http://www.hepb.org.uk/. They offer advice and information to
individuals with HBV infection or to their families and friends and provide a 'bespoke'
service by phone/email/post.
Hepatitis Scotland – Hepatitis B
http://www.hepatitisscotlandb.org.uk/index.php/just-found-out/.
WHOM TO TELL
Telling other people about their BBV status can be daunting for the individual. There are
positive and negative aspects and individuals should be encouraged to consider both
before they make the decision to disclose their status.
Positive aspects can include:
• Get support and help
• Feel less isolated
• Get acceptance and understanding
• Feel stronger
• Meeting others in a similar position
• Tell their story
Negative aspects can include:
• Once disclosed there is no taking it
back
• Rejection
• People may think about them in a
different way – stigma and
discrimination
• People may gossip
• The positive individual may end up
having to support the people they
tell!
There may be some situations where the positive individual is encouraged to tell their
sexual partner(s) about their BBV-positive status and the health care professional may be
obliged to inform the partner(s) due to the risk of transmission.
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119.
INFORMATION ON STAYING ‘HEALTHY’
It can be helpful to give a BBV-positive individual advice on:
Good
Nutrition
HIV – good nutrition is necessary to help maintain the immune system.
Individuals may also need to consume an adequate diet to help with
the absorption of medication. Diet can be altered to combat adverse
effects such as weight loss, diarrhoea, lipodystrophy, cardiovascular
risk. See Nutrition and HIV at http://www.tht.org.uk/myhiv/Stayinghealthy/Eating-and-drinking.
Hepatitis – healthy nutrition is recommended for people with chronic
hepatitis (as for most others). In more advanced liver disease
malnutrition can be a problem – assessment by a dietitian is
indicated. Diet can also help with ascites, encephalopathy, and
fatigue in more advanced liver disease. Advice on liver disease and
diet can be found at http://www.britishlivertrust.org.uk/wpcontent/uploads/DLD0411.pdf.
Exercise
Exercise is important in weight control, strengthening and toning
muscle, combating fatigue, strengthening bone, reducing
cardiovascular risk, and lifting mood.
Advice on exercise and HIV can be found at the AIDSMAP site
http://www.aidsmap.com/Exercise/page/1254865/.
Advice on exercise and hepatitis C can be found at The Hepatitis C
Trust site http://www.hepctrust.org.uk/.
Referral for exercise may be indicated:
For Edinburgh - see
http://www.refhelp.scot.nhs.uk/index.php?option=com_content&task
=view&id=621&Itemid=1416.
For Midlothian - see
http://www.refhelp.scot.nhs.uk/index.php?option=com_content&view
=article&id=641:exercise-referral-midlothian&catid=76&Itemid=1416.
Regular
check-ups
It is important for anyone with HIV or viral hepatitis to attend for
regular health check-ups at either outpatient department or GP
appointments, usually every 3-6 months. If an individual develops
unwanted and adverse effects from medication they should also
attend for a check up.
Mental
health
Problems such as stress, anxiety and depression are more
commonly experienced by BBV-positive individuals than the general
population. Encouraging people to talk about problems can help and
involvement in a support group can help reduce feelings of isolation.
Encourage them to approach the relevant service, and if necessary
seek assessment and treatment. Individuals can receive psychiatric
assessment/treatment as part of their BBV treatment. BBV support
services are also available in the community. See:
http://www.waverleycare.org/content/counselling/123/.
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120.
Safer drug
and alcohol
use
The use of alcohol and drugs can be perceived as positive by an
individual, and many people use them to relax. However they can lead
to problems with adherence to medication and have negative effects
on mental/physical health. Some drugs can interact with prescribed
medications and lower treatment completion. Use is also linked to
unsafe sex with increased risk taking while under the influence of
drugs and alcohol (Sublette et al, 2013; Independent Advisory Group
on Sex and HIV, 2007).
There is no evidence to show that moderate drinking (one or two
units per day) has any negative effect on HIV, however heavy
drinking can have an effect on the immune system, ability to tolerate
drugs, treatment adherence, and how people respond to treatment
medication.
Drinking heavily can cause liver damage and for a person with
hepatitis can lead to a quicker disease progression. Individuals with
hepatitis B or C should be advised that even drinking in moderation
can increase the progression of liver disease (SIGN, 2013; World
Health Organisation, 2002).
Smoking
Smoking has been shown to be a risk factor in progressing liver
problems in people with viral hepatitis. It reduces the chance of a good
response to treatment. People with HCV should be advised that
smoking can increase the progression of liver disease (SIGN, 2013).
Smoking has also been linked to a higher likelihood of acquiring
certain AIDS-defining opportunistic infections, such as PCP. There is
also a higher incidence of adverse metabolic effects among people
with HIV who smoke. People should be encouraged and supported
to stop smoking. See AIDSMAP Smoking at
http://www.aidsmap.com/en/docs/12374D45-99EB-4F5F-A4026BA1F8A13E53.asp.
Safer sex
Safer sex is important to reduce the risk of contracting STIs and the
transmission of BBVs. See Appendix F for a leaflet on safer sex and
blood borne viruses.
Safer
injecting
practices
Safer injecting is important to reduce the risk of transmission of
BBVs – see Appendix G for leaflet on injecting drug use and blood
borne viruses. Advice and the provision of sterile injecting equipment
is also important.
Reducing
infection in
the home
It is important to advise BBV-positive individuals how to take simple
infection control procedures at home – see the Infection Control
section.
Dealing with
stigma
Individuals may require support in dealing with stigma and
discrimination in different situations. Family and friends, the
community, the media, relationships, the work place and health care
services can all be sources of stigma and discrimination. It may be
necessary to support an individual in challenging and making a
complaint about discrimination – in some cases direct advocacy will
be necessary. See Combatting Stigma:
http://www.aidsmap.com/Combatting-stigma/cat/80326/
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121.
Sources of
Support
It is important to explore sources of support for individuals, both in the
short and long term, whether from family, relatives, partners or
services.
The Thistle Foundation’s Lifestyle Management Program may be of
interest to people looking for advice on living with a long term
condition. Contact 0131 656 7345 for further details or see leaflet
available at:
http://www.refhelp.scot.nhs.uk/dmdocuments/MECFS/Lifestyle_Management_Leaflet1.pdf
Also the Waverley Care Self Management Program for people with
HIV and hepatitis C:
http://www.waverleycare.org/content/selfmanagementprogramme/21
6/
For further information sources on healthy living:
Hepatitis C – http://www.hepatitisscotlandc.org.uk/living-with-hep-c.aspx
Hepatitis B – http://www.hepatitisscotlandb.org.uk/index.php/living-with-hepatitis-b/how-tohelp-your-body/
HIV – http://www.tht.org.uk/myhiv/Staying-healthy.
STIGMA AND DISCRIMINATION
Stigma is a form of prejudice that discredits or rejects an individual or group because they
are seen to be different from ‘mainstream’ society. When people act on their prejudice
stigma can turn into discrimination.
Discrimination can be defined as any action or measure that results in someone being
treated unfairly because they belong, or are perceived to belong, to a particular
‘undesirable’ group (e.g. a gay man discriminated against because of his sexual
orientation; a person discriminated against because of their race, and an individual
discriminated against due to their hepatitis C positive status).
See AIDSMap for information on Stigma and Discrimination. Available at:
http://www.aidsmap.com/stigma/What-is-stigma/page/1260706/
Stigma and discrimination can lead to:
Failure to seek a test
This can lead to late diagnosis and disease
progression.
Increase in transmission
People who are diagnosed as BBV-positive are more
likely to take steps to avoid transmission than people
who are unaware of their positive status.
Failure to access
services
Individuals who have had a test may not feel able to
access services for fear of others identifying that they
are BBV-positive and the negative consequences
which may follow.
Failure to adhere to
treatment
Individuals may not feel that they can take their BBVrelated medications or attend appointments in case
their BBV status is revealed.
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Social isolation
Individuals can lose contact with family and friends and
find it hard to access other forms of social support.
Discrimination at work
Employers can make assumptions about an individual’s
ability to perform in their job, and work colleagues can
also make negative assumptions about the individual
concerned. Work opportunities may be reduced i.e.
promotion, training.
Psychological problems
Individuals can suffer from low self-esteem, anxiety and
depression.
Physical problems
The failure to seek a test and treatment, adhere to
medication, access support services, or sleep or eat
properly can have a devastating effect on an
individual’s physical health.
Quality of life
Studies have found quality of life is significantly
reduced because of stigma. Stigma has also been
associated with a higher subjective level of symptoms.
Sources: Miller et al 2012, Manos et al 2013, HIV Scotland 2011, Golden 2006, Lert and
Kazatchkine 2007, Strauss and Teixeira 2006, Modabbernia et al 2013.
What can healthcare staff do to combat BBV-related stigma and discrimination?
Reducing the stigma surrounding blood borne viruses is an important tool to help reduce
transmission and improve the treatment of BBVs. The Terrence Higgins Trust (THT) has
carried out work on reducing stigma within the health service. The main points to aid in
reducing stigma are:
• Be clear in your commitment to prevent discrimination and stigmatisation of people
living with BBV and of those assumed to be BBV-positive
• Be explicitly supportive of BBV-positive patients so they are not afraid of being
discriminated against
• Provide staff and colleagues with access to information about BBVs and if
appropriate training workshops
• Display BBV awareness raising educational posters and anti-discriminatory
messages in staff areas and waiting rooms
• Promote guidelines on the treatment of BBV-positive individuals
• Adopt and promote an equality and diversity policy in your practice and organisation
• Adopt a BBV policy in your practice and organisation or make sure that BBVs are
mentioned in your statement of good practice
For further information on healthcare rights:
http://www.hivscotland.com/living-with-hiv/your-rights/
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Some groups vulnerable to BBV infection may suffer compounding discrimination due to
racist, sexist, xenophobic and homophobic views. These groups can include:
• Black and ethnic minority groups
• Immigrants / asylum seekers / refugees
• Gay, Bisexual, and other Men who have Sex with Men (MSM)
• Injecting Drug Users
• Prisoners
• Sex workers
• Women
Stigma/discrimination is prevalent for people with a BBV from the BME, community;
particularly from African communities. They can face stigma-related to their race and HIV
status (Scottish Government, 2010). Waverley Care’s African Health Project provides
support to people from African communities affected by HIV. For further information:
http://www.waverleycare.org/content/africanhealthproject/117/.
EMPLOYMENT
There are some jobs which people with a BBV diagnosis are restricted from doing. If an
individual works in healthcare they are obliged to inform and follow advice from their
occupational health department (see the Infection Control section for details). They are
not excluded from working in health care settings.
See the NAM for guidance on employment:
http://www.aidsmap.com/Work/page/1254870/
In most cases people are under no obligation to tell their employer about a BBV diagnosis.
However, they may want to consider the following:
Legal obligations – If an individual’s condition physically and/or mentally affects the way
they perform at work, their employer has legal obligations towards them. This applies
under the Equality Act (2010) if they fulfil the criterion that defines 'disability'. They do not
have to name their condition to be covered under this Act. If they are covered by this Act
the employer is obliged to make certain allowances.
This can include reasonable adjustments, including altering working hours and providing
adaptations to help the person do the job. For further information:
https://www.gov.uk/rights-disabled-person/overview
Sick Leave Allowances – A BBV-positive individual may be entitled to statutory sick pay
(SSP) to cover any medical appointments or sickness absences.
Details of the latest SSP entitlements and other advice are. Available at: the Department
for Work and Pensions website: http://www.dwp.gov.uk/
IMMIGRATION
People who come to the UK can face a number of issues including:
• Financial hardship
• Limited access to NHS services
• Housing issues
• Employment issues.
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An individual’s status as a legal immigrant, an illegal immigrant, an asylum seeker, or a
refugee can dictate whether they have a right to employment, benefits, housing, and free
access to health-care services.
For more information:
Scottish Refugee Council
http://www.scottishrefugeecouncil.org.uk/how_we_can_help/other_useful_websites
Home Office UK Border Agency, http://www.bia.homeoffice.gov.uk/
Information on immigration and customs regulations and how to make an application to
stay in the UK.
Terrence Higgins Trust, http://www.tht.org.uk/myhiv/Your-rights/immigration
Information on HIV and immigration.
TRAVEL AND TRAVEL INSURANCE
• Some countries such as the United States require additional visas to allow people
who are HIV positive to enter the country. It is important to find out about entry
restrictions before travel – contact the Embassy or High Commission of the country
concerned, http://uk.embassyhomepage.com/
• People should take extra supplies of medication with them
• People should carry their medical details with them – they may require treatment
abroad
• Immunisations – people should find out which immunisations they need and whether
it is safe to have them
• Consideration should be made about fitness to travel
• Travel insurance is available but will be more expensive for someone who is BBVpositive
• It is necessary to maintain safer sex and safer injecting behaviours when travelling,
especially in areas of high BBV prevalence
• The Blood Care Foundation can ensure the supply of safe blood to members
throughout the world. Payment is required and they are a not-for-profit organisation,
http://www.alchealth.com/bcf.htm
• For comprehensive advice about travel and HIV, see AIDSMAP Travel at
http://www.aidsmap.com/Travel/page/1497497/.
Travel Insurance
Most travel policies exclude liability for paying out on medical claims that arise from HIV,
AIDS, hepatitis C and sexually transmitted infections.
However, some travel policies do cover HIV-related claims.
Contact the Terrance Higgins Trust for information,
http://www.tht.org.uk/myhiv/Your-rights/Travel/Travel-insurance
The Association of British Insurers, https://www.abi.org.uk/
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SECTION REFERENCES
Golden, J., Conroy, R.M., Dwyer, A.M., Golden, D., and Hardouin, J-B. (2006) ‘Illnessrelated stigma, mood and adjustment to illness in persons with hepatitis C’. Social Science
and Medicine 63 pp 3188-3198
HIV Scotland (2011) Select Committee on HIV and AIDS in the UK – call for evidence.
Available at: http://www.hivscotland.com/downloads/1314805124Lords%20Select%20Committee%20-%20HIV%20Scotland%20Submission.pdf
Independent Advisory Group on Sex and HIV (2007) 'Sex, Drugs, Alcohol, and Young
People'. Available at:
http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_co
nsum_dh/groups/dh_digitalassets/documents/digitalasset/dh_075591.pdf
Lert, F., and Kazatchkine, M.D. (2007) ‘Antiretroviral HIV treatment and care for injecting
drug users: An evidence based overview’. International Journal of Drug Policy 18 pp 255261
Manos, M. Ho, C. Murphy, R. Shvachko, V. (2013) 'Physical, social, and psychological
consequences of treatment for hepatitis C: a community-based evaluation of patientreported outcomes'. The Patient, 6(1), pp 23-24
Modabbernia, A. Poustchi, H. Malekzadeh, R. (2013) 'Neuropsychiatric and psychosocial
issues of patients with hepatitis C infection: a selective literature review'. Hepatitis
Monthly, 13(1)
Miller, E. McNally, S. Wallace, J. Schlichthorst, M. (2012) 'The ongoing impacts of
hepatitis c – a systematic narrative review of the literature'. BMC Public Health, 12(672)
Scottish Government (2010) 'The Sexual Health and Blood Borne Virus Framework 20112015'. Edinburgh: Scottish Government
SIGN (2013) 'Management of Hepatitis C – A National Clinical Guideline'. SIGN 133 –
Available at: http://www.sign.ac.uk/guidelines/fulltext/133/index.html
Strauss, E and Teixeira M.C.D. (2006) ‘Quality of life in hepatitis C’. Liver International 26
pp 755-765
Sublette, V. Douglas, M. McCaffery, K. George, J. Perry, K. (2013) 'Psychological, lifestyle
and social predictors of hepatitis C treatment response: a systematic review'. Liver
International, 33(6), pp 894-903
World Health Organisation (2002) Department of Communicable Diseases Surveillance
and Response Hepatitis B.
Available at: http://www.who.int/csr/disease/hepatitis/whocdscsrlyo20022/en/
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PALLIATIVE CARE
SUMMARY BOX
• Palliative care is the identification, careful assessment and treatment of pain and
other symptoms (physical, psychosocial, emotional or spiritual) and can be
provided at any stage of a life-threatening illness.
• All patients, regardless of their diagnosis, should be able to access palliative
care.
• Shared care among a multidisciplinary team is key to the provision of palliative
care for people with advanced and terminal AIDS and hepatitis.
• The majority of palliative care is provided by generalist health and social care
staff who refer for specialist input and management when needed.
• Palliative care and bereavement resources are available on the NHS Lothian
Intranet.
SECTION CONTENT AND LINKS
What is palliative care?
Palliative care in HIV/Hepatitis
Identification of patients and care planning at the end of life
Anticipatory Care Planning
Symptom Control
Pain and Assessment of Pain
Treatment Decisions
Specialist Palliative Care Services and Guidance Resources
DNAR Policy and Preparing for and Dealing with Death
Confidentiality
WHAT IS PALLIATIVE CARE?
Palliative care aims to improve the quality of life of patients and their families who are
facing problems associated with a life-threatening illness. It involves the prevention and
relief of suffering by means of early identification, careful assessment and treatment of
pain and other problems, physical, psychosocial or spiritual.
All patients, regardless of diagnosis, should be able to access palliative care appropriate
to their individual needs (Scottish Government, 2008). For this to happen in practice, an
integrated approach is essential.
PALLIATIVE CARE IN HIV/HEPATITIS
Good quality palliative care can prevent frequent visits to the hospital or clinic. Failure to
provide palliative care can result in untreated symptoms that hamper an individual’s ability
to continue his or her activities of daily life.
Source: World Health Organisation, 2002
Clinical evidence has shown that patients with HIV infection require palliative care in order
to:
• Control pain and other symptoms
• Promote adherence through reduction of side-effects and toxicity associated with
antiretroviral therapy (ART)
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• To manage life limiting co-morbidities such as cancers and end stage liver disease
• To provide end of life care for those whom antiretroviral therapy fails or are unable
to access it.
Source: Harding et al (2005)
Identification of patients and Care Planning at the End of Life
People within the last few months of their life should be identified and assessed for
physical, psychological, social and spiritual palliative care needs. This will encourage the
planning and implementation of effective palliative treatment and care.
The Supportive and Palliative Care Indicators Tool (SPICT) is recommended for use by
GPs to identify patients at risk of deteriorating and dying. This should then encourage
placement of them on GP practice palliative care register. This tool is clear, concise and
evidence based. It can be used by a range of professionals in various care settings.
For further information on SPICT and the support at the end of life, see www.spict.org.uk.
For further resources for palliative care, see http://www.nhsinform.co.uk/palliativecare.
Anticipatory care planning
This is a central document that should ensure between all health care professionals
involved and cover the following key points:
• Next of kin and details of any welfare attorney
• Level of intervention for expected clinical deterioration
• Preferred place of care
• CPR status
• Wishes on tissue donation
• Medication prescribed for use if required
A care plan could be documented on the Key Information Summary (KIS) which is part of
the central GP practice electronic software system. This system with patient consent can
mean important information is available to out of hour’s services and some secondary
care services. For further information on KIS, see
http://intranet.lothian.scot.nhs.uk/nhslothian/healthcare/az/anticipatorycareplan/Pages/default.aspx.
Symptom control
In advanced disease, individuals with HIV can experience symptoms such as anorexia,
fatigue, pain, nausea and vomiting, diarrhoea, fever, and cough. Symptoms can arise from
the direct effect of HIV viraemia, effects from ART drug therapy, opportunistic diseases,
immune reconstitution or unrelated causes.
Individuals with viral hepatitis can experience symptoms such as fatigue, anorexia, weight
loss, pain, fever, poor concentration, anxiety, and depression. End stage liver disease is
associated with ascites, varices, encephalopathy, pruritis, fatigue and malnutrition.
Symptoms must be assessed, management agreed and implemented, and ongoing reassessment undertaken if effective symptom control is to be achieved.
National Scottish palliative care guidelines are being developed and should be published
in 2014. They will be based on existing Lothian guidelines:
http://www.palliativecareguidelines.scot.nhs.uk/default.asp.
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Pain
Pain is experienced by around 50-88% of individuals with advanced HIV/AIDS disease,
and studies have shown it is often under assessed, or under estimated (Harding et al,
2005; Nicholson, 2000; Potterat and Brody, 2002). Pain associated with infections (e.g.
herpes simplex infection) is common even in early disease. Headache, arthralgia and
myalgia are more common than in the non-infected population. Painful peripheral
neuropathy occurs in up to 20% of individuals receiving HIV medication which may be
caused by drugs, or HIV, or both.
Pain is also common in hepatitis, including arthritis, fibromyalgia, and peripheral
neuropathy. Prevalence rates for general musculoskeletal pain reported among HCV clinic
populations range from 50-81% (Silberbogen et al, 2007). End stage liver disease brings
complications such as ascites, varices, encephalopathy, peritonitis, and pruritis – all with
associated pain, and severe muscle and joint pain (Adam, 2000; Larson and Randall
Curtis, 2006).
Assessment of pain
Thorough assessment of pain, and the cause of pain, is very important. A significant
proportion of patients will have more than one type of pain and may require different
treatments. Advice on the choice of treatment and an explanation of any likely adverse
and unwanted effects of medication can improve adherence and lead to improved
treatment outcomes.
A guide to the assessment and management of pain is available in the Lothian palliative
care guidelines.
Achieving adequate pain relief in current drug users may be problematic. Many drug users
will be on substitute prescribed opiate drugs (Methadone, Dihydrocodeine, Buprenorphine
or Morphine Sulphate Tablets (MST)) as well as benzodiazepines (Valium or
Temazepam). Opioid receptors may be saturated and any pain assessment has to take
this into account so that adequate pain relief can be given. Advice can be sought from
palliative care teams, or from the Consultant/Senior Lecturer in Anaesthesia and Pain
Medicine (currently Lesley Colvin) at the WGH on 0131 537 1646.
The potential of antiretroviral medications for interactions must be considered when
prescribing analgesics. For information: http://www.hiv-druginteractions.org.
Treatment decisions
The views of the patients and carers, the treatment team, primary healthcare team, and
the specialist palliative care team may all help to reach a balanced decision about
appropriate treatment. In some cases it is not clear whether ‘aggressive’ curative
treatment is the best option. There may come a point when the patient decides that
although further life-prolonging treatment is possible they would rather pursue quality than
quantity of life. These decisions require much discussion and appropriate information.
Specialist palliative care services and guidance resources
Details of Lothian’s palliative care services are. Available at:
http://www.nhslothian.scot.nhs.uk/Services/A-Z/PalliativeCare/Pages/default.aspx.
In addition, Milestone (Waverley Care) provides short term residential care to people with
HIV/AIDS and hepatitis C. http://www.waverleycare.org/content/ourservices/108/.
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Information about Palliative Care services throughout Scotland can be found at:
http://www.palliativecarescotland.org.uk/.
For information and a series of leaflets about the end of life and end of life care planning,
see http://www.goodlifedeathgrief.org.uk/content/online_resources/.
Confidentiality
Some individuals with HIV/AIDS or viral hepatitis will have concerns about disclosing their
infection status to various individuals including family, friends and carers, due to the fear
of discrimination or rejection.
Confidentiality issues may be of particular concern in small communities or in rural and
remote areas, and may extend to consideration of the certified cause of death on the
death certificate.
Reassurance and assistance can be provided about appropriate disclosure. Explaining
the process of death certification and the inclusion of diagnoses on a death certificate can
help people deal with these fears.
DNAR
The do not attempt CPR policy is a framework for CPR decisions and has resources to
inform patients in this process. This should clearly be discussed with patients/families and
clearly documented. See the DNAR policy for further guidance:
http://intranet.lothian.scot.nhs.uk/NHSLothian/Corporate/AZ/Clinical%20and%20Corporate%20Learning/ClinEducationTrain/Resuscitation/dnarpolic
y/Pages/default.aspx
Preparing for and dealing with death
Helping to prepare the individual and the relatives / friends for death is an integral part of
palliative care. Details of useful agencies can be found at
http://intranet.lothian.scot.nhs.uk/NHSLothian/Healthcare/AZ/BereavementService/Pages/Resources.aspx
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SECTION REFERENCES
Harding, R., Easterbrook, P., Higginson, I.J., Karus, D., Raveis, V.H., and Marconi, K.
(2005) ‘Access and Equity in HIV/AIDS palliative care: a review of the evidence and
responses’. Palliative Medicine, 19, pp 251-258
Larson, A.M. Randall Curtis, J. (2006) ‘Integrating Palliative Care for Liver Transplant
Candidates “Too well for transplant, too sick for life"'. Journal of the American Medical
Association, 295(18), pp 2168-2176
Nicholson, J. (2000) ‘Can the development of palliative care services meet the needs of
people with HIV?’ Journal of Palliative Care, 16(2), pp 37-43
Potterat, J.J. and Brody, S. (2002) ‘HIV epidemicity in context of STI declines: a telling
discordance.’ Sexually Transmitted Infections, 78, p.467
Scottish Government (2008) 'Living and Dying Well: a national action plan for palliative
and end of life care in Scotland'. Edinburgh
Silberbogen, A.K., Janke E.A., Hebenstreit, C. (2007) ‘A Closer Look at Pain and Hepatitis
C: Preliminary Data from a Veteran Population’. Journal of Rehabilitation Research &
Development, 44(2), pp 231-244
World Health Organisation (2002) 'Palliative Care'. Available at:
http://www.who.int/hiv/topics/palliative/PalliativeCare/en/print.html.
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SERVICES
The following list is of services specifically targeted at people infected or affected by
BBVs. Click on the links for more information
HIV, HEPATITIS C AND B TESTING SERVICES IN LOTHIAN
• Primary Care - GP
General practitioners, practice nurses and some other primary health care staff will
offer HIV, hepatitis B and C testing.
• Chalmers Sexual Health Centre
2A Chalmers Street, Edinburgh, EH3 9ES
0131 536 1070
http://www.lothiansexualhealth.scot.nhs.uk/Services/HowToFindUs/Pages/default.as
px. The website of the Chalmers Sexual Health Centre tells you where and when
you can access the sexual and reproductive health services that you need. It lists
the names of the services that are offered by NHS Lothian and other helpful
organisations and gives you the place, the opening times and contact details.
• Regional Infectious Diseases Unit (RIDU) - BBV Testing Team
Ward 41 Outpatient Dept, Western General Hospital, Edinburgh
Tel. 0131 537 2843/2850
http://www.nhslothian.scot.nhs.uk/services/a-z/ridu/Pages/default.aspx
HIV, hepatitis B and C testing and counselling clinic.
• Harm Reduction Team
Spittal Street Centre – entrance via Lady Lawson Street
Edinburgh EH3 9DU
Tel. 0131 537 8300
They offer dry blood spot testing for hepatitis B and C and HIV.
• Specialist Virology Centre
Royal Infirmary of Edinburgh, Little France
Tel. 0131-242 6027/6048
Advice on laboratory testing services and results.
BBV TREATMENT SERVICES
• Centre for Liver and Digestive Disorders (CLDD)
Royal Infirmary of Edinburgh, Little France
Tel. 0131-242 3063
Care, monitoring and treatment for people with viral hepatitis including hepatitis B
and C) +/- liver disease. Referral via GP or other hospital department.
• There are 4 HCV outreach clinics in Lothian staffed by BBV nurse specialists from
RIDU and CLDD:
• Edinburgh Access Practice at Leith Street and the Cowgate
• North-East Recovery Hub, 5 Links Place, Leith Links, Edinburgh
• DTTO, Alva Street
• and in West Lothian
HCV treatment clinics are also offered in HMP Edinburgh and Addiewell.
• Regional Infectious Diseases Unit (RIDU)
Ward 41 Outpatient Dept, Western General Hospital, Edinburgh
Tel. 0131 537 2843/2850
Care, monitoring and treatment for HIV, hepatitis B and C.
• Chalmers Sexual Health Centre
2A Chalmers Street, Edinburgh, EH3 9ES
0131 536 1070
http://www.lothiansexualhealth.scot.nhs.uk/Services/HowToFindUs/Pages/default.as
px. Care, monitoring and treatment for those with HIV.
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• Paediatric Services (BBV)
Dr Laura Jones, Consultant Paediatricians, RHSC, Community Child Health
Department, 10 Chalmers Crescent EH9 1TS
Tel. 0131 536 0971
Provide specialist service for children and young people affected by HIV, hepatitis B
and C.
HOSPICES
• St Columba’s Hospice
Kirklands House, Gogarmuir Road, Gogarbank, Edinburgh EH12 9BZ
Tel. 0131 551 1381
Fax: 0131 551 2771
E-mail: [email protected]
http://www.stcolumbashospice.org.uk/
In-patient day care and counselling for those with advanced disease, and family
support.
• Marie Curie Hospice
Frogston Road West, Edinburgh EH10 7DR
Tel. 0131 470 2201
Fax 0131 470 2200
E-mail: [email protected]
http://www.mariecurie.org.uk/
In-patient care, day care, care at home for those with limiting disease, and family
support.
SOCIAL WORK SERVICES - incl Support for BBVs and Substance Misuse
• Edinburgh City
For adult social care services contact:
• Social Care Direct
Chesser House, 500 Gorgie Road, Edinburgh, EH11 3YJ
Tel. 0131 200 2324
E-mail: [email protected]
http://www.edinburgh.gov.uk/info/1347/social_care_and_health/716/contact_soci
al_care
• Midlothian
Contact one of the local social work centres below.
• Loanhead Adults and Community Care
4 Clerk Street, Loanhead EH20 9DR
Tel. 0131 271 3900
• Dalkeith Social Work Centre
Fairfield House, 8 Lothian Road, Dalkeith, EH22 3AA
Tel. 0131 270 7500
• West Lothian
http://www.westlothian.gov.uk/social_health/
• East Lothian
• East Lothian Council
John Muir House, Haddington, EH41 3HA
Tel. 01875 824309
http://www.eastlothian.gov.uk/info/1347/social_care_and_health
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BBV SUPPORT SERVICES
• Waverley Care
3 Mansfield Place, Edinburgh EH3 6NB
Tel. 0131 466 9883
http://www.waverleycare.org/
Offer peer-to-peer, befriending, counselling and health advice.
• Day Care Service (Milestone)
Tel. 0131 441 6989
http://www.waverleycare.org/content/milestone/110/
• Befriending Services
Tel. 0131 441 6989
http://www.waverleycare.org/content/befriendingservices/119/
One-to-one befriending service.
• Counselling Service
Tel. 0131 558 1425
http://www.waverleycare.org/content/counselling/123/
Short-term one-to-one counselling.
• Positive Help
13a Great King Street, Edinburgh EH3 6QW
Tel. 0131 558 1122
Fax: 0131 558 3636
Email: [email protected]
http://www.positivehelpedinburgh.co.uk/default.aspx?pageID=1
For HIV and hepatitis. Practical help to those affected by HIV/AIDS and hepatitis C
in Edinburgh and the Lothians. Transport to appointments, and home support
• C Plus
22 Laurie Street, Edinburgh EH6 7AB
Tel. 0131 478 7929
Email: [email protected]
http://www.addaction.org.uk/default.asp?section=2&sectionTitle=Homepage
Lothian-wide support service for people with or affected by hepatitis C. Information,
advice, one-to-one telephone support; complementary therapies and social
activities. Also support attendance at appointments for treatment.
• Community HIV Team
Spittal Street Centre, 22 Spittal Street, Edinburgh EH3 9DU
Tel. 0131 537 8300
A community mental health service for people infected or affected by HIV who
experience psychological or psychiatric problems. Includes community mental
health nursing and clinical psychology. Referral by statutory and non-statutory
services.
BEREAVEMENT SUPPORT
• Cruse Bereavement Care Scotland
General bereavement counselling service
3 Rutland Square, Edinburgh EH1 2AS
Cruse Edinburgh 0131 229 6275; Helpline Tel. 0845 600 22 27
Email: [email protected]
http://www.crusescotland.org.uk/
Bereavement Support Service
Royal Infirmary of Edinburgh
Advice and info on bereavement and signposting (they do not offer counselling).
Tel. 0131 242 6995
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LOTHIAN SUBSTANCE MISUSE SERVICES
• Edinburgh Alcohol and Drug Partnership
http://www.edinburghadp.co.uk/Pages/default.aspx
• East Lothian Alcohol Problem Service (APS)
http://www.eastlothian.gov.uk/a_to_z/service/285/alcohol_advice_and_support
• Midlothian and East Lothian Drugs and Alcohol Partnership (MELDAP,
Dalkeith)
http://www.meldap.co.uk/index.php
• MELDAP Service Directory
http://www.meldap.co.uk/data/uploads/service-directory-webview-jan-2013.pdf
• Midlothian Substance Misuse Service
Glenesk Centre, 1/5 Duke Street, Dalkeith EH22 1BG
Tel. 0131 660 6822
http://www.midlothian.gov.uk/info/1406/alcohol_drugs_and_substance_abuse/323/m
idlothian_substance_misuse_service
• West Lothian Addictions Care Partnership
Consisting of SWAT, NHS Addictions Service, West Lothian Drug & Alcohol Service
and Cyrenians Recovery Service.
http://www.westlothian.gov.uk/social_health/1404/1405/
• East Lothian Locality Clinic
Roodlands Hospital, Haddington, East Lothian
Tel. 0131 660 3566 (Admin)
• Harm Reduction Team
Spittal Street Centre, Lady Lawson Street, Edinburgh EH3 9DU
Tel. 0131 537 8300
• Lothians and Edinburgh Abstinence Programme (LEAP)
Woodlands House, Astley Ainslie Hospital, 74 Canaan Lane, Edinburgh EH9 2TB
Tel. 0131 446 4400
http://www.nhslothian.scot.nhs.uk/services/a-z/leap/Pages/default.aspx
LEAP is a 3-month treatment and rehabilitation programme for those dependent on
alcohol and other drugs (including opiates, stimulants, cannabis, tranquillisers etc).
• Narcotics Anonymous
Helplines 07071 22344 or 0300 999 1212
SERVICES TO SUPPORT SPECIFIC GROUPS
Gay / bisexual / lesbian / transgender / MSM/ Prostitutes / Sex workers / Escorts
• Gay Men’s Health
10a Union Street, Edinburgh EH1 3LU
Tel. 0131 558 9444. Email [email protected]
http://www.gmh.org.uk/about/home.html
Counselling, group work, support, training and education.
• Lesbian, Gay, Bisexual and Transgender Centre for Health and Wellbeing
9 Howe Street, Edinburgh EH3 6TE
Tel. 0131 523 1100. Email [email protected]
http://www.lgbthealth.org.uk/
• ROAM
Tel. 077 7462 8227. Email: [email protected]
http://www.roam-outreach.com/Pages/default.aspx
BBV testing, general health testing and outreach work for men who have sex with
men (MSM).
• SCOT-PEP – (Scottish Prostitutes Education Project)
The Matrix, 62 Newhaven Road, Edinburgh EH6 5QB
Tel. 0131 622 7550
http://www.scot-pep.org.uk/
Advice, support and information and clinic services for male and female sex industry
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workers. Safer sex supplies, personal alarms and needle exchange, ‘ugly mugs’
scheme (sharing info. about violent clients), remote reporting, police liaison for
street-based sex workers.
Young People and Children
• Positive Help
Tel. 0131 225 4766
http://www.positivehelpedinburgh.co.uk/page-sub.aspx?pageID=11
Befriending service to children and young people affected by HIV or HCV.
• Caledonia Youth
Tel. 0131 229 3596
http://www.caledoniayouth.org/
Provides advice on sexual health and relationships to young people.
• Edinburgh Young Carers
http://www.youngcarers.org.uk/index.php
This project works with and on behalf of young carers in the Edinburgh area.
• Waverley Care - Children & Families Project
Tel. 0131 558 1425
http://www.waverleycare.org/content/childrenandfamilies/120/
HIV support to children and young people affected by HIV. Includes one-to-one
group work and play schemes.
Black and Minority Ethnic Services (BBV specific)
• The Minority Ethnic Health Inclusion Project (MEHIP)
Springwell House Health Centre, Ardmillan Terrace, Edinburgh EH11 2JL
Tel. 0131 537 7565
Has link workers who speak a variety of languages, including Arabic and Kurdish,
Cantonese, Bengali, Urdu and Punjabi, and will help people link into primary health
care services, as well as provide advice and information on support services in the
community.
• African Health Project
Tel. 0131 661 0982 or 07956613280
www.waverleycare.org/content/africanhealthproject/117/Lothian African Support
Worker based at Waverley Care and also works in the community, provides
emotional and practical support to individuals with HIV, and to professionals.
Carers of People with BBVs
• Edinburgh Community Healthcare Partnership
www.nhslothian.scot.nhs.uk/Community/EdinburghCHP/ServicesSupportCarers/Pag
es/default.aspx
• Carers of East Lothian
149 North High Street, Musselburgh EH21 6AN
Tel. 0131 665 0135
www.coel.org.uk
• Carers of West Lothian
Strathbrock Partnership Centre
189a West Main Street, Broxburn EH52 5LH
Tel. 01506 771750, Fax: 01506 858882
www.carers-westlothian.com/
• HIV-AIDS Carers & Family Service Provider Scotland
10 Elderpark Workspace, 100 Elderpark Street, Glasgow G51 3TR
Tel. 0141 445 8797. Email: [email protected].
http://www.hiv-aids-carers.org.uk/.
Provide support and services to carers, families, partners and friends who have a
loved one with HIV or AIDS.
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• VOCAL Carers Centre, 8-13 Johnston Terrace, Edinburgh, EH1 2PW
Tel. 0131 622 7621
www.vocal.org.uk/
Voices of Carers Across Lothian supports carers living in Edinburgh and the
Lothians.
Women
• Waverley Care
Tel. 0131 558 1425
http://www.waverleycare.org/content/women/180/
Support for women with HIV or HCV with groups, peer-to-peer and advice.
PATIENT SUPPORT SERVICES – WEBSITES
www.hivscotland.com HIV Scotland
www.nat.org.uk National AIDS Trust
www.positivenation.co.uk National HIV Magazine
www.tht.org.uk/ Terence Higgins Trust – HIV / AIDS charity
www.haemophilia.org.uk Haemophilia Society
www.positivelyuk.org
www.waverleycare.org Waverley Care Trust
www.nhs.uk/livewell/hepatitisc NHS Living with hepatitis C site – helpline available
www.hepctrust.org.uk/ National hepatitis C organisation – helpline available
www.avert.org/ International AIDS charity, comprehensive information
www.britishlivertrust.org.uk National charity – good information on viral hepatitis and all
kinds of liver problems – helpline available
www.nhs.uk/worthtalkingabout/Pages/sex-worth-talking-about.aspx/protection/condomhow-to-use NHS sexual health site – safer sex information
NATIONAL HELPLINES
• British Liver Trust
Open Mon-Fri, 9am-5pm
0800 652
7330
• Carers UK
For those caring for people with diseases such as hepatitis C.
The line is open on Mon-Fri, 10-12am and 2-4pm
0808 808
7777
• Haemophilia Society
Mon-Fri, 9am-5pm
0800 018
6068
• HIV I-base
For information and advice on HIV-related medication and
treatment. Mon-Fri, 10am-5pm
0808 800
6013
• National African AIDS Helpline
Mon-Fri, 10am-6pm
0800 0967
500
• Sexual Health Line
7 days a week, 24 hours a day
0800 22 44
88
• Scottish National Public HIV/AIDS Information Centre
Mon and Fri, 11am-4pm; Tue-Thu, 11am-7pm
0131 661
0982
• Terrence Higgins Trust Direct (HIV/AIDS charity)
Mon-Fri, 10am-8pm
0808 802
1221
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APPENDICES
Appendix A: Clinical Indicator Diseases for Adult HIV Infection
Appendix B: Risk Factor Classification – A Rough Guide
Appendix C: List of Areas with Intermediate to High Sero-Prevalence
Appendix D: Components of a BBV Risk Assessment
Appendix E: Your Journey through Hepatitis C Care
Appendix F: Safer Sex and Blood Borne Viruses (BBVs)
Appendix G: Injecting Drug Use and Blood Borne Viruses
Appendix H: HCV Testing Flowchart
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APPENDIX A:
CLINICAL INDICATOR DISEASES FOR
ADULT HIV INFECTION
AIDS-defining
Conditions
Other conditions where HIV
testing should be offered
Respiratory
Tuberculosis
Pneumocystis
Bacterial pneumonia
Aspergillosis
Neurology
Cerebral toxoplasmosis
Primary cerebral
lymphoma
Cryptococcal meningitis
Progressive multifocal
leukoencephalopathy
Aseptic meningitis/encephalitis
Cerebral abscesses
Space occupying lesion of unknown
cause
Guillain Barre syndrome
Transverse myelitis
Peripheral neuropathy
Dementia
Leukoencephalopathy
Dermatology
Kaposi’s sarcoma
Severe or recalcitrant seborrhoeic
dermatitis
Severe or recalcitrant psoriasis
Multidermatomal of recurrent herpes
zoster
Gastroenterology Persistent
cryptosporidiosis
Oral candidiasis
Oral hairy leukoplakia
Chronic diarrhoea of unknown cause
Salmonella, shigella or campylobacter
Hepatitis B infection
Hepatitis C infection
Oncology
Non-Hodgkin’s
lymphoma
Anal cancer or anal intraepithelial
dysplasia
Lung cancer
Seminoma
Head and neck cancer
Hodgkin’s lymphoma
Castleman’s Disease
Gynaecology
Cervical cancer
Vaginal intraepithelial neoplasia
Cervical intraepithelial neoplasia
grade 2 or above
Any unexplained dyscrasia including:
Thrombocytopenia
Neutropenia
Lymphopenia
Haematology
Ophthalmology
Cytomegalovirus
retinitis
ENT
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Infective retinal diseases including
herpes viruses and toxoplasma
Any unexplained retinopathy
Lymphadenopathy of unknown cause
Chronic parotitis
Lymphoepithelial parotid cysts
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Other
Mononucleus – like syndrome
(primary HIV infection)
Pyrexia of unknown origin
Any lymphadenopathy of unknown
cause
Any sexually transmitted infection
Source: BASHH, BHIVA, and BIS (2008)
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APPENDIX B:
RISK FACTOR CLASSIFICATION – A ROUGH GUIDE
The following ‘BBV risk factor classification’ can be used as a rough guide to help assess
the level of risk.
High Risk
Unprotected sex (anal or vaginal) with a known HIV positive or
chronically infected HBV person:
• Past or current injecting drug use with ‘sharing’ of any
paraphernalia
• Homosexual unprotected anal intercourse
• African nationals and people from other areas of high
seroprevalence e.g. China, may have been exposed to BBVs
• Recipients of blood or blood products pre-1985 screening, or
recipients of blood products in resource poor / developing countries
• Unprotected sex with multiple partners.
Medium Risk
Past or current injecting drug use with no reported sharing (often may
not remember):
• Unprotected sex with an injecting drug user
• Unprotected sex with anyone from an area of high seroprevalence
(e.g. Africa, Asia)
• Heterosexual anal intercourse
• Homosexual protected anal intercourse.
Low Risk
Frottage, mutual masturbation. Other risk factors:
• Oral sex: increased risk associated with unprotected receptive oral
sex, having semen in the mouth, poor dental hygiene and upper
respiratory tract infections, menstruation. HBV is more easily
transmitted than HIV or HCV by this route
• Occupational accidents: such as needle-stick injury (can quantify
this), bites.
Unknown
Level of Risk
Blood sharing activities:
• sharing sex toys, razors, toothbrushes, tattooing, body piercing,
acupuncture, electrolysis etc. Sharing ‘snorting’ equipment for drug
use (no estimate of risk).
Note: blood transfusions, blood products and organ donations in the UK are screened
for HIV, HBV, and HCV. However in other countries, particularly developing countries,
the level of screening may be limited/non-existent so there is still a potential risk of
transmission by these routes. Therefore when providing travel health advice this
potential risk should be explained.
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APPENDIX C:
LIST OF AREAS WITH INTERMEDIATE TO HIGH SEROPREVALANCE
HIV
HCV
HBV
Sub-Saharan Africa
Africa
Africa
Asia
Asia
Asia (except Sri Lanka)
Eastern Europe
Eastern
Europe
Eastern Europe (all countries except Hungary),
Greece, Italy, Malta, Portugal, Spain
Caribbean
South
America:
Brazil, Bolivia,
Guyana
Caribbean: Antigua and Bermuda, Dominica,
the Dominican Republic, Granada, Haiti,
Jamaica, Puerto Rico, St Kitts and Nevis,
St Lucia, St Vincent and Grenadines,
Trinidad and Tobago, Turks and Caicos
South Pacific Islands (except non-indigenous
populations of Australia and New Zealand)
The Arctic (indigenous populations)
South America: Argentina, Bolivia, Brazil,
Ecuador, Guyana, Suriname, Venezuela,
Peru and the Amazon regions of Columbia
Central America: Belize, Guatemala,
Honduras, Panama
Middle East (except Cyprus)
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APPENDIX D:
COMPONENTS OF A BBV RISK ASSESSMENT
General medical
history
A history and dates of blood transfusions (including major
trauma or surgery during which the patient may have been
unaware of blood transfusion)
• Tattoos (including where, when and whether done
professionally)
• Country of birth and residence
• Cultural practices (such as initiation ceremonies)
• Family history
• Immunisation history
• Piercing and other body modification
• Current baseline knowledge about HIV, STIs, hepatitis B
virus (HBV) and hepatitis C virus (HCV).
Drug (including
alcohol) history
checklist
Drug use (past and present)
• Type of drugs used (prescription, alcohol and tobacco,
illegal)
• The frequency of drug use
• The duration of drug use
• The most recent occasion of use
• Routes of administration
• Sharing of injecting equipment (including swabs, filters,
water, spoons etc.), or of any drug taking equipment such
as straws / notes for snorting, or pipes for smoking
• Associated harms and evidence of dependence
• Motivation to cease drug use or use non-injecting routes
of administration
• Are you concerned about your drug use?
Important
information to obtain
about injecting drug
use includes
• Whether and when any needles, syringes or other drug
injecting equipment (such as swabs, water or filters) were
shared
• The types of drugs injected
• How often do you inject?
• Do you inject alone, or with other people?
• Do you know how to inject safely?
Adapted from: ASHM (Bradford 2008)
Sexual History
Recommended components of a basic sexual health history
can be found on the NHS Lothian referral guidelines
website. There are also guidelines for when and how to
refer to sexual health services - see the hyperlink below this
table.
A basic sexual history should include:
• Date of last sexual intercourse
• Geographical location
• Casual or regular partner
• Partner’s gender
• Partner’s nationality
• Contraceptive method used if any
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• Details of condom use (Used efficiently? Put on before
any penetration?)
• Nature of sexual activity (higher risk of transmission if
blood involved)
• Other partners in the last 3 months
• Sex outside the UK
• previous STIs, BBV status and testing.
For guidelines for referral to sexual health services, see:
http://www.refhelp.scot.nhs.uk/index.php?option=com_content&view=article&id=895:sexu
al-health-services-home&catid=109:sexual-health-services&Itemid=1532
For guidelines for the management of sexually transmitted infections in primary care, see:
http://www.bashh.org/BASHH/About_BASHH/BASHH_Publications/BASHH/About_BASH
H/BASHH_Publications.aspx
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APPENDIX E:
YOUR JOURNEY THROUGH HEPATITIS C CARE
You will be referred to the hospital out-patients clinic: a letter in the post will tell you
about your first appointment.
You will be told about C-Plus and Waverley Care (contact details below) who can give you
information, advice and support.
C-Plus or Waverley Care will be able to tell you about hepatitis C infection - how it can affect you,
what you can do to help yourself and what treatment involves.
They can also help you get to clinic appointments and to get other support that you might need.
Positive Help can provide transport to clinic appointments if you live in Edinburgh.
At the hospital you will see a specialist nurse or doctor who will take blood tests to check
on your infection and how your liver is.
You will also be referred for scans of your liver.
You will have several appointments to attend to make sure you are ready for treatment,
which may take a few months.
You may be asked to see other people to help you in your situation– these could be, for example:
• A dietician – to help you with appetite and your weight
• A social worker – to help with housing, benefits, day to day care
• A psychiatrist or Community Psychiatric Nurse – to help with low mood or depression.
Treatment can last for 6 -12 months depending on the type of hepatitis C you have.
You will take tablets by mouth every day and weekly injections, which you can learn to give yourself.
You will go back to the clinic regularly for check-ups to see how your treatment is going.
A few people may have treatment stopped early if the treatment is not working for them.
If you have any side effects, the clinic will be able to help with these.
At the end of treatment you need to go back after 6 months to make sure
that the virus is still gone from your system and you are ‘cleared’.
Some people will still have the virus in their blood stream and
will need to continue going to the clinic to keep an eye on their liver.
All the time before, during and after treatment, you must protect yourself against hepatitis C.
Even after successful treatment you could catch hepatitis C again if you put yourself at risk.
If you have cleared the virus at your 6 month check you will be discharged from the clinic unless
you have other damage to your liver.
If you have not cleared the virus or have signs of liver damage you will be offered ongoing checks
to keep an eye on you and to discuss other treatments.
If you started going to the hospital for your hepatitis C and missed some appointments you can be
referred back again for treatment. Your doctor or nurse may discuss with you if you have any
problems that make going for treatment difficult and help you to deal with these before referring you
back to the clinic
APPENDIX F:
SAFER SEX AND BLOOD BORNE VIRUSES (BBVs)
LEAFLET
See the next page for the leaflet
The leaflet can be printed and given to patients.
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APPENDIX G:
INJECTING DRUG USE AND BLOOD BORNE VIRUSES
LEAFLET
See the next page for the leaflet
The leaflet can be printed and given to patients.
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APPENDIX H: HCV TESTING FLOW CHART