Download 07 03 21 Look Back Completion QA FINAL PUBLIC

National Public Health Service for Wales
Look Back Completion Questions and Answers
Gwynedd Lookback completion
Frequently asked Questions and Answers
The Lookback
What is a lookback?
If a healthcare worker is diagnosed with specific notifiable communicable
disease/s the NHS will, where appropriate, organise a Look Back of all his/her
patients, contacting them to inform them of the risk and to offer advice and
and testing.
What is the lookback in this incident about?
A healthcare worker in Gwynedd had been diagnosed to have carried
hepatitis C. A lookback was organised for the patients with whom the
healthcare worker has had contact.
If the healthcare worker was diagnosed to have carried hepatitis C, why
did you also look for hepatitis B and HIV?
As part of its work to assess the risk involved, the management team set up to
manage the lookback examined carefully the infection control procedures and
records of the healthcare worker.
This raised concerns and the incident management team sought advice from
the United Kingdom Advisory Panel for Blood Boren Viruses (UKAP).
On the basis of the concerns raised, the Panel advised that there was a very
low risk of hepatitis B or HIV being passed on from one patient to another in
the healthcare setting. The NHS therefore also offered patients advice,
support and an opportunity to be tested for hepatitis B and HIV as well.
The healthcare worker does not have hepatitis B or HIV.
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What did the NHS do about this?
Officers of the Gwynedd LHB and the National Public Health Service for
Wales met immediately on being notified of the healthcare worker’s diagnosis.
The Incident Management Team was then convened in October 2005. It has
met regularly since.
Staff examined more than 5,000 patient records, checking the details on each,
so that they could make contact with all the healthcare worker’s patients to
explain the situation and offer a blood test.
An advice line was set up to provide advice and support and to book
appointments at a clinic for a blood test. The same line also provided negative
test results to patients.
Clinics were set up in North Wales and for patients further afield. GPs were
contacted and asked to arrange tests. In total, 2,665 patients were tested.
Epidemiological studies and further blood testing were then organised to see
if the cases of hepatitis C found were beyond what would have been expected
in a population of this size and whether the individuals concerned had other
circumstances which could have explained their infection.
This was an enormous piece of work involving more than 100 NHS staff. It
was also a sensitive piece of work balancing the healthcare worker’s right to
confidentiality with the health needs of his/her patients.
The healthcare worker has not practised since the notification of infection so
there was no additional risk at all to patients while the Incident Management
Team was working.
If the NHS knew about this in 2005 why did it take until the end of May
2006 for patients to be told?
The NHS timeline for action was as follows:
2005
3rd October
Gwynedd Local Health Board and the National
Public Health Service for Wales (NPHS) were
notified of the healthcare worker being diagnosed
with hepatitis C.
3rd October
The healthcare worker stopped working.
5th October
The first Incident Management Team meeting was
held. At this meeting, the need for further advice
was discussed.
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21st October
Following further consideration, the Incident
Management Team wrote to the United Kingdom
Advisory Panel (UKAP) for Blood Borne Viruses
formally seeking advice on action to take.
14th December
UKAP responded to the Incident Management
Team’s letter.
21st December
The UKAP letter was received. It advised that the
Incident Management Team should conduct a
lookback of the healthcare worker’s patients.
29th December
A meeting of the Incident Management Team was
held and formally agreed to conduct the lookback
2006
11th January
The Incident Management Team formally wrote to
the healthcare worker requesting all patient notes.
8th March
After ongoing discussions a second formal request
for the patient notes was sent.
22nd March
The first set of patient notes was received by the
Incident Management Team.
6th April
The final set of patient notes was received from
the healthcare worker.
10th May
BBC Wales contacted the LHB and NPHS with
information on the lookback.
13th May
Despite representations about the public concern
that would be generated, BBC Wales broadcasts
news of the lookback.
24th May
Letter received from UKAP advising that the
lookback should cover hepatitis B and HIV as well
as hepatitis C.
26th May
Gwynedd LHB asks the Healthcare Inspectorate
Wales to investigate the response of health
authorities to concerns raised with them in the
past.
30th – 31st May
Letters sent to patients notifying them of the risk
and offering advice, support and a blood test.
5th June
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First of the clinics to be held to take blood tests.
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Look Back Completion Questions and Answers
Last of the clinics to be held to take blood tests.
2007
8th February
Incident Management Team agrees conclusions of
the lookback and agrees to write to UKAP.
8th March
The Incident Management Team received a letter
from UKAP to confirm that no further action is
needed
20th March
Incident Management Team writes to healthcare
worker’s patients
The lookback completion
Can you be certain that the healthcare worker did not infect patients or
that patients did not infect others in the healthcare worker’s setting?
There is no evidence of any patients being infected by the Gwynedd
healthcare worker. We have shared our findings with national experts at the
UK Advisory Panel for blood-borne viruses. They agree that there is no
evidence to justify any further action.
It is very difficult to prove a negative so it is impossible to be absolutely
certain.
How can it be assumed that because people had other risk factors they
did not get hepatitis C from the healthcare worker?
All the evidence points to there being no causal connection between people
with hepatitis C and the healthcare worker:



The numbers of people infected is not higher than we would expect in a
population of this size
None of the patients where we were able to carry out further testing
had the same type of hepatitis C as the healthcare worker
Detailed interviewing showed that other risks were much more likely to
have been the cause of infection. For example we know from
experience and research studies that intravenous drug use is high risk
and that exposure to a healthcare worker is low risk.
Why has it taken so long to reach a conclusion to this lookback?
A lookback of this magnitude takes time. The investigation involved patient
identification, tracing patients resident in Wales and further a field, notifying
GPs, the setting up of special clinics, operation of a helpline, the testing of
2,665 patients, the laboratory work to analyse the tests, and the enhanced
work involved in the further testing of specimens and the undertaking of the
epidemiological study.
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There were a number of parts of the investigation where the Incident
Management Team could not control timescales: for example, the time
needed by the United Kingdom Advisory Panel to consider issues and the
availability of patients to take up tests and invitations for interview.
What about the large number of patients who did not come forward for
testing? Surely you haven’t tested enough patients to be sure of the
conclusions?
The number of patients tested - 2,665 patients – is very substantial. It is very
reasonable to draw conclusions from such a large share of the total.
Every patient identified had an opportunity of a test. It is a personal decision
whether to accept or not.
Can patients still ask for a test even if they haven’t taken up the
previous offer?
Yes. Anyone at anytime who is concerned that they may be at risk of
hepatitis should speak to their GP. However, those who may be concerned
because of this incident should be reassured. The investigation has
concluded that the risk of infection to patients of this healthcare worker is no
higher than the risk to the general population.
What happened to the patient records of those people who say they
were patients of the healthcare worker but were never contacted?
We contacted every patient for whom we had a credible record. There were a
few records which did not have full details.
The healthcare worker said that some old records had been culled. This is
legitimate. Patient records so not have to be passed on when a patient moves
to a new healthcare worker when a healthcare worker practice closes.
We can reassure those who self-identified that patients of the healthcare
worker are not at any greater risk of infection than the wider population.
Do you think the self identifiers were treated fairly?
There are some people who identified themselves as patients for whom we
did not have a credible record. The Incident Management Team decided that
the results of the Look Back should be assessed before deciding whether
these people should be offered a test.
At all times, we considered carefully the actions which we took. We clearly
stated at the beginning that we would review the investigation once we found
out more about the level of risk to the public. We wrote to everyone who
contacted us to explain this.
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We have now completed the investigation, and no evidence has been found
that these patients were at an increased risk. There is no need for further
investigation. We can reassure those who self-identified that patients of the
healthcare worker are not at any greater risk of infection than the wider
population.
The Incident Management Team report
Given the conclusions can the action and expense of the lookback be
justified?
Given the information available to the Incident Management Team at the start,
the lookback was justified. There was a healthcare worker who had hepatitis
C. The healthcare worker practised exposure prone procedures where blood
to blood contact was a risk. Added to this, there were documented concerns
about the healthcare worker’s infection control practices.
These facts indicated that there was a very small risk of infection to patients.
We emphasised at the time that there was no evidence of a patient being
infected by the healthcare worker. However, we had reason to look for
evidence, as a precaution.
The Incident Management Team took advice from UK experts before going
ahead.
If we had known then what we know now, the lookback would not have been
started. However, we only know what we know because of the action taken.
Can such an incident be prevented from ever happening again?
It is in fact very rare for a healthcare worker to have hepatitis C. The
screening of new staff who undertake procedures prone to exposure to blood
and rigorous infection control procedures across the NHS reduce the risk of
infection so that it is very small indeed.
Procedures worked well in this case in relation to the diagnosis of hepatitis C
in the healthcare worker. The healthcare worker then stopped work
immediately. The National Public Health Service for Wales was notified
immediately. The public health response was also immediate.
However, given the nature of the disease – people can have it for years
without realising – and the number of people who use health services, it is
impossible to say that such incidents will never happen again.
What are the recommendations made as a result of the lookback?/ What
have you learnt from the lookback?
There are two principal public health issues raised by the lookback.
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There are issues around the inspection and regulation of healthcare workers
in private practice and around the occupational health services available to
such workers. In both cases there are gaps in the system which leave certain
types of private healthcare beyond inspection and regulation and where there
is no support to certain types of healthcare worker.
The Incident Management Team has recommended that the Assembly should
review these issues. In the case of inspection, this is already being
considered.
The report also provides a record which should be useful to the organisation
of lookbacks in future. The National Public Health Service for Wales and
Gwynedd LHB have learnt from the investigation so that operational
procedures can be improved in future and appropriate resources allocated.
While these lessons will help the organisations involved there would be little
discernable difference to the decisions and actions taken or to the outcomes
of any investigation.
Do you think healthcare workers should be better regulated?
The lookback has identified an issue in relation to the lack of inspection and
regulation relating to some healthcare workers working in private practice.
In this case, infection control concerns had been raised with a healthcare
worker but the concerns could not be followed through after all NHS work was
dropped. There is no inspection regime for the healthcare worker because it is
a private practice.
Are occupational health arrangements for staff stringent enough in the
NHS?
Occupational health arrangements are in place in the NHS and this lookback
has not identified any issues for the NHS.
However, some healthcare workers working in private practice fall outside the
inspection and regulatory systems in place for their equivalents working in the
NHS. This is an anomaly and, more importantly, a matter of public health
concern. It needs to be addressed by Government and, in fact, is already
under consideration.
What actions should the Welsh Assembly Government consider as a
result of the lookback?
We have recommended that the Welsh Assembly Government should
consider the Incident Management Team’s report in full. In particular there are
issues around the inspection and regulation of healthcare workers in private
practice and around the occupational health services available to such
workers.
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The Welsh Assembly Government and the National Assembly is already
considering matters of inspection which we welcome.
The Healthcare Inspectorate Wales report
What has happened to the Healthcare Inspectorate Wales report?
Healthcare Inspectorate Wales have completed their investigations and are
currently drafting a report for publication.
The healthcare worker
Who is the healthcare worker, where did they work, what type of work
did they do and how long have they been working?
The healthcare worker has the same rights to confidentiality as any patient
seeking or receiving medical treatment. No personal information will be
provided that might lead to the deductive disclosure of his/her identity.
The NHS worked hard to identify all those patients that might have been put
at risk of infection and every effort was made to contact both them and their
GPs.
The conclusions of the lookback support the need to have maintained
confidentiality for the healthcare worker. The work has been completed
successfully without the investigation team disclosing the name or the
profession of the healthcare worker.
How did the healthcare worker become infected?
This information is not known. Many people with hepatitis C do not know how
they were infected.
When did the healthcare worker become infected?
It is not always possible to tell when a patient with hepatitis C became
infected. However as soon as the infection was diagnosed, the healthcare
worker stopped working.
How was the healthcare worker diagnosed?
The healthcare worker took a test voluntarily.
What is the risk to the healthcare worker’s patients?
Advice from national experts was that the risk of passing on the hepatitis C
virus was very low indeed. It could only happen if the healthcare worker’s
blood got into the patient’s bloodstream.
The risk of patients getting hepatitis B or HIV in this healthcare setting were
even smaller. It could only have happened if the blood of one patient got into
the bloodstream of another patient.
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There is no evidence to suggest that any individual has suffered ill health as a
consequence of having care provided by the healthcare worker.
The contact programme was undertaken on a precautionary basis. As a
precaution, we offered patients who had been cared for by the healthcare
worker the opportunity to have a blood test for hepatitis C, hepatitis B and
HIV.
Why was this individual not screened before working in the health care
setting?/ How can someone with hepatitis C be allowed to work in a
health care setting?
Hepatitis C testing of most health care workers is unnecessary as they do not
carry out exposure prone procedures (EPPs) that pose a risk of infection to
patients. The Advisory Group on hepatitis has advised the Department of
Health that the low risk of transmission does not warrant testing all health care
workers who carry out EPPs.
In line with current guidance from the Department of Health and their
professional duty of care, healthcare workers who perform EPPs and who
believe that they may have been exposed to infection should promptly seek
testing for hepatitis C. If they are found to be positive then as a precautionary
measure they do not carry out EPPs.
Was the healthcare worker allowed to continue working after they
contracted hepatitis C, and if so, why?
The healthcare worker stopped working as soon as s/he became aware of the
infection.
Most people who are infected with Hepatitis C often have no idea that they
have caught it and will not have any symptoms at all.
Did you contact all settings at which the healthcare worker was
employed?
Considerable efforts were made to establish the healthcare worker’s full
employment history.
If there were concerns about the healthcare worker’s infection control
procedures before, why was the healthcare worker allowed to continue
working?
It is apparent from NHS records that concerns about infection control
procedures had been raised with health authorities in the past.
As a result, Gwynedd Local Health Board asked the Healthcare Inspectorate
Wales to investigate the response by the NHS and other bodies to the
concerns raised and how these were handled.
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Contacting patients
If the personal details of the healthcare worker weren’t available, then
how could someone find out if they had been affected?
Gwynedd Local Health Board and the National Public Health Service for
Wales made great efforts to ensure that everyone who may have been put at
risk of infection was identified via their patient notes, so that they could be
contacted and offered testing and support.
We have a duty of confidentiality to the health care worker and we contacted
patients potentially at risk without compromising that confidentiality.
How were patients contacted to be informed of the risk?
Patients were identified from the healthcare worker’s patient notes. They were
sent a letter on Tuesday 30th and Wednesday 31st May 2006. The letter
explained the low level of risk and provided a special helpline number for
advice, support and to book an appointment for a blood test.
Children and some patients – where their GP advised us to do so – were
contacted directly in person by a member of NHS staff.
Are you confident that you contacted all patients that may have been at
risk?
The Local Health Board (LHB) and National Public Health Service for Wales
(NPHS) meticulously checked individual patient records to try to identify
everyone who had been treated by the health care worker and may have
been at risk of infection.
There are some people who contacted the NHS because they believed that
they were also patients of the healthcare worker even though the NHS did not
have records for them.
When these people contacted us, we explained that we would not be offering
them blood tests. We emphasised that there was no evidence of anyone
being infected by the healthcare worker or in the healthcare worker’s place of
work. We wanted to analyse the results of the Look Back to see if there was
evidence pointing to heightened risk which would justify contacting others and
breaking the healthcare worker’s confidentiality.
How many patients were contacted?
Letters were sent out to approximately 4,786 people.
Advice, support and a blood test
What were patients asked to do?
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Having received a letter from Gwynedd Local Health Board, patients could
ring the special helpline number, set up just for them.
Lines were open:
Monday – Friday
Saturday – Sunday
7am – 8pm
7am – 4pm
When patients rang this number and provided their contact details and the
special identification number at the top of their letter, they were able to speak
to a trained health information officer to discuss the option of receiving pretest counselling and a blood test.
What was the process for offering testing to exposed patients?
The staff on the helpline offered advice and pre-test counselling and assisted
in making arrangements for testing.
How long did patients wait to be tested?
Patients in the South Gwynedd area were invited to attend especially
arranged local clinics set up by the NHS. There were 47 clinics set up in the
morning, afternoon and evenings and at weekends.
(Due to the volume of patients, GPs were not able to do blood tests in South
Gwynedd.)
Patients from other areas of North Wales, or elsewhere in Gwynedd were able
to arrange their blood tests via their GP. However they were also able to
attend one of the clinics if they wished to do so.
The appointments were co-ordinated through the special Help Line. It took six
weeks to complete the clinics. There were a small number of patients coming
forward for tests several months later
How were patients informed of the result?
The results were available in three weeks after the test. The patients received
the results of the blood test by telephone using their name and special
identification number on the assumption that they did not have the infection. A
copy of the results were sent to the patient’s GP unless a patient specifically
requested otherwise.
How were patients informed of positive results?
Patients with positive results were contacted individually by their GP to
arrange for them to have further tests. Patients were offered assessment,
advice and support for a specialist team.
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Advice for pregnant women
Should pregnant women be concerned?
All pregnant women are routinely offered a HIV test and a hepatitis B test as
part of the antenatal screening programme – this has been UK policy since
2000.
There is no evidence of any patient acquiring any of the viruses in the
healthcare worker’s place of work.
Advice for women who are breast feeding
Should women who have been patients of the healthcare worker
continue to breast feed?
There is no evidence of any patient acquiring any of the viruses in the
healthcare worker’s place of work so we strongly recommend that all women
continue to breastfeed.
Advice on sexual relationships
Should patients abstain from sex?
There is no need for any patient of the healthcare worker to abstain from
sexual intercourse..
General advice on safe sex applies here as with the wider population.
Insurance, mortgages and employment
Would the offer of a test affect a patient’s insurance or mortgage?
Since publication of the first version of the Association of British Insurers
Statement of Best Practice on Underwriting Life Insurance for HIV in July
1994, insurers have not asked whether an applicant has undergone
counselling about HIV, or have taken an HIV test. Instead, insurers have been
expected only to ask whether the applicant has tested positive for HIV, or was
awaiting the results of an HIV test.
If the result is negative, the fact of having an HIV test will not, of itself, have
any effect on your acceptance terms for insurance
The Association of British Insurers (www.abi.org.uk) advises that insurance
companies will not ask whether an applicant for life or health protection
insurance has taken a Hepatitis C test, had counselling in connection with
such test or received a negative test result. Insurers have been expected only
to ask whether the applicant had tested positive for Hepatitis C, or was
awaiting the results of an Hepatitis C test.
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ABI members are instructed to use the following question: “Have you ever
tested positive for HIV, Hepatitis B or C or are you awaiting the results of such
a test? Note: If the result is negative, the fact of having a Hepatitis C test will
not, of itself, have any effect on your acceptance terms for insurance.”
Would the offer of a test affect a patient’s employment?
There is no need to tell your employer that you have had these tests as part of
a look back.
Patients who had a positive test result were advised what if anything their
employer needs to know. Outside the medical/dental profession individuals
would not normally impart this information to their employer.
Hepatitis C
What is hepatitis C?
Hepatitis C infection is a virus that can cause long-lasting infection and can
lead to liver disease.
What are the symptoms of hepatitis C?
Hepatitis C infection affects different people in different ways; many
experience no symptoms at all while others experience extreme tiredness and
can feel very unwell. Reported symptoms include fatigue, weight loss,
nausea, 'flu like symptoms, problems concentrating, abdominal pain and
jaundice.
It is estimated that around 15-30% of infected people clear their infections
naturally within the first 6 months of infection. For the remainder, hepatitis C is
a chronic infection that can span several decades and can be life-long.
Diagnosis is made by a blood test. As many people do not have any
symptoms, it is important to have a blood test if you feel you have been put at
risk.
How common is hepatitis C?
Hepatitis C is a rare infection – there is an estimated 1 in 200 people carrying
this virus in Wales.
How do you catch hepatitis C?
Infection occurs through:
 Infected
blood entering the bloodstream of another person
sex with an infected person although this is extremely rare
 The virus can pass from an infected mother to child during pregnancy, when
giving birth or after birth (6% risk).
 Unprotected
Hepatitis C is an occupational hazard in the dental and medical professions.
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How long does it take to become ill?
It takes between 6 weeks and 6 months to show that the virus is present from
when it was picked up, although it is usually many years before symptoms
develop.
Is there treatment available?
There is no vaccination available to prevent hepatitis C. There is effective
treatment available to patients with hepatitis C.
What is the long-term outlook for a patient with hepatitis C?
About 70% to 85% of people who acquire infection become chronically
infected. The rest clear the infection spontaneously. Most people who are
chronically infected live out a normal lifespan; others develop symptoms of
chronic liver disease many years after the initial infection; 5-20% may develop
serious liver disease (cirrhosis) after 20 years. A small proportion of these (12%) develop liver cancer.
How is hepatitis C diagnosed?
Hepatitis C antibodies are detected by a blood test. The test, called an antiHCV test, looks for antibodies to Hepatitis C produced by the body’s immune
system in response to the virus. Detecting antibodies to Hepatitis C shows
evidence of exposure to the virus rather than necessarily infection with the
Hepatitis C virus. If someone has a positive antibody test this need not mean
that they are still infected, further tests will then be required.
Hepatitis B
What is hepatitis B?
The hepatitis B virus causes hepatitis (inflammation of the liver) and can also
cause long term liver damage.
What are the symptoms of hepatitis B?
Many people have no symptoms while others experience a flu-like illness
including a sore throat, tiredness, joint pains, and a loss of appetite. Other
symptoms may include nausea and vomiting. Acute infection can be severe
causing abdominal discomfort and jaundice.
90% of people will clear the virus after infection in adult life. For the
remainder, hepatitis B is a chronic infection that can span several decades
and can be life-long.
Diagnosis is made by a blood test. As many people do not have any
symptoms, it is important to have a blood test if you feel you have been put at
risk.
How common is hepatitis B?
It is estimated that in Wales 1 in 300 people have had the virus.
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How do patients get infected?
Infection occurs through:
 Infected
blood entering the bloodstream of another person
sex with an infected person
 Unprotected
The virus can pass from an infected mother to child during pregnancy, when
giving birth or after birth. Since April 2000, all pregnant women in the UK are
offered testing for hepatitis B.
How long does it take to become ill?
Children may often present with no symptoms. Adults who pick up the virus
are usually ill within 6 months.
What is chronic hepatitis B infection?
The failure to clear hepatitis B infection after six months leads to the chronic
carrier state. Many people who become chronic carriers have no symptoms
and are unaware that they are infected. These individuals will remain
infectious and will be at risk of developing cirrhosis and primary liver cancer.
Is there treatment for chronic hepatitis B infection?
There is a vaccination available to prevent people getting hepatitis B.
There is effective treatment available for someone with hepatitis B.
Human Immunodeficiency Virus (HIV)
What is HIV?
HIV stands for Human Immunodeficiency Virus and is a blood borne virus that
attacks the immune system.
How do you catch HIV?
Infection occurs through:
 The
transfer of body fluids (such as blood, semen, fluid from the woman’s
cervix and breast milk) from an infected person to an uninfected person.
 Unprotected sexual intercourse with an infected partner.
The virus can pass from an infected mother to child during pregnancy, when
giving birth or after birth. Since April 2001, all pregnant women in the UK are
offered tested for HIV.
How common is HIV?
This is the least common of these viruses – there is an estimated 1 in 4000
people in Wales being cared for HIV.
What are the symptoms of HIV?
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People with HIV usually have no symptoms for a prolonged period of time,
while the virus acts slowly to weaken the body’s immune system. When a
person’s immune system has been broken down, he or she is susceptible to
other illnesses, especially infections (e.g tuberculosis and pneumonia) and
cancers, many of which are not normally a threat to a healthy person.
How long does it take to become ill?
It takes between 6 weeks and 3 months to show that the virus is present from
when it was picked up, although it is usually many years before symptoms
develop.
How is HIV diagnosed?
Diagnosis is made by a blood test. As many people do not have any
symptoms in the early stages of infection it is important to have a blood test if
you feel you have been put at risk.
Is there any treatment available for HIV infection?
There is effective treatment for HIV.
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Author: Chris Lines and
Teresa Owen
Date: 19 March 2007
Page: - 16 -16
Status: Approved for
publication