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Case for change
TB services in London
September 2011
List of abbreviations
A&E
Accident and Emergency
BCG
Bacille Calmette Guérin vaccine
DH
Department of Health
DOT
Directly observed therapy
ECDC
European Centre for Disease Control
GP
General Practitioner
HIV
Human Immunodeficiency Virus
HPA
Health Protection Agency
HPU
Health Protection Unit
IGRA
Interferon Gamma Release Assay
LTBR
London TB Register
MDR TB
Multi-drug resistant TB
NHS
National Health Service
NICE
National Institute of Clinical Excellence
PCT
Primary Care Trust
TB
Tuberculosis
WHO
World Health Organization
XDR TB
Extensively drug resistant TB
2
Table of contents
List of abbreviations .............................................................................................................. 2
Table of contents ................................................................................................................... 3
Foreword................................................................................................................................. 5
Executive summary ............................................................................................................... 6
1.
Background ............................................................................................................... 8
2.
The extent of TB in London.................................................................................... 10
Place of birth and ethnicity ........................................................................................ 11
Social and medical risk factors for TB ....................................................................... 12
Rates of treatment completion and drug resistant TB ............................................... 12
Latent TB .................................................................................................................. 14
3.
International comparisons ..................................................................................... 16
Western Europe ........................................................................................................ 16
New York .................................................................................................................. 17
4.
Policy overview ....................................................................................................... 20
5.
Patient pathway....................................................................................................... 23
6.
Challenges with current service provision ........................................................... 25
6.1
Delays in detection and referral ...................................................................... 25
Community awareness.................................................................................... 25
Awareness among healthcare professionals ................................................... 26
Screening ........................................................................................................ 26
6.2
Variability of commissioning ............................................................................ 28
Current network arrangements ....................................................................... 28
Investment in specialist non-medical staff ....................................................... 30
Commissioning expertise and financial flexibility ............................................ 32
Accommodation .............................................................................................. 32
6.3
Variability of service provision ......................................................................... 34
Availability of specialist expertise .................................................................... 34
Staffing profiles ............................................................................................... 35
Directly Observed Therapy (DOT)................................................................... 35
Contact tracing ................................................................................................ 36
3
Outreach ......................................................................................................... 36
BCG vaccination ............................................................................................. 36
7.
Potential fragmentation of TB control ................................................................... 38
Health protection services ......................................................................................... 38
Public health services ............................................................................................... 39
Local authorities and the third sector ........................................................................ 39
Risks ........................................................................................................................ 39
8.
9.
Financial considerations ........................................................................................ 41
8.1
Costs of treatment for TB ................................................................................ 41
8.2
Activity and finance data challenges ............................................................... 42
8.3
Financial modelling ......................................................................................... 42
Summary of key points .......................................................................................... 46
APPENDIX A: Summary of progress against London TB Metrics ................................... 48
APPENDIX B: Comparative Financial Modelling ............................................................... 51
APPENDIX C: Membership of the TB Commissioning Board and Clinical Working
Group .................................................................................................................................... 52
4
Foreword
Tuberculosis – TB – is a serious infectious disease that many people associate with past
times. But since the 1980s, it has been making a comeback in London. In 2010 there were
3,302 new cases of TB in the capital, the highest of any major city in Western Europe. This
compares to 2,626 new diagnoses of HIV in London in the same period. Despite the best
efforts of health and social care professionals, the disease is now a major public health
problem for the capital.
This case for change provides a compelling set of arguments for the need to improve the
care of people with TB in London. It sets out our understanding of the problem, describing the
communities that are most at risk of developing TB, how London compares with elsewhere in
the world and what has already been done to tackle the disease.
Although people generally receive high quality care once they know they have TB, too many
people are diagnosed late, when the disease has already begun to cause them damage and
too little is done to support people to complete their treatment, avoiding complications in the
future. More needs to be done to identify those with latent (inactive) infection who are living
with the risk of developing active TB in the future and to offer them treatment to prevent the
disease.
The document describes specific problems with the way services are currently planned,
organised and managed and some concerns about the possible impact on TB control of the
proposed changes to the NHS in England. It also highlights examples of good practice in
London that are helping to keep the disease under control.
The case for change will be followed by a model of care that will set out our proposals to
address the TB problem in London. Our aspiration is to reverse the recent trend and reduce
rates of the disease as quickly as they have been rising.
We would like to thank the many individuals and organisations that helped us develop this
case for change and the model of care that will follow it. The members of the clinical working
group and TB commissioning board are shown at the end of the document. Details of the
many other health and social care professionals, service users and third sector partners who
contributed can be found at www.londonhp.nhs.uk/tuberculosis.
Nick Relph
Chief Executive
Outer NW London Cluster
and
Senior Responsible Officer
London TB Project
Dr William Lynn
Consultant in Infectious Diseases
Ealing Hospital NHS Trust
and
Clinical Lead
London TB Project
5
Executive summary
Tuberculosis (TB) is an infectious disease that is treatable and curable, however it remains a
major public health issue for London. The number of TB cases has increased by nearly 50%
over the last ten years and as a result, London now has the highest rate of TB of any capital
city in Western Europe. The current rate of 43 per 100,000 population exceeds the level
considered high by the World Health Organisation (WHO). In some parts of London, the rate
has been more than double this for over ten years.
The groups that account for the majority of TB in London are those born overseas and those
with social risk factors. People born in countries where the disease is more prevalent account
for 84% of new cases of TB in London. The majority develop active disease several years
after their arrival in the country, making port of entry screening ineffective. TB is also more
common amongst people with social risk factors, particularly homelessness and drug and
alcohol dependency, because of their tendency to poor immune status and increased risk of
exposure to infection. It is important to note that around 80% of people who develop active
TB do so as a result of the reactivation of latent TB (TB acquired earlier in life which remains
dormant for months or years), rather than through transmission from a person with active
disease.
The escalating burden of TB in London is set against a background of national guidance and
policy. Implementation of some of these measures has contributed to stabilising the rate of
TB but has failed to reverse the upward trend. Application of national guidance has been
inconsistent in some parts of London. There is currently no systematic approach to detecting
and treating latent TB.
The effective detection and treatment of TB will reduce the human and financial burden of
disease as well as minimising the risk of ongoing transmission. Active TB is relatively
inexpensive and straightforward to treat and cure if identified early. But some people become
permanently disabled, particularly from brain or spinal disease and about 300 people a year
still die from TB. The disease has a real, although poorly quantified, impact on family life,
employment and educational attainment for those affected.
Awareness of the disease and its symptoms in the general community is poor. Additionally, in
high risk communities the presentation of symptoms may be delayed due to the stigma
associated with TB. For first line clinicians, TB can be difficult to diagnose and symptoms
easily overlooked. Awareness of the complex relationship between multi-faceted symptoms,
incidence of the disease in a community, an individual’s circumstance, and any one of a
number of social risk factors is critical in considering a TB diagnosis. Furthermore, the
inconsistent application of screening guidance across London for detecting TB does not
produce significant yield in terms of numbers of cases identified.
Successful therapy requires adherence to a complex drug regimen over a minimum of six
months. If treatment is not taken correctly, or is stopped, there is a higher risk of
complications and/or the development of drug resistant TB, which has been identified by
WHO as a major threat to global public health. Drug resistant TB is associated with a
substantial increase in morbidity and mortality as well as being a considerably more
resource-intensive treatment, potentially costing twenty times more than early intervention.
While treatment completion rates have improved as a whole across London, they vary
considerably across boroughs representing a clear opportunity for improvement.
Five TB networks currently manage local service planning, development and protocols for TB
across the capital – each in different ways. Commissioning for TB services is not always
proactive in parts of London as other healthcare issues often take priority. Differences exist in
funding arrangements across the networks with some commissioners paying separately for
6
services that are included in national tariff elsewhere. While metrics have been developed for
TB and are regularly reviewed, active performance management is not comprehensive
across the city.
The provision of TB services in many parts of London is the result of organic development
rather than a planned response to an increasing problem. Staffing mix and grading is notably
different across providers and does not necessarily correspond with the incidence of the
disease. Specialist expertise of complex cases tends to be focused in a few large hospitals
and although there are network arrangements in each sector to share learning, there is no
systematic process in place to ensure patients treated in smaller centres always have access
to the appropriate level of expertise. Good practice exists, particularly in relation to the use of
directly observed therapy and tracing contacts to prevent onward transmission, but it is not
systematically adopted across the city. Vaccination guidance for TB currently targets children
at risk of exposure, however uptake and the process for giving the vaccination is variable.
There is a risk that the control of TB will become more fragmented as the responsibilities for
protecting health and procuring services move into new and disparate organisations, most of
which will be unable to take a pan-London strategic view of the disease.
There are opportunities for London to improve its response to TB and reduce the incidence of
the disease. The existing TB service model in London has not impacted on the rates of TB
and the capital can learn from models of good practice internationally where cities have been
proactive in managing escalation of TB and have had significant successes. Both in New
York and European cities, a coordinated, focused, multi-agency approach to tackling TB has
led to a dramatic reduction in the TB rate.
This document sets out the case for change in more detail and will be followed by a proposed
model of care which will set out how services can be improved to achieve the goal of
achieving a sustained reduction in TB across London.
7
1.
Background
Tuberculosis (TB) is an infectious disease caused by the Mycobacterium tuberculosis
complex group of bacteria. It can affect almost any organ in the body. It is estimated that
globally, almost two billion people have been infected and around nine million develop
symptomatic disease each year. TB kills 1.5 million people each year.
TB is transmitted from person to person through the air. The bacteria are inhaled and pass
from the lungs to other parts of the body via the blood stream, airways or lymphatic system.
Pulmonary TB is the most common form of the disease – occurring in about 80% of cases
globally1. Extra-pulmonary TB affects organs other than the lungs, most frequently the lymph
nodes, pleura, bones (including the spine) and central nervous system. This form of disease
is not usually infectious.
The majority of people (about 90%) who become infected with TB bacteria experience no
symptoms and do not pass the disease on to others. This is known as latent TB or latent TB
infection. For most, the micro-organisms remain dormant in their body throughout their lives
but for some, there is a chance they may subsequently develop symptomatic, active TB
disease.
It is currently impossible to predict which individuals with infection will go on to develop active
clinical disease, although the risk is higher in those with suppressed immune systems,
children2 and in the first five years after initial infection3. Estimates of the rate of progression
from latent to active TB vary from 5% to 15%, but 10% is the figure adopted by the National
Institute for Health and Clinical Excellence (NICE).
Clinically, latent TB is defined as occurring when an individual is well, has a chest X-ray that
does not suggest active TB disease, but a positive test for TB indicating previous infection.
The traditional method used for this is the tuberculin skin test (TST), also called a Mantoux
test. More recently, blood tests have been introduced (Interferon gamma release assays,
IGRA). In March 2011, NICE reviewed the evidence on the newer tests and updated its
guidelines on diagnosing latent TB infection4.
If active TB is diagnosed at an early stage of disease, it is curable in around 95% of cases.
Treatment comprises multiple anti-TB drugs for a period of at least six months. Treatment for
TB carries the risk of unpleasant adverse effects. These, plus the long period of treatment
needed for cure, mean that people may not complete their planned therapy. Unfortunately, if
the treatment is not taken as prescribed or the treatment regimen fails to take account of
previous incomplete treatment, the patient is at risk of developing drug resistant TB. The
treatment of drug resistant TB is more likely to result in yet more side effects and a worse
outcome (including untreatable disease and death).
Drug resistant TB is also considerably more expensive to diagnose and treat. The cost of
second line drugs required for treatment is high, additional clinical input is required and
treatment takes much longer to complete, often with a reduced chance of cure.
1
Ait-Khaled N, Alarcon E et al. International Union Against Tuberculosis and Lung Disease, Management of
Tuberculosis: A Guide to the Essentials of Good Practice. Paris. 2010
2 Lalvani A. Diagnosing Tuberculosis Infection in the 21 st Century: New Tools to Tackle an Old Enemy. Chest
2007. 131.1898-1906
3 WHO. Global tuberculosis control – epidemiology, strategy, financing. 2009
4 National Institute for Health and Clinical Excellence. Clinical guideline 117. Tuberculosis clinical diagnosis and
management of tuberculosis, and measures for its prevention and control. March 2011.
8
The cost to commissioners of treating drug sensitive TB can be as low as £1,100, based on
one new outpatient appointment and seven follow-up appointments. Even in the minority of
cases where a brief admission is required, the cost will not exceed £4,000 (based on HRG
DZ14B). In contrast, the cost of treating multi-drug resistant (MDR) TB typically exceeds
£18,500, based on one admission (HRG DZ51Z), one new outpatient appointment and about
20 follow-up appointments5.
The costs do not take into account the assessment and management of onward transmission
of infection from the index case to others. The contact tracing performed has a reasonable
yield, such that 10% of those investigated will have latent TB infection and 1% active TB
requiring treatment.
The longer an individual is untreated, the longer they are infectious and hence able to pass
on tuberculosis to others. Further, if diagnosis is delayed, TB can cause irreparable damage
to whichever part of the body is affected. In pulmonary TB, this can lead to lung destruction,
scarring and chronic infection (bronchiectasis) with other bacteria and fungi. Major surgery
can be required, and over the longer term, the patient may develop respiratory failure. In
extra-pulmonary TB, the effects can be wide-ranging, including stroke, spinal collapse (with
spinal cord compression) and skin disfigurement. Around one third of individuals with spinal
TB have chronic back pain after treatment and a number are left paralysed requiring life-long
care with costs not only to health care but also to social care.
In the UK, the numbers of deaths from TB have fluctuated over the last decade, peaking at 394 in 2003
and dropping to 300 in 2007. The most recent data from 2008 shows this figure climbing to 334
premature deaths from TB6. A significant number of these deaths are avoidable through improved
early diagnosis and adequate support to complete treatment.
5
These costs are exclusive of market forces factor and based on clinical advice regarding the HRG4 coding
and number of outpatient appointments required.
6 Office of National Statistics. TB mortality data showing numbers and rates of TB deaths in England & Wales
from 1913-2008. Prepared by TB Section, Health Protection Services Colindale.
9
2.
The extent of TB in London
The World Health Organisation defines a TB rate of 40 per 100,000 population as high 7. The
rate in London has exceeded this since the early 2000s, rising by almost 50% between 1999
and 2009. In 2010, the rate of TB in London was 42.6 per 100,0008.
Figure 1 – TB rates in London, 1982-2010
Around 9,000 TB notifications are reported in the UK each year9. These are concentrated in
the major cities with London accounting for about 40% of all TB notifications.
Figure 2 – Number of TB notifications in UK major cities, 2009
3440
3500
3000
2500
2000
1500
1000
124
212
196
80
Sheffield
213
Manchester
399
Leicester City
500
Leeds
Number of TB notifications
4000
0
London
Glasgow
Birmingham
UK City
Data courtesy of HPA
7
Tuberculosis in the UK: Annual report on tuberculosis surveillance in the UK. London: Health Protection
Agency Centre for Infections. October 2010
8 Annual Report on Tuberculosis surveillance in London, 2010. Health Protection Agency
9 Health Protection Agency Centre for Infections. Tuberculosis case reports and rates by country, UK, 20002009. Health Protection Agency website
10
TB cases are widely distributed across London. Healthcare services in all parts of the capital
encounter TB on a regular basis (Figure 3).
Figure 3 – TB rates by primary care trust of residence, 2010
Enfield
Barnet
Harrow
Haringey
Waltham
Forest
Redbridge
Havering
Hillingdon
Brent
City &
Hackney
Camden
Islington
Westminster
Kensington &
Chelsea
Ealing
Tower
Hamlets
Barking &
Dagenham
Newham
Southwark
Greenwich
Hammersmith
& Fulham
Hounslow
Lambeth
Richmond &
Twickenham
Bexley
Wandsworth
Lewisham
TB rate /100,000
population
Kingston
Sutton &
Merton
Bromley
Croydon
≥80
60-79
40-59
20-39
<20
Source: London Regional Epidemiologist, HPA
Although the most recent figures show 13 boroughs with rates above 40 per 100,000, the
distribution varies from year to year. Twenty-one boroughs have experienced rates above
this level at some point in the last five years. The rates in Brent and Newham have exceeded
80 per 100,000 for the last ten years and continue to rise.
Place of birth and ethnicity
There is a particularly heavy burden of disease among people born outside the UK. This
group accounts for 84% of TB notifications in London and comprises predominantly those of
Indian or black African ethnicity (Figure 4).
Figure 4 – TB notifications and rates by place of birth, London, 2004 – 2010
11
120
2500
100
2000
80
1500
60
1000
40
500
20
0
Rate (per 100,000)
Number of cases
3000
0
2004
2005
UK born (n)
2006
Non-UK born (n)
2007
2008
UK born (rate)
2009
2010
Non-UK born (rate)
The majority develop symptomatic, active disease several years after their arrival in the UK.
Over 80% of people had lived in the UK for two or more years prior to diagnosis and a third
for ten or more years. Studies suggest that most cases arise from latent TB infection picked
up outside of the UK10. It is unclear how much TB arises from people travelling to TB
endemic areas, or through extended contact with people from high incidence countries in the
UK.
Social and medical risk factors for TB
Anyone can develop TB, although certain groups are at greater risk due to lifestyle or poor
immunity. Problem drug or alcohol use, homelessness (and insecure housing tenure),
imprisonment and mental health issues are common factors in around 12% of cases of TB in
London11. They are an important population to consider as they are less likely to access
healthcare with minor symptoms, consequently presenting late to medical services with
worse disease. This means that they are both infectious to others for longer periods
(pulmonary TB is more often present in those with social and medical risk factors than in the
general population) and have worse treatment outcomes12. Furthermore, they have higher
rates of drug resistant disease, and their contacts are more difficult to trace and screen for
possible acquired infection.
Rates of treatment completion and drug resistant TB
In 2010, the proportion of TB cases successfully completing treatment within 12 months in
London was 86.6%, just above the 85% target set by the Chief Medical Officer for England,
based on the WHO target. However, as the graph on the following page shows, treatment
completion rates vary considerably across the PCTs, with several below the target rate.
Figure 5 – Treatment completion rates by PCT, 2010
10
Love J, Sonnenberg P, Glynn JR et al. Molecular epidemiology of tuberculosis in England. International
Journal of Tuberculosis and Lung Disease vol.13 (2), 201-201.1998.
11 Health Protection Agency London Regional Epidemiology Unit. Annual report on tuberculosis surveillance in
London. London; 2009.
12 Public Health Action Support Team. London TB Service Review and Health Needs Assessment. September
2010.
12
95%
90%
85%
80%
75%
70%
North Central
North East
North West
South East
South West
Treatment completion is of paramount importance both to avoid the development of drug
resistant TB (and the significant additional costs of treating it) and to prevent onward
transmission of the disease.
Compared to the UK, London TB patients have a higher level of drug resistance with a higher
proportion still on treatment after 12 months. Drug resistance continues to be problematic
with the proportion of drug resistant cases increasing from approximately 8% in 2008 to just
over 10% in 2010 (Figure 6).
Figure 6 – Drug resistance rates in London, 1999-2009
People who are immunocompromised are at increased risk of latent TB progressing to active
TB – in particular, those with HIV, chronic kidney disease, diabetes, and who are being
13
treated with immunosuppressive drugs. Around 2-10% of TB cases in the UK are people who
are co-infected with HIV13. Their risk of progressing to active disease is estimated to be
around 20 times that of the general population.
London has high numbers of people with each of these risk factors and although they
represent a relatively small proportion of the total TB cases, they have a disproportionate
impact on transmission and TB control.
Latent TB
The number of people in London with latent (asymptomatic) TB is unknown. Not everyone
with latent TB will become unwell. However it is estimated that approximately 80% of active
TB cases in London arise from individuals with long-standing latent TB. There is no
systematic approach to identifying people with latent TB in London.
Until recently the standard test for latent TB infection was the tuberculin skin test (the
Mantoux test). This had a number of operational disadvantages associated with its use, not
least of which was the requirement for individuals to return to have the skin test reaction
interpreted after 2-3 days. IGRA blood tests often require just a single visit. Recent NICE
guidelines14 recommend the use of IGRA to test for latent TB infection in the following cases:

In an outbreak situation when large numbers of individuals may need to be screened (for
people aged over five years)

New entrants from high incidence countries who are aged16 to 35 years old

People who are immunocompromised and most people with HIV

New NHS employees who have recently arrived from high incidence countries or who
have had contact with patients in a setting where TB is highly prevalent

People from hard-to-reach groups
Reports from clinical teams suggest that implementation of the guidelines is patchy and
uncoordinated across London. This is also supported by evidence from a recent review of
services that found the number of cases receiving treatment for latent TB infection did not
correlate with the number of contacts or new entrants screened, suggesting different
practices in contact tracing and new entrant screening.
Uncertainty about the cost effectiveness of IGRA and the lack of a strategic approach are
often cited as contributory factors to differences in the management of latent TB. The
updated NICE guidance does, however, advocate screening for latent TB and recent
research has offered more information about the cost effectiveness of such an approach 15.
The prophylactic treatment of latent TB infection prevents the development of active TB.
Without treatment, people with latent TB have a lifetime risk of developing active disease and
about 10% do so. Preventative treatment can have adverse side effects and may be highly
toxic to the liver depending on the dosage and duration of treatment. Therefore, the decision
whether to treat is not straightforward and requires consideration of the risks and careful
13
Ahmed AB, Abubakar I et al. The growing impact of HIV infection on the epidemiology of tuberculosis in
England and Wales. Thorax,62(8):672-6. 2007
14 National Institute for Health and Clinical Excellence. Clinical guideline 117. Tuberculosis clinical diagnosis and
management of tuberculosis, and measures for its prevention and control. March 2011.
15 Pareek et al. Screening of immigrants in the UK for imported latent tuberculosis: a multicentre cohort study
and cost effectiveness analysis. The Lancet: Infectious Diseases, vol 11, June 2011.
14
discussion with the patient. Furthermore, once an individual starts treatment for latent TB
they need to be monitored closely as many default, which in turn leads to excess costs to
service in seeking to re-engage them. If they do not complete their latent TB treatment they
remain at continued risk of developing active TB in the future.
Key issues
London as a whole has very high rates of TB. Over time there has been a significant
increase in rates and number of cases of TB. The rate in some boroughs is more than twice
that of the definition used by the WHO for high rates.
The majority of cases are in people born overseas, although it often takes several years for
them to become symptomatic.
London has large numbers of socially and medically complex cases of TB. This includes
those with HIV infection as well as risk factors for poor treatment completion and onward
transmission to others such as homelessness, drug or alcohol problems, a history of
imprisonment or mental health issues.
The majority of cases in London are caused by the reactivation of latent TB, the
identification of which is costly and the treatment of which carries a clinical risk. Many
individuals who start treatment for this do not complete their prescribed course.
15
3.
International comparisons
Western Europe
London has the highest rate of TB of any major city in Western Europe (Figure 7). This
represents a significant public health risk, as well as a risk to the reputation of the capital.
Given that rates are declining elsewhere in Western Europe, the situation in London is even
more striking.
Figure 7 – London and other Western European cities, comparison of TB rates per
100,000 population, 2009
50.0
44.0
45.0
35.0
30.5
30.0
23.4
25.0
24.0
18.7
20.0
16.8
16.0
15.0
5.4
6.0
6.7
7.0
Milan
Italy
Amsterdam
Netherlands
7.8
Stockholm
Sweden
10.0
14.6
12.0
Berlin
Germany
TB rates per 100,000 population
40.0
9.6
8.2
5.0
London
UK
Brussels
Belgium
Barcelona
Spain
Paris
France
0.0
City / Country
Source: Dr Ibrahim Abubakar, Health Protection Agency
While TB rates in Western European cities are much lower than London, these cities do
provide examples of successful initiatives for TB control among groups with social risk
factors. For example, the use of a mobile X-ray unit in Rotterdam16 improved the detection of
both active and latent TB and increased the number of contacts traced.
In Paris, the TB rate reached 54 per 100,000 in the early 2000s. The epidemiology was
similar to London with 79% of cases in those born overseas. The local authorities
implemented a series of actions including a mobile X-ray unit and social support team, latent
TB testing, widespread vaccination of children and improved contact tracing. As a result, the
TB rate decreased to 23.6 per 100,000 over the following seven years.
Figure 8 – Comparison of TB rate per 100,000, 2000-2009
16
de Vries G, van Hest RA. From contact investigation to tuberculosis screening of drug addicts and homeless
persons in Rotterdam. European Journal of Public Health, vol 16 (2) 133-136. 2005
16
60
50
40
Paris
30
Rotterdam
20
London
10
0
2000 2001 2002 2003 2004 2005 2006 2007 2008 2009
Source: HPA London
New York
In terms of TB rates and the number of TB cases, New York in the early 1990s is comparable
to London in 2011. Figure 9 compares the TB rates per 100,000 population in New York and
London since 1982.
Figure 9 – London and New York, comparison of TB rates per 100,000 population,
1982- 2008
17
TB numbers peaked in 1992 in New York City at 3,811 TB notifications17 at a rate of
approximately 50 per 100,000 of the population.
The epidemiology in New York differed somewhat to that now seen in London. There was a
higher rate of recent transmission (often in healthcare settings), higher rates of drug
resistance and more HIV co-infection. As would be expected, the greatest impact of the New
York policy was a reduction in cases arising from recent disease transmission18. In London,
most symptomatic disease is due to reactivation of latent TB in the foreign born (see section
2). The emphasis of TB control in London therefore, needs to differ from that applied in New
York and a targeted approach to tackle latent TB is required.
Nevertheless, there are lessons to be learned from the New York approach.
New York had disinvested considerably in TB programmes and public health infrastructure
based on projections that indicated the incidence of the disease would fall to almost
negligible levels (Figure 10). Consequently, the cost of tackling the disease exceeded
$700million between 1992 and 1996, much of which was required to re-establish its services.
Figure 10 – TB rates in New York City, 1940 - 2000
Actual Cases
10000
Projected Cases
Number of cases
9000
8000
7000
6000
5000
4000
3000
2000
1000
0
1940
1945
1950
1955
1960
1965
1970
1975
1980
1985
1990
1995
2000
Years
Source: Chrispin Kambili, MD, Director, Bureau of TB Control, Health Department, New York City
There are indications from services that London has also started to disinvest in TB services
although on a smaller scale (see section 6). If this is not reversed, the cost of addressing TB
in London will be significantly higher in future years. The experience in New York suggests
this is likely to occur within the next three to five years.
New York adopted a whole systems approach to reversing the rise of TB, including
awareness raising, a focus on treatment completion, improved surveillance and outreach
17
Bureau of Tuberculosis Control. Clinical Policies and Protocols, 4th Edition. New York City Department of
Health and Mental Hygiene. March 2008.
18 Frieden T, Fujiwara PI et al. Tuberculosis in New York City – Turning the Tide. New England Journal of
Medicine. 333:229-233. 1995
18
services. While the epidemiology is different in London, the problem is equally multifaceted
and will require a similarly broad set of interventions.
New York brought a range of agencies together to form a TB Control Board, with the financial
and political power to bring about change in health services, social care, housing agencies
and prisons. London, in comparison, does not currently have a city-wide, multi-agency
approach to managing TB. The commissioning of TB services is variable across the city (see
section 6).
Key issues
London has the highest rate of TB of any major city in Western Europe.
There have been some significant local initiatives in other European cities that have
contributed to a reduction in their TB rate and should inform the model of care for London.
New York was in a similar position to London in the early 1990s and brought its TB rate
down through investment in services, a multi-faceted strategy and a coordinated, multiagency effort.
19
4.
Policy overview
The care and management of TB in the UK has been driven largely by the following key
policies.
Stopping Tuberculosis in England: An Action Plan from the Chief Medical Officer
(2004)19
This best practice guidance recognised the re-emergence of TB as a public health problem in
the UK and recommended ten actions that were essential to bring TB under control:

Increased awareness

Strong commitment and leadership

High quality surveillance

Excellence in clinical care

Well organised and coordinated patient services

First class laboratory services

Highly effective disease control at population level

An expert workforce

Leading edge research

International partnership
The actions were recommended with no additional resources for implementation. They
prompted the development of pan-London metrics for TB services (see section 6.2) and
resulted in some national changes that have contributed to TB care:

The national enhanced TB surveillance system is being upgraded

DNA fingerprinting and molecular typing is now in place

NICE guidelines to support patient care and management were developed and have been
updated

First class laboratory services are now in place
British HIV Association guidelines for the treatment of TB/HIV co-infection (2005,
updated in 2011)20
The British HIV Association (BHIVA) produced specific guidelines on the management of
individuals co-infected with TB and HIV.
These recommend that care takes place within a multidisciplinary team which includes
physicians who have expertise in the treatment of TB and HIV. It also recommended that all
TB patients of unknown HIV status should be offered an HIV test. The London TB metric on
19
Department of Health. Stopping Tuberculosis in England: An Action Plan from the Chief Medical Officer.
October 2004.
20 British HIV Association. British HIV Association guidelines for the treatment for TB/HIV coinfection 2010.
(awaiting peer review feedback prior to publication). 2010
20
HIV aims to have at least 90% of TB patients offered an HIV test. This is monitored through
the London TB Register (LTBR) and overall London achieved 93% for all TB patients aged
16 years or older in 2010. In general, joint working between HIV and TB services has been
successful in London.
NICE clinical guidelines for TB (2006, updated in 2011)21
The guidance was developed by NICE as a successor to the British Thoracic Society’s TB
guidelines, which had been used for many years as the principal source of advice on TB
management in the UK. It includes recommendations on ways of organising services
efficiently to provide the best possible care.
The guidance aims to focus NHS resources where they will combat the spread of TB, and
where scientific evidence supports it, makes recommendations on service organisation as
well as clinical practice. It covers the following subject areas:

Diagnosis

Management of respiratory TB

Management of non-respiratory TB

Monitoring, adherence and treatment completion

Risk assessment and infection control in drug resistant TB

Management of latent TB

BCG vaccination

Active case finding

Preventing infection in specific settings
The guidelines were updated in March 2011 to reflect advances in diagnostic techniques.
The majority of these changes and some of the original 2006 recommendations have not yet
been implemented systematically across London. The resulting variability of service provision
is described in section 6.3.
Tuberculosis prevention and treatment: a toolkit for planning, commissioning and
delivering high-quality services in England (2007)22
This best practice guidance provides those who commission TB services in England a
framework for assessing their local needs and for planning and commissioning high-quality
services in order to implement the TB action plan. It also contains models of best practice for
the prevention, treatment and monitoring of TB for service providers, including laboratory
services. Some of the detailed information in the toolkit is now out of date e.g. the scope of
Payment by Results (PbR) has increased and PCTs have been reconfigured.
21
National Institute for Health and Clinical Excellence. Clinical guideline 117. Tuberculosis clinical diagnosis and
management of tuberculosis, and measures for its prevention and control. March 2011.
22 Department of Health. Tuberculosis prevention and treatment: a toolkit for planning, commissioning and
delivering high-quality services in England. Published electronically only. June 2007.
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_075621
21
As a result of this guidance, a Stopping TB in London group was established to coordinate
the capital’s response. This group developed the London TB metrics (see section 6.2).
The guidance included key messages for commissioners, which remain relevant.

There is a strong economic case for effective management of TB. As well as the public
health imperative, the lack of an effective strategy and poor management of TB can be
very costly in the long term.

Poor management can lead to the emergence of drug resistant cases which are much
more expensive to treat.

To secure high-quality services, commissioners need to consider their local TB incidence
and population demography, and potential changes to that demography, such as new
demands resulting from population migration. Therefore, all PCTs should plan for TB
services.

Every PCT should identify a named TB lead.

TB is best diagnosed and managed by experienced specialists. While primary care
clinicians may suspect a diagnosis of TB, a formal diagnosis – including treatment and
care plans – is best made by specialist service providers.

Primary care does have an important role in providing support to the patient through the
treatment period.
Key issues
The care and treatment of TB is subject to several important pieces of national guidance,
although both compliance with existing guidelines and implementation of new
recommendations is patchy across London.
22
5.
Patient pathway
Person has TB symptoms
Person enters UK from highincidence country
Port Health service screens
high-risk person and
identifies potential TB
infection
Patient identified by other
service - Find & Treat, prison
health and other clinical
specialists
Person presents at GP surgery,
A&E department or other urgent
care centre
TB suspected and patient
referred to TB service
Named Case Manager
allocated
Diagnostic investigations by TB
service
Patient diagnosed
with TB
HPU referral for
infectious,
drug resistant,
complex/non-compliant
cases
use of Public Health Act
Contact tracing &
screening
Treatment
Patient followed up and
reviewed
Treatment completed
Patient discharged
Individuals with suspected active TB can enter the TB care pathway via a number of different
routes. Direct referral to the TB service does occur from primary care, accident and
emergency (A&E) or any direct access clinics. Allied hospital services such as respiratory
medicine, ENT and orthopaedics or neurology/neurosurgery will also see new presentations
23
of disease. For people entering the UK from countries with a high incidence of TB, screening
may be performed by Port Health Services. Additionally, the Find and Treat service in
London provides a mobile X-ray unit for detecting TB in vulnerable groups, such as homeless
people. Similar work, using static digital X-ray equipment is now starting in many of London’s
prisons.
Across London, 30 different hospital outpatient clinic services provide diagnostics and
specialist care for TB patients (29 of the 30 services have inpatient as well as outpatient
provision). They are distributed widely across London. The model of care provided to TB
patients is a traditional one based on the outpatient clinic, typically Monday to Friday, 9am to
5pm. Approximately 1,600 patients are seen in TB clinics across London each week.
Following diagnosis of active TB, patients are allocated a case manager, typically a TB nurse
from the TB clinic, to support them with administering medication and follow up care. To
assess whether infection has spread, screening is offered to close contacts (usually
household or workplace contacts) and in some cases, casual contacts of the person with
active TB.
Treatment for TB is typically a six month course of antibiotics with initially four drugs. Some
TB clinics offer directly observed therapy (DOT), to support patients to take their medication
as prescribed. DOT involves an enhanced package of care which includes either a health
professional or other appropriately trained person observing the ingestion of prescribed
medications and recording this in a log.
Patients are usually followed up at monthly appointments in clinic to track their clinical
progress and response to treatment, ensure adverse effects are minimised, verify that
therapy is being taken as planned and to renew prescriptions for medication.
Approximately 30% of cases require inpatient care in one of the 29 hospitals across London.
Specialist care of children with complex TB disease is provided by several hospitals across
the capital. Individuals requiring treatment for drug-resistant or multi-drug-resistant TB are
usually cared for in one of the ten hospitals across London that provide treatment for complex
cases.
Once treatment is completed, discharge takes place. This is generally at six months for noncomplex cases. However for more complex cases, this varies depending on the site and
severity of the disease and can extend beyond one year. Post-treatment follow up is often
extended if there is ongoing concern regarding risk of TB relapse, such as extensive or drug
resistant disease, or post-TB complications such as respiratory compromise or
spinal/neurological disease.
24
6.
Challenges with current service provision
6.1
Delays in detection and referral
Delays in presentation, diagnosis and referral of TB can lead to unnecessary suffering, long
term disability and increased cost to the NHS and social care services. It also results in
increased TB transmission as the index case is infectious for longer.
At present, patients often consult their GP numerous times prior to TB being considered as a
diagnosis, and patients will present at A&E departments because delays in the recognition of
early symptoms lead to a requirement for urgent care23.
TB is often not detected early because of:

A lack of awareness of TB and its symptoms by those at greatest risk

A lack of awareness among healthcare professionals and resulting failure to consider TB
as a possible diagnosis

Variability in the interpretation and implementation of screening guidance.
Community awareness
There are low levels of awareness of TB in the general population, and even in many highrisk groups. In addition, while some communities understand their risk of developing TB,
specific individuals may not acknowledge this to the same extent and even defer
presentation, given the stigma associated with the disease24. In some cases, even a positive
result may not be believed when given25. Clarity about the risk, causes and treatment of TB
can help tackle both low awareness of TB and the negative issues surrounding the disease.
The stigma associated with TB is particularly damaging as it can lead to late presentation,
failure to complete treatment, and discourages patients from identifying their contacts for
screening. All of these factors can prevent active or latent TB being considered, detected and
treated successfully. Perceptions which contribute to stigma include:

Belief that TB infection also means co-infection with HIV

Fear that one’s relatives will be ‘marginalised’

Belief that TB reflects poor living conditions

Belief that TB results from poor hygiene26.
Barriers or perceived barriers to care often prevent presentation for TB treatment.
Communities often have inadequate information on how to access health services, a lack of
23
Public Health Action Support Team. London TB Service Review and Health Needs Assessment. 180-181.
September 2010.
24 Gerrish K, Ismail M, Naisby A. Tackling TB together: a community participatory study of the socio-cultural
factors influencing an understanding on TB within the Somali community in Sheffield. Sheffield Hallam
University. Project report. 2010.
25 National Institute for Health and Clinical Excellence. Tuberculosis evidence review. Review of barriers and
facilitators. Oct 2010.
26 Health Protection Agency. Beliefs and barriers related to understanding TB amongst vulnerable groups in
South East London. South East London Health Protection Unit. 2006.
25
knowledge about entitlement to primary care and that TB treatment is free of charge
irrespective of residency status27.
Awareness among healthcare professionals
The HPA/TB Alert survey 2010/11 found that primary care health professionals often
underestimated TB prevalence in their locality and needed further information about TB
screening and diagnosis, referral and management28.
There is evidence that some patients have had to urge their clinician to consider a diagnosis
of TB – some returning to their country of origin to achieve a diagnosis. Griffiths and
Martineau noted that there is a need for ‘GPs and practice nurses...to lower their thresholds’
for requesting diagnostic tests for TB, and also ‘for referring those with unexplained
symptoms’29.
As 55% of the TB in London is non-pulmonary, education of primary health care
professionals needs to emphasise that TB must be considered in people with symptoms
outside of the chest.
Some patients (particularly those with social risk factors) tend to access A&E services30, so
heightened diagnostic awareness in A&E doctors would identify people with TB earlier.
Screening
Screening involves assessments for active TB disease, latent TB infection or both. It seeks to
identify cases early. This is for the benefit of both the individual (providing the opportunity for
treatment and health education) and the public (reducing the total burden of TB and onward
transmission to others).
Because more than 80% of TB notifications are attributable to those born outside the UK, the
practice since 1971 has been to screen individuals from countries with a TB rate of more than
40 per 100,000 who intend to stay longer than six months when they arrive in the UK.
Under the Port of Arrival (POA) scheme31 individuals who meet the criteria outlined above
should be offered a chest X-ray to detect active pulmonary TB, and be referred to TB
services for diagnosis and treatment, where required. However, a 2006 audit of the POA
scheme32 found that POA screening was not being applied consistently across the country or
systematically within the ports themselves, and variation existed in the provision of medical
inspection facilities (for instance, only Heathrow and Gatwick airports had X-ray machines).
Chest radiology also does not detect latent TB – the source of the majority of TB in recent
migrants33 – which would be diagnosed using tests such as IGRA.
27
Jayaweera H. Health and access to healthcare of migrants in the UK. Health briefing papers. Race Equality
Foundation. 2010.
28 National Awareness Survey for TB in Primary Care: National Knowledge Service –TB and TB Alert UK, HPA.
London, 2011.
29 Griffiths C, Martineau A. The new tuberculosis: Raised awareness of tuberculosis is vital in general practice.
British Journal of General Practice. 57(535): 94–95. February 2007
30 Department of Health, Healthcare for Single Homeless People, March 2010
31 Moore-Gillon J, Davies PDO, Ormerod LP. Rethinking TB screening: politics, practicalities and the press.
Thorax 2010.
32 Srivastava S, et al. New Entrant Screening Strategies for Tuberculosis – A worthwhile cause? St George's
Hospital, Mayday Hospital. London 2006.
33 Tuberculosis in the UK: Annual report on tuberculosis surveillance in the UK. London: Health Protection
Agency Centre for Infections. October 2010
26
Systems to screen new entrants at port of entry are fragmented and inconsistent and there is
debate regarding its cost effectiveness as a strategy for TB control34 as the proportion of
people with active pulmonary TB coinciding with the time of their arrival in the UK is very
small indeed. In 2004, only a quarter (around 70,000) of those who met the eligibility criteria
(around 280,000) received a chest X-ray and around 100 active pulmonary TB cases were
detected as a result – approximately 0.04% of the total number of arrivals35. Moore-Gillon et
al estimated that around 100,000 of those arrivals had latent TB infection and at least 10,000
would develop active TB in the future36.
Where TB is suspected, various factors significantly reduce the effectiveness of follow up for
new entrants. Those with suspected TB are referred to local Health Protection Units (HPUs),
which in turn, refer on to TB services. In some cases, the addresses given by new arrivals
are incorrect and those identified are lost to treatment. A study in 2005 found that follow up of
screening by Communicable Disease Control varies considerably due to the low perceived
benefits from doing so37 38.
There is evidence to suggest that targeted TB testing in primary care has a better yield (that
is, identifies a higher proportion of both active and latent TB cases relative to the number
tested) and is more cost-effective than port of entry screening.
For example, in response to high levels of TB in Hackney, Griffiths et al39 piloted an outreach
programme that promoted TB screening for newly registered patients between June 2002
and October 2004. Screening was initially verbal and progressed to TB skin testing if the
patient’s responses suggested they were in a high-risk group. Of the 50 participating GP
practices, 25 trialled the programme (intervention practices) and 25 formed the control group.
During the trial period, the proportion of active TB cases identified in intervention practices
was 13% higher than control practices. In addition, the average number of days from a
patient’s first GP consultation to their referral to a TB service was lower in intervention (28
days) than control practices (61 days).
Overall, the pilot demonstrated that TB screening in general practice was feasible, relatively
inexpensive and increased the proportion of active TB cases identified. While the increase in
the detection of latent TB was not significant, TB diagnostic technology has evolved since the
Hackney pilot and current guidelines for latent TB testing advocate use of interferon gamma
release assay (IGRA), which may be more effective at detecting latent disease40.
Screening of homeless people and problem alcohol and drug users for active TB is carried
out in London by the Find and Treat service, comprising a mobile X-ray unit and small team
of staff. A recent evaluation of this service by the Health Protection Agency (HPA) found that
34
Hogan H, Coker R. Screening of new entrants for tuberculosis: response to port notifications. Journal of
Public Health. VoI. 27, No. 2, pp. 192–195. Advance Access Publication. March 2005.
35 Srivastava S, et al. New Entrant Screening Strategies for Tuberculosis – A worthwhile cause? St George's
Hospital, Mayday Hospital. London 2006.
36 Moore-Gillon J, Davies PDO, Ormerod LP. Rethinking TB screening: politics, practicalities and the press.
Thorax 2010.
37 Coker R. Compulsory screening of immigrants for tuberculosis and HIV. British Medical Journal. 328:298.
February 2004.
38 Underwood BR, White VLC et al. Contact tracing and population screening for tuberculosis – who should be
assessed? Journal of Public Health Medicine 2003. 25(1): 59–61. 2003.
39
Griffiths C, Sturdy P et al. Educational outreach to promote screening for tuberculosis in primary care: a
cluster randomised trial. The Lancet, May 5-May 11 2007.
40 National Institute for Health and Clinical Excellence. Clinical guideline 117. Tuberculosis clinical diagnosis and
management of tuberculosis, and measures for its prevention and control. March 2011.
27
this service saves the NHS considerably more than it costs to operate. Although the
evaluation did not consider alternative models of provision, the findings support those from
Holland that suggest this model is a cost and clinically effective approach to identifying active
disease in groups with social risk factors.
Detailed statistics on the rates of TB in prisons are not yet available, although the recently
introduced national Enhanced TB Surveillance System will allow more accurate estimates in
future years. Local studies have estimated the TB prevalence rate in London prisons at 208
per 100,00041, almost five times the rate for London as a whole. The Find and Treat service
has traditionally provided screening for London’s prisons. But the frequency of planned visits
and high daily turnover of prisoners resulted in poor coverage of the prison population. As a
result, the Department of Health has funded a programme to install static digital X-ray
machines in five of the seven prisons in the city. The aim is to ensure all new and transferred
prisoners are screened as part of routine health checks, though the new equipment is not yet
fully operational. The Find and Treat service continues to provide an ad hoc response when
prisoners display symptoms, but coverage of the prison population is currently poor.
Key issues
Poorly informed and inaccurate beliefs about TB in the community is delaying early
presentation of the disease and increasing the risk of transmission.
A lack of understanding of the disease and its symptoms by healthcare professionals often
results in delayed diagnosis or misdiagnosis.
Current screening guidelines for TB are neither applied consistently across London nor cost
effective in detecting the disease.
6.2
Variability of commissioning
TB services are predominantly provided by acute trusts and included in cluster acute
contracts. Activity is recorded as inpatient spells and outpatient appointments, although the
coding of outpatient activity is insufficiently sensitive to identify it from nationally collated data.
In some areas, specialist nursing and outreach work is provided as part of a community
services contract. Some initiatives (such as the Local Enhanced Service in Hackney) are
funded through primary care or other budgets.
Current network arrangements
Local service planning, developments and protocols are managed through five TB networks,
which align to the cluster arrangements in London (one TB network exists for North East
London). However, there are significant differences between the networks. In particular, the
membership, host organisation, financial support, administrative support and work
undertaken vary considerably. Currently, only the North Central London network incorporates
a commissioning function, although both North East and South West London have done so in
previous years. The current transition from PCTs to clusters will potentially accentuate this as
in some areas, it is not yet clear whether new roles will encompass engagement with the
network.
41
Story A, Murad S et al for the London Tuberculosis Nurses Network. Tuberculosis in London: the importance
of homelessness, problem drug use and prison. Thorax 62:667-671 2007.
28
North West London
(NWL)
Primarily an educational and supportive forum.
HPU based network coordinator.
The network coordinator administers the network, sets up
meetings, writes regular reports and keeps members up to
date on developments in and out of the sector. Also supports
a range of operational activities such as cohort review and
training activities.
The network coordinator has no link with cluster
commissioners and no influence on the TB budgets at a trust
or cluster level.
The network is chaired by a lead clinician and the TB lead
from the HPU. Members are staff who work in NWL TB
services, PCT public health, microbiologists, consultant
paediatricians, DPHs, PCT TB leads and HPU.
North Central London Cluster-employed network manager based in the Strategy
(NCL)
and Planning Directorate.
Network manager is supported by cluster finance and
contracting functions and has responsibility for the TB budget
across NCL.
Network chaired by a lead clinician and nurse. Clinical
teams, local public health services, local commissioners and
HPU represented.
North East London
(NEL)
Considered primarily an educational and management
forum.
No network manager or coordinator since 2010. The network
management is led by a clinician and nurse with some
support from the HPU TB lead.
Not coterminous with a single cluster and little direct
engagement with Inner North East London (INEL) or Outer
North East London (ONEL).
Attended by members of staff who work in NEL TB services,
PCT public health, other PCT staff and the HPU.
South East London
(SEL)
Considered primarily a provider network.
HPU based network coordinator supports the network
meetings.
The network is chaired by a DPH but has no budget and no
direct lines of communication with cluster commissioners.
Membership includes TB nurses, consultant microbiologists,
29
consultant paediatricians, chest consultants, HPU, PCT
public health leads, and patient representatives/advocates.
South West London
(SWL)
Coordinated by the lead HPU consultant with responsibility
for TB with some administrative support to organise
meetings.
Chaired by a clinician and attended by representatives from
TB services, microbiology, paediatrics, HPU and public
health.
No commissioning input and no real performance
management role.
Investment in specialist non-medical staff
Each TB service comprises a multidisciplinary team, including medical and specialist nursing
staff. Some also include administrative and social care support staff. The specialist nurses
play a pivotal role as case managers for patients, coordinating their care and the involvement
of other agencies as required. In some TB services, the specialist nursing service is provided
by the acute trust and funded through tariff. There is a ‘TB Nurse Support’ tariff within the
PbR system, which is rarely used. In most of South East London and some parts of North
West London, specialist nursing is provided by the local community health provider and
commissioned within the community services contract. As a result, the commissioner spend
per notification is higher in these clusters than elsewhere (see figure 11). In North Central
London, the TB network has established a cluster-wide nursing service, funded partly by
recouping a proportion of the tariff paid to acute trusts and partly through additional
investment – in effect, a partial unbundling of the tariff.
Figure 11 – Comparison of commissioner spend and provider investment in specialist
staff per TB notification, 2010/11
30
See section 8 for notes on financial data
Figure 11 shows the level of investment in specialist non-medical staff per TB notification.
Staff costs are used in this context as a proxy measure for service costs. Although they
exclude non-pay, drug, overhead and other costs, they provide a useful illustration of the
different levels of internal investment in specialist TB services in provider organisations.
Although some variation is to be expected because of different service configurations, skill
mix and caseloads, the graph suggests that the capacity of services in some parts of London
has failed to keep up with the number of TB cases. A lower proportion of commissioner
spend in North West London and North East London has translated into service capacity.
Indeed, there is some evidence of disinvestment in North East London, where consultant
sessions have been reduced and the network manager post has been lost.
In contrast, a much higher proportion of commissioner spend in North Central London has
been invested in service capacity. This proactive approach has ensured that the capacity of
the service has remained aligned with the level of commissioner spend.
It is notable that the only two sectors to have seen a reduction in TB rates in the last seven
years are those where the highest proportion of commissioner spend has been invested in
specialist staff. There is clearly scope to roll out a similar approach to other parts of London.
Figure 12 – TB rates (2003-2010) by sector with linear trend lines
31
Commissioning expertise and financial flexibility
Following the publication of the Chief Medical Officer’s Action Plan in 200442, the Stopping
TB in London group developed a series of metrics to monitor performance against the Plan
across London. The metrics have been regularly reviewed and updated but achievement
remains patchy (see Appendix A). They have been used primarily as a measure of progress
rather than a tool to manage performance.
Effective commissioning of TB care requires some specialist knowledge to appreciate the
relevance of the metrics for TB control to re-direct resources to the most effective parts of the
care pathway and to manage the relationship between health services, HPUs, social care
and housing agencies. Where a dedicated post does not exist at TB network level, the
monitoring and performance management of these relatively detailed indicators competes for
time and attention with other acute priorities. At present, only one of the clusters (NCL) has a
dedicated TB commissioning resource.
The current plans to devolve commissioning to clinical commissioning groups may have a
further negative effect on TB control. For example, TB outbreaks are likely to be very
infrequent within each commissioning group’s area or will cross several financial and
administrative boundaries. It is therefore unlikely that any single commissioning group will
have sufficient budgetary flexibility to make provision for the high cost of cases of infrequent
multidrug and extensively drug resistant TB or an unexpected incident such as a school
outbreak within their area. Furthermore, the cost-effectiveness of initiatives such as the Find
and Treat service is dependent on implementation across a wide geographical area.
Accommodation
42
Department of Health. Stopping Tuberculosis in England: An Action Plan from the Chief Medical Officer.
October 2004.
32
Stable and safe accommodation for homeless TB patients is essential to enable treatment to
be completed to reduce the risk of transmission and to protect public health. Approximately
3% of TB patients in London were homeless in 200943.
Homeless TB patients tend to present with more clinically advanced disease, be more
infectious, have more associated co-morbidities such as drug or alcohol use and mental
health issues, and are more likely to have drug resistant strains44. They are also at greater
risk of being lost to treatment services and hence not complete therapy. The provision of
temporary accommodation during treatment results in better compliance as patients have
stable living and contact arrangements, which in turn, enables directly observed therapy
(DOT) to be used. This period of stability also allows access to other local health and social
support systems.
Eligibility criteria for emergency or temporary accommodation vary from borough to borough
across London. The majority of local authorities do not currently include TB as a risk priority.
They are also reluctant (and sometimes unable, legally) to fund temporary housing for those
with no recourse to public funds such as homeless asylum seekers and undocumented
migrants.
The NHS is obliged to address the risk to public health posed by patients in this situation and
some have required detention under section 2A of the Public Health Act. This usually results
in a lengthy inpatient spell of six months or more or an ad hoc arrangement for the NHS
commissioner to fund or part-fund temporary accommodation. The latter is financially
advantageous for the NHS, costing about £250 per week in contrast to about £1,750 for
inpatient care45.
Although local arrangements for temporary accommodation have been negotiated from time
to time, they are on a single case basis and subject to a relatively lengthy process involving
the submission of a business case locally and negotiation of a waiver of standing financial
instructions. As well as creating unnecessary delay, this approach is not systematic or guided
by any agreed framework to determine eligibility or accommodation requirements.
There is scope to formalise the current ad hoc arrangements, reducing the delay and
mitigating the financial risk to individual commissioners. A coordinated approach would also
provide an opportunity to engage local government at a London level to seek a contribution to
these costs.
43
Health Protection Agency London Regional Epidemiology Unit. Annual report on tuberculosis surveillance in
London. London; 2009.
44 Story A et al. TB and Housing: Meeting the needs of homeless and ‘hard to treat’ TB patients in London: 75.
2004.
45 Personal communication, L Altass, North Central London Network Manager for TB
33
Key issues
There is significant variation in the configuration and governance of the five TB networks
across London. The majority have few links to commissioning clusters and no performance
management role.
Those managing acute contracts in clusters have little knowledge of TB and in general,
poor access to specialist expertise. As a result, the performance management of providers
fails to take account of the London TB metrics or the key features of TB control.
Although provider trust income increases as the TB rate rises, the capacity of TB services
often does not.
It is financially advantageous for the NHS to fund temporary accommodation rather than
hospital stays for a small group of TB patients. Although an ad hoc process has evolved to
facilitate this, it can be lengthy and is not subject to any systematic control.
6.3
Variability of service provision
Some variability in service provision is to be expected and is appropriate when planned in
response to local need and demographics. However, many of the differences in current
service provision cannot be attributed to these factors and appear to be the result of historical
precedent and organic development rather than planning. As a result, some TB services are
not making the best use of the resources available to them, particularly with regard to the skill
mix of staff deployed, the use of directly observed therapy (DOT) and contact tracing 46. The
use of BCG vaccination also varies considerably.
Availability of specialist expertise
TB services are generally led by either respiratory or infectious disease clinicians who
dedicate only a small number of sessions per week solely to TB. As a result, clinical expertise
in the disease is limited to a handful of individuals in each sector. This is particularly relevant
in areas of relatively low incidence, where most clinicians treat very few, if any, complex
cases.
Although there is little TB-specific evidence of poorer outcomes for people treated by less
experienced clinicians, there is a substantial body of evidence relating to similar complex
infectious diseases, such as HIV, that shows improved patient outcomes when treated by
teams with larger caseloads and greater experience of complex cases.
NICE recommends that treatment of complex cases is managed only by physicians with
substantial experience in drug-resistant TB in hospitals with appropriate isolation facilities
(negative pressure rooms) and in close conjunction with the HPA. Although this happens in
the majority of cases, there continue to be instances of complex TB cases managed by
relatively inexperienced clinicians.
46
Public Health Action Support Team. London TB Service Review and Health Needs Assessment. September
2010
34
Staffing profiles
Decisions about the number, type and grading of staff contribute to variability in the workload
and effectiveness of TB services and do not relate to the complexity of TB patients cared for
by services. For instance, specialist TB nurses (grades 6, 7 or 8) are often used to deliver
DOT in the community – a service that could be provided as effectively by social care support
staff (grades 3, 4 or 5), community pharmacists or third sector workers at significantly lower
cost, while allowing senior nurses to tailor their efforts more appropriately.
The following table shows the ratios of TB notifications to senior TB nurse, administrative and
social care support posts, averaged across each of the five TB sectors and London as a
whole. There is considerable variation between and within the TB sectors. While it appears
that across the sectors the NICE recommendation for a ratio of one nurse to 40 TB
notifications is being met, the aggregate data present a misleading picture. In North West
London for instance, the number of nursing posts ranges from one nurse to 22.5 notifications
(St Mary’s Hospital) to one nurse to 53.4 notifications (Northwick Park Hospital). The
availability of social care support within sectors is also extremely varied. Homerton Hospital
in North East London has one post to 107 TB notifications, whereas Newham Chest Clinic
(serving an area with particularly high TB rates) has no social care staff.
It is notable that the sectors with the highest ratios of TB notifications to staff are also those
with the highest rates of TB.
Ratios of TB notifications to staff
TB sector
TB rates per
100,000
population*
Nurse
Admin
Social
care
North Central
34.8
28.8
94.5
103.7
North East
58.5
32.4
118.3
291.9
North West
61.6
35.3
157.5
567
South East
30
39.3
94.3
98.3
South West
25.1
36.5
122.1
214.4
34
120.2
204.4
London
43
*Rates are based on a three year average (2008-10)
Directly Observed Therapy (DOT)
In accordance with NICE guidelines, all patients should have a risk assessment for
adherence to treatment, and DOT should be considered for patients who have social risk
factors such as a history of homelessness, imprisonment or problem drug or alcohol use. The
use of DOT improves treatment compliance and completion rates.
At present, DOT is not always available to those who would benefit from it, or have been
assessed as requiring it. The provision of DOT (as reported in the HPA London TB Annual
Report 2009, published January 2011) varies widely across London in relation to who
receives it and how it is provided (for instance, by outreach workers or clinic based DOT).
There is also variation in when it is provided, with some but not all TB services offering DOT
outside standard working hours.
35
Across London, 8.5% of TB patients receive DOT – significantly lower than the 12% of
patients with at least one social risk factor who could benefit from receiving it. This suggests
divergent practice in the application of NICE guidelines. The approach to risk assessment
has not been standardised and there is no London DOT protocol to achieve treatment
compliance.
Contact tracing
Contact tracing is used to find associated TB cases to detect people infected, but without
evidence of disease (latent infection), and to identify those not infected for whom BCG
vaccination may be appropriate. It is also undertaken to find a source of infection and any coprimary cases.
At present, contact tracing is inconsistently applied across London. Performance data are not
collected for London and only the North Central London TB sector collects relevant
information for use within the sector.
A review of TB services found that although 90% of service providers in London had a
contact tracing clinic, the numbers of contacts were not routinely reported and anecdotally,
there was considerable variation in the number of contacts traced per notified case.
This is a concern as contacts with untreated active pulmonary TB can infect 10-15 individuals
per year and suffer worse health outcomes due to delays in diagnosis and treatment.
Outreach
Many TB patients have significant social risk factors and often require additional support to
complete their treatment (for instance, help to secure appropriate accommodation, access
benefits and address drug and alcohol problems). Some TB services employ social care
support workers to fulfil this role.
As the table on the previous page shows, there is a significant variation in the ratio of these
workers to TB patients across the sectors – ranging from one social care support worker per
98 TB notifications in South East London to one per 567 patients in North West London. This
variation remains significant, even when the proportion of patients with social risk factors in
each sector is taken into account.
The London Find and Treat team (including the mobile X-ray screening unit) supports
London’s TB services and people whose lifestyles make it more difficult for them to access
health services by providing an outreach and screening service. Referrals to the Find and
Treat service vary across TB services and sectors. Some TB services with the highest
proportions of TB cases with social risk factors appear not to make full use of Find and Treat.
BCG vaccination
The BCG immunisation programme was introduced in the UK in 1953 and has undergone
several changes since then in response to changing trends in the epidemiology of TB. The
programme was initially targeted at children of school leaving age (then 14 years), as the
peak incidence of TB was in young, working age adults. In 2005, following a continued
decline in TB rates in the indigenous UK population, the schools programme was stopped.
The BCG immunisation programme is now a risk-based programme, the key part being a
neonatal programme targeted at protecting those children most at risk of exposure to TB,
particularly from the more serious childhood forms of the disease.
36
A recent review of clinical trials and observational studies confirmed that BCG vaccination
provides protection against TB. Studies have shown BCG to be 70 to 80% effective against
the most severe forms of the disease, such as TB meningitis in children.
The Department of Health Green Book on Immunisation recommends BCG vaccination is
offered to all infants in areas where the TB rate is at least 40 cases per 100,000 population.
In areas with a lower incidence, it recommends a targeted approach where the vaccination is
offered to those whose families come from regions of the world where the TB incidence is 40
cases per 100,000 or greater and are at increased risk of exposure to TB infection. Currently,
the TB rate (and therefore the decision whether to offer vaccination) is considered at PCT
level. As a result, 13 of the 31 PCTs in London should offer BCG to all children under 12
months of age (based on 2010 TB rates). Actual PCT provision of neonatal universal BCG is
higher with some PCTs offering universal BCG even though they have TB rates below 40
cases per 100,000.
Provision of neonatal BCG varies across London with a few hospitals administering the
vaccine before the baby leaves hospital. Babies who do not receive the vaccination in
hospital usually receive it in the community when they are between one week and one year
old.
Actual uptake however varies considerably in those PCTs offering vaccination to all infants,
with an average of 64% across London47.
North Central London
75% average
North West London
24%-75%
North East London
70%-80%
South East London
62%-75%
South West London
No PCTs offer universal BCG.
Key issues
Current staffing profiles within TB services often do not take account of local incidence, the
characteristics of the local population or the skill level required to deliver different services.
The provision of directly observed therapy (DOT) varies, but apparently not in relation to
need.
The approach to tracing contacts of people with infectious TB varies, with no systematic
collection of performance or outcome data.
Uptake of BCG vaccination ranges from 24% to 80% in the parts of London where it should
be offered universally.
47
Public Health Action Support Team. London TB Service Review and Health Needs Assessment. September
2010
37
7.
Potential fragmentation of TB control
The control of TB is currently coordinated across NHS commissioner organisations, service
providers, public health teams and health protection services.
Health protection services
The UK’s Health Protection Agency (HPA) exists to protect the public from threats to their
health from infectious diseases and environmental hazards. Specifically for TB, the HPA
provides advice and information to the general public, to health professionals and to national
and local government. It supports cluster investigation and the cohort review process,
collects and analyses TB surveillance data and is involved in discharge planning for drug
resistant patients due for hospital discharge. The agency also refers patients identified by
Port Health to their local specialist TB clinic. Consultants in communicable disease control
are appointed as Proper Officers by local authorities, who have a formal role in the
enforcement of health protection legislation.
There are four Health Protection Units (HPUs) in London who deliver the HPA’s work at local
level, each with a named TB lead, and the London Regional Epidemiology Unit with a TB
epidemiologist supported by senior scientists. The overall functions of the HPA, including
those related to TB control, are expected to transfer to Public Health England (PHE) in 2012.
Contact tracing and cluster investigation
When a TB incident or outbreak is declared, the HPU, in liaison with local TB nurses, carries
out a risk assessment to determine the need for further screening and other actions to
prevent ongoing transmission. The HPU liaises with all stakeholders in the management of
the incident. London HPUs have developed standard protocols for dealing with TB incidents
in institutional settings. An example of HPU TB activity around a school incident is outlined
below.
Case study: Case of smear positive TB in a school setting
A case of smear positive TB in a child attending a secondary school is reported
to the HPU. The HPU will contact the local TB nurses to get results of the
household contact tracing as well as the possible exposure within the school and
assess the need for screening in the school. If screening is required, the HPU
TB Lead makes contact with the school and would usually set up a meeting at
the school to review the case in detail, the exposure of other students and obtain
lists of children who require screening. Letters to the students and staff are sent
by the HPU Lead who also informs the PCT and the HPA Press Officer. TB
nurses carry out the screening and inform the HPU of the results.
Contact tracing and cluster investigation
HPUs and TB nurses lead the risk assessment for the tracing of contacts of a TB case
beyond the household setting and decisions on any necessary public health action. For
clusters of TB cases with identical strain types, the HPA has recently appointed two cluster
investigators (one based in London) who work with local HPUs.
Reference laboratory services
The HPA provides reference laboratory services for TB, including species identification, drug
susceptibility determination and molecular strain typing. Its laboratories provide leadership,
38
standards and quality control for local TB diagnostic services, including microscopy and
culture and the detection of drug resistance, and lead in the development and evaluation of
new diagnostics. The HPA Reference Laboratories carry out strain typing on all TB isolates,
which identifies clusters and assists in contact investigation.
Public health services
Local public health teams work closely with commissioners, service providers and the HPA to
improve and maintain the health of local communities.
They play an important role in raising awareness of TB both within communities at risk of
developing the disease and among healthcare professionals in a position to detect it at an
early stage. Public health professionals have been key members of the existing TB networks
and in some parts of London, have developed training packages to improve the knowledge
base of non-specialist clinical staff.
In addition, public health teams play a key role in the management of local outbreaks of the
disease, often providing the funding to support additional contact tracing, screening and
vaccination activities.
Local authorities and the third sector
Although there are some individual examples of good joint working between TB services,
commissioners and local authorities, this does not appear to be the norm. Housing
departments, in particular, are not well engaged in TB control activities and could play a more
substantial role, particularly in contributing to the management of outbreaks and supporting
homeless TB patients. Likewise, environmental health services are not routinely involved,
although they often have the most relevant expertise in relation to poor living conditions and
could contribute to improved contact tracing through, for example, their local knowledge of
houses of multiple occupancy. Social services are already involved with some TB patients,
particularly those with drug and alcohol or mental health problems and yet the recent review
of TB services in London found little evidence of joint working 48.
Similarly, there are some examples of involving third sector organisations to support patients
through treatment, either commissioned directly as part of a TB care package or indirectly in
relation to other factors. There is scope to engage the third sector more systematically in the
care of TB.
Risks
The overall functions of the HPA, including those related to TB control, are expected to
transfer to Public Health England (PHE) as part of the current programme of NHS reform.
Local public health services will transfer to local authorities and responsibility for
commissioning health care services will transfer to local clinical commissioning groups. As a
result, the responsibilities for protecting the public, improving the health of local populations
and ensuring healthcare needs are met will sit in a variety of separate organisations.
There is a significant risk that this separation could impair the response to TB across London
and reduce the system’s capability to capitalise on opportunities to improve joint working and
coordination.
48
Public Health Action Support Team. London TB Service Review and Health Needs Assessment. September
2010
39
It is unlikely that health protection services will have sufficient capacity to establish and
maintain working relationships with all clinical commissioning groups and local authorities.
Public health services will have a very local focus and may struggle to respond to an
infectious disease that crosses administrative boundaries. Likewise, the capability of
individual commissioning groups to plan and procure care pathways that include multiple
providers and geographical areas will be limited.
Key issues
There is a significant risk that the separation of health protection, public health and
commissioning responsibilities could result in a fragmented approach to TB control in
London.
40
8.
Financial considerations
8.1
Costs of treatment for TB
In terms of resource requirements, treatment for TB generally falls into three categories:
‘uncomplicated’, ‘complex’ and ‘exceptional’, although there is considerable variation within
each.
Uncomplicated
An uncomplicated case involves an individual being identified relatively early and receiving a
prompt diagnosis. Treatment may include a brief inpatient spell or self-managed isolation at
home during the infectious stage of the disease (about two weeks) and a six month course of
antibiotic medication. Treatment costs for this group can be as low as £1,100 (based on one
new outpatient appointment and seven follow up attendances).
Complex
In cases where treatment is not completed, patients are at increased risk of developing drug
resistant TB, and may require lengthy hospital treatment, the use of specialist facilities and
more specialist clinical expertise. Some cases of extra-pulmonary TB are also considered
complex, either because of the additional input required to manage co-morbidities or the
extent of damage caused by the TB bacteria prior to diagnosis. The range of treatment costs
for this group varies considerably but usually exceeds £10,000.
Examples of complex cases
The treatment of patient AB with Isoniazid resistant TB cost nearly £13,000.
This included two visits to the GP, one A&E visit, 34 days isolated in a
negative pressure room, nine outpatient appointments with a further five
post-treatment follow up appointments.
The treatment of patient CD with drug sensitive TB cost over £36,000. This
included two visits to the GP, two visits to A&E, 10 days in ITU, 21 days in a
negative pressure room, 14 days as a general inpatient and 33 outpatient
appointments over the course of a year. Due to a severe side effect of one of
the drugs this patient is now registered blind and will require personal care
for the rest of their life.
Exceptional
Additionally, a minority of people with complex TB require such extensive acute treatment
and follow up care that the costs of treatment can be considered exceptional. This may be
because they have developed extensively drug resistant TB (XDR-TB) or that the damage
caused by the infection is very severe. Mortality rates in this group are high and many of
those who survive require lifelong care and support. There are a handful of these cases each
year in London and costs of treatment often exceed £100,000.
The number of multi-drug resistant TB cases is increasing in London (see section 2). Earlier
detection and better treatment completion rates would prevent the development of many
cases of drug resistance and, therefore, reduce the cost of treatment considerably.
41
8.2
Activity and finance data challenges
As TB is a notifiable disease, there is a substantial body of data available on rates of
infection, treatment completion and the demography of those affected. The primary source of
information is the London TB Register (LTBR) and the national Enhanced Tuberculosis
Surveillance system (ETS), both managed by the HPA. The HPA produces annual reports
based on the data to inform local and national TB control.
However, the analysis of financial information is more challenging. Acute trust activity is
charged to cluster contracts as outpatient and inpatient activity but is not easily identifiable.
There is no discrete tariff for TB treatment. It can be reported as respiratory activity,
infectious disease activity or paediatrics and can be hidden completely if patients are seen in
another specialty for TB related problems (e.g. neurology/neurosurgery/orthopaedics for
spinal or CNS disease or HIV clinics for TB/HIV co-infection). Inpatient treatment can include
spells in intensive therapy units – attracting a different tariff. The majority of TB patients are
treated as outpatients but the national NHS activity data sources (HES and SUS) use
insufficiently sensitive coding to identify activity by disease, focusing instead on clinic type.
Specialist TB nursing is an integral part of TB care but the way it is organised differs across
London. In some areas (e.g. Lambeth, Southwark and Lewisham) the nursing service is
provided by the community services provider and funded via that contract. In other areas
(e.g. North East London) it forms part of the acute service and is included in tariff. In North
Central London, a single specialist nursing services covers the whole sector, funded partly by
an unbundling of tariff and partly by additional investment.
The Find and Treat service is funded separately by clusters and commissioned on their
behalf by London Health Programmes. It focuses explicitly on people with high social risk
factors (homelessness, drug and alcohol problems, prison populations), providing screening
and re-engagement with services.
To complicate matters further, some areas commission services from the third sector either
directly or as a sub-contract via the local acute trust and at least one borough have a local
enhanced scheme for TB screening in primary care in place.
Published reviews of the cost-effectiveness of particular interventions (including those
considered by NICE) are predominantly academic in nature and focus on the cost to provider
rather than the price paid by commissioners. As individual care packages can vary
considerably and national tariffs are calculated using averages across whole services, there
is often little correlation between the cost of treatment and price paid when considered at
individual patient level.
8.3
Financial modelling
It has not been possible to identify actual NHS spend on TB services for the reasons outlined
above. A comparative financial model has, however, been developed (Appendix B). The
following constructs have been developed from an analysis of HPA surveillance data, a
detailed analysis of activity in a few London TB services and Hospital Episode Statistics
(HES) data.

64% of TB patients are treated entirely as outpatients and 36% require inpatient
treatment.

2% of all TB cases require complex inpatient treatment.

70% of those admitted require five days or less inpatient treatment (24% of the total).
42

30% of those admitted require between six and 33 days inpatient treatment (10% of the
total).

On average, outpatient treatment comprises one first appointment and seven follow up
appointments for uncomplicated TB.

On average, patients requiring complex inpatient treatment require 20 outpatient
appointments.

On average, for every confirmed TB case, nine suspected cases will be seen in
outpatients.
The constructs have been applied to the known TB rates for each borough in London and
associated costs calculated. Cross-referencing between data sources has shown that this
model is reliable in identifying comparative spend. It does not, however, show actual spend
for a number of reasons.

Complex cases have been distributed proportionally across all clusters. Although there is
no evidence to suggest clustering of complex cases, the actual incidence will be more
random.

HRG4 tariffs have been used consistently for inpatient and outpatient spells. In reality,
provider trusts use a variety of codes with different associated tariffs e.g. respiratory,
infectious diseases.

The model does not include multiple admissions to different specialties although individual
case studies show this is not uncommon.

The additional costs of paediatric treatment are not included (all patients are assumed to
be adults). This is because it was impossible to correlate national HPA data with local
activity data. Paediatric TB is treated within paediatric infectious disease units.

The model does not include additional costs for ITU spells.

All figures are exclusive of market forces factor.

The costs of specialist staff funded outside tariff are shown as actual costs rather than
contract prices.
As a result, the total spend on TB services shown is an underestimate. A detailed analysis of
activity in North Central and North West London suggests actual total spend is in the region
of £25million per annum for London as a whole.
Figure 13 shows the commissioner spend per notification and the 2010 TB rates. There is
little correlation between the two. It might be expected, for example, that areas with a higher
incidence of TB would provide additional investment to tackle the problem or that in areas
with a low incidence, the costs of maintaining a viable service were higher. Neither of these
appears to be true.
Figure 14 shows that the majority of cost is associated with outpatient activity. There is no
evidence to suggest that a greater proportion of current inpatient activity could be managed
as outpatients as only patients requiring isolation or with complications or comorbidities are
admitted. Improving treatment completion rates and the subsequent numbers of complex
cases would, however, reduce the proportion of activity that requires inpatient treatment.
There is also scope to reduce expenditure on community services by adopting a similar
approach to unbundling tariffs as North Central London (see section 6.2).
43
Figure 13 – Comparative commissioner spend per TB notification and sector TB rates,
2010
Figure 14 – Proportion of TB spend by service type
Expenditure on the pan-London Find and Treat service is considered in more detail in a
separate paper. A recent evaluation by the HPA demonstrated the cost effectiveness of this
service and showed that decommissioning it would result in a net increase in expenditure for
the NHS of between £360K and £640K per annum.
44
Key issues
The number of multi-drug-resistant cases of TB, and therefore the cost of TB treatment, in
London is increasing and is likely to continue to increase unless treatment completion rates
and early detection improve.
Much of the cost of treating TB is hidden in unattributable outpatient activity, but the total
cost is estimated at £25m a year.
Those parts of London that have invested in specialist non-medical teams have seen a
reduction in TB rates.
Improving early detection and treatment completion rates would, in turn, reduce the number
of TB cases requiring complex care and the overall cost of TB services.
45
9.
Summary of key points
The extent of TB in London

London as a whole has very high rates of TB. Over time there has been a significant
increase in rates and number of cases of TB. The rate in some boroughs is more than
twice that of the definition used by the WHO for high rates.

The majority of cases are in people born overseas, although it often takes several years
for them to become symptomatic.

London has large numbers of socially and medically complex cases of TB. This includes
those with HIV infection as well as risk factors for poor treatment completion and onward
transmission to others such as homelessness, drug or alcohol problems, a history of
imprisonment or mental health issues.

The majority of cases in London are caused by the reactivation of latent TB, the
identification of which is costly and the treatment of which carries a clinical risk. Many
individuals who start treatment for this do not complete their prescribed course.
International comparisons

London has the highest rate of TB of any major city in Western Europe.

There have been some significant local initiatives in other European cities that have
contributed to a reduction in their TB rate and should inform the model of care for London.

New York was in a similar position to London in the early 1990s and brought its TB rate
down through investment in services, a multi-faceted strategy and a coordinated, multiagency effort.
Policy framework

The care and treatment of TB is subject to several important pieces of guidance, although
both compliance with existing guidelines and implementation of new recommendations is
patchy across London.
Delays in detection and referral

Poorly informed and inaccurate beliefs about TB in the community is delaying early
presentation of the disease and increasing the risk of transmission.

A lack of understanding of the disease and its symptoms by healthcare professionals
often results in delayed diagnosis or misdiagnosis.

Current screening guidelines for TB are neither applied consistently across London nor
cost effective in detecting the disease.
Variability of commissioning

There is significant variation in the configuration and governance of the five TB networks
across London. The majority have few links to commissioning clusters and no
performance management role.

Those managing acute contracts in clusters have little knowledge of TB and, in general,
poor access to specialist expertise. As a result, the performance management of
providers fails to take account of the London TB metrics or the key features of TB control.
46

Although provider trust income increases as the TB rate rises, the capacity of TB services
often does not.

It is financially advantageous for the NHS to fund temporary accommodation rather than
hospital stays for a small group of TB patients. Although an ad hoc process has evolved
to facilitate this, it can be lengthy and is not subject to any systematic control.
Variability of service provision

Current staffing profiles within TB services often do not take account of local incidence,
the characteristics of the local population or the skill level required to deliver different
services.

The provision of directly observed therapy (DOT) varies, but apparently not in relation to
need.

The approach to tracing contacts of people with infectious TB varies, with no systematic
collection of performance or outcome data.

Uptake of BCG vaccination ranges from 24% to 80% in the parts of London where it
should be offered universally.
Risk of fragmentation

There is a significant risk that the separation of health protection, public health and
commissioning responsibilities could result in a fragmented approach to TB control in
London.
Financial considerations

The number of multi-drug-resistant cases of TB, and therefore the cost of TB treatment, in
London is increasing and is likely to continue to increase unless treatment completion
rates and early detection improve.

Much of the cost of treating TB is hidden in unattributable outpatient activity, but the total
cost is estimated at £25m a year.

Those parts of London that have invested in specialist non-medical teams have seen a
reduction in TB rates.

Improving early detection and treatment completion rates would, in turn, reduce the
number of TB cases requiring complex care and the overall cost of TB services.
47
APPENDIX A: Summary of progress against London TB Metrics
48
Table : Proportion of new TB notifications in London residents
completing treatment within 1 year of notification by year in which they
completed treatment by sector of notifying clinic
- reported to the London TB Register
% of all TB cases completing treatment
Notifying Clinic
2007
2008
2009
2010
North Central
Edgware TB Clinic
Great Ormond Street Hospital
North Middlesex Hospital
Royal Free
UCLH TB Service
Whittington
North Central Total
North East
86.3%
83.3%
81.0%
88.9%
84.6%
82.8%
84.0%
86.3%
85.7%
84.4%
77.6%
80.7%
88.4%
83.3%
83.1%
61.5%
84.9%
74.4%
82.4%
79.1%
81.0%
91.7%
46.2%
89.7%
86.1%
86.7%
89.2%
87.6%
Havering TB Service
Homerton
King George Hospital
London Chest Hospital
Newham Chest Clinic
Whipps Cross University Hospital
North East Total
North West
Central Middlesex Hospital
Charing Cross Hospital
Chelsea & Westminster
Ealing Hospital
Hammersmith Hospital (ICH NHS Trust)
Hillingdon Hospital
Northwick Park Hospital
Royal Brompton
St Mary's Hospital (ICH NHS Trust)
West Middlesex University Hospital
North West Total
South East
73.8%
83.6%
83.6%
82.9%
82.3%
87.0%
83.1%
77.6%
88.5%
84.4%
84.8%
86.2%
89.9%
85.9%
83.3%
79.5%
78.3%
80.5%
87.3%
93.7%
83.7%
77.3%
87.2%
85.2%
79.1%
87.3%
95.0%
85.1%
88.6%
82.3%
84.9%
79.7%
78.5%
74.5%
88.8%
20.0%
87.6%
60.4%
81.4%
82.2%
84.8%
88.2%
75.5%
88.7%
89.0%
87.4%
66.7%
87.5%
76.9%
83.8%
89.9%
80.4%
88.5%
86.1%
75.0%
80.5%
89.4%
85.2%
61.5%
83.4%
88.6%
85.2%
90.0%
89.7%
84.0%
82.8%
88.4%
50.0%
91.0%
77.2%
86.7%
Bromley TB Service
Guy's & St Thomas' Hospitals
King's College Hospital
Queen Elizabeth Hospital
Queen Mary's Hospital
University Hospital Lewisham
South East Total
South West
Croydon University Hospital
Epsom & St Helier NHS Trust
Kingston Hospital
St George's Hospital
South West Total
Non-LTBR Clinics*
75.0%
81.8%
75.9%
84.8%
92.3%
92.9%
82.5%
81.8%
87.2%
88.9%
68.4%
91.7%
77.3%
81.4%
93.3%
82.3%
91.6%
86.9%
80.0%
85.1%
86.3%
90.0%
87.0%
92.1%
88.6%
100.0%
87.7%
88.9%
88.9%
87.2%
74.4%
81.5%
83.6%
42.9%
79.4%
91.8%
71.9%
83.4%
82.4%
77.8%
84.8%
89.2%
77.8%
86.3%
85.3%
60.0%
88.1%
84.8%
88.2%
86.2%
86.9%
63.6%
London Totals
82.6%
83.8%
83.7%
86.6%
>=85%
80.0 - 84.9%
<80%
49
50
APPENDIX B: Comparative Financial Modelling
OUTPATIENT ESTIMATED COSTS
TB Adult TB Adult
patient
patient
Complex
without
with
Adult
inpatient inpatient patient
care
care
care
64%
34%
2%
PCT
Cluster
2010 TB rate
per 100,000
2010 TB
Barnet PCT
NCL
33.8
116
74.43
39.54
2.33
Camden PCT
NCL
30.3
70
44.80
23.80
1.40
Enfield PCT
NCL
32.6
95
60.80
32.30
1.90
Islington PCT
NCL
32.8
63
40.32
21.42
1.26
Haringey Teaching PCT
NCL
45.2
102
65.28
34.68
2.04
Barking and Dagenham PCT
TB Adult
patient
without
inpatient
care (1st
Appt)
Other
TB Adult
patients TB
TB Adult
TB Adult
Complex
Complex
TB Adult
patient without IP care and patient with patient with
Adult
Adult
patient without inpatient care
Complex
inpatient
inpatient
patient
patient
inpatient care (do not have Adult (do not care (1st care (Follow care (1st care (follow TOTAL EST
(Follow Up)
TB)
have TB)
OP Appt)
Up Appt)
appt)
up appt) OP COSTS (£)
1
7
9
9
1
7
1
20
INPATIENT ESTIMATED COSTS
TB Adult
patient with
TB Adult inpatient care
patient with
with
Standard TB
complex
complications Adult patient
inpatient
and/or
with inpatient
care (inc. comorbidities care (5 days TOTAL Est IP
MDR)
(>5 days)
or less)
(£)
2%
10%
24%
£242
£110
£242
£242
£242
£110
£242
£110
£18,013
£10,842
£14,714
£9,757
£15,798
£57,315
£34,496
£46,816
£31,046
£50,266
£162,119
£97,574
£132,422
£87,817
£142,180
£91,192
£54,886
£74,488
£49,397
£79,976
£9,570
£5,760
£7,817
£5,184
£8,393
£30,449
£18,326
£24,871
£16,493
£26,704
£563
£339
£460
£305
£494
£5,117
£3,080
£4,180
£2,772
£4,488
£374,338
£225,302
£305,767
£202,772
£328,297
£29,516
£17,765
£24,109
£15,988
£25,886
£42,968
£78,197
£25,861
£47,065
£90,690
£35,097
£63,873
£123,080
£23,275
£42,358
£81,621
£37,683
£68,580
£132,149
£10,687
£14,714
£23,697
£18,276
£2,168
£47,858
£21,838
£34,003
£46,816
£75,398
£58,150
£6,899
£152,275
£69,485
£96,180
£132,422
£213,270
£164,483
£19,515
£430,721
£196,543
£54,102
£74,488
£119,964
£92,521
£10,977
£242,281
£110,555
£5,677
£7,817
£12,589
£9,709
£1,152
£25,425
£11,601
£18,064
£24,871
£40,055
£30,892
£3,665
£80,896
£36,914
£334
£460
£741
£571
£68
£1,496
£682
£3,036
£4,180
£6,732
£5,192
£616
£13,596
£6,204
£222,083
£305,767
£492,446
£379,795
£45,060
£994,547
£453,823
£17,511
£24,109
£38,828
£29,946
£3,553
£78,418
£35,783
£25,492
£46,392
£89,395
£35,097
£63,873
£123,080
£56,525
£102,870
£198,223
£43,594
£79,337
£152,878
£5,172
£9,413
£18,138
£114,158
£207,756
£400,332
£52,092
£94,801
£182,676
£33,609
£9,138
£10,067
£6,040
£46,619
£21,838
£19,360
£29,737
£106,938
£29,075
£32,032
£19,219
£148,333
£69,485
£61,600
£94,618
£302,481
£82,241
£90,605
£54,363
£419,570
£196,543
£174,240
£267,633
£170,145
£46,261
£50,965
£30,579
£236,008
£110,555
£98,010
£150,543
£17,855
£4,855
£5,348
£3,209
£24,766
£11,601
£10,285
£15,798
£56,811
£15,446
£17,017
£10,210
£78,802
£36,914
£32,725
£50,266
£1,050
£286
£315
£189
£1,457
£682
£605
£929
£9,548
£2,596
£2,860
£1,716
£13,244
£6,204
£5,500
£8,448
£698,436
£189,897
£209,209
£125,525
£968,799
£453,823
£402,325
£617,971
£55,070
£14,973
£16,496
£9,897
£76,388
£35,783
£31,722
£48,726
£80,169
£145,900
£281,140
£21,797
£39,669
£76,439
£24,014
£43,703
£84,212
£14,408
£26,222
£50,527
£111,203
£202,377
£389,968
£52,092
£94,801
£182,676
£46,181
£84,044
£161,947
£70,933
£129,091
£248,750
£2,943
£4,956
£19,050
£17,966
£11,771
£14,868
£9,363
£15,770
£60,614
£57,165
£37,453
£47,309
£26,484
£44,605
£171,452
£161,695
£105,938
£133,816
£14,898
£25,091
£96,442
£90,953
£59,590
£75,272
£1,563
£2,633
£10,120
£9,544
£6,253
£7,899
£4,974
£8,378
£32,201
£30,369
£19,897
£25,133
£92
£155
£595
£561
£368
£465
£836
£1,408
£5,412
£5,104
£3,344
£4,224
£61,153
£102,995
£395,888
£373,358
£244,614
£308,986
£4,822
£8,121
£31,215
£29,438
£19,287
£24,363
£24,616
£55,686
£43,366
£49,280
£17,741
£9,363
£157,513
£122,665
£139,392
£50,181
£26,484
£88,601
£68,999
£78,408
£28,227
£14,898
£9,298
£7,241
£8,228
£2,962
£1,563
£29,583
£23,038
£26,180
£9,425
£4,974
£547
£426
£484
£174
£92
£4,972
£3,872
£4,400
£1,584
£836
£1,627,376
£4,603,148
£2,589,271
£271,714
£864,543
£15,983
£145,301
£363,702
£283,237
£321,860
£115,870
£61,153
£10,628,797
NEL
39.3
69
44.16
23.46
1.38
City and Hackney Teaching PCT NEL
41.8
95
60.80
32.30
1.90
Tower Hamlets PCT
NEL
65.2
153
97.92
52.02
3.06
Waltham Forest PCT
NEL
52.6
118
75.52
40.12
2.36
Havering PCT
NEL
6.0
14
8.96
4.76
0.28
Newham PCT
NEL
126.5
309
197.76
105.06
6.18
Redbridge PCT
NEL
52.7
141
90.24
47.94
2.82
Ealing PCT
NWL
68.5
217
138.88
73.78
4.34
Hammersmith and Fulham PCT
NWL
34.8
59
37.76
20.06
1.18
Westminster PCT
NWL
26.1
65
41.60
22.10
1.30
Kensington and Chelsea PCT
NWL
23.0
39
24.96
13.26
0.78
Brent Teaching PCT
NWL
117.8
301
192.64
102.34
6.02
Harrow PCT
NWL
61.8
141
90.24
47.94
2.82
Hillingdon PCT
NWL
47.6
125
80.00
42.50
2.50
Hounslow PCT
NWL
82.0
192
122.88
65.28
3.84
Bexley Care Trust
SEL
8.4
19
12.16
6.46
0.38
Bromley PCT
SEL
10.3
32
20.48
10.88
0.64
Greenwich Teaching PCT
SEL
54.4
123
78.72
41.82
2.46
Lambeth PCT
SEL
40.9
116
74.24
39.44
2.32
Lewisham PCT
SEL
28.7
76
48.64
25.84
1.52
Southwark PCT
SEL
33.6
96
61.44
32.64
1.92
Croydon PCT
SWL
33.0
113
72.32
38.42
2.26
Sutton and Merton PCT
SWL
22.1
88
56.32
29.92
1.76
Wandsworth PCT
SWL
34.9
100
64.00
34.00
2.00
Kingston PCT
SWL
21.6
36
23.04
12.24
0.72
Richmond and Twickenham PCT SWL
10.1
19
12.16
6.46
0.38
£17,501
£13,629
£15,488
£5,576
£2,943
3,302
2,113
1,123
66
£511,461
£12,689
£3,622
Community
Staff Costs
(additional to
tariff)
Find &
Treat
Allocation
£791,734
£139,720
£0
£178,135
£976,488
£198,804
£1,125,125
£170,927
£0
£129,008
TOTAL 2010
TB Costs
£2,825
£150,681
£7,019
£12,775
£11,822
£21,515
£41,458
£45,442
£82,699
£159,356
£42,856
£77,993
£150,287
£28,078
£51,099
£98,464
£35,467
£64,546
£124,375
£28,677
£22,333
£25,378
£9,136
£4,822
£41,747
£75,976
£146,400
£32,511
£59,167
£114,011
£36,944
£67,235
£129,557
£13,300
£24,205
£46,641
£7,019
£12,775
£24,616
£838,059
£1,220,017
£2,220,304
£4,278,380
£2,893,347
£816,594
Cluster
NCL
34.8
446
£1,436,476
£578,221
£791,734
£139,720
£2,946,150
NEL
56
899
£2,893,521
£1,164,721
£0
£178,135
£4,236,377
60.4
1,139
£3,665,985
£1,475,659
£976,488
£198,804
£6,316,936
29
462
£1,486,993
£598,555
£1,125,125
£170,927
£3,381,600
SWL
25.7
356
£1,145,822
£461,224
£0
£129,008
£1,736,054
TOTAL
42.6
3,302
£10,628,797
£4,278,380
£2,893,347
£816,594
£18,617,118
NWL
SEL
APPENDIX C: Membership of the TB Commissioning Board and
Clinical Working Group
We would like to thank the following for their contribution to the development of this
document.
TB Commissioning Board
Nick Relph
Chief Executive, Outer North West London (SRO)
William Lynn
Consultant in Infectious Diseases, Ealing Hospital
(Clinical Director)
Deepti Kumar
Health Protection Agency, London
Ibrahim Abubakar
TB Section Head, Health Protection Agency, London
Nourieh Hoveyda
Consultant in Public Health, NHS Richmond and
Twickenham
Simon Bowen
Acting Director of Public Health & Regeneration, NHS
Brent
Pui-Ling Li
Deputy Regional Director of Public Health, NHS London
Jennie Friswell
Gerry Robb
Head of Workforce Planning and Information, NHS
London
Infectious Diseases Policy team, Department of Health
Angela Bhan
Director Public Health, NHS Bromley
TB Clinical Working Group
Liliya Skotarenko
Penelope Toff
Infectious Diseases Policy team, Department of Health
Consultant in Public Health, NHS Brent
Derek Macallan
Professor of Infectious Disease and Medicine, St
Georges, University of London
Marc Lipman
Consultant in HIV and Respiratory Medicine, Royal
Free Hospital
Chris Griffiths
GP (Hackney) and Professor of Primary Care, Queen
Mary, University of London
Onn Min Kon
Consultant Respiratory Physician, Imperial Healthcare
Trust
Jack Barker
Chest Physician, Kings College Hospital
Helen Booth
Consultant Respiratory Physician, University College
London Hospital
Delane Shingadia
Consultant in Paediatric Infectious Diseases, Great
Ormond Street Hospital
Sue Dart
Clinical Team Leader, North Central London TB Service
Hanna Kaur
TB Nurse, Hillingdon Hospital
Rosemary Khan
TB Nurse, Croydon Health
Stella Abiona
TB Nurse, Queen Elizabeth Hospital
Bridget Hall
TB Nurse, Barking, Havering and Redbridge Hospitals
Veronica White
Consultant in Respiratory Medicine, Barts and the
London
Wazi Khan
NWL Network Coordinator and NWL Health Protection
Unit
Sam Perkins
SEL Network Coordinator and SEL Health Protection
Unit
Dominik Zenner
Consultant of Communicable Disease Control, NWL
Health Protection Unit
Sudy Anaraki
Consultant of Communicable Disease Control, NEL and
NCL Health Protection Unit
Jayshree Dave
Microbiologist, Health Protection Agency
Surinder Tamne
TB Section, CfI, Health Protection agency
Sarah Anderson
Regional Epidemiologist, Health Protection Agency
London
Charlotte Anderson
Epidemiologist, London HPA
Elias Phiri
Head of UK Awareness Programmes, TB Alert
Sally Dootson
Operational Manager, Royal Free Hosp
Vanya Gant
Divisional Clinical Director for Infection, UCLH
Eamonn O’Moore
Consultant, Offender Health, Department of Health
David Olapoju
Service user, TB patient group, TB Alert
Ann Denis
Service user, TB patient group, TB Alert
Heather Millburn
GSTT
Anita Roche
Consultant in communicable disease control, SWL
Health Protection Unit
53