Memorandum by Gini Williams
I would like to submit evidence relating to
tuberculosis (TB) to the House of Lords Science and Technology
Sub-Committee I: Fighting Infection. I have a long-running interest
in TB, which began when I became a TB Nurse Specialist in 1993.
I am now a lecturer in TB and Public Health at City University
and a Trustee for the charity, "TB Alert". I also run
the London TB Nurse Development Programme and chair the Nursing
and Allied Professional Section of the International Union Against
TB and Lung Disease (IUATLD).
1. What are the main problems facing the
surveillance, treatment and prevention of TB in the United Kingdom?
(a) Rising trends
Over the last few years we have seen ever more
outbreaks and a year on year increase in the incidence of TB in
the UK. Clearly if we continue to approach TB in the same way
we will see a continuation in these trends. Rising levels of TB
can be associated with the growth of the disease in the poorest
parts of the UK and the increasing number of TB and HIV co-infected
cases. This in turn merely reflects what is happening elsewhere
in the world.
(b) Fragmentation of services
In spite of having clinical guidelines which
are regularly updated by the British Thoracic Society and recommendations
published by the Department of Health, TB services vary greatly
in different areas. The dismantling of district structures have
increased the fragmentation of services leading to a great variation
in equity and access and making coherent reform very difficult.
These inconsistencies coupled with the decreased
level of awareness among health care workers in general can lead
to delays in diagnosis as referral processes are unclear and the
level of suspicion for TB may be very low. Specific tests are
needed to identify the disease so if you do not think of TB as
a differential diagnosis you will not find it.
(c) Lack of a "whole systems"
If we are to control the disease effectively
we have to ensure that cases are found as early as possible and
that treatment is delivered in an accessible and acceptable way
to enable treatment completion. People with TB often have complex
needs and it can be very difficult for them to access health care
for both diagnosis and the full course of treatment.
Incomplete or interrupted treatment can lead
to prolonged infectiousness and drug resistance. We have to ensure
that all of our services are flexible, patient-centred and integrated
with a variety of local statutory and voluntary organisations.
There are very good examples, particularly in Newham and Camden,
of the benefits of working collaboratively with local authorities
and voluntary services. The emphasis on the physical disease may
fail to engage patients who have other more pressing priorities
such as housing, loss of work, drug or alcohol addiction and so
Surveillance focuses on the collection of disease-related
and demographic data and assesses only clinical outcomes. While
we continue to ignore the social factors, such as poverty and
addiction, which we know to have an impact on the disease, we
will fail to manage TB effectively in the most vulnerable groups.
(d) The impact of other government
A change to the Nationality, Immigration and
Asylum Act 2002 (NIA Act) will mean that from 8 January 2002,
asylum seekers who have not immediately applied for asylum on
entering the UK will no longer be eligible to apply for support
from the National Asylum Support Service (NASS). The Refugee Council
is concerned that many in-country applicants and those who are
unaware of the system will fall outside the net.
This will increase the already rising number
of asylum seekers going to homeless hostels for shelter and lead
to an exacerbation of a variety of health problems through destitution.
Many asylum seekers come from areas where TB is prevalent and
they may enter the UK having been exposed to TB in their country
of origin. Having remained healthy for a number of years, the
difficulties they face on arrival, including poor access to food
and accommodation, may well lead to them developing active disease.
Hostels and homeless shelters will provide an excellent environment
for the transmission of TB among their clients who in turn tend
to have the poorest access to health care.
The dispersal of asylum seekers has already
caused difficulties when in a number of cases, patients on TB
treatment have had their treatment interrupted or become lost
to follow up when they have been moved to another part of the
country at short notice.
2. Will these problems be adequately addressed
by the Government's recent infectious disease strategy, Getting
Ahead of the Curve?
"Getting Ahead of the Curve" acknowledges
the concern regarding the growth in rates of TB in the UK and
presents us with an opportunity to develop an action plan to address
the situation strategically with an emphasis on patient-centred
care. Efforts have already been made in London to create a more
equitable and co-ordinated service and a number of targets have
been set to encourage health authorities and PCTs to make TB a
greater priority. Two of the main emphases have been on improving
surveillance through the development of a London-wide TB register
and increasing the number of TB Nursing posts. It is often difficult
to recruit and retain nurses as the grading structure is not as
attractive as it is in other specialist areas.
The action plan gives us the opportunity to
create a coherent public health response to the problem but if
the final product is not sufficiently detailed, both the budget
and the strategy will be inadequate for the necessary progress
to be made. It is essential for the action plan to address the
structural constraints and support flexibility across organisational
and geographical boundaries. It must also be performance managed
at every level so that government departments, strategic health
authorities, primary care trusts, local authorities, and clinicians
fulfil their particular responsibilities.
3. Is the United Kingdom benefiting from
advances in surveillance and diagnostic technologies; if not,
what are the obstacles to its doing so?
Enhanced surveillance offers us a good opportunity
to identify the highest risk groups so that screening can be more
effectively targeted. There are also improved screening methods
available such as mobile digital x-ray units, which although expensive
to purchase, are very easy to use, involve low doses of radiation
and, with the right staffing, can give immediate results on up
to three hundred chest x-rays in a day.
The main obstacle again is the lack of a coherent
structure. It may be cost-effective to have a screening van to
cover a wide geographical area but services need to be working
well together with a consistent approach to service delivery in
order to implement screening effectively.
4. Which infectious diseases pose the biggest
threats in the foreseeable future?
Although TB is not one of the UK's most threatening
infectious diseases it is one of the world's leading infectious
killers which is an outrage of itself considering that it is a
curable disease. As long as the global situation remains as it
is and we take no new steps to manage the situation in the UK,
we can expect to see the situation deteriorate. There is a strong
argument that it is in our own self interest to support interventions
in endemic countries through DfID projects and the "Global
Fund against AIDS, TB and Malaria".
5. What policy interventions would have the
greatest impact on preventing outbreaks of and damage caused by
infectious disease in the United Kingdom?
The government's action plan represents
a good opportunity to address the structural and organisational
issues which currently obstruct the development of a coherent
public health response to TB in the UK. It is difficult to see
how this might be achieved without additional investment, which
would, in turn increase the potential for managing performance
at different levels.
One possible way of achieving this
would be for the Health Protection Agency to employ a co-ordinator
in each strategic health authority area, who would be responsible
for implementing the TB action plan in collaboration with all
the local stakeholders. This could be based on a similar model
for cancer, coronary heart disease and mental health. In North
East and North West London TB sector co-ordinators have already
been working across boundaries to improve equity and reduce fragmentation
A consistent patient-centred approach
is required to improve equity of access and address the complex
needs of the client group. This will require that strategic health
authorities, PCTs, clinicians, and local authorities sign up to
providing coherent and equitable TB services appropriate to the
Working partnerships from ministerial
departments downwards are needed to support the development of
a coherent public health response to the rising incidence of TB.
At a ministerial level attempts should be made to ensure that
policy decisions in one department do not have a detrimental effect
on what is trying to be achieved by another. At a local level
there may be opportunities for joint appointments to be made between
local authority and health services.
Making treatment free of prescription
charges would be beneficial to both staff and patients. People
on low pay may be able to afford one or two prescriptions but
multiple prescriptions over at least six months may be very difficult.
Many nurses have been aware of problems experienced by their patients
and attempts are made to provide free treatment locally in the
interests of the patients and the community at large. In reality
only a small investment would be needed to provide free TB treatment
for all and overcome the risks posed by badly treated TB.
Improved career structure for nurses
with grading in line with other clinical specialties will have
a positive impact on recruitment and retention.
I would be happy to answer any further questions
or provide more detail on anything which is currently unclear.
20 December 2002