Select Committee on Science and Technology Minutes of Evidence

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" approach

  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 on.

  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 policy

  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 of services.

    —  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 local population.

    —  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

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