§ Dr. Howard Stoate (Dartford)I feel fortunate to have secured a debate on the national health service and people with chronic long-term illness. As a former general practitioner—
§ Madam Deputy Speaker (Mrs. Gwyneth Dunwoody)Order. Hon. Members and members of the general public must leave the Room as quietly and, preferably, as safely as possible.
§ Dr. StoateAs Someone who continues to practice in the NHS, I think that the subject is important and I feel privileged to raise it in the Chamber. I recently heard an interesting definition of the difference between hospital medicine and primary care. In hospital medicine, the conditions stay the same and the faces change; in primary care, the people stay the same and the conditions change. That is the point—the vast majority of chronic illness is managed in primary care. More than 90 per cent. of people using the NHS access it through primary care. Most people with chronic long-term illness are managed and treated in primary care.
In the United Kingdom, one in three people suffers from a chronic disability or illness, but the subject has not impinged enough on the recent debate on the future of the health service. As a recent World Health Organisation report commented:
If a new virus were expected to infect millions of citizens on the scale that chronic illness affects people world wide today, a public campaign would be launched immediately to mobilise scientific resources.Perhaps because chronic illness is so pervasive and familiar to us all, we have ceased to deal with it with the urgency that it deserves. Many people view chronic complaints such as arthritis as a condition that is the natural consequence of old age. National voluntary organisations, such as the British League against Rheumatism and the National Society for the Relief of Paget's Disease, have experienced enormous difficulty in persuading the public to view the complaints as genuine diseases, rather than simply afflictions of the old.The majority of people in this country perceive disease as something that is acute, treatable and of specific duration. Chronic complaints rarely fulfil that definition but, although many conditions are life threatening, they seriously affect the quality of an individual's life, preventing them from doing many of the things that most of us take for granted.
There is no reason why the maintenance of individuals' quality of life and the management of the pain and suffering experienced by those with long-term illness should not be seen as a priority in the health service on a par with acute conditions. Unless that happens, there is little chance of persuading the public of the impact and importance of long-term conditions.
The interest of people with long-term medical needs has been represented for the past 10 years by the Long-term Medical Conditions Alliance. That is the umbrella body for national voluntary organisations working to meet the needs of such people. More than 700,000 people belong to its 111 member organisations. It aims to ensure that the voice of people with long-term illness is heard and to provide support to its members.
93WH Working to identify and distil common issues across a wide range of conditions has been a considerable task, for which the LMCA and its director, Judy Wilson, deserve the highest praise. The efforts to promote the interests of the members at national level and to instigate a debate on the subject have been extremely important and have served to identify and focus attention on the key areas of health service provision that are in need of review. Despite that huge contribution, many patient organisations feel that they are not always valued or sufficiently used by professionals or policy makers in the NHS.
The organisations have a large role to play in the shaping and monitoring of health service policy development. Ensuring that their role in supporting the health service forms part of a long-term strategy, in line with the 1998 compact on relations between the voluntary sector and the Government, would help to strengthen the relationship between the sector and the health service. The experience of people suffering from chronic illness confirms that, although the NHS is skilled at treating people with short-term or acute illness, there is no consistent, reliable mechanism to coordinate their treatment, which is based both at hospital and in the community.
Clearly, links between services and their integration need to be improved, both on the ground and at policy and planning level—between health and social services, acute and community services, and primary and secondary care. Greater emphasis on multi-disciplinarity is also necessary, so that the care of each individual is not focused exclusively on the medical model of care. Continuity between medical services for adolescents, adults and the elderly is not properly managed. We need a more cohesive and integrated approach.
Despite the prevalence of chronic illness, the general public and even health professionals can be ignorant about what it is and how it should be tackled. Sufferers of chronic illness, including people with physical and mental ill health, are frequently on the margins of society. We lack the knowledge and experience of their conditions that would allow them to play a full and active part in society, with rights and responsibilities. That sense of isolation and alienation needs to be challenged.
Long-term chronic illness does not merely have an impact on people's health; it affects their careers, relationships and social existence. Many people feel obliged to give up their jobs or feel severely constrained in what jobs they can take. They often need employers to be flexible, but many companies struggle, or are unwilling, to provide that support. It is vital that the problem is recognised by the Government and that ways are found to relieve specific pressures and tackle the challenges faced by people who suffer from long-term illness.
Chronic illness should not be confused with long-term care. A small number of people, especially the elderly, may need long-term care at the end of their lives, but most people with chronic illnesses are not in permanent care and are responsible for the management of their illnesses. They often receive insufficient support and 94WH guidance because their general practitioners and other health professionals lack information about their condition and how best to live with it. We must ensure that doctors have access to basic information about conditions and that they are aware of local support groups and national voluntary organisations that help sufferers.
The LMCA does a valuable job on behalf of people with long-term illness. It also publicises the work of its 111 member organisations. Nevertheless, it urgently needs the active support of the Government, the medical establishment and the wider community to ensure that the issue is given national prominence. Such specialist groups recognise that helping people with chronic illness involves more than diagnosis, treatment, cure and discharge. The health service is effective at servicing a condition by providing the requisite drugs and treatment to stabilise the advancement of chronic illness, but it is not as well prepared to deal with the wider issue of helping an individual achieve a full quality of life and take responsibility for his or her well-being.
In addition, people with chronic long-term illnesses often suffer from more than one complaint, although the severity of each condition fluctuates and is rarely stable. The acute sector or general practice is not always equipped to cope with the nature of long-term illness. Part of the problem is that the consultation procedure treats patients as consumers rather than as proactive individuals who are capable of taking a lead in their own treatment. The person with a long-term condition should be fully involved in deciding how treatment should be administered. He or she should be more than just a passive recipient of treatment.
The problem has been recognised by the Government who set up the expert patients task force, which is chaired by the chief medical officer. Its purpose is to design the new expert patients programme to consider the role that chronic disease sufferers can play as experts in managing their diseases. An expert patients programme for arthritis has been piloted and the Government are funding a programme for people with different conditions, which is co-ordinated by the LMCA. The programme arms patients with the knowledge, skills and motivations needed to take control of their illnesses and manage their symptoms. It allows people to develop skills to control feelings of anger and depression and to manage diet and exercise routines. Such help means that people will go to the doctor less often, use services differently and feel physically and mentally better.
The programme could be extended so that the sufferers of long-term medical conditions play a more active role in the training of health professionals. That would enable them to treat sufferers more effectively. Given the wealth of experience and expertise that expert patients have, it is not unrealistic that they should have a greater role in shaping how patients are treated. Patients are often the best experts. We could all learn from and share in their knowledge.
Although the programme is valuable, and despite the publication of the White Paper "Saving Lives: Our Healthier Nation" and coverage in the national press, too few people are aware of it. Aside from question of publicity, a key issue is that of service variation by geography and by age and background. It is a matter of concern to all national voluntary organisations. People 95WH with long-term conditions should in principle have equal access to the most effective medical and non-medical treatments, drugs and complementary therapies, where appropriate. I am sure that the work of the National Institute for Clinical Excellence will ensure that, as new treatments become available and new therapies are evaluated, they will be made available to all. I welcome that development and I expect the future to show us what can be achieved.
Despite what I have said, diagnosis and referral by GPs still varies substantially, while access to specialist clinics and services, including nursing care and physiotherapy, often depends on where one lives. There is also evidence that older people and those from certain ethnic minority or lower income groups do not enjoy equality of access with the rest of the community.
At a recent forum on the health of ethnic minorities in the borough of Gravesham attended by my hon. Friend the Member for Gravesham (Mr. Pond) and I, I raised ethnic minorities' access to health services. Too often, cultural and linguistic barriers between the health service and the ethnic minority communities prevent the latter from using the health service to the full. Often, someone whose first language is not English finds it difficult to understand explanations, or to obtain suitable written information. Gaining access to, using and benefiting from services is thus more difficult. Consequently, the illnesses of people from ethnic communities are sometimes diagnosed and treated later than those of other people. Efforts have been made to improve consultation with ethnic minorities and to bring services, including screening services, into the community. We need to build on that success, specifically with respect to long-term medical care.
Before this morning's debate I made a presentation at the Royal Society of Medicine on the Government's national health service framework for coronary heart disease, as part of cholesterol awareness day. I met my colleague Dr. Ian Banks, who is chairman of the men's health forum and a spokesman for the British Medical Association on men's health issues. We discussed the fact that men often find it difficult to obtain access to health services. They do not necessarily make the best use of GP services, go for screening or otherwise get the best from the service.
Many of the changes that are needed would involve changes of emphasis and education rather than huge amounts of money. Our discussion concerned making men aware of the small incremental life style changes that could make a huge difference to their health. It is difficult to bring about massive changes to people's life styles, but small changes often make a big difference, without upsetting people's lives too much. I hope to continue to work with the men's health forum to find out what we can do to improve men's health simply by education programmes and making them aware of services. I am sure that we could bring about significant change by doing that.
The Commission for Health Improvement is an important innovation and I hope that it will help to realise the Government's commitment to ironing out service inequalities in the NHS. It must ensure that those inequalities are eradicated from every aspect of the service, including provision for sufferers of long-term illness. One way of tackling the holes in the service would be to develop and enhance the role of the 96WH specialist nurse. That should not be seen as a means of delegating to nurses work that should be done by doctors, but as a means of building on nurses' important work in the community in the treatment of people with long-term conditions.
Nurses' work often focuses on the whole person. Their interest in each individual is not exclusively medical and that is ideal for the treatment of such patients. The role of nurse prescribers and nurse-led clinics should be encouraged and expanded. I am pleased that the Government are expanding the role of nurses throughout the health service, with a widening of scope and increased availability of specialist nurses.
I spoke yesterday on the subject to the chairman of the Dartford, Gravesham and Swanley Healthcare Partnerships primary care group, Dr. Alasdair Thomson, a fellow GP. He told me that in the Dartford and Gravesham area it has already been possible to employ a specialist multiple sclerosis nurse and an additional epilepsy nurse. Work is now being done on the possibility of employing a Parkinson's nurse. Such initiatives are important and show how nurses with specialist skills can help people to make their lives more productive and make less use of services.
Much of what I have described makes sound economic sense. It is not a drain on resources or an additional cost to the health service. The Royal College of Nursing sent me some data on work done by Professor Sir Brian Jarman at Imperial college on the difference that nurses can make in the use of health services, in particular those who specialise in Parkinson's disease. They can reduce morbidity, mortality, the risk of fractures and falls, the amount of hospital in-patient time, nursing home costs and costs to social services as a result of health service investment. Professor Jarman estimated that between £300 and £500 per patient per annum could be saved on the treatment of Parkinson's disease by the use of specialist nurses.
I am not advocating a huge increase in extra health service resources, but a more focused use of those resources. We must ensure that they are tailored to the need of the patient. I want them to benefit the patient's as well as the nation's health, while not putting excessive and huge burdens on the health service. It is a matter not of throwing money at the problem, but of simply changing emphasis and ensuring that the right people with the right skills are put in touch with the right patients, to the benefit of everyone.
Also, the Government need to recognise formally the importance of chronic long-term medical conditions by the establishment of a ministerial responsibility for long-term medical conditions to oversee reforms in the service, ensure a more holistic approach to the needs of sufferers and raise the profile of chronic illness with both the Government and the country.
§ The Minister of State, Department of Health (Mr. John Denham)I congratulate my hon. Friend the Member for Dartford (Dr. Stoate) on securing the Adjournment debate. He has considerable expertise on 97WH health issues. I hope that I am not taken ill in the Chamber but, if I were, I can think of no better place than in an Adjournment debate with my hon. Friend.
§ Madam Deputy SpeakerOrder. Let me caution the Minister. He will discover that, on the whole, politicians who are doctors should be avoided at every level.
§ Mr. DenhamMy hon. Friend the Member for Dartford is right to stress the importance of the management of chronic illness as an aspect of health care. One in three of the population suffers from a chronic, long-term condition. Patients who live with long-term illness are usually knowledgeable about their condition and are often in the best position to manage their illness with the help and support of health care professionals and other agencies, such as local authority social services.
As my hon. Friend said, in acute illness the object of health care is to return people to their previous states of health, so that they can resume their everyday life. With chronic illness, patients' lives and frequently those of their families are changed, often for ever. Our aim in treating chronic illness is to ensure as far as possible people's ability to continue to live independent and enjoyable lives. I welcome the debate, not least because it gives us a chance to set out the Government's policy on caring for people with chronic illness.
I reassure my hon. Friend that the other Minister of State at the Department of Health, my hon. Friend the Member for Barrow and Furness (Mr. Hutton), has ministerial responsibility for long-term chronic illness. The Chamber may question why I am answering this debate, but that is a private matter between him and me. I hope that I can effectively represent his work.
We have set out our aims to build a new national health service—one that is faster, fairer and more convenient for patients. It is a radical programme of change to transform the NHS, keeping it true to its values—based on need, not the ability to pay. The new NHS will be barely recognisable by the time that we have finished our 10-year programme of modernisation. A key part of that is a more patient-centred national health service with greater patient and public involvement in service delivery. We are integrating that principle into national policy through our reforms. It is happening through new organisations such as primary care groups, initiatives such as health action zones and Department of Health initiatives such as the patient-partnership strategy.
Users and carers are represented in new organisations such as the National Institute for Clinical Excellence and the Commission for Health Improvement. They are involved in developing the national service frameworks. People with chronic illness, in particular, have much good advice to offer those organisations based on their personal experience of local services.
I pay tribute to the work of the Long-Term Medical Conditions Alliance and its director, Judy Wilson. The merits of the organisation are well recognised in the Government and it gives us a great deal of help in formulating policy for people with chronic illness.
The Chancellor's announcement last week of significant extra investment for the national health service—an average of 6.3 per cent. in a four-year period 98WH in England—is tremendously good news for everyone who uses the NHS. It will provide resources for modernisation, which need to be coupled with change in some of the elements that my hon. Friend described.
Last week, my right hon. Friend the Prime Minister described five challenges, or themes, in improving the national health service: partnership, in ensuring that the different elements of the system work together; performance, in improving productivity and clinical performance; developing the professions, the entire national health service and the social care work force; patient care; and the prevention and avoidance of ill health. In taking forward that work, my right hon. Friend the Secretary of State has created teams to examine how those challenges can be met and will add a sixth team to consider patient empowerment as an essential part of a modern health system. Alongside that work will be a work force planning review designed to ensure that the national health service has the sort of work force that it needs to deliver for patients—a work force who can deliver services that are more flexible, skilled and customer driven.
My hon. Friend mentioned specialist nurses and I commend the local initiative in his area. Such nurses have an important role to play in the management of chronic conditions. The number of posts is a matter for commissioners and providers at local level and forms an integral part of their planning for the needs of local populations. There is no doubt that people with chronic illness can benefit from access to a wide range of nursing services, including practice and district nurses, who may be able to refer to specialists such as continence nurse specialists and MS nurse specialists, for example.
I hope that the work force review will strengthen local work force planning so that needs identified in local health improvement programmes, including those of people with chronic illnesses, are properly reflected in the training and employment of appropriate staff, including specialist nurses.
In the new approach to the new national health service, it is important to improve the way in which we aim to deliver services. Too often, people with long-term chronic conditions have been made to fit themselves around the way in which care is provided locally, regardless of whether that meets their individual needs. To overcome that approach, we have developed as part of our reforms the concept of long-term service agreements between commissioners and providers, based on the concept of pathways of care and recognising that patients at different times in their lives will need care and support from primary care, secondary care and social care. By developing services around the pathway of care, we expect the service to be much more flexible and to put the individual patient's care at the heart of the system.
That new approach will develop in time. At local level, people will inevitably have to concentrate on a limited number of local priorities each year, but it will produce better arrangements for patients. That approach will reinforce the need for the seamless working of health, social services and other agencies such as housing, which my hon. Friend discussed.
We must break down the barriers between the national health service and social services. The Health Act 1999 put in place much of the legislative framework 99WH that is needed for closer working between the health service and social services. Those new powers will provide opportunities to improve services for people with chronic illnesses. People living with chronic illnesses know only too well how failure to deliver the right package of care can result in frustration and unnecessary difficulties in the activities of daily life.
Clinical governance will underpin much of the Government's quality agenda. It is a means by which standards will be raised and it will form the basis for monitoring and evaluating quality improvements in the national health service. It will play a key role in providing a health service that improves the overall standard of care that it delivers, reduces unacceptable variations in treatment and ensures that decisions about care and treatment are supported by up-to-date evidence of effectiveness.
As part of the process of clinical governance and our wider drive to tackle variations in treatment in care, it is important to focus on chronic conditions among others. Let me provide some examples. Good work intended to raise standards of care in chronic neurological illness was launched by my hon. Friend the Minister of State for Health recently. An innovative neurology programme for GPs was developed by the British Brain and Spine Foundation in collaboration with the university of Bath. It developed after in-depth research to establish GP needs and it aims to improve early diagnosis, case assessment and management and referral for secondary care. It was supported by a research grant from the Department of Health.
The programme focuses on the six most commonly seen aspects of general practice and provides a unique opportunity for United Kingdom GPs to enhance their skills in a crucial area of medicine. I hope that my hon. Friend the Member for Dartford will view that as a practical example of recognising the need to tackle variations in referral rates and the management of different conditions. He is right that we must ensure that it applies to all members of the community, including the black and ethnic minority population. He rightly referred to some good practice in the system, but it remains patchy. As we mainstream our equal opportunities and diversity agenda in the Department of Health, it is important to iron out any differences in the quality of services received by different members of the community.
Diabetes is relevant to the whole population, but its incidence is higher among the south Asian population. It is a chronic condition for which we are developing a national service framework to set out clear standards for care and treatment. More than 1 million people in the UK have diabetes and it is predicted to increase significantly in the next decade. Diabetes and its complications account for at least 9 per cent. of health 100WH care costs. At the personal level, it is not properly managed and long-term complications—blindness, renal failure, lower limb amputation and cardiovascular disease—can be severe.
There is considerable evidence throughout the country of variations in the organisation and quality of diabetes services. Our plan is to develop a national service framework for implementation within the national health service in spring 2002. It will set national standards, define service models and put in place strategies to support implementation and delivery. It will also set out performance measures against which progress in an agreed time scale will be monitored. The expert reference group for the NSF is adopting a patient-centred approach. As well as including two people with diabetes and the chief executive of the British Diabetic Association on the group, it is considering how else to access views and information from service users.
I have provided two examples of approaches to tackling variations in the quality of service. I agree with my hon. Friend that one of the most important and exciting ways for the Government to work with people with chronic illness is the development of the concept of the expert patient. Research shows that patient-led self-management schemes have beneficial effects. Improved health, a better ability to communicate with health professionals and fewer hospital admissions will result if patients are informed about their condition, know where to receive a treatment and have greater control over it.
We have established an expert patients task force, led by the chief medical officer. It is developing an expert patient programme for people with chronic conditions, which is likely to lead to more lay-led self-management programmes, the strengthening of professionally led, condition-specific, self-management programmes and the integration of aspects of the current self-management programme into the planning of the future health system. It will give advice on how self-management programmes for people with chronic diseases can be brought right into the main stream of the national health service rather than remain a fringe activity. We hope to receive the recommendations by autumn.
Some professionals might initially view the programme as potentially threatening, but it will not replace patients' needs for informed advice and treatment from health care and social care professionals. I am pleased that health professionals in the task force have underlined that approach.
My hon. Friend made an interesting point about using patients' expertise in professional training. I recognise that this is done in some areas, but there is scope for improvement.