HC Deb 29 January 1997 vol 289 cc322-30 12.55 pm
Mr. Alan Howarth (Stratford-on-Avon)

I am grateful for the opportunity to draw attention to the needs of people suffering from neurological conditions, and the needs of their families and carers. Early-day motion 252, in my name and supported by 55 right hon. and hon. Members, briefly states the issues on which I would like to enlarge. The words of the early-day motion are: That this House notes that some 1.8 million people in the United Kingdom are significantly affected by a neurological condition, that the needs of many of them for both health and social care are complex and inadequately met and that organisational structures and interests may obstruct the provision of appropriate services; and calls upon local authorities, health authorities and NHS trusts to apply both the letter and the spirit of the National Health Service and Community Care Act 1990 through joint planning and commissioning of services for people affected by a neurological condition. I am indebted to the Neurological Alliance for encouragement and advice in pursuing these matters. The Neurological Alliance is an umbrella group of 30 charities concerned with individual neurological conditions. It contains household name charities concerned with certain disorders that are common: Alzheimer's, epilepsy, stroke, migraine, Parkinson's and multiple sclerosis. Other charities within the Neurological Alliance represent sufferers from uncommon conditions, such as Huntington's disease, forms of muscular dystrophy and hereditary ataxias.

Research shows that, in an average health district of 250,000 people, there will be 4,000 to 5,000 people aged over 16 with a disabling neurological condition, and of them, perhaps 1,500 will be so disabled as to require help for most of their day-to-day activities. People with neurological conditions make up 20 per cent. of acute admissions to medical wards. A minimum of 3,285 people will be seen annually in outpatients' departments in each health district. People with neurological conditions are 13 per cent. of disabled people living at home and 30 per cent. of disabled people living in residential institutions.

It is useful to consider neurological conditions together, despite the great variety of those conditions, because the needs of sufferers, their families and carers have certain things in common. People with neurological conditions are a major responsibility of the health service and of social services departments, yet for that large group of people deserving of the best care we can give, we have not—I use the phrase advisedly—got our act together.

I will not dwell on how much more might be done to prevent some of these conditions. Of course we should do more to promote better health care. Alcohol and drug abuse, including smoking, can result in neurological damage. Improved road conditions and better lighting could prevent accidents that lead to neurological damage. Genetic information and counselling need to be available to people who may pass on a genetic condition.

At the onset of medical conditions—for example, after an accident—there is a short interval in which it may be possible to arrest or limit major brain damage. Whether that can be done depends on access to accident and emergency units, quick and accurate diagnosis in them, and the availability of scanning and intensive care equipment. A survey of consultants in 1995, however, found that only 17 per cent. of consultants worked in a hospital where there was a physician or neurologist with special responsibility for stroke. Although a brain scan is a critical element in diagnosis, the Stroke Association reports that an estimated 30,000 patients a year with acute stroke are admitted to a hospital with no CT scanning facilities.

I want to emphasise the complexity of the needs of sufferers from neurological conditions. The disorders cross the boundaries of health and social care and hospital and community services, and the divisions of physical disability, mental health and provision for children, adults and the elderly.

Many neurological conditions have a range of symptoms that require specialist expertise for recognition and treatment. Early and accurate diagnosis is of great importance. Undiagnosed neurological symptoms cause enormous insecurity.

Certain conditions are so rare that a general practitioner may see only one or two cases, or even none, yet specialist services are in short supply. The Association of British Neurologists tells us that we need one neurologist per 100,000 of the population. Even if we had that many, a large number of stroke victims would still be seen by a practitioner in an alternative discipline, and the majority of those with Alzheimer's disease and some with late onset disorders such as Parkinson's would still be seen by geriatricians and psycho-geriatricians.

The Multiple Sclerosis Society points out that only a consultant neurologist may prescribe beta interferon, but, because of the long waiting lists, patients who would benefit from that drug cannot have it for long periods.

With the shortage of neurologists and the inevitable lack of specialised knowledge among most general practitioners, it is all the more important that there should be guidance for referral and re-referral, and systems for exchanging information and advice on management.

Neurological conditions have an impact on all aspects of people's lives. Some conditions are variable and unpredictable. Some are slowly degenerative. All require timely and appropriate input, ranging from information and counselling through to rehabilitative treatment, special housing and respite care. A range of disciplines and services needs to be involved, supported and co-ordinated. Each sufferer and each sufferer's carers need comprehensive and co-ordinated care.

People with neurological conditions have an array of problems that need to be recognised and addressed. They have needs for appropriate medical intervention, including therapies for improvement and maintenance, monitoring the side effects of drugs, avoidance of pressure sores, incontinence aids, optimal nutrition, comprehensive information, mobility equipment—the Government's withdrawal of the mobility component of disability living allowance for adults who go into hospital for more than 28 days does not help—communication aids, opportunities for employment and leisure.

Patients require a holistic approach to their needs—medical, social and emotional. They are bewildered by the array of agencies and professionals. Without co-ordination, they will not receive timely and appropriate treatment and services and continuity of care. Co-ordination is often lacking. The work load of neurologists is such that they have little opportunity to explore beyond the medical needs of their patients. Service provision is fragmented, and liaison between neurology departments and social services departments is too often poor.

We should be able to expect that a neurological team will have a spectrum of expertise—neurologist, rehabilitative physician, occupational physio and speech therapists, psychologist, nurse, social worker, dietician and, very importantly, a designated co-ordinator with responsibility for ensuring that the right things happen at the right moment. The co-ordinator, as the central point of contact for the patient, the patient's family and the professionals, should be able to ensure proper communication between all concerned, continuity of care and ready access to information or services from the appropriate person. Evidence makes it clear that those stroke patients, for example, who are helped by a multi-disciplinary team tend to make the best recovery.

That model is not, regrettably, what we generally find. The reality is too often a deficiency of relevant expertise and a passing of the buck, particularly between health and social services. The concentration in the health service on acute needs is too much at the expense of proper attention to long-term, progressive, but less acute, needs. The market trading system in the NHS is not suitable to achieve the teamwork and co-ordination that neurological sufferers need.

In 1995, only 21 per cent. of consultants worked in hospitals with a stroke multi-disciplinary team. There is a lack of neurologists and of specialists in rehabilitation—in 1995 only 44 per cent of consultants had access to a stroke rehabilitation unit—and the distribution of rehabilitation centres is unplanned and arbitrary. Some areas do not have such a service, while others can provide help only to acute cases. Lack of access to multi-disciplinary rehabilitation teams is the result not only of lack of funding but of lack of understanding by other professionals of its importance, as well as lack of co-operation between different health and social care agencies.

Social services departments do not generally consider people with neurological conditions as a distinctive, though varied, group, but usually bracket them with the physically disabled or the elderly. Neurological conditions pose challenges to structures and working practices that most social services departments are not meeting. In spite of that, the Government are pressing local authorities to privatise social care.

If social services departments are unable to establish proper procedures and standards, how can we have any confidence that they will insist on them from private contractors? The Carers National Association has recorded its concern with the wholesale contracting out of services for accountability, quality of standards, choice and monitoring.

The 7 million carers in our society—1.5 million of them caring for a person for more than 20 hours a week—do not receive the support they should. The aspirations of the Carers (Recognition and Services) Act, introduced two years ago by my hon. Friend the Member for Croydon, North-West (Mr. Wicks), need to be turned into reality.

The additional personal tax allowance for people who work as well as care is available only to men. It is extraordinary that women are not eligible. Invalid carers allowance is an exiguous benefit of only £36.60, with no taper, hedged about with restrictive rules, which were recently tightened by the Government's new regulations on computation of earnings.

Some 20 per cent. of carers have never had a break. More respite provision is urgently needed. The predicament of young carers needs special attention, and is often a particular anxiety for a patient suffering from a neurological condition. A thorough review of support for carers is needed in the context of an overall review of the funding of long-term care.

Let me illustrate how things can go wrong in our present pattern—or lack of pattern. My first example is of a sufferer from Huntington's disease, about whom I learned from the Huntington's Disease Association. Huntington's presents a uniquely grim combination of mental health problems and profound physical problems.

Philip was 37 years old when he died, having been diagnosed with Huntington's disease for 12 years. He was cared for at home by his wife, who received the help of a carer for four hours in the morning and a night sitter. When she needed respite, social services said that Philip would have to stay in a long-stay geriatric hospital as it could not afford hospice fees. Philip's wife visited the hospital, and decided that that would not do.

Philip's condition deteriorated fast. Social services suggested nursing home care, but, after two weeks, the nursing home said that it could not cope. The suggestion for his future care was the long-stay geriatric ward. Philip's wife asked again if he could go to the hospice. Social services again said no, because it could not fund that. At that point, the health authority said that Philip did not fit into its criteria for continuing care.

A case conference was called. Everyone agreed that Philip needed terminal care, and an assessment in a unit specialising in Huntington's disease, so that his needs could be clearly established. Then, when the issue of funding arose, came disagreement. Eventually, the health authority agreed to fund the assessment, but Philip died in a general ward in a hospital on the day that he was due to be transferred to the unit. He had spent the last three months of his life being transferred in and out of hospital while people decided whether he met the continuing health care criteria.

The Alzheimer's Disease Society tells me of the case of an elderly woman in the advanced stages of Alzheimer's—deaf, blind and virtually immobile. Her husband was told last year that, with the introduction of new eligibility criteria, she no longer qualified for NHS continuing care, because she was neither unlikely to die in the next six weeks nor in a coma. He was therefore asked to move her to a private nursing home, where he would have to pay.

Shortly after being informed of the decision, the husband fell seriously ill and has been diagnosed with cancer. The health authority continued to insist that his wife must be moved, and that the health of the carer, regardless of the seventy of the illness, is not a consideration in the decision to move her. She is still in the ward, and it remains to be seen what will happen.

Finally, let me describe a case reported to me by the South Warwickshire Council of Disabled People. AD is a 37-year-old woman who has suffered from multiple sclerosis for a number of years. She developed psychotic behaviour. She was treated in hospital, and her condition settled. She was given a date for discharge. One week before that date, the social services department informed her that it was unable to fund her care package at home and that her case needed to be reviewed between the social services and the health authority. There ensued an argument between social services and the health authority so protracted that it was another five months before the woman left hospital.

I strongly endorse the words of the Minister for Social Security and Disabled People in Bradford on 7 January about the Disability Discrimination Act 1995. He said: The first rights of access under the Act place duties on service providers not to refuse service and not to provide it on less favourable terms. The Government, however, have a duty to ensure that health authorities and social services departments have the means to fulfil their duties. I quote from the findings of a joint review team from the Audit Commission and the social services inspectorate on Warwickshire's social services: Because of financial constraints, the Department was in danger of reducing its role to a minimalist reactive one, concentrating only on its statutory obligations to those most at risk and neglecting those capable of rehabilitation, which is not a viable long term strategy. We can only be ashamed of the inadequacy of current service provision. Against the inevitable financial constraints, the need for the cost-effectiveness that properly combined and co-ordinated holistic provision could achieve in the support of sufferers from neurological conditions is all the greater. The Government should set national standards and models; they should also, I suggest, top-slice funds from the health service and social services to support the network of regional specialist centres that is needed, and to provide financial leverage to ensure the co-ordination and co-operation of the various services involved.

I pay tribute to the voluntary organisations—those in the Neurological Alliance and others—that play such an invaluable role in supporting sufferers from neurological conditions. Voluntary organisations play a vital part in representing service users, providing information, advice and guidance, and establishing local support groups. In many cases, they directly provide advice, comfort and support—often including equipment and sometimes financial support—working alongside the statutory services.

The organisations work at all levels—individual, local and national—and across all boundaries. Their work, which is vital today, will become of increasing importance as the number of people requiring long-term care is likely to increase. In many cases, advances in treatment and management will not produce a cure, but will stabilise or slow down the decline of patients so that lisfe is prolonged. Today, there are more than 670,000 people with dementia. By the year 2021, the number is expected to be nearer 1 million.

The charities are working to promote the collection and exchange of information on neurological conditions, to organise and participate in training programmes, to act as channels for mutual collaboration on models of care, technology and research and to inform and influence policy makers about the needs and circumstances of people with neurological conditions.

The Government need to be clear in their own mind about the role that they expect voluntary organisations to perform. They need to be consistent in the manner in which they work with voluntary organisations. Voluntary organisations, as expert representatives of sufferers, should play a key role in partnership with the Government in policy formation. As they know better than any of us, in all too many respects, we have a long way to go to reach the standards of care for sufferers of neurological conditions that we could and should provide.

1.13 pm
The Parliamentary Under-Secretary of State for Health (Mr. Simon Burns)

I thank the hon. Member for Stratford-on-Avon (Mr. Howarth) for raising this important subject. I was particularly interested to hear the valid and important points he raised, although I suspect that he would not expect me to accept his interpretation or analysis of certain issues.

As the hon. Gentleman said, neurological disorders affect large numbers of people. The Neurological Alliance estimates that about 1.8 million people suffer from them. Whether they are relatively common conditions such as Alzheimer's, stroke, epilepsy or Parkinson's disease, less common ones such as motor neurone disease, or very rare conditions such as progressive supranuclear palsy, they impose an enormous burden on sufferers and their families. In addition, statutory health and social services clearly have a vital role in providing appropriate and effective services and treatment.

The Neurological Alliance has produced a very useful document: "Living with a Neurological Condition—Standards of Care". I am more than happy to endorse its broad thrust and its general message, as my predecessor did with the alliance's 1992 document—of which it is a revision. I am sure that health authorities, NHS hospital and community trusts and GP fundholders will find it a useful aid when they are drawing up contracts for services for people with neurological conditions.

Patients with neurological disorders—and their carers—are the real experts in what it means to live with neurological conditions. That is why one of the six medium-term priorities for this year and next requires the NHS to give greater voice and influence to users of NHS services and their carers in their own care, the development and definition of standards set for NHS services locally and the development of NHS policy locally and nationally.

As far as the development of policy nationally is concerned, Ministers and officials of the Department of Health have close contacts with the Neurological Alliance—which includes nearly 30 charities representing people with neurological conditions and their carers. Indeed, my predecessor formally launched the alliance in the House in February 1994.

The alliance is receiving five years' core funding from the Department, amounting to £91,000 in total, and in 1996 we funded the production of its document, "Providing a service for people with neurological conditions", that includes a model of care which purchasers and providers of health services may wish to adopt. The alliance contributed to the NHS executive's listening exercise on the primary care-led NHS, and provided some very helpful comments.

We attach great importance to the need to involve users of services and their carers and representative bodies in the development of policy. We also have close contacts with many of the Neurological Alliance's member organisations, several of which have received funding from the Department under the section 64 general scheme of grants.

For example, officials at the Department are working closely with the epilepsy charities on the Department's epilepsy initiatives, for which funding has been provided amounting to more than £300,000 so far, including more than £30,000 to NHS epilepsy services development projects. The MS Society was closely involved in the guidance we issued last year on the introduction of beta interferon to the NHS.

Some people argue that the Government should prescribe at national level what treatments the NHS should provide, including treatments for people with neurological disorders. I do not believe that that would be right. No such list of treatments could ever hope to accommodate the range and complexity of the different cases that individual clinicians face all the time. It would be entirely inappropriate to take decisions out of the hands of the clinicians treating patients and into the province of others who possess neither the experience of caring for patients nor the expertise to make such decisions.

The role of the centre is to set the strategic direction for the NHS—as we do in the annual priorities and planning guidance and in other documents such as our recent White Papers on primary care and "A Service with Ambitions". We said in "A Service with Ambitions": the NHS and its partners should give increasing priority both to the prevention of physical and sensory disability, and to the problems associated with disability where it has been diagnosed. At the point of diagnosis people should be informed honestly, sensitively and fully of the nature and consequences of the disease and given access immediately to counselling, advice and support.

Mr. Gordon Prentice (Pendle)

Is it not a disgrace that, in some parts of the country, it can take up to six months from examination by a general practitioner to examination by a neurologist? My hon. Friend the Member for Stratford-on-Avon (Mr. Howarth) made a key point about the shortage of neurologists. In Lancashire, it can take six months to get an appointment to see a neurologist.

Mr. Burns

If the hon. Gentleman will bear with me, I hope to address later in my speech the question of the number of neurologists and what is being done to increase it to provide greater care for people suffering from neurological diseases.

The White Paper continued: The NHS should be leading the way in changing public attitudes towards disabled people. I am sure that no hon. Member would disagree with that. We all, regardless of our political views or prejudices, should work together to advance that cause.

Patients need to be confident that those working in the health service have the right knowledge and skills to do their jobs properly. The White Paper "Choice and Opportunity—Primary Care, The Future" sets out proposals to ensure that professionals working in primary health care have access to education and training that matches the needs of their patients. It responds to calls for more opportunities for multi-disciplinary learning, for better continuous education, for more training outside hospitals and for improved research and development and clinical audit in primary care.

Primary care has developed rapidly in recent years. Advances in medical knowledge, backed up by new technologies, larger teams of dedicated staff bringing new skills to primary care, and increasing investment, have raised both the quality and the range of services provided. At the same time, many primary care teams have taken on a wider role in the provision, planning and management of services through GP fundholding and GP-led commissioning.

However, those changes and opportunities have also led to pressures on the service. Changes in the work force, including expectations and aspirations of those involved, have contributed to the pressures. Although services have generally improved, we acknowledge that the effect has been patchy. Some parts of the country and some groups of people continue to be less well served than others.

The hon. Member for Stratford-on-Avon raised a valid and important question about GPs. He was right to say that GPs may only once or twice during their working lives—a relatively short time—see patients suffering from one of the more complex or rarer problems that he described. Obviously, one cannot expect GPs to be experts on the subject and to be able to address the problems of those patients, but it is important—as I am sure the hon. Gentleman agrees—that they have the ability and the knowledge to refer such patients to the relevant neurologist or other clinician who can deal with those cases.

The hon. Gentleman also raised the question of the number of neurologists working in the health service at present. There are currently some 260 consultant neurologists in England and Wales, and their number has increased by about 4.3 per cent. in the past five years. I can reassure the hon. Gentleman that the Department of Health and the specialist work force advisory group will continue to monitor the need for additional neurologists and to seek to redress the problem, if the research shows that to be necessary.

The hon. Member also mentioned collaboration between agencies, which is critical for the provision of a first class service. Collaboration, both at a strategic level and at the level of individual care packages, is essential to meet the needs of people with chronic diseases, such as neurological disorders, and for older people with complex needs. Groups representing people with chronic conditions have emphasised the need for care co-ordination and management responsibility to be clearly assigned within primary health care teams.

The Department of Health, working with the Department of the Environment, has encouraged innovation in collaborative working, through guidance on joint commissioning and through training and development support. Further work is in progress to identify good practice in collaborative working across primary and social care boundaries.

People want and need information that will tell them about specific conditions and diseases, especially chronic conditions. The voluntary sector has developed a wide range of such information. For example, the British Epilepsy Association, the Motor Neurone Disease Association and the Parkinson's Disease Society all produce good, up-to-date, user-friendly literature to help to inform those who contact them. The freephone health information service puts callers in touch with appropriate support groups and provides condition-specific literature. The voluntary sector also provides people with information on appropriate services as well as advising what people can do for themselves to control or improve their condition.

I join the hon. Member for Stratford-on-Avon in paying tribute to the voluntary sector and to carers. They play an important role in providing practical and emotional support. In many ways, they are the unsung heroes of society, whose work all too often passes unnoticed because of their professionalism and commitment. They do not seek praise or attention: they get on with doing the job. By definition, people who are determined to get on with the job do not necessarily attract the thanks, support and praise that they richly deserve.

One of the principles of good primary care is that professionals should be knowledgeable about the conditions that present in primary care, and skilled in their treatment and in contribution to their prevention. Professionals need to be knowledgeable about the people to whom they are offering services, and services need to be co-ordinated by professionals who are aware of each others' contributions—including inter-professional working—and who know when to refer people for specialist care.

There should be no gaps in services. Necessary services should be accessible to people regardless of age, sex, ethnicity, disability or health status, and should reflect the needs and preferences of the individuals using them. Patients need to be confident that those working in primary care have the right knowledge and skills to do their job properly. That calls, in turn, for primary care staff to have access to high-quality professional education, training and development.

Such important issues cannot all be resolved overnight, but I am confident that we are working along the right lines and that what we are doing will benefit all people using the NHS, including people with neurological disorders and their caring families.

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