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Stroke Care (Young People)

Volume 407: debated on Wednesday 25 June 2003

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3.30 pm

I welcome the Minister to what I believe is his first debate in Westminster Hall. I am glad to have obtained the debate, because it is important to remind ourselves that stroke does not affect the elderly only, and we must tailor our services to reflect that fact.

We are used to thinking of stroke as an affliction of the elderly, but every day 30 people of working age in this country have a stroke—10,000 a year, more than 1,000 of whom will be under 30. It is estimated, too, that between 250 and 400 will be children. However, the fact that we cannot be absolutely clear about the figures reflects the fact that very little money is spent on research into stroke, and particularly its incidence among younger people.

The Stroke Association, which I commend for its work, is currently funding a research project into the incidence of stroke among children, but its research budget is only about £2 million a year, and that is the bulk of money spent on stroke research in this country. If we compare that with the £50 million a year spent on research into heart disease or the £200 million spent on research into cancer—vital research in both cases—we see the extent to which stroke is the poor relation in funding terms. Yet stroke is the third most common cause of death in England and Wales and the largest single cause of disability. Despite the Government's efforts, it remains in some respects the Cinderella of the health service. That is particularly true of stroke services for younger people.

A stroke can be devastating at any age, but particularly when it strikes a younger person out of the blue. Younger people need special services. They often find it difficult, for instance, to get access to the right rehabilitation facilities, which are often designed for elderly people. They may also need family support—in relation to what has happened to their children or with parenting. The family may also suffer economic consequences if the wage earner has a stroke. Yet support for dealing with benefits, retraining and employment advice is thin on the ground.

I readily acknowledge the work that the Government have done to improve stroke services. The national service framework for older people, which contains the NSF for stroke, makes clear what we want to do to improve services. In particular, I welcome the requirement for all hospitals to develop specialist stroke units and for primary care trusts to ensure that all general practices have protocols in place to identify those at risk and to take preventive measures.

I know from my own experience how much our medical services have improved. My father suffered a stroke in his early 50s, 20-odd years ago. I can compare that experience with the recent experience of a friend of mine who suffered a stroke at a comparatively young age, and I know that things are getting better. However, my friend was lucky to be treated in a hospital with a specialist stroke unit run by a professor, and I think that the Minister will accept that not everyone is so lucky. We still have a long way to go.

For instance, the Commission for Health Improvement recently said that stroke patients are often at the back of the queue when it comes to access to medical care. Professor Caroline Watkins from the north-west regional stroke taskforce has estimated that less than 30 per cent. of hospitals have a specialist stroke unit, and less than 70 per cent. have a proper rehabilitation unit. We could have a debate on what constitutes proper rehabilitation facilities because they can be variable.

That all accords with the recent sentinel audit of stroke services carried out by the Royal College of Physicians, which estimated that only 27 per cent. of people get treated in a specialist stroke unit. That causes 6,000 unnecessary deaths every year. Improvements can be made and it is important that as we improve services, we ensure that they cater for all age groups, including younger people. The very fact that the NSF for stroke is contained in the NSF for older people—although it says it applies to all age groups—means that often when people are designing services they forget about the needs of younger people. The result of that can be seen in a survey that the Stroke Association carried out among the younger client group, their families and carers.

The survey showed that the issues for younger people were: insufficient information at the time of diagnosis, a failure to assess properly the need for continuing care and treatment, and feelings of helplessness not just for the person who had had a stroke, but for their family. People found it very difficult to access the support they needed to deal with what is a life-changing situation.

The survey also showed clearly that there are often failures of communication among health professionals that make it very difficult for people to access the services that they need. As a result, that age group often feels marginalised and struggles with services that are not designed for it. The medical care of that age group in hospital is affected. Young people are still treated on wards that are designed for the care of the elderly. What happens when they come out of hospital is also affected. When the Stroke Association held a conference in 1999 among young stroke victims, some of the comments made were very revealing, and they still apply today. One participant said:
"If I were over 65 the care I receive would be great."
He added that there are no facilities for helping younger people with strokes, such as child care or even a child-friendly visiting area when one goes to a clinic.

The result of that conference and the surveys show that when dealing with younger stroke victims, we must look not just at the person but at the family situation because, according to the Stroke Association survey, 32 per cent. of young people who have had a stroke experience the failure of a close relationship afterwards. Problems with parenting are experienced by 70 per cent. of that group.

However, we provide very little support for families to help them get through that difficult time. I remember how difficult it was to adjust when my father came home from hospital, and I was grown up. How much more difficult it must be for a young child who cannot understand what is happening, or for a teenager who is going through a difficult phase of their own life. Of all those people who reported problems with parenting, 76 per cent. said they got no help or support to enable them to cope.

There is a difficulty, too, for the carers of people who have suffered strokes, particularly younger people. Often they are not only trying to care for their partner, but trying to cope with child care as well. Little help is given with respite care or child care.

Another problem, according to what I have seen and the evidence, is that people often experience difficulty in obtaining the aids that they need to help them to function and in having adaptations made to their homes. It emerged clearly from the Stroke Association survey that many younger people do not even receive a full community care assessment on leaving hospital. The sad fact is that many people can rebuild their life and lead a productive and useful life if they are given the right help and support. That entails not only ensuring that they receive the right medical care and rehabilitation facilities, but giving them facilities to help them to plan their future life when they are ready to do so.

It is striking that the Stroke Association's survey showed that among the younger age group 80 per cent. had lost their job and had not found other employment. Only 10 per cent. remained in their previous employment and 10 per cent. had lost their job but had found other jobs. Very little advice is on offer about employment retraining, employment facilities or, for those who cannot return to employment, educational facilities or suitable voluntary activities that can help them to rebuild their confidence and self-esteem.

It is not surprising that 76 per cent. of the people in the survey said that they had received no help with retraining or employment and that they felt discriminated against in the employment market. That is devastating for younger people, who feel that they have been put on the scrap heap at a young age, and economically devastating for their families because 58 per cent. end up relying on state benefits, which means not only that they are in poverty, but that more children are growing up in poverty.

I want to make a plea to the Minister, who has an interest in such matters, for our old friend joined-up government. Will he seriously consider funding for stroke research, and particularly into the incidence of stroke among young people? I know that it takes time to find more money and that there are always competing priorities, but I hope that in the next spending round the Department of Health will consider the issue seriously when it negotiates with the Treasury. There is a moral argument because of the amount of death and disability that stroke causes, but there is also an economic argument because it was estimated that the cost of stroke to this country in 2002 was £2.3 billion a year and that is rising every year.

May I also ask the Minister to look carefully at the care people receive in hospital and the progress that is being made towards providing proper stroke units? In the meantime, will he look seriously at the problem of young people being treated on elderly care wards? That is not beneficial to patients or staff because it does not allow staff to do their job properly and is not comfortable for patients. Will he see what can be done to end that practice?

In addition to care in hospital, will the Minister consider what happens to people when they leave hospital? What is needed is what we have tried to achieve in so many areas: a breakdown of the barriers between primary care trusts and acute trusts, and between health and social services. People who have had a stroke may need a whole package of services according to their condition: physiotherapy, speech and language therapy, aids to help them to cope with their daily life, family support, help with retraining and so on. In common with everyone else that I have met in similar circumstances, they do not want to traipse between different departments. They do not care which part of government delivers the services, but they would like them delivered in one easily accessible package.

May I suggest to the Minister that primary care trusts should work with acute trusts to ensure that when people leave hospital following a stroke, they receive a whole package of information on the services that they may need to access as time goes on. That may be in a booklet or some other form but it should tell them about their diagnosis, the preventive measures they can take and how to access other services that they might need, either immediately on leaving hospital or later on.

I suggest to the Minister that the services need to consider the cross-boundary issues carefully, as people who have suffered a stroke are often treated in a hospital that is in a different PCT from their home. It is no use giving people information about services in an area where they do not live. I suggest, too, that we try to ensure that everyone who leaves hospital after a stroke has a named key worker, so that they know whom to contact for information on the services available to them. People should be told when they leave hospital of their right to a proper community care assessment, as many people do not know that they are available and fail to have such an assessment.

In conclusion, I ask the Minister to examine the links between primary care trusts and social services in respect of providing help with child care and respite care for the families of stroke victims. We owe a tremendous debt to carers, as things can be particularly difficult for the families of younger stroke victims. A little respite care and time to oneself can make all the difference to the people involved and help them to keep going, but the contact that would enable that care to be provided does not exist.

We should consider liaison with the Department for Work and Pensions to educate personal advisers in the effects of stroke and in knowing how to give the right advice to people as they recover and rebuild their lives. Of course more money is needed, but we must carefully consider how the resources already available are being used.

The key to the issue for younger stroke victims is, first, remembering that they exist; it is not only elderly people who have strokes, but middle-aged and young people and children. When those groups cease to be invisible it will be easier to think about their needs and thus produce better services for them.

I hope that the Minister will take note of what I say and do what he can to help this large but neglected group of people.

3.47 pm

I commend my hon. Friend the Member for Warrington, North (Helen Jones) for securing this Adjournment debate. There are two types of Adjournment debate: those that are a continuation of the party political battle and those that are about genuine issues of interest to hon. Members' constituents. This debate clearly falls into the latter category. I congratulate my hon. Friend on bringing the matter to the attention of the House and I thank her for giving me the first opportunity to appear at this Desk in Westminster Hall.

The real benefit of an Adjournment debate is not what happens in the Chamber but the fact that it forces Ministers to do some homework and focus on an issue before they respond to the debate; that is certainly true in this case. I was astounded by some of the figures that my hon. Friend drew to my attention. About 10,000 people under the age of 55 have a stroke every year, 1,000 of whom are under the age of 30. That brings home the scale of the problem. My hon. Friend is absolutely right that the consequences of a stroke and the process of recovery are different for a young person. The stroke survivor and their family have to come to terms with the physical and emotional changes as well as making significant lifestyle adjustments, which can involve issues such as mobility, employment, income and dependence. As my hon. Friend rightly points out, there can be a severe impact on relationships. It is important that stroke rehabilitation services for younger people focus on the goals that young people want to achieve. Those will include vocational rehabilitation so that ultimately and if possible, the person can return to work. Clearly, those issues are different from the issues that may affect older people who have strokes.

Stroke is the third biggest killer and the largest cause of serious disability in the United Kingdom. In the 1990s, age-standardised rates of mortality from stroke in people aged under 75 in England fell by just over a third, from 30.3 deaths per 100,000 of population in 1990 to 19.9 deaths per 100,000 in 2000. That continues the declining trend that we have witnessed in the rate of mortality from stroke since at least the 1960s, and demonstrates that our understanding of the causes of stroke and the best way to treat it is improving.

I listened carefully to what my hon. Friend said about the need for research and the disparity between the amounts going into research into certain conditions and the amount going into stroke research. Last year, the Medical Research Council invested more than £3 million in stroke research. That council responds to bids for research, so if someone puts together a good bid for a research project, it will consider funding it, but it does not necessarily seek new bids and try to ramp up the level of spending. My hon. Friend made points on which my Department needs to reflect, and we will ensure that the Medical Research Council is aware of her comments. If we are to continue the drive to improve care and treatment for people who have suffered stroke, we need to do the research that my hon. Friend identified.

The Government are committed to reducing the number of disabilities and deaths resulting from stroke. We are making changes and improvements in access to, and delivery of, care and treatment. That includes the key areas of prevention and education about risk factors and the care and rehabilitation services that people receive immediately after a stroke.

When we launched the national health service plan in 2000, we said that it would take time to deliver a genuinely patient-centred service. That is why from the start it was a 10-year programme of investment and reform. The extra investment that we are making will help the NHS to deliver on the plan. I am referring to the money to increase capacity and recruit extra staff, and the tools to deliver far-reaching reforms. We want to ensure that people who have a stroke can return, as far as possible, to the lifestyle that they enjoyed before. The needs of stroke patients span a wide variety of services, and we recognise that younger patients have different needs from older patients.

The development of stroke services has brought about an enormous change in the care of stroke patients. There is growing evidence that dedicated stroke care greatly improves outcomes, reduces mortality and is cost-effective. A specialist multidisciplinary team is a key factor in providing successful stroke care. My hon. Friend pointed out the success of the treatment that her father received as a result of being able to access specialists.

The national service framework for older people, published in March 2001, provided a major driver for improved stroke services. It set specific standards and milestones and established the development of integrated stroke services and improvements in the delivery of stroke care as a priority. It is important to note that although the risk of having a stroke increases with age, stroke can affect younger people, so the standards of care and service models in the framework apply equally to young and old. I accept my hon. Friend's point that as the standards are incorporated in the national service framework for older people, we may sometimes miss the emphasis that should be placed on the needs of younger people. I shall ensure that the Department reflects on that problem to see how we can deal with it.

The implementation of specialist stroke services is required in the document entitled "Improvement, Expansion and Reform". That is the priorities and planning framework for 2003–06. It makes it clear that implementing the older people's national service framework is a top priority, and that the 2004 milestone relating to specialist stroke services is a key target. The document also includes important milestones to assess the improvements in stroke services that are required. From monitoring against the April 2002 milestones for the national service framework, we know that 83 per cent. of hospitals plan to have a specialist stroke service in place by April 2004. Although we recognise that some services need to increase their capacity, significant improvements have already been made and stroke patients of all ages are already feeling the benefits.

The aim of the national service framework stroke standard is to reduce the incidence of stroke in the population and ensure that those who have had a stroke have prompt access to integrated stroke care services. The stroke standard requires:
"The NHS will take action to prevent strokes, working in partnership with other agencies where appropriate. People who are thought to have had a stroke will have access to diagnostic services, will be treated appropriately by a specialist stroke service, and subsequently with their carers, participate in a multi disciplinary programme of secondary prevention and rehabilitation."
Implementation of the national service framework stroke standard will achieve the situation in which fewer people will have a first or repeat stroke; there is early identification and preventive action for those at risk of stroke, and general advice and support on how to reduce risks; there is access to specialist stroke services based on best evidence, better care, better outcomes, reduced death and disability from stroke; there is co-ordinated rehabilitation and improved chances of regaining independence; and there is support for carers.

My hon. Friend made a valid point about the need to deal with respite care for the carers of people with long-term disabilities or those who have become disabled. I have a personal interest in that matter and I shall be following it up. We must not overlook the possibility that, without those carers, we could not provide the standard of service that people need. In the coming months, I shall certainly be looking closely at the issues that my hon. Friend raised.

However, we are aware that the organisation of stroke care throughout the country remains variable and that there is still much to do to ensure that the standards in the national service framework for older people are met. The third national sentinel audit of stroke, carried out by the clinical effectiveness and evaluation unit of the Royal College of Physicians and led by the intercollegiate working party for stroke, has given a detailed picture of the way in which hospitals provide care for stroke patients.

The audit demonstrates that 73 per cent. of hospitals now have a stroke service, which is an increase from 43 per cent. three years ago. However, there is still insufficient capacity in that 36 per cent. of patients admitted with strokes spend some of their time on a stroke unit. There have, however, been increases in the number of stroke physicians and the number of patients returning home following hospital treatment. The next audit is planned for April 2004, in partnership with the new Commission for Healthcare Audit and Inspection.

Currently, many initiatives to help develop stroke services are supported by the Department of Health. Last year, the Department carried out a mini review of what makes a good stroke service, following visits to several sites throughout the country. The results of that review are available on the Department of Health website. The report sets out key elements that need to be in place to establish good stroke services and provides examples of good practice.

"Pursuing perfection" is a project that is managed through the Modernisation Agency. It involves communities that are aiming to transform the levels of care that are currently provided to patients and service users. Four communities are involved at present and they are expected to seek out current levels of good practice to help them frame their goals. The stroke pilot is in Devon. By setting stretching targets and, it is hoped, reaching them, Devon will set a model for others to follow.

The Bradford changing work force pilot is exploring new ways of working in the care of stroke across health and social care teams. The principal players are the Bradford hospitals NHS trust, the three Bradford primary care trusts and Bradford social services. The benefits expected from new ways of working are greater continuity of care for patients, faster access to treatment, fewer communication problems and unnecessary reassessments, less pressure on scarce staff resources and greater staff satisfaction. The lessons that come out of that project will go a long way to deal with some of the issues raised by my hon. Friend in respect of what happens after the discharge and the need to receive the joined-up government response.

The Department of Health and NatPaCT—the national primary and care trust development programme—are working with seven pilot primary care trusts to help them to commission in order to deliver on the requirements of the older people's NSF. One of the projects is looking specifically at commissioning to deliver on the stroke standard. In 2001, the National Institute for Clinical Excellence was commissioned to develop guidelines for the management of hypertension in primary care. When published, the guidelines will help to ensure that the treatment that patients receive is of a consistent standard, and will identify cost-effective approaches to managing patients with hypertension, including the threshold for initiating drug therapy. High blood pressure is a risk factor in stroke, coronary heart disease and chronic renal failure, and the guidelines on that are expected in February 2004.