HC Deb 05 June 1996 vol 278 cc523-42

Motion made, and Question proposed, That this House do now adjourn.—[Mr. Conway.]

9.34 am
Ms Rachel Squire (Dunfermline, West)

I am pleased to have the opportunity today to debate long-stay care for people with dementia. This week is Dementia Awareness Week in Scotland, organised by Alzheimer Scotland—Action on Dementia and I wish to take the opportunity to pay tribute to that organisation and the work that it does throughout the year, and to its sister organisation, the Alzheimer's Disease Society.

Alzheimer Scotland—Action on Dementia have published an excellent report this week entitled "Putting Quality First". I intend to speak briefly about some of the points raised in the report and the action that I and others believe needs to be taken to improve long-stay care for people with dementia. I firmly believe that such action would be of benefit to everyone who may or may not need long-stay care for whatever reason at some time in the future.

The issues raised by debates such as this affect all of us and go to the heart of the values and principles of our society. A society such as ours has a moral obligation to provide quality personal long-stay care for all who need it, whether early in life through accident or disease or later through advancing age. I do not believe that the provision of long-stay care should be left to the individual and the marketplace, especially for those who have paid all their lives for the welfare state in the belief that long-stay care, if they ever required it, would be provided free at the point of need by the national health service.

The start of the report from Alzheimer Scotland—Action on Dementia outlines the principles for long-stay care—choice, independence, dignity, privacy, fulfilment and rights. I hope that those principles will shape our discussion today.

I am sure that my hon. Friends and other hon. Members are aware that dementia is a disease characterised by damage to the brain cells which leads to a decline in intellectual and physical functioning. It is the fourth killer disease in old age, after cancer, heart disease and strokes. It is a complicated, lengthy and distressing illness that has severe consequences for the sufferers, their families and friends. The provision of high-quality long-stay care is an essential part of the continuum of care for people with dementia. It is not an optional extra, but is inevitable in the progress of the disease.

Currently, there are about 61,000 people with dementia in Scotland and 650,000 in the United Kingdom, of whom some 40 to 45 per cent. live in institutional care. It is reckoned that the growth rate in the number of people with dementia will be the same for the next 15 years as for the past 15 years, so we are not talking about some demographic time bomb, but about a predictable steady increase that can be planned for. The key questions we need to address are whether there will be enough long-stay care, whether it will be of quality and whether it will be in the right place for families and carers. Increasingly, throughout the United Kingdom, families, carers and sufferers of dementia find that the provision of long-stay care depends on where they happen to live, not on their needs. The provision is becoming more and more of a lottery.

I could not take part in a debate such as this without commenting on how the quantity and availability of NHS-provided long-stay care has been severely cut under the Government. Since 1992 alone, the number of NHS long-stay beds in Scotland has been cut by nearly 4,000, but the number of long-stay beds in private nursing homes has dramatically increased. Of course, the Government claim that long-stay institutional care is being replaced by community care, but, all too often, NHS long-stay beds have been replaced by private ones for which care is means tested. Some are in nursing homes of 120 beds or more, and such homes are not suitable for the care of people with dementia. The Government's own guidelines recommend that homes providing continuing care for people with dementia should have no more than 30 places.

As I have said, NHS long-stay care free at the point of need has been replaced by means-tested care. I shall give a couple of case studies which clearly demonstrate the effect of that on families and carers. The first is that of Mr. and Mrs. T from Glasgow; obviously, they do not want to be named. Mr. T is 65 and has severe dementia. He had a professional career, but had to give up work early because of the illness, and his wife gave up her work three years before retirement age to care for him.

Mr. T was admitted to Woodilee hospital last October for assessment, and was discharged to a nursing home after six months. The hospital is due for closure, and he has to pay for the whole of that nursing home care. Mrs. T says that, if her husband could express his views, he would say that he has been let down by the national health service, and that she should not suffer financially because of his illness.

A second example is that of Mrs. S, a 64-year-old widow who has had Alzheimer's disease since 1986. In early 1994, the consultant psychiatrist decided that it was no longer possible for her to be cared for at home because of her increasingly complex needs. Her family were informed that it was possible for her to be cared for on the specialist hospital ward where she had received short respite care. However, some months later, the family were told that their mother's bed was no longer classified as long-stay, and that they would have to find a nursing home for her. That is the reality of what is happening throughout the country to people who require long-stay care for dementia.

The Alzheimer Scotland report recommends that there should be an equitable system for admission to NHS-funded long-stay care throughout Scotland, and, I am sure it would argue, throughout Britain, that is not subject to variations in local criteria but is based on the administration of nationally approved clinical assessment procedures. The Scottish Office's recent circular on the care programme approach delegates that whole area to local level and allows for variations.

Alzheimer Scotland calls for the criteria for admission to NHS-funded long-stay care to include challenging behaviour that requires specialist care and seeks continuing nursing care for people with dementia who need 24-hour supervision. My third example clearly demonstrates what is currently happening in some parts of the country. Tony suffers from vascular dementia, including asthma, and he is cared for, yet again, by his wife. We should never forget the contribution of our nearly 7 million carers, many of whom care for many years for people with dementia.

Tony was cared for by his wife at home, and regular planned respite care was provided for both of them. His condition deteriorated and he was admitted to a general hospital with a chest infection. He was unable to speak, had difficulty in swallowing and was immobile. He was fed by gastric pump through his stomach. The consultant geriatrician decided that his condition did not merit NHS continuing care, and that he should be admitted to a nursing home which should be paid for by the patient. His condition further deteriorated, and the health authority ignored the recommendations of the GP. NHS continuing care was finally provided only when it seemed that Tony's death was imminent.

I shall now deal with the importance of not only the quantity but the quality of care. The Government should do all they can to provide a caring environment for people with dementia that promotes a sense of well-being and maximises a person's sense of independence and dignity. I am sure that all hon. Members want to see an end to the days when one walks into the living room of a residential or nursing home and sees people sitting on chairs with their backs against the wall, staring blankly into space, sitting half asleep or muttering or shouting, with no stimulation and no social care. The only care is for their physical needs.

The Government can end such scenes by acting on the recommendations in the Alzheimer Scotland report. I shall mention a few of the key points.

First, a full, well-recorded, multi-disciplinary assessment should take place when a person enters care, and should be repeated regularly thereafter. That is a rehabilitative rather than a negative approach. Kenny McKie, one of my constituents who is a qualified nurse and the manager of a high-quality dementia care establishment, told me, "Everyone has potential in them. On-going assessment of people with dementia is very important. With good care, you can reverse it in some areas and delay the process in others." I pay tribute to Mr. McKie and to his staff for their work.

The second important issue is a national dementia care training initiative which ensures that staff are constantly trained and that staff levels allow for such training. That key concern was mentioned recently by carers in Lothian in a survey of their views on the quality of care. The third area needing action related to legislation for a unified system of registration and inspection of residential and nursing homes. There is a false division between health and social care, and current legislation is inadequate and out of date.

The fourth essential for quality care is a unified care system, the aim of which is to ensure that people who need care throughout their lives should receive it in just one setting, and should not be shoved from pillar to post as the dementia worsens. My final recommendation is the call in the report and elsewhere for a full review of the policy on paying for long-stay care. I support my party's call for the Government to set up a royal commission to examine the cost and funding of such care.

The Government's proposals for private insurance are a disgrace. They would benefit only the insurance industry, and would be too expensive for the majority of people. They make no allowance for such matters as broken employment, ill health and small savings, and would do nothing for those who in future may be subject to genetic testing for forms of dementia.

I know that many hon. Members wish to contribute, and I thank them for coming this morning to participate in the debate. Alzheimer Scotland's report is called "Putting Quality First", and quality personal long-stay care is in all our interests. We can never predict when we or a loved one may need it. Universal and equal access to quality long-term care should be part of the foundation of a caring and compassionate society. We never question the importance or cost of providing high-quality emergency services or high-quality intensive paediatric care, so why should we question the importance or cost of putting quality first for people with dementia and their carers?

I hope that the Minister and his Government will act swiftly to implement the recommendations in the report.

9.50 am
Mr. David Hinchliffe (Wakefield)

I congratulate my hon. Friend the Member for Dunfermline, West (Ms Squire) on a first-rate introduction to the report, and on initiating the debate. I am afraid that I have not seen the report, but her comprehensive speech covered the very important issues contained in it, and the organisation concerned will be pleased that she has been able to initiate the debate.

I speak from personal experience on this issue. When I first entered this place, in 1987, two things happened: first, I shook hands with the Speaker—not the current Speaker—and secondly I promptly went down with chicken pox, which was extremely painful, and was off for a month, but I do not suggest that the two things are connected. A less amusing fact was that, at the time, my mother, unfortunately, was diagnosed as suffering from dementia. I have worked in social work for many years—all my working life, in fact—and the experience of having a member of one's family on the receiving end taught me some important lessons, many of which were touched on by my hon. Friend.

Fortunately, my mother was in sheltered housing, in a very caring environment, in my local authority of Wakefield. She had reached the stage when she wandered during the night, but the problem was that there were no staff to ensure that she did not. The various elements of community care for someone in her circumstances were in distinct blocks, which never met. She was deemed to be a housing case, but there was no care provision. We had a very caring warden, to whom I shall be grateful for the rest of my life, but she could not get up during the night to stop my mother wandering. The health provision did not relate to the care provision.

I do not in any way knock the people who were concerned with my mother's care, as we received, at the time, the very best possible care, and I am most grateful for that, but it taught me some important lessons.

We should not consider community care in terms of individual blocks of providers. When someone is suffering from dementia—certainly in my mother's case—and their needs cross the various boundaries, the current organisation of that care leaves much to be desired. Because there was no care provision during the night in that sheltered housing block, my mother ended up in just the environment described by my hon. Friend: a lock-up care home, sharing a bedroom with a complete stranger and wandering around the home with other demented people.

The time that my mother spent in that home was the worst period of my life. If I am portrayed as anti-institution, it is because I saw what that experience did to a member of my family and do not want it to happen to others. My hon. Friend put her finger on the point when she said that we must examine the provision that is available now, particularly in the private sector, where long-stay geriatric units are being replaced by large private nursing homes without stimulation or individualised care.

With current Government policy, I am concerned that we seem to have abandoned any element of organisational framework for community care. I make a specific plea in relation to the care of people suffering from dementia. We should think about our responsibility for planning care for people whose needs do not neatly slot into some organisational category of health or social care. In dementia—more, perhaps, than in any other area—people's needs stretch way across such organisational boundaries.

I am sad to say that the organisation of community care has worsened rather than improved in recent years. We have seen the community care changes, but I regret to say that we have also seen the total abandonment of any form of national organisation of health and community care, which is now left to the market. The internal market in the NHS is totally fragmented, and community care is left to individual entrepreneurs to provide what they consider will make the most profit. That has left us with a range of problems that must be urgently addressed.

I recognise that dementia takes many forms and that there are different levels of functioning. It is wrong to categorise people who suffer from dementia. In my mother's case, the illness was progressive and changed over a number of years. At different stages, different forms of provision were required. I am worried that the system is not flexible enough to respond to those changes as a person's circumstances change.

Care provision should relate to individual functioning, but it does not necessarily have to be catered for only within institutional care. I regret that we have returned to the model of institutional care—that, if anybody has community care needs, those needs must be dealt with in an institutional framework. People have seen the explosion in private nursing homes and private care homes, which are growing throughout the country. I would argue against that, as I feel that my mother ended up with a bad deal, not through the fault of the local people who tried to help her but through the lack of thought that was given to the models of care we have.

I shall give one example, from an adjacent constituency. The relatives of an elderly man who had been admitted to a care home with dementia came to me about the problems that he was causing through wandering from his care home back to the council bungalow where he had previously lived. The elderly woman who lived in the bungalow was disturbed because he kept coming back. As a result, she was prepared to move elsewhere.

The chap came out of the care home and moved back into the bungalow and was given a support package to remain there, because he saw it as his home. He could not understand why he had been moved to an alien environment. The council, in a caring way, adjusted his environment in the bungalow to reduce the risk, to ensure that he did not leave gas taps on and that he was not wandering during the night. His condition was monitored throughout the day, which can now be done through various means. He did not need to be in an institutional setting.

I reinforce the point made by my hon. Friend about a continuum of care. We need a continuum that can respond to a person's individual circumstances at any time, particularly in relation to dementia. We must move away from the overwhelming obsession with institutional care, particularly for people who have various forms of confusion and dementia.

Not long ago, my hon. Friend and I were in Norway to study that country's models of care and housing. Denmark passed a law making it illegal to have institutional care. Its models are based on a housing approach. Our models are the workhouse modernised. I am ashamed that, at this point in the 20th century, the old public assistance institution still dominates in our view of what should be offered to people with a variety of needs. Let us normalise our view of care and of how we would like to be cared for. I do not want to end up in a wall-to-wall geriatric situation staring at people with similar problems. I want to live in a normalised housing environment as long as I can. We can increasingly make such provision.

We must establish a proper organisational framework that reflects the new boundaries of community care. The social/nursing care divide went by the board years ago. It is nonsense to retain rigid organisational boundaries between the NHS, local authority, nursing and social care.

My hon. Friend the Member for Darlington (Mr. Milburn) knows well my view that our party should review its policy on the connection between local authority and NHS provision. There should be one body in charge of community care. As long as a divide remains, some people will fall between the two factions and not be helped. My hon. Friend knows where I am coming from, and I know where he is coming from, but I hope that we may meet in the middle and agree a just policy that satisfies our respective views. The new organisational framework must address the models of care I have described, increasingly to embrace the housing model and how it can offer people a far more civilised deal.

I will conclude, as I am being looked at by my Whip. My hon. Friend the Member for Stockport (Ms Coffey) is a caring Whip, who concerns herself with community care and has a good track record on that issue.

My final point reinforces what my hon. Friend the Member for Dunfermline, West said about the Government's recent announcements on private insurance. Their message is that any problem in old age is for the individual, who must ensure that he or she has the right insurance policy—that one must look after number one, because the state will not provide. That is not good enough in relation to dementia. We must reinstate our belief since the introduction of the welfare state in the 1940s that we have a collective responsibility to care for people with needs of the kind that my hon. Friend described.

10.2 am

Mr. David Chidgey (Eastleigh)

I want to draw the Minister's attention to serious allegations that health and local authorities are misinterpreting their duties and powers in law, in the provision of long-stay care for dementia sufferers.

I wrote to the Under-Secretary of State for Health, the hon. Member for Battersea (Mr. Bowis), last November about the case of my constituent, Mrs. Valerie Richardson. In March 1995, Mrs. Richardson's mother-in-law was diagnosed as suffering from Alzheimer's disease. Her consultant advised that she should be discharged from hospital into a nursing home. Mrs. Richardson asked whether the NHS would be providing a bed, and was told—rightly in my view—that her mother-in-law's needs came first and that Mrs. Richardson should not worry about costs until her relative was settled.

Without Mrs. Richardson's knowledge, or her consent as the person with power of attorney, social services became involved, and threatened court action to place a charge on her mother-in-law's property. Mrs. Richardson, as many people know, is not a woman to be bullied. Fourteen months later, her mother-in-law continues to be cared for in hospital by the NHS while she awaits a proper home care package. She has not joined the 40,000 pensioners who in the last year alone have been forced to sell their homes to pay for care. As a result of Mrs. Richardson's dogged stand, the health authority and social services face court proceedings challenging the legality of their actions.

Two points are at issue. Health authorities and local authorities stand accused of exercising powers outside the law. Perhaps more serious, by those actions clinicians, health administrators and social workers are at risk of charges of criminal negligence for carrying out such instructions. That risk exists in the case of clinicians for abrogating their responsibilities; and in the case of administrators and social workers, for assuming responsibilities for medical care for which they are unqualified.

The Under-Secretary wrote to me in January to inform me that, under section 22 of the National Health Service Act 1977, health and social service authorities have a statutory duty to work closely together. I replied in detail and at length in March, pointing out that the various Acts dealing with national assistance, welfare services and community care are open to contradiction.

In particular, under the National Assistance Act 1948, local authorities are barred from providing services or accommodation to meet any medical requirements. Those are defined as the responsibility of the NHS, and include a duty to provide the treatment of people with mental illness and to provide those services free of charge".

However, the Residential Accommodation Regulations 1992 allow health authorities to give consent for nursing care accommodation to be provided under the 1948 Act, but with the health authority purchasing the bed. The statutory instruments fail to recognise that the 1948 Act bars local authorities from providing accommodation for infirm patients, including those who suffer from mental disorder—a recipe for chaos and confusion. We are seeing as a result a programme of enforced residential care for pensioners with serious health problems. Health and local authorities are substituting social care needs for health care.

Patients receiving care under health service Acts are reclassified as requiring the provisions of the 1948 Act, which are means-tested. The consequential forced realisation of patients' assets to pay for their care is open to strong challenge as being without legal foundation. Medical treatment for medically disordered patients must under statute be provided free of charge. Social services cannot give treatment, and have no statutory powers to do so.

The misinterpretation of legislation places medical staff and social workers at risk to charges of negligence. The Under-Secretary's reply in January stated: It will be appropriate in some cases for a health authority to decide, taking into account all relevant considerations including clinical advice and resources available, that it is no longer appropriate to provide a person with NHS care. The Minister was saying that hospital administrators with no medical qualifications will decide, on the basis of available resources, whether a patient needs continuing medical care, yet the statutory guidelines on hospital discharge arrangements state: All consultants are responsible for the medical care of their patients. They are responsible for deciding when a patient no longer needs acute care … The consultant will decide whether the patient needs continuing care arranged and funded by the NHS.

Clinicians who abdicate their responsibilities to administrators, and the social workers who implement their decisions, all stand exposed to charges of negligence for acting outside their statutory powers. That view is shared by the health service ombudsman, following complaints about the health commission that covers my constituency. He has only recently issued a stern warning to NHS managers that they should follow doctors' advice when discharging patients from hospital.

I remind the Minister that the ombudsman was called in following complaints against North and Mid Hampshire health commission, which had discharged 24 elderly dementia patients from hospital to private nursing homes. Within two weeks of their discharge, eight had died. Five of the patients who died were discharged against the express wishes of medical staff, who advised that they were too ill to be moved. Doctors were overruled by managers, who went ahead as part of the health commission's plan to close wards for elderly dementia patients as a money-saving measure.

The ombudsman's report makes it clear that the health authority paid scant regard to the statutory guidelines on hospital discharge and that it was "deplorable"—his word—that elderly patients were left without proper medical cover. As a result, the ombudsman has issued a grim warning to any other authorities that are planning to close long-stay hospitals.

Will the Minister please accept, therefore, that there is clear evidence that health and local authorities are acting outside their powers in the provision of care for dementia patients through ignorance, confusion, or, as the ombudsman has found, by deliberately flouting statutory guidelines? Will the Minister accept that those actions are placing health and social service staff at risk to charges of negligence? Will he review the legislation to confirm that it is the NHS that is obliged to provide medical care for dementia sufferers, or will he introduce statutory amendments making it clear to the House that the Government intend this to be the province of the social services, with all that that implies?

10.11 am
Mr. Michael J. Martin (Glasgow, Springburn)

I also congratulate my hon. Friend the Member for Dunfermline, West (Ms Squire) on bringing this subject before us. Like other hon. Members, I speak from experience. I have a loved one who suffered from Alzheimer's: my late father-in-law Thomas McLay. Unfortunately, he recently died.

He left school at 14 and never had a lazy bone in his body. He worked hard as a miner, and he could have been described as an employer's dream, because, when he had to start work at 6 in the morning, he was there half an hour before, ready to start his shift. He did that whatever time he started. He brought up a family of 13. When the war came, he did his work with the Royal Artillery. I am painting of picture of a someone who asked nothing of any one. He brought up his family along with his wife Margaret. The first time he needed help from the state was when he became an Alzheimer's sufferer.

My mother-in-law, who has also recently died, was determined that Thomas, with whom she had been married for 60 years, would not go into a home, and that she would be the carer in the family. When we talk about carers, the word sometimes rolls off the tongue, but we forget that carers are sometimes aged 70 or 80 years of age, and that they are not always physically fit.

As the Minister knows, I rarely criticise the local authority, but the behaviour of Strathclyde regional council, the biggest local authority in Scotland, if not in the United Kingdom, which is now the City of Glasgow council, in looking after my father-in-law and my mother-in-law, who was a carer, was deplorable. The one thing that we as Members are reluctant to do is fight on behalf of our relatives in case we are accused of putting our nose in, but one day I had absolutely had enough. This man had worked hard all his life. Why should he not get representation from his son-in-law?

I spent half an hour talking to a social worker, and I discovered that she had not been in the family home for 18 months. Things had changed. Sufferers do not one day go along to the doctor, who tells them, "You have Alzheimer's disease." It does not work like that. People start to act irrationally and, often, relatives and the doctor do not know what is going on. It is a gradual process.

Sometimes, as happened with the mother of my hon. Friend the Member for Wakefield (Mr. Hinchliffe), sufferers wander away. In my father-in-law's case, it was a form of paranoia. He was worried about people looking into his home, and that someone was following him. He had a thing about his rent being behind, but there was nothing wrong: his rent had never been in arrears.

For 18 months, a social worker had not turned up. I said to her, "Are you going to turn up?" She quoted the wrong telephone number, and I discovered that she was reading from the file of a family who lived three miles from my mother-in-law and father-in-law. That was the support we received.

I have another criticism. My wife and her sister rightly said that they were going to support their mother. When they turned up in the home and officials from the social work department were present, they deliberately turned their backs on the two daughters and addressed themselves only to the 80-year-old woman who was the carer.

That is a bad example from an organisation that says that it wants to keep families together and to support them, yet any time that the daughters were showing support, it deliberately turned its back. There must be a policy in that social work department, because not only the social worker, but the occupational therapist and many others acted in that way.

I have heard Ministers with responsibility for social security talk about the support we give to carers, but no one came to me and my mother-in-law to say, "This is what you are entitled to." She eventually received various grants and support from the Department of Social Security, but all that was in dribs and drabs. When we wondered whether my father-in-law would be entitled to death gratuities that ex-soldiers were receiving, he was so far into his illness that he could not remember his old Army number, and that delayed his receiving the very thing he was entitled to.

If we are going to say to people, "Be good carers," as a society we must give support. My mother-in-law kept a bed free in the national health service because she wanted her loved one to stay at home, but she was not thinking in economic terms to save the Government money. By doing that, she saved the NHS and the social work department a fortune, and she received no thanks for doing so.

The one organisation to which I give credit was mentioned by my hon. Friend the Member for Dunfermline, West: Alzheimer Scotland—Action on Dementia. A girl there called Isabel Marr was prepared to tell my mother-in-law, my wife and her sister, "This is what is happening to your father, to the man you love. Here are the changes that he will endure during his illness."

As we all know, Alzheimer's and dementia patients tend to catch illnesses quickly. Flu can turn into pneumonia, and they are immediately admitted to hospital. There is a habit in our hospitals, which we all have a great regard for: they give a patient with dementia the strongest tranquilisers that they have in the ward. That is not only dangerous, but insulting to patients. As my hon. Friend the Member for Dunfermline, West rightly stated, although the patient can be suffering in terms of being unable to communicate in a certain way and it is hard to get a conversation going, in many ways they can still think clearly.

Until his last day, my father-in-law could draw and paint beautiful pictures. We have them hanging framed in our home. Certain parts of his mind were still very active, and he needed stimulation, as we all do. However, in the ward for the elderly in the local hospital, there was not even one picture hanging on the walls. I argued about that with the hospital administrator. He asked why the hospital should put pictures on the wall. I said, "Because you've got pictures on your wall at home, so why shouldn't people living in the hospital, as their home, for a week or two have the same amenities?"

I am trying to get across to the Minister and anyone working in social services who might be listening the fact that carers must get 101 per cent. support. If we do not give them that, we will simply be sweeping the problem of dementia and Alzheimer's disease under the carpet. We will be letting other people deal with the problem behind their own doors.

It is ridiculous that, when an elderly person needs, for example, a specially adapted bath in his home, which has been recommended by the occupational therapist, the local authority sometimes says that, although there is a clear case for it, it has run out of money in the budget and that elderly person will have to wait until the next financial year. That is a sorry state of affairs. In this day and age, it is ridiculous that we cannot provide much-needed facilities because of constraints on the budget in a particular financial year.

10.21 am
Mr. Barry Jones (Alyn and Deeside)

It is a privilege to follow my hon. Friend the Member for Glasgow, Springburn (Mr. Martin). The human need in the case he instanced spoke volumes.

I thank my hon. Friend the Member for Dunfermline, West (Ms Squire) for initiating this debate. I am sure that thousands of people will be grateful to her for doing so. It is telling that this is the first major House of Commons debate on dementia for 10 years. It shows that, as politicians and policy makers, we have failed to meet the challenge that dementia presents.

Like my hon. Friend the Member for Springburn, I acknowledge the carers in my constituency who have been so loyal to their parents, partners and friends. Every Member of Parliament who does his work conscientiously knows a small army of carers in his constituency. We know them to be very faithful and disciplined; their loyalty is outstanding. Without a shadow of doubt, they save the British state billions of pounds which otherwise would have to be expended in more formal caring environments.

To its great credit, The Times last week devoted a whole page to Alzheimer's disease and carers. I draw to the attention of the House what Richard Eyre, the director of the National Theatre, said in his very moving remarks: The personality starts to disappear and with it the humanity and the soul, leaving as if in mockery only the body to breathe and be fed. He summed up the scene devastatingly well.

The disease is really a Cinderella disease, even though it is a common one, and even though it can strike as early as 30 years of age. I call it a Cinderella disease because only £10 per sufferer is spent on research, while £475 per cancer victim is spent on research. In that context, all credit must go to Alzheimer Scotland—Action for Dementia and the Alzheimer's Disease Society. I know the latter body reasonably well. It has a dedicated and lively staff. It has encouraged the discerning public to accept that the problem will not go away. The society is successful and respected, and it gets fine leadership from Mr. Harry Cayton and the devoted group around him.

I regret that, in recent years, the number of continuing care beds in the national health service has been cut by 40 per cent. I also regret that many more highly dependent people with dementia are paying for places in nursing or residential homes, whereas 10 years ago they would have been cared for by the NHS free at the point of delivery. I further regret that whether or not people get such care depends on where they live.

I want the Government to end what is in effect a lottery by taking up the Health Select Committee's proposals—first, for national eligibility criteria; and secondly, for a long-term care charter. Unless we follow the recommendations of the Select Committee, the disparities will be such that we will become a nation made up of district health services, rather than a truly national health service. That is the direction in which we are going, and it concerns me greatly.

In Wales, we believe that we invented the national health service. We certainly gave the great Aneurin Bevan to this House—and he, without a shadow of doubt, fashioned what was, and, indeed, may still be, the envy of the developed world by creating the great NHS. The problems faced by sufferers of Alzheimer's disease show that all is not well in our national health service.

The Government have issued a consultation paper entitled "A New Partnership for Care in Old Age". Some people will benefit from what is proposed, but some will not. I am concerned about the heavy role that the Government intend to hand to the insurance industry. The blunt truth is that long-term care insurance is not an affordable option for those who cannot make regular payments into an insurance policy. Many of the less well-off people live in Wales, my country. They have ill health, they have been in and out of work, and they sometimes have caring responsibilities.

Last Saturday, Ruth Davies came to see me in my constituency surgery. During a lengthy discussion, she told me about her mother's long illness—which may have been dementia or may have been Creutzfeldt-Jakob disease. In my view, Ruth Davies has shown great filial loyalty to her mother. She cared for her in a very loving way, and that deserves to be recognised. Her letter, which I shall give the Minister, is quite harrowing. It is a summary of the problems of one person, on her own, who faced up to her responsibilities. I hope that, when the Minister reads that letter, he will endeavour to respond and to assist my constituent.

I formally ask the Government to avoid falling into the trap of a short-term solution, which would be fatal for the great challenge of Alzheimer's disease. The Select Committee points the way forward. Above all, I want a system that is equitable, universal and free from age discrimination.

10.29 am
Mrs. Margaret Ewing (Moray)

I shall be brief, because I realise that there are time pressures, and I am sure that the hon. Members who have sat through this debate will be interested to hear the Minister's response to the very eloquent requests that have been made. I congratulate the hon. Member for Dunfermline, West (Ms Squire) on the service she has performed for the House and for the community by initiating this debate, and on the sincerity, commitment and passion with which she opened it. These issues should be seriously examined by all hon. Members, and not solely in the course of an Adjournment debate.

Hon. Members have made personal comments in the course of this debate. I also have a parent who suffers from dementia and is in permanent nursing care. People do not appreciate the trauma that such a situation can cause, not only for the individual but for the family and for friends and relatives. Physically, the parent is still the same person we love, who brought us up, who cared for us and who has done everything possible for our lives. But mentally, they are not the same person. To find that one of our loved ones is suffering from some form of dementia is one of the most psychologically and emotionally draining experiences a person can ever have.

It is good when families are supportive and when friends and relations are there to help one through such difficult times. Unfortunately, many people in our society do not have supportive families, and they are in the most distressing situation. I hope that we can find ways of building up care in the community services to help people who may not be as fortunate as I have been, with a supportive family to see me through particularly difficult times.

Reference has been made to community care in general. As the hon. Member for Glasgow, Springburn (Mr. Martin) said, hon. Members write off to our directors of social work and to Ministers on behalf of our constituents, but it is only when something happens to us personally that we begin to realise the complexities that are involved in ensuring that there are health visitors, home-help services and general practitioners—all the services involved in ensuring that there is community care.

One of my current worries—I refer the Minister to the excellent series of articles in The Herald this week, which is a part of Dementia Awareness Week—is that, in the local government budget for Scotland for 1996–97, £53 million has been made available directly for community care funding, which leaves the councils with an increase of only 0.9 per cent. over last year's base expenditure, from which they must fund any wage increases as well as restructuring costs over and above what the Government have provided for. How does 0.9 per cent. additional funding do anything for community care in our local authorities? That issue should be addressed.

Reference has also been made to institutions. We hate the word "institution", because it conjures up images of a Victorian era institution. I think that the hon. Member for Springburn mentioned Woodilee. That is in my former constituency, and I know exactly what he meant.

There is a stage at which residential, full-time nursing care becomes absolutely essential for many people. I was concerned about people in that situation when I read the Scottish Office's most recent "Statistical Bulletin", and saw that the private sector is growing while the state sector is shrinking. The bulletin deals with community care. I am sure that the Minister is aware of it, so I shall not rehearse all the arguments about the graph that it contains.

I should like to make two very basic points. First, dementia is an illness. It is far too easy to be dismissive and say, "The old lady or the old man is losing their marbles." It is an illness that should be diagnosed. I want fundamental research by the Government into this issue to try to ensure that people do not needlessly suffer from any form of dementia, whether it is Alzheimer's disease or some other aspect of dementia.

Secondly, means testing for people who need full-time nursing care should be abolished. Will the Minister tell us how much money is spent in the administration of means testing while beds are being removed from our hospitals and nursing homes? It is very strange that people who are now in their 80s—who perhaps lived through the first world war, gave all their commitment, paid national insurance contributions all their lives, who never asked for anything and were led to believe that they would be cared for when they needed to be in their old age—are now being denied that care. They did not have the opportunity of private insurance or anything like that. They paid their contributions and expected to be cared for. The concept of means testing and requiring people to sell their homes to pay for their care is absolutely despicable

10.35 am
Mr. Alan Milburn (Darlington)

I congratulate my hon. Friend the Member for Dunfermline, West (Ms Squire) on securing this extremely timely and important debate. I also pay tribute to all hon. Members who have taken part. They have spoken with a depth of compassion and understanding that properly reflect their involvement in care issues. Finally, I pay tribute to the Alzheimer's Disease Society, which does such an important job in Scotland and across the United Kingdom in campaigning on dementia issues.

As hon. Members are aware, Alzheimer's disease and dementia are chronic and degenerative diseases. In 25 years, it is estimated that approximately 1 million people in our country will suffer from dementia. As we have heard, the cost to individuals, their families and their carers is immense. The bill to society is also huge—an estimated £1 billion per annum in England. There is currently no known cause or cure for Alzheimer's disease, and it is one of the most serious medical challenges facing our society.

We live in an aging society. Increased life expectancy is certainly one of the great achievements of this century, and brings with it the potential for a richer and more fulfilling existence for each of us. But age-related illness and disability, particularly dementia, pose a serious threat to the realisation of the potential for healthy aging.

Yesterday I launched a new centre on aging, which will focus new research efforts on understanding and preventing the major causes of chronic ill health in older people. Created through a partnership between two of the north's great universities—Newcastle and Manchester—it will be a world leader in formulating new approaches to the treatment of diseases such as dementia. That such concentrated scientific and medical efforts are taking place in our public sector institutions to tackle an enormous social problem should be a great source of hope. I hope that the centre receives the support it deserves from Government.

A part of the centre's focus will be on developing more effective care delivery systems for elderly people. People with dementia are likely to be the major users of long-term care services in this country. They are also on the front line of the debate that is now taking place on the future of long-term care. That debate is long overdue. In some ways, it is very odd that the debate has not happened before now. Britain's elderly population have, after all, been around for a very long time—long enough for any competent Government to have planned for the challenge of their care.

The problem is that the Government have not done that planning. The elderly, their families and their carers are angry, and for very good reason. NHS disinvestment from continuing care has produced a redefinition of responsibilities between health care and social care. Continuing care, free at the point of use, has been all but rationed out of our national health service. Indeed, a report on psycho-geriatric continuing care beds published by the Alzheimer's Disease Society in 1993 showed that some health authorities had disinvested to such an extent that they provided no NHS beds at all for people with dementia.

Dr. Robert Spink (Castle Point)

Will the hon. Gentleman give way?

Mr. Milburn

I am sorry; I do not have time.

Elderly people who now have to sell their homes—there are an estimated 40,000 such cases a year—are rightly furious because they had fondly believed that the taxes they paid covered care from the cradle to the grave. Instead, as we have heard this morning, all too often those people are shunted backwards and forwards between health authorities and local authorities which are desperately trying to divest themselves of the responsibility of care.

Worse still, by passing the buck to individual health authorities to decide what services should be available to elderly people, the Government have created a lottery in long-term care provision. The ADS survey of draft health authority eligibility criteria for continuing care, which was published just a month or so ago, found incomprehensible criteria and unacceptable variations in access to services. Quite simply, under this Government, where a person lives determines the care he receives and the price he pays. Such a lottery should have no part to play in our national health service or in any civilised system of community care.

Instead of tackling the mess they have created, the Government are in effect telling the public that we have a chaotic, perverse and unfair system of long-term care: "How can we, the Government, make you, the individual, pay for it?" The Government have got the starting point wrong—they are asking the wrong question to get the wrong answer. We believe that the debate has to begin with a much more fundamental question—what services will people need in their old age? Asking that different question is likely to lead to different answers.

First, as my hon. Friend the Member for Dunfermline, West rightly pointed out, we know when and where population change will occur. The so-called demographic time bomb is not going to explode tomorrow. Its impact is being felt incrementally over several decades, so it is a change for which we can all plan. With dementia, for example, we know that there will be a steady rather than a dramatic growth in the number of people who will suffer from Alzheimer's and related conditions.

Secondly, the raw facts of change do not take into account the benefits—or the potential savings—that can flow from allowing elderly people to benefit to a much greater extent from preventive, rehabilitative and convalescent health programmes, so reducing the need for high levels of care, and delaying the onset of frailty.

Finally, I deal with a recurring theme in this debate. Providing new national mechanisms to ensure a continuum of care services among health authorities and local authorities could end the waste of time and money that currently bedevils the delivery of long-term care for elderly people. It is those people who suffer when health authorities and local authorities tussle over resources and responsibilities. That is why we are committed to new enforced national mechanisms to speed up co-operation among health services, social services and, crucially, housing services. The latter are all too often the forgotten partner in the family of community care services.

We want a continuum of care made available for the individual. That is especially important for people with dementia. The onset of dementia is very different from its terminal stages, so care needs will change over time. It is vital that services on the ground are equal across the country, which is why we support the Health Committee's call for a national framework that specifies eligibility criteria for long-term care to define what the NHS, as a national service, is to provide.

Our aim is straightforward. We want a national health service in which access to care is a matter of right, not chance. We want a national long-term care charter so that people know what they can expect from health services, housing services and social services. We want to end the market in the NHS, to remove the perverse incentive for hospitals to discharge patients too rapidly. We have called for a moratorium on the closure of hospital beds, because the closure programme has gone too far.

The NHS has continuing bed responsibilities, but it has other responsibilities, too. That is why we will seek a new role for convalescence, where rehabilitation, recovery and respite services not only help ease the transition between hospital and community but provide more help for carers whose needs must also be met. The ADS's "Right from the Start" report identified almost half the carers looking after people with Alzheimer's as being more than 70 years old. That matter was highlighted by my hon. Friend the Member for Glasgow, Springburn (Mr. Martin). We have made a good start with the Carers (Recognition and Services) Act 1995, but it is only a start—we still need further changes.

Quality is the key challenge facing all providers of care. We want all care to be of the highest standard. Standards must be subject to appropriate scrutiny, which is why we want to bring all community care services—public and private, residential and domiciliary—within an independent regulation net. Several of my hon. Friends have expressed concern about the disturbing trend towards larger institutions. We shall be looking to define new standards, and, in particular, we want to examine whether quality of life in care homes is being compromised by economies of scale.

The reforms I have outlined will deal with the insecurity felt by elderly people about their future. The aim should be to allow people the security of knowing that a broad choice of services will be available when they grow old and to allow them to plan for old age by defining where the boundaries lie between provided and paid-for care. That certainty is what elderly people want; it is what their carers and their families want, and it is what they deserve.

10.48 am
The Minister of State, Scottish Office (Lord James Douglas-Hamilton)

I congratulate the hon. Member for Dunfermline, West (Ms Squire) on having secured this debate. People who suffer from dementia and those who tirelessly care for them deserve our understanding and support: I echo the words of the hon. Member for Glasgow, Springburn (Mr. Martin) who congratulated the hon. Member for Croydon, North-West (Mr. Wicks) on introducing the Carers (Recognition and Services) Act 1995 which substantially improved matters.

This debate is a welcome opportunity to restate the Government's and our personal commitment to making certain that people suffering from dementia receive the highest quality health and social care, which they need and deserve. In a moving speech, the hon. Member for Wakefield (Mr. Hinchliffe) described his personal experiences.

Although this is Alzheimer's Week in Scotland, we must keep the needs of those suffering from Alzheimer's and dementia and our responses to them at the forefront of our minds all the time. I agree that large impersonal institutions are not the ideal surroundings for long-stay care, especially not in respect of the social aspects. The aim is to provide care in smaller, more homely settings, and to improve the opportunities for social stimulation.

Of course, community care planning involves health boards, local authorities and others in joint planning and a joint response to a continuous assessment of need. The aim is to reflect local needs and circumstances and to replace outdated institutional care with care that meets existing needs and will continue to do so.

The hon. Members for Darlington (Mr. Milburn) and for Wakefield highlighted the need for quality of care. Inspection teams should ensure that all homes have structured day activities for their residents. Teams can carry out unannounced visits to ensure that necessary stimulation takes place.

The hon. Member for Eastleigh (Mr. Chidgey) raised the case of the Richardson family. It would not be appropriate for me to go into the detailed circumstances, but I stress that we have set out very clearly in England and Scotland the procedures that should be followed in arranging the continuing care of any person who has been in hospital. I would have expected those arrangements and procedures to be followed in that instance. The Under-Secretaries of State for Health, my hon. Friends the Members for Orpington (Mr. Horam) and for Battersea will be responding to the hon. Gentleman, whose correspondence will be studied closely.

The hon. Member for Springburn made certain criticisms of unsatisfactory activities in the social work department. Those matters should be taken up with the director of social work. We have of course introduced a formal complaints procedure to examine alleged unsatisfactory care, and have strengthened the procedures.

The hon. Member for Alyn and Deeside (Mr. Jones) raised the important issue of research funding. I am happy to confirm that the Scottish Office chief scientist's office is always happy to consider and fund research proposals in that area. Similarly, the Department of Health will look sympathetically at any proposals. In Scotland, we provide significant funding to the dementia services development centre, which carries out research. That centre in Stirling was set up in 1989. We provide it with a core grant of £185,000. It provides information, development assistance, training and research to service planners and providers.

The hon. Member for Moray (Mrs. Ewing) mentioned funding. Funding of authorities reflects their lead role in planning and purchasing community care services. Councils in Scotland have received £662 million in community care resources this year—an increase of £41 million on the previous year. I say to the hon. Member for Darlington that expenditure on social care for older people has been increasing by an average of 9 per cent. in real terms for the past 15 years, from about £2 billion in 1980 to £7.3 billion last year.

Dr. Spink

Does my hon. Friend agree that, since the Government have made adequate funds available, the question is not so much one of funds as the use of them? Is he aware that Essex county council increased its funding from £89 million in 1992 to £192 million today, but continues to misuse those resources by sending young thugs on safari holidays instead of providing proper levels of care? Essex county council is Labour and Liberal Democrat-controlled.

Lord James Douglas-Hamilton

I am glad to hear that resources are being correctly applied with regard to community care in the area to which my hon. Friend referred. It is important that resources should follow the patient and that an agreed strategy is in place before any patient is moved. We are keen to make certain that that happens.

Mr. Milburn


Lord James Douglas-Hamilton

I must move on to the points made by the hon. Member for Dunfermline, West, since she initiated the debate.

She quite rightly wants the NHS and local authorities to attach priority to giving dementia a higher profile. We have commissioned work to develop a framework for mental health that will include consideration of the special needs of people with dementia, and, of course, their carers. We shall be consulting widely on the draft framework in the summer. Alzheimer Scotland—Action on Dementia will be fully involved in the process. I should mention in passing that, for the few weeks that I was responsible for the community charge, I exempted those suffering from Alzheimer's. That was my only act of consequence while I had that responsibility.

I should like to refer to the report of the hon. Member for Dunfermline, West and her recommendations. The report was a very useful and constructive contribution, and we have referred it to a working group on residential care in Scotland, which will be reporting in a few weeks. I should like to go through some of her excellent points.

She called for better training for inspectors. We are examining that. The Scottish Office group will make recommendations in about three weeks, which are very likely to be to that effect. She called for better training of home staff. Inspectors check to ensure that staff are appropriately trained for the client group for which they care, especially dementia sufferers. Such provision has been in place for some time.

The hon. Member for Dunfermline, West called for a joint local authority and health board team. The Scottish Office group is considering that recommendation. It is encouraged by the good practice guidance, and is likely to support a mandatory position. She called for an independent inspectorate, and the Scottish Office group is considering the need for it. She called for the encouragement of best practice. Consultation on nursing home national standards is being issued this week. The residential homes working group is examining the need for standards and, as I mentioned, will be reporting shortly.

The hon. Member called for better funding for more inspectors. The fee charged should cover the need. There should be no bar to increasing the fee if required. That should make the operators self-funding. The fee is, of course, paid by home owners. She called for the publishing of inspectors' reports. There is no bar to that, and I would encourage such openness. She called for tougher guidance on staffing levels. Inspection teams must ensure the appropriate level of staff for the number and dependency of residents. She also called for tougher enforcement of standards, including quick closure where necessary because standards have not been implemented. The working group is examining simplifying and speeding up the procedures. The system must be fair to owners and clients alike.

The hon. Member for Dunfermline, West called for national standards and work is under way on it. She called for the registering of sheltered housing and domiciliary care. I understand that that is likely to be one of the group's recommendations. She called for an urgent review of the Nursing Homes Registration (Scotland) Act 1938. The board is examining the need for that and we shall be happy to consider amending the law in the light of the review. All her points have either been implemented or are in the process of being dealt with. I assure the House that I shall act speedily as soon as I receive the working group's recommendations.

Ms Rachel Squire

I want to make it clear to hon. Members that the Minister is referring not only to what I have said in this debate about the Alzheimer Scotland—Action on Dementia's report, "Putting Quality First", but to a report that I conducted last year on registration and inspection procedures for residential and nursing homes in Scotland.

Lord James Douglas-Hamilton

I am glad to confirm that we either have acted or are acting in relation to the hon. Lady's points, which have been helpful.

The number of beds has been referred to. Where NHS continuing care is required, it will be paid for in full by the NHS regardless of whether that care is provided in an NHS hospital or by another provider under contract with the NHS. An assessment of needs by local authorities and health boards aims to ensure that provision will match needs. From 1 April, there will be a new two-stage appeals system for patients who want a review of the clinical aspects of their care, including discharge decisions. The hon. Member for Darlington—

Ms Squire


Lord James Douglas-Hamilton

I should like to deal with the hon. Gentleman's point about eligibility criteria.

A framework has been established in Scotland and England for eligibility for NHS continuing care based on clinical factors. It would not be possible to set very detailed criteria nationally, because it would stifle local flexibility to meet the needs, and, owing to the historic variation of provision, would cause immense disruption.

To give an indication of the size of the problem, about 600,000 people suffer from dementia in the United Kingdom. That total is predicted to rise to 800,000 by 2000—one in 12 of the population aged over 65. We therefore have to make certain that we have in place a strategy and services that appropriately meet needs.

I join other hon. Members in paying tribute to the sterling work of the Alzheimer's Disease Society, Alzheimer Scotland—Action on Dementia, and all the other groups working in the field. We want to ensure that the reforms involve making certain that local authorities should have responsibility to work closely with health and housing authorities in a co-ordinated way to develop joint community care plans and co-ordinate services at the strategic level.

Local authorities now have greater flexibility in how resources for community care should be deployed to meet the needs of individual groups. We believe that local authorities throughout the country have used that greater flexibility to provide care that is better tailored to people's needs. In developing a full range of local services, the voluntary sector has and will continue to have a very important role in the provision of services—

Mr. Deputy Speaker (Mr. Michael Morris)

Order. We must now move on to the next debate.

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