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Care of Alzheimer's Patients

Volume 460: debated on Wednesday 9 May 2007

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

For many Members, it is often constituents who highlight an issue by bringing it to our attention, either in an advice surgery, in correspondence or over the telephone. That was so in the case of Tony Dean, whose case I bring to the attention of the House this evening, as well as to the attention of my hon. Friend the Minister. Tony’s wife, Avril, first came to see me in February last year, concerned about her husband’s care at a time when he was visibly deteriorating day by day. It might help the House to understand Tony’s case a little better if I give some background.

Tony Dean was born in the working-class Chapeltown district of my constituency in February 1940. He was highly intelligent, attended school in Chapeltown, then went on to Leeds modern school—now known as Lawnswood high school—and went to Sunderland to train as a pharmacist before qualifying in 1962. In 1967, he married Avril and the couple had two children, now grown up and aged 37 and 35. In 1968, Tony set up his own pharmacy in the Beeston and Holbeck area of Leeds. It was a small local shop, which rapidly gained a good reputation and became an integral part of that modest suburb of south Leeds. Many of his former customers still ask after him and try to seek his advice, although he has not been there for a few years.

Seven years ago, Tony was diagnosed with Alzheimer’s disease. As a pharmacist, he knew what to expect and bore the news with typical stoicism. He and Avril had already guessed that something was wrong when, during the preceding two years, Tony had started suffering memory loss—at first, small things such as forgetting how to lock the car door or where the airing cupboard was located in their home. After the formal diagnosis in 2000, Tony knew what to expect.

Tony had always been a sporty and athletic person. A well-built and powerful man of 5 ft 10 in, he enjoyed cricket, golf and bowls as well as bridge and chess. However, one by one, he had to give up those pastimes—and his work—as the disease gained its grip on his mind. Although he tried to take each setback in his stride, accepting what the disease would mean, he fought against losing his driving licence by retaking his driving test, although eventually, sadly, he had to give up driving in early 2002. He was 62 years old.

By the time he had begun to suffer from the excruciating pain of kidney stones during 2002, Tony became so frustrated that he could no longer express his pain or feelings—nor could he even urinate properly, or sometimes at all—and he started to become violent and angry. Eventually, at the end of 2004, he underwent an operation for the kidney stones, but his family tell me that by the time he came home from hospital he was no longer the husband and father whom they knew and loved so much. He had, in their words, “gone to the fairies”.

In March 2005 Avril decided to visit her daughter in Canada, but needed respite care for Tony, whom she was finding increasingly difficult to look after. Following two unsuccessful attempts to place him in private care homes, he was admitted to The Mount psychiatric hospital in Leeds for a month for his care needs to be assessed. By the time Avril returned from Canada, he had been admitted to Leeds general infirmary suffering from bruising and bleeding as a result of falls sustained at The Mount. By this time the disease had made him very aggressive, and although no physical problem could be found, he kept walking into other people as well as objects, doors and furniture.

One month’s assessment at The Mount soon became 15 months. An attempt to place Tony in an NHS continuing care home, Towngate House in Guiseley, in June last year failed after a few days, and he was back at The Mount. After being taken off 24-hour observation while Avril was away on holiday in August 2006, Tony became dehydrated and very seriously ill. He had suffered kidney damage and bruising to his head and eye. He was kept in Leeds general infirmary for three and a half weeks, but he was also suffering from an enlarged prostate, and by now was reduced to a vegetative state. He had stopped being able to walk, talk, feed himself or even drink without help. By this time he was no longer aggressive, so he was admitted to Towngate House again.

Unhappy with the care that Tony was receiving compared with the care he had received at The Mount, I arranged a meeting for Avril with Michele Moran, deputy chief executive of Leeds Community and Mental Health Trust. Michele was very helpful back in November and promised to look into Avril’s complaints about the way that Tony had been treated at Towngate House, as well as trying to find somewhere appropriate to give him the care that he needed.

On 22 February this year, Tony moved to Southlands care home in the old Wetherby road in my constituency. Southlands is a privately run home that offers excellent standards of care, and Tony is now very well looked after. However, it is costing Avril £635 per week. She is receiving a contribution of £87 a week from the NHS, and also receives an attendance allowance of £325 a month as well as Tony’s state pension, but it will not take very long for every penny that the couple have, as well as all their assets, to be used up.

Avril is unhappy that Tony does not qualify for continuing care because he does not have enough “medical need”. After complaining to Leeds primary care trust, she was told by one of its officials that “its hands were tied” by Government policy. Yet when I went with Avril to meet representatives of the PCT in January, the official could not understand why I was there. The PCT agreed to bring in a qualified nurse from Halifax PCT to reassess Tony’s care needs at Southlands. The nurse agreed that a higher level of care was needed and raised the band for payment to £133 a week, although I understand that that higher amount has not yet been received by Avril and that Leeds PCT is very unhappy with the award.

Tony Dean is now comfortable—as far as anyone can tell—and very well looked after, but at a massive cost. The family understands that the NHS could not possibly afford to pay the continuing care costs of every patient who suffers from Alzheimer’s disease, but rightly feels that there should be equity of provision throughout the country. The High Court ruling of January 2006 in the case of Maureen Grogan found that the eligibility criteria for continuing care being used by the Bexley care trust were unlawful. That surely raises questions about the criteria being used by other health trusts and authorities. Given that many attempts were made during Tony Dean’s 15-month stay at The Mount to find a private care home that would take him, and that no home at the time would give him a place, does not that show that he had such high dependency needs that only the NHS could give him the care that he needed?

I am aware that a draft framework for continuing care is to be published soon, so will my hon. Friend the Minister tell me when he expects it to be available and what it might say? Surely, the distinction between health and social care is a false one when examining cases such as Tony Dean’s. Can my hon. Friend give me, the Dean family and many thousands in their situation any hope that the continuing care needed for patients such as Tony will be provided at some future date? Dementia care is not simply social care. A man such as Tony Dean can no longer do anything for himself. He has forgotten how to swallow and he cannot turn over in bed, speak, walk, eat, drink or do anything else without help from another person. He needs 24-hour a day care just to stay alive.

I am delighted that I have been able to hold this debate this evening and highlight the case of a delightful and wonderful man whose life has been destroyed by that terrible affliction and whose loving family has been torn apart by the disease. Their determination, especially his wife Avril’s, has certainly ensured that Tony is now properly looked after, but I hope that it will also show what needs to be done to help many others in the same situation who continue to suffer.

I thank Avril Dean and her family and friends, who have been so supportive. I also thank the Alzheimer’s Society for its help in providing some of the information for tonight’s debate. I should not forget, either, the wonderful staff at The Mount and the Leeds Community and Mental Health Trust and, of course, Southlands care home where Kate looks after Tony so lovingly.

Finally, I hope that my hon. Friend can offer hope to thousands of Alzheimer’s patients, both current and future, that they will receive equitable treatment and care wherever they may live in England and that the postcode lottery becomes a thing of the past.

I congratulate my hon. Friend the Member for Leeds, North-East (Mr. Hamilton) on securing this Adjournment debate.

Nobody in the House, or outside, can fully understand the impact of Alzheimer’s on individuals, their family and friends unless they have experienced it personally. My hon. Friend spoke movingly of the life of Tony Dean and the impact of the condition on him, as well as the consequences for his wife and carer, Avril, and the wider family.

It is difficult and challenging to live with a husband or wife, mother or father after seeing them enjoy a full life—participating actively in their local community, holding down an important job, being a parent or spouse—only for it to be suddenly shattered by that horrendous condition. It is indeed traumatic. For many people, it can be the first time in their life when they require significant input either from the national health service or from the social care system.

Continuing care has long been a difficult issue. Decisions are made locally by a combination of assessment involving primary care trusts and local authorities. As a consequence of cases such as that of Mr. Dean, of court rulings—my hon. Friend referred to one—and of ombudsman’s investigations, the Government acknowledge that there is an authentic and genuine issue that has to be addressed. Until now, we have not been able to micro-manage decisions made on a locality by locality basis. Indeed, it would not have been appropriate to do so; nor will it be in the future.

However, we acknowledge the need for a national framework to provide clear guidance about access to and eligibility for continuing care funding. I have made it clear that, as a result of court judgments and ombudsman’s rulings, it is important that we get the guidance right, which is why it has taken some time to prepare. It is my intention to publish it in June. We believe that it will lead to a more equitable and a fairer system.

The difficult but honest message is that people will always fall on either side of the line, wherever that line is drawn. What is important is that the new system takes account of the fact that we live in a changing society. One of the challenges for the national health service and the social care system is the demographic realities that we now face. People in our society are living longer, which is good news, but in doing so they are developing more complex and challenging conditions such as Alzheimer’s and dementia—conditions that the current system was not set up to address or cope with. That is why we need to issue this new guidance. It will influence the decisions that are made in every local health economy and social care system throughout the country, and it will, we hope, lead to greater equity.

My hon. Friend raises the question of the dividing line between social care and health care. That is incredibly difficult to address because, again, there is a line, so there will always be people who, following assessment, fall on one side of it rather than the other. The national health service has through history been free at the point of need irrespective of the ability to pay, funded through general taxation, and that will always be the position as long as this Government remain in power. On the other hand, social care has always been a means-tested system. There has always been a requirement, linked to income and capital, for people to make a contribution. That is not an invention of recent years; it has always been the nature of the social care system.

I say to my hon. Friend that any political party that suggests to Tony and Avril, and thousands of other people up and down the country, that the concept of free care is sustainable is not telling them the truth. The Liberal Democrat spokesperson, the hon. Member for Romsey (Sandra Gidley), recently said that she regretted the fact that in her party’s manifesto for the previous general election it had misled people into believing that free care was a credible option. She admitted that in the Chamber, much to everybody’s surprise. The question—and challenge—for our society and Government is: what is fair and sustainable under this new demographic reality?

Does my hon. Friend not agree that in Scotland much more continuing care is given free of charge, and that therefore according to his own logic that is unsustainable in the future and at some stage the Scots will have to charge for that continuing care?

Local authorities in Scotland are already saying that it is difficult to believe that the policy of free personal care will be sustainable. Devolution means that Scotland has the right to make that choice, within the restraints of the resources available to it. However, we must recognise that there is a difference between continuing care, social care and personal care, and we must not mix them up. Free personal care is in my view neither sustainable nor necessarily fair, because it bears no relation to the relative ability to pay of the people making a contribution.

We must address the status quo. We already recognise that the status quo in continuing care is not acceptable, which is why we intend to issue guidance—in June, we hope. We also recognise that the changing demographics mean that we need a new consensus for a new settlement in terms of social care as well. That will involve looking at the respective future responsibilities and contributions of the state, the Government or the taxpayer, and of the family and the individual using the services.

We need a new consensus. A coalition of charities has just come together, which has stimulated a national debate that has just begun. There will also be a series of conferences throughout the country, so we will be having an honest dialogue with the people of England on what is sustainable and fair. Given the realities that we now face of people living longer and of an increasing number of challenging conditions, where does responsibility properly lie, both financial and behavioural? As a consequence of conditions such as Alzheimer’s and dementia, more and more people define themselves, and are defined as, carers in our society, and that process will continue. That is why the Chancellor of the Exchequer and I launched not long ago a consultation on the nature of the support that we need to offer carers in future. That consultation process will take place over the next few months, and we intend to publish a new national carers strategy in due course. We have announced some funding for emergency respite care, an emergency helpline and an expert carers programme. Since 1999, every local authority has had an annual grant to spend specifically on supporting carers.

I realise that, now that Mr. Dean is in care, some of those developments are in a sense less relevant in the case of Mrs. Dean. However, we should remember that, as her husband developed the condition and deteriorated, some of her experiences have perhaps not been as satisfactory as they should have been. The level of support available to her as a carer has perhaps not always been of the highest quality and standard. The system is sometimes incredibly difficult for people to navigate, which is why the Government believe that more control and power over deciding the level and nature of care that people with Alzheimer’s and other such conditions should receive should be in the hands of the family and the user, and that less should be in the hands of organisations. The manifestation of that is individual budgets and direct payments, and a greater level of control for those who use such services and their family members, with professionals playing quite a different role.

The Government have introduced many changes that have represented progress. Since October 2001, there has been NHS-funded nursing care in all settings, substantial investment in intermediate care, and a 12-week property disregard of the means test for residential accommodation when a person moves permanently into a care home. There is also the deferred payments scheme, whereby people can delay selling their homes in order to meet care costs, and the raising of capital limits below which individuals receive financial assistance toward their care.

Therefore, the Government have done a number of things, but there is still a lot for us to do. On the specific issues that concern Avril and Tony Dean, I hope that the new guidance on continuing care, which is due in June, will make a difference to them and to many others whose presenting problem is, in a sense, their mental health need because of Alzheimer’s or dementia. Having reviewed this issue, I am not sure that the system that was in place historically took sufficient account of that reality and of the consequences of such conditions in the care required.

Alongside the new guidance on continuing care, we need a new consensus for a new settlement that defines in terms of personal and social care the respective responsibilities of the state, the citizen and the family. The situation today is challenging, given the changes that are taking place, but as Wanless said in his report of not that long ago, we have to address this issue. Over the next 20 to 25 years, that will be a growing challenge facing our society.

Members in all parts of the House—I say that slightly tongue in cheek, looking at the empty Opposition Benches during this incredibly important debate—have accepted that the status quo on pension provision is not appropriate to the changing society that we live in. The balance of people who will be economically productive as against those who will be retired is changing rapidly. The same principles apply to the way that we fund and provide care as people get older. It was possible, in the new framework for pensions, to achieve significant consensus in difficult circumstances. This issue is not just a challenge for one Government, but for society. Let us hope that we can engage in a constructive, honest and authentic dialogue with the people of this country about what a sustainable and fair system will look like in the future.

There are no easy solutions. Wanless sought to bring disability benefits into the equation, and that is a contentious and difficult addition to the subject of the reform of social care. The presentation of the issue as a choice between a means-tested system or free personal care is, in some ways, disingenuous. Much of the way in which the system now works would need to be addressed to achieve system-wide reform that would cope with the realities of the society that we live in now and in which we will live in future.

The Government will not shirk the challenge. There are no easy options and there will be hard choices to make, but we must not seek to impose a new social care system on people. We must first have a serious discussion with people about their expectations, their rights and their responsibilities. As part of that dialogue, we need to identify the options and alternatives available to us. As I have said, some excellent work has been done by Derek Wanless, the Joseph Rowntree Foundation and the King’s Fund on the dilemmas and choices that society and Government face in reordering the social care system.

Alongside financial responsibility, we need to consider how to move from a system in which local authorities and the statutory agencies provide services to people, to one in which people are empowered to take a greater level of control over the care that they want for themselves and their families. There is nothing more intimate and personal than needing personal care, often for the first time in our lives. However difficult and challenging someone’s condition, the family and the individual have the right to maintain maximum control, especially as it often feels as if their lives are spiralling out of control. We need a new consensus on a new funding settlement, but we also need a completely different way of offering and providing social care in the future.

I say to Tony and Avril Dean that we are on their side. The system sometimes feels bureaucratic, unfair and unjust. We will do our best to address that, although some of the issues are not easy to resolve. When individuals are going through the difficulties that that family face, it must be even more difficult if they feel that the system is not on their side. My job is to try to put some of that right, and to lead a direction of travel for some of those issues in the future, so that the country is in a fit state to face up to the realities of changing demographics and rising public expectations.

There was a time when people who were older, or who were dependent or had physical disabilities, were consigned to institutions. Such people will not tolerate that any more and that is good news, as it is a sign of advances in society. More and more people want to remain living in their homes, with maximum autonomy for as long as possible. That asks new questions of the system, and we must be ready to face those challenges.

Question put and agreed to.

Adjourned accordingly at twenty-nine minutes past Seven o’clock.