My Lords, I am particularly grateful for the chance to debate dementia at this time both because it is timely—the national dementia strategy came to an end last year—and because there seems to be considerable movement on both the medical and the social care fronts in the approach to dementia sufferers and their carers. I know this because last December I wrote and presented a documentary for BBC Radio 4 about the subject called, “Suppose I Lose It”, and I learnt a great deal in preparing that programme.
The dilemma at the heart of the debate as I proposed it is exemplified by the response it got. It was first referred to the Ministry of Justice as being a legal matter —just so; the lasting power of attorney is a legal document—but at my request it was rerouted to the Department of Health as primarily a medical matter. I am grateful for this, and I am particularly delighted that the noble Earl, Lord Howe, will be replying for the Government. However, in the wider world there is a risk that the matter of advanced directives and LPAs might fall between the two stools: the legal and the medical.
Let me address the medical dimension first. There is a brief and to the point leaflet available at my local surgery, entitled Worried About Your Memory? The Alzheimer’s Society report tells us that dementia is the most feared condition among the over-50s. They are both fearful of knowing and ignorant of what might happen. This leaflet refers them to the Alzheimer’s Society, Britain’s leading dementia charity. It goes on:
“The earlier you seek help, the sooner you can get information, advice and support”.
There is a desperate need to know more and do more. Earlier diagnosis is the key that unlocks a whole raft of advice and behaviours that can help delay the progress of dementia and assist people to live well with it.
In my Radio 4 programme, the actress Prunella Scales and her husband, the actor Timothy West, spoke frankly of their 15-year journey with her dementia and how they cope with it. After 15 years, she still beats him at chess. Judging by the public response to the programme, their openness did much to promote a willingness in others to speak out and to talk openly about what dementia means in people’s lives.
The Government clearly recognise the importance of this. However, their plan to reward GP practices with a payment of £55 for each dementia diagnosis was strongly and rightly criticised by both the BMA and patients’ groups. The plan will fade out in March.
The answer must surely lie with patients themselves. A strategy should address all those large numbers of people who have reason to be fearful, to offer them the chance of an assessment at a memory clinic. But—and it is a very important “but”—they will come forward for a diagnosis only if they feel that there is something that can be done; otherwise, they may prefer to live in denial and delay getting help. In response to my programme, many people said, “But I don’t want to know. There’s nothing you can do”. That is not the right message.
What happens when you get a diagnosis of Alzheimer’s? The Alzheimer’s Society quotes a recent poll that found 90% feel unsupported after a diagnosis. The report Living and Dying with Dementia in England also stated that,
“people with dementia are not being appropriately identified for end of life care, and that they have less access to, and receive poorer quality, care than people with other terminal illnesses”.
The Dementia Action Alliance also finds the response far from satisfactory. Its recent Carers’ Call to Action makes constructive suggestions, including pre-diagnosis support from the GP; post-diagnosis education for the patient and their family; a dementia adviser or support worker to provide ongoing face-to-face personalised dementia expertise; a planned map of action for the future; and support to remain active and integrated in the community. Those are just some of the 20 suggestions. In some places, some of this is happening. In Scotland, a named link worker is made available for the first year after diagnosis. In England, the town of Crawley teaches the community’s waiters, teachers, shopkeepers and bus drivers how to recognise and then respond to dementia sufferers amongst them. We need more of these initiatives.
I now turn to the legal aspect of this debate. The encouragement of elderly people, especially those with early dementia, to write an advance directive and sign a lasting power of attorney is most important. The response package to a diagnosis refers obliquely to the need to “plan for the future”. That is left deliberately vague, I think to avoid causing pain, but the pain from not facing up to these legal matters will be the greater the longer they are not addressed. The advice needs to be more clearly and regularly spelt out, and given more emphasis.
The concept of capacity is what matters. The progress of dementia is medically unpredictable both in terms of the symptoms, and the timescale over which those symptoms progress. What matters for capacity is not the length of time since diagnosis, but the insight the person with dementia possesses at the time. Barbara Pointon, who wrote to me in response to the programme, said:
“We were only just in time. Four months later and Malcolm”— her husband—
“could no longer sign his name”.
That was in 1993, before the Mental Health Act. She went on:
“No one told me about Lasting Powers of Attorney”— as it was then—
“I just picked it up by chance … but it is an essential document and should be tackled early”.
However, the LPA is a long and difficult document to handle; it is also costly to register. The noble Baroness, Lady Afshar, who apologises for not being able to join the debate, teaches law and said of the LPA:
“I have found the form for giving lasting power of attorney exasperating … I had to make the application 3 times, each time needing signatures from witnesses and attorneys and all corrections have to be made in 15 working days”.
She goes on:
“I cannot see how the average little old lady would be willing to go through all these hoops”.
She is not the only Member of this House to have reported the same complaint to me, so improvements need to be made there.
The need for people with early dementia to sign such documents at the earliest moment is evident. In November last year, an International Longevity Centre report urged policymakers to ensure there are no unnecessary barriers to data sharing between health and social care services and the family, and went on to say that there needs to be,
“a major public relations programme to make more in the population at large”, aware,
“of the ways in which they can make things easier for themselves and their loved ones by planning ahead”.
Last October, Age Scotland launched just such a national campaign, funded by the Scottish Government, urging people to take out a power of attorney. It remains to be clarified whether an LPA in Scotland will be recognised across the UK. Dementia is something we all fear for ourselves and for those we love. I ask the Minister and the Government to take steps to answer the needs expressed here with the utmost urgency and, indeed, sympathy.
My Lords, I begin by thanking the noble Baroness, Lady Bakewell, not only for giving us the chance to debate this important matter, but for having introduced the whole subject with such a clear and informative exposition which has laid out very clearly the challenges we face.
In my few moments I do not want to merely repeat much of what she has said. I found her arguments persuasive, and I agree with them in large measure. I want to raise an associated issue which concerns wills, powers of attorney, and the flow of funds to voluntary groups, many of which are providing services to dementia sufferers. Like the noble Baroness I fear there is another issue which may be falling between different governmental stools. Some noble Lords will be aware that I undertook the review of the Charities Act for the Government. A couple of years ago I produced a report about it entitled
Trusted and Independent: Giving charity back to charities
. There were a number of proposals to try and improve the position of charities, some of which have formed the basis for legislation now before your Lordships’ House, including the Protection of Charities Bill, which is in pre-legislative scrutiny. One issue that was raised was the number of charities. There are over 160,000 registered charities, and probably as many again unregistered charities, so in all a third of a million charities. There were great concerns about duplication. Many members of the public felt that charities were overlapping and that money was being spent on administration and fundraising which could be better deployed in providing the services for which the charities had been established in the first place.
There is room for a debate on that topic, but not tonight. The freedom for people to decide what they do with their voluntary giving seems a pretty important principle. But there is an issue as to why charities do not merge. In my research, this is for one of two reasons. One is amour propre among the trustees, they cannot bear to collaborate and they would rather work on their own than work together. But there is another important technical reason that concerns bequests and wills. This is where we come to the relevance of our debate tonight. As many Lords will know, bequests and wills are a very important source of fund-raising for charities, but they obviously take time to emerge because unfortunately it requires the person who made the bequest to die before the money changes hands. Importantly, where two charities merge, and as a result one disappears, a bequest to the latter may well be null and void unless the wills are drawn appropriately widely.
I will give a quick example. Let us assume that the noble Baroness, Lady Bakewell, and I have both set up separate dementia charities, and after a period of time we agree that we should merge them. We go to the Charity Commission, we get it blessed, and it is all done properly and above board. We also agree that because her charity is larger and more famous than mine, hers should be the surviving charity, and that the Hodgson charity should just disappear. But if the Hodgson charity was hoping for a legacy, it may be that because of the way trust law is drawn, that bequest will be null and void, because there is no longer a Hodgson charity to which the bequest can go, and therefore the bequest must go back into the estate from which it was originally drawn. That seems to me an entirely counterintuitive outcome. The person leaving the money wishes to leave some to the dementia sector, and the merger has been approved by the regulator—so why should the bequest then fall foul of what I would consider a narrow technicality? I understand that that is not my noble friend’s direct responsibility, but I use this opportunity to urge him to remind his colleagues in the Ministry of Justice and the Cabinet Office, as well as the Law Commission, that there is an issue here that is worth tackling. It applies with equal force to powers of attorney, to which the noble Baroness referred. As people live longer, there may be longer periods when they are not compos mentis. The role of family members and advisers holding a power of attorney needs to be similarly properly and widely drawn to avoid the counterintuitive outcomes that I have just described. I am not clear whether the prescribed form of the lasting power of attorney has sufficient flexibility built into it to enable this to happen.
Finally, this issue also applies to standing orders and direct debits. Banks will refuse to redirect such payments to the surviving entity. Instead, they require all direct debits and standing orders to be re-signed. Noble Lords will be perfectly aware that if you tried to get all direct debits and standing orders re-signed, the fall-out rate would be very high indeed, with a very big consequential loss of funding to the charity hoping to receive them.
To conclude, the issue of the implications of dementia is an important and growing topic. My intervention seeks merely to urge the Government to ensure that legal practices are kept up to date with the evolving conditions of our society and, in so doing, maintain the badly needed flow of funding to charitable and voluntary groups, dealing with the very difficult problems of our society, including dementia and other progressive diseases.
My Lords, the noble Baroness, Lady Bakewell, has brought to us a subject that we all need to consider. I cannot see anybody here who is a child anymore, and I think that it is important for us to think about this. I have always felt that in this country—and maybe in other countries as well—people do not want to think about the end of life. They are frightened of dying. It is a very strange thing, because the one thing that we are certain of we are most frightened of, and you would think that that was very strange indeed. I do, because I have never felt frightened of dying. When I was 12 years old, I remember very clearly thinking at bedtime, “What is it that I would have done if I do not wake up tomorrow morning?”. It does not make a lot of sense, but at least I thought about it and it did not worry me. It actually made me think about things that I should try to do.
If you try to talk to people about dying, they are upset. You cannot even use the word “death”. You have to say “passed away” or “not with us any longer”, or use other euphemisms. As human beings, we all have to accept the inevitability of dying. Therefore, like anything else that we arrange in our lives, we should arrange our death. We should plan what we want done when we die, and how it should be done. We should plan around our own personal worries about being ill and sick and having dementia—anything and everything.
The idea of making advanced decisions and having a lasting power of attorney are excellent, but how do you access the wishes of that person? I have looked through all the bits of paper that I have seen, and there is nothing that tells us how it can be done easily and clearly. We very much need to concentrate on the decision of the person who is ill and may be dying, who does not want to be resuscitated time and again. There are cases of people being resuscitated three or four times in a matter of months. That is just not right in the sense of humanity—it is not right for that person. There is no quality of life for that person.
I first read about Dr Gawande in a wonderful article in the New Statesman. That man has his finger on the absolute pulse of what we need to be doing and thinking about. He believes in looking after people, but he also believes in respect for the patient’s views, to the point when he says that the time may come when a patient needs to be able to ask for assisted dying. That man must have a most wonderful understanding of human beings, and the more that we follow what he suggests, the better we will be.
I hope that we can find a way in which to make sure that our advance decisions, such as through the LPA, are there to let everyone know our wishes. We would like to know that whatever we have wished for will be accessed before it is too late. There is talk about a national database, but could we not wear a little bracelet like the Medic Alert bracelets, when we are getting very ill, which would say, “Please look at the database for my wishes”? At least that way people cannot say, “Oh, we did not know that you had wishes”. That is the point—whether anybody knows that you have wishes. I am hoping that my son will have power of attorney for me, but he is a doctor, so it is very simple for me. Not everyone has a son who is a doctor, however, and it is very hard even for family members always to make the right decisions. Therefore, discussion between the parent and the attorney or child is essential.
I hope that something will come out of this discussion and that we will have some way of actually finding out what the person’s wishes are. The noble Baroness, Lady Bakewell, said that it is very difficult to make a power of attorney. She referred to the experience of the noble Baroness, Lady Afshar, who took a very long time to do it. That is ridiculous: if you are trying to do something, and it is so difficult to do, then obviously a lot of people will be put off from doing it. It seems such a good idea that it should not be difficult to do it, and it should be possible to simplify the forms. I hope very much that something will be taken back and we will be assured that we can make decisions while we are capable and that they will be followed.
My Lords, I enthusiastically support my noble friend’s Question to Her Majesty's Government and concur with everything that she said in her impressive opening speech. The issue of advance decisions is not a minor one and must be addressed. With an ageing population and much suffering towards the end of life, it is of critical importance because every one of us will die one day and we would all wish our last days to pass with a minimum of suffering and with the care and treatment that conforms to our wishes. Advance decisions are the key means of achieving this, as otherwise it may be too late if we have lost the ability to communicate.
I speak with some authority on the issues raised, as I was diagnosed with having signs of early Alzheimer’s disease five years ago. However, I was fortunate in receiving invaluable advice from my NHS GP and consultant. This was that, while current treatments did not slow the underlying disease, there were treatments available that would provide symptomatic benefit in coping with the disease. More importantly, the advice was that I should start to wind down my commitments and plan my future. Following this advice enabled me to eliminate my worries about losing my memory and to plan the rest of my life. I strongly endorse what my noble friend has said about the importance of early diagnosis. It seems to me that a responsible general practitioner should be considering with elderly patients, and taking up with them, the issue of how they want to plan the rest of their lives.
As part of this planning process, advance decisions are the natural way to ensure that their wishes are followed as to how they would like to be treated and cared for when they no longer have the capacity to make such decisions themselves or to communicate. Advance decisions are not only about refusing aggressive medical treatment to prevent intolerable suffering. They can, and should where possible, go beyond that to record the patient’s decisions and wishes—for when they no longer have the capacity or cannot communicate —on their treatment or non-treatment, on who should care for them, on how their costs should be provided and on the extent to which they would hope their families and loved ones would care for them. They may or may not decide to include a request to reject aggressive medical treatment in order to prolong their lives, but the importance of recording their wishes for their end of life is paramount. Unfortunately, the current evidence is that only about 4% of UK citizens have signed advance decisions. This contrasts with the position in the USA, where such decisions are common and are encouraged by positive legislation in most states. Indeed, President Obama in 2009 announced that he and his wife had living wills and encouraged everyone to have one.
In 1998, a document called Five Wishes was prepared with the help of the American Bar Association in the USA. It combined the living will and healthcare power of attorney. The five wishes include the kind of medical treatment the person wants or does not want; the kind of “comfort care” they would like—which embraces pain management and palliative care—and what they would want their loved ones to know, such as forgiveness and final wishes for burial and memorials. According to Wikipedia, more than 18 million copies of this document have been distributed worldwide.
It is encouraging that the Government have expressed their support for addressing the issue of advance directives. However, comforting words and setting up forums are not enough to lead to change in the foreseeable future. What is clearly needed is speedy and energetic government leadership, including appropriate resources, to achieve real change in one of the most important areas in which an ageing population needs support. More particularly, the Government should actively promote to patients the need for an advance decision and for the NHS to ensure that all health providers, including the GPs and the hospital and ambulance services, have appropriate procedures for recording and making accessible advance decisions to their staff before patients with life-threatening illnesses or injuries are treated.
My Lords, it is a privilege to take part in this debate. I declare an interest—apart from my involvement in the International Longevity
Centre—as chair, and now co-chair with a Member of the Commons, of the All-Party Parliamentary Group on Dementia, as ambassador for the Alzheimer’s Society and as a “dementia friend”. I congratulate the noble Baroness, Lady Bakewell, on initiating this debate. It is important and has covered a whole lot of areas. I very much agree with her and my noble friend Lady Flather, because one of the issues that the noble Baroness talked about was our unwillingness to face the issue of dying. We forget that dementia is a terminal illness and, if we are going to get things right, we have to be able to talk about dementia as we can now, thankfully, talk about cancer much more easily than we used to be able to.
Although we can talk about dementia a bit more, we do not all realise that there are more than 100 different types of dementia, and some of them are illnesses that enable people to slip in and out of mental capacity and spend a long time being at least partially capable of making decisions and planning their future—in other words, being mentally competent. We all have a certain amount of pride. We want to be sure that we are remembered with some dignity and that some of our dearest wishes will be complied with if we are unable to make sure ourselves that they happen.
It is understandable that everyone is frightened of dementia, because it is now the leading cause of death in women in this country, and the third leading cause of death in men. More than 80% of people in care homes have dementia or significant cognitive problems. It is not a minority issue but it affects so many people. It does not affect just the person with dementia; it affects particularly that person’s carer and sometimes many more people in the family and the immediate friends of that person. Carers do a most amazing job, and I congratulate the Government on having given carers more rights in the Care Act, which is important.
However, one of the most popular areas of advice sought from Carers UK is the Mental Capacity Act. Carers’ thoughts and wishes can be looked at much more easily if a lasting power of attorney has been appointed, because the carer and the person with dementia can rest more easily knowing that the plans for the future will be carried out in accordance with his or her wishes. Many people feel tremendous responsibility that, when they cannot manage their affairs by themselves, their children should not be faced with terrible decisions. They want—I want, and I am sure many noble Lords want—to be sure that there are plans in place so that our wishes can be carried out, and that we do not present our children with dreadful problems and responsibilities. If they have to make decisions, they must try to make sure that they correspond with our wishes.
We are quite accustomed to knowing about this when it comes to money. We know that we can, or have been able to for a long time, make decisions about our money, but very few people know that the lasting power of attorney now includes decision-making possibilities about our health plan. People would be hugely eased if this was better known—if the information was more available. In fact, the lasting power of attorney can deal with our health issues and our welfare issues, as well as our financial issues, and help us to feel relaxed about how our children are going to deal with the future, when we die. They can be carried out, but only if we are all clear about the procedures. It is very important that people do not forget to get things in place in time, as the noble Baroness, Lady Bakewell, made quite clear. The lasting power of attorney can make it very clear who is going to make decisions, which adds to the dignity of the person who has dementia and is going to die at some stage. It is that person’s wishes and advance decisions, not other people’s, which will be taken as read.
It is very important that those caring for people with dementia know that they can get the right advice. I would like to see an Admiral nurse available to every family dealing with dementia. That is not going to happen for a long time, but we need more Admiral nurses and more volunteers for the early stages, so that everybody who is diagnosed—and we need more than 50% of people to be diagnosed—has access to help and advice, either from a volunteer or, later on, from a person who knows enough about the situation to take someone’s hand, whether that is the carer’s or the person’s with dementia, and guide them through this very difficult maze of questions that require answers. If we can do that, we will make life better for people with dementia and those who are affected along with them.
I hope that the Minister will make sure that the Prime Minister’s and the Government’s wonderful achievement in getting a G8 discussion to focus on dementia happens and will be carried forward. It will happen: it will happen with the global envoy; with the national plan, which must be renewed; with the increase in money for research, which must be continued; and with a commitment from everybody in power in this country to make sure that dementia is in the forefront of our thoughts. It is very important and I am sure that the Minister feels the same way.
My Lords, I, too, congratulate my noble friend Lady Bakewell on securing this key debate. Like other noble Lords, I am a huge admirer of her campaigning work on behalf of older people, her mission to get us talking openly and frankly about the ageing process and especially about dementia—drifting into this “unknown world”, as she referred to it in her excellent Suppose I lose it? programme—and her willingness to relate and talk about her own experiences, asking the question that all of us ask ourselves as we get older about whether our memory loss or lapses are just an only-to-be-expected part of the ageing process or represent the early stages of dementia. I really liked her reference in the programme to being as busy and involved as she ever was and to the fact that, despite her fears, if dementia was looming she simply did not have the time to notice it. I hope that that is the case with us all. She is certainly right that staying alert for symptoms and confronting fears early is the best way to grow old.
My noble friend has focused on the urgent need to address end-of-life care for people with dementia and the excellent recommendations set out in the Dementia Action Alliance’s The Carers’ Call to Action. Encouraging the preparation of living wills and LPAs also applies to serious or degenerative illness and long-term conditions where, although the person is stable and may have a good quality of life for many years to come, the unknown can still be expected, such as with stroke or heart disease. Although we all agree the need to keep hammering home the message about preparation for what is or may be to come, going down the actual route of finding out about and preparing documentation and legal forms before anything happens is something we just do not like to face or we put off.
On dementia, it is important to encourage early stage sufferers to take out advanced directives or statements, or a personal welfare LPA. However, we have to recognise that the growing problem out there relates also to finance and resources issues, with legal disputes over wills made by dementia sufferers rising sharply. In the Newcastle Journal, a recent article reported that a local firm of solicitors estimated that disputes involving cases where wills were contested as having been made by people lacking the appropriate mental capacity had risen by over 50%.
Some of those claims related to wills made by people who did not know that they were suffering from dementia at the time, or they involved people who, because of fear and stigma, did not tell the solicitor about their illness and therefore the solicitor was not able to undertake any process to try to test their mental state or capacity. Where property and assets are involved, we also need to stress the importance of good legal advice to avoid vulnerable people making wills that turn out to be invalid, and of taking out the finance and resources LPA, conferring powers for people to act on their behalf if they become incapable of doing so themselves.
As well as being costly, the process of preparing an LPA is daunting. As you get older, understanding the legal processes and documentation, as well as appointing attorneys and replacement attorneys, become more and more difficult, as your contemporaries and the people you would trust to do this are the same age as you and you fear that they may pop off before you. Children and family members undertake this role but, in the case of single people without family, it can be a real obstacle. Affordability is also a key issue for probably most of the vu1nerable people we are talking about. Many solicitors undertake this work on a fixed-fee basis, but the leader of our local carer support organisation, of which I am a trustee, recently told me that for most of the carers and cared for whom we deal with, being unable to afford the legal costs was a major issue.
Thankfully, however, the advance decision or statement process is straightforward, and I commend the excellent Age UK factsheet covering this. I wish that I had seen it when our family was experiencing the first hours of my partner’s major stroke seven years ago—or, obviously, ideally beforehand. The Alzheimer’s Society’s two-page advance decision form is also excellent. I hope that it is out there in GPs’ surgeries, hospitals and hospices so that professionals can guide patients and their families to it. There was no advice at the hospital or talk with me or our family about these issues from medical, nursing or any other staff when my partner faced a really critical 24 hours in A&E and the ICU. I hope that these processes have now much improved and that the Minister can reassure me that he is confident that that is the case.
The developments in medical science mean that more lives are now saved than ever before, but they also mean that preserving life without any real hope of a full recovery are ever more real. The advance decision and statement process recognises that competent and informed adults who are capable of understanding the implications of their decisions have an established right in common law to refuse medical procedures or treatment.
My noble friend stressed the importance of medical and social care advice and support for patients contemplating living wills and for their carers and families. It is all part of the vital communication process that needs to take place with people facing long-term or terminal illness concerning the reality of their situation and the impact of the treatment options, as well as the need for a meaningful discussion about their end-of-life wishes. The medical and nursing professions have improved considerably at having these conversations with patients, and the hospice movement has led the way on this. However, the experience of patients and carers shows that there is still much to be done to improve medical and nursing skills in this regard, and I hope that the Minister will be able to tell us how training and development issues are supporting this.
I was fortunate to be present at one of last year’s Radio 4 Reith lectures by Atul Gawande, the American physician, well known international lecturer and New York Times columnist, which led me to read his recent book, Being Mortal: Illness, Medicine and What Matters in the End. This deals with end-of-life care and how difficult it is for surgeons and other medical staff to have the “hard conversations” with patients that need to take place.
Although set in the context of the American healthcare system and focusing mainly on people with terminal illness, the case studies are of US Medicare and hospice care, so they have a strong resonance with our experience here. Dr Gawande describes pretty graphically how difficult it is for medics to discuss with patients what he calls the “larger truth” about their condition and the ultimate limits of doctors’ capabilities in treating them, let alone what matters most to patients when they face serious or degenerative illnesses or they near the end of their life. It is a very thought-provoking book and I commend it to noble Lords as it deals with the importance of trying to ensure that patients are not kept alive artificially if suffering from a terminal illness.
In a hospital in Wisconsin, over a number of years a systematic campaign took place to get medical staff and patients to discuss end-of-life wishes. This was developed into a hospital-wide standard procedure with the use of a multiple-choice form, much along the lines of our advance decision process but with a more detailed questionnaire. In time, 85% of patients who died in that hospital had a written advance directive, and doctors virtually always knew of the instructions and followed them. I quote from the book:
“This system meant that people were far more likely to have talked about what they want and what they don’t want before they and their relatives find themselves in the throes of crisis and fear. The discussion, not the list of questions, was what mattered most”.
I conclude by underlining my noble friend’s reference to the national dementia strategy, which urgently needs to be updated, and echo the calls made in her programme by Professor Rowan Harwood for it to address how we actually care for people with dementia and support the carers and care workers that care for them. His work at the Queen’s Medical Centre in Nottingham in adapting Ward B47 to meet the complex needs of patients with dementia seemed to display the understanding about care and treatment that we must aim for in the future. It also resulted in savings in hospital costs, so I look forward to the Minister’s comments on this.
My Lords, I am very grateful to the noble Baroness, Lady Bakewell, for bringing this important issue to the House. At a time traditionally associated with making resolutions it feels like a particularly appropriate moment to be considering how we plan for later life together with our families and loved ones. I hope she will agree with me that the contributions from all speakers this evening have combined to make for an excellent debate.
I am sure all noble Lords would agree with the basic premise that all citizens should be cared for and treated in a manner that they themselves would choose, at a time in their life when they may no longer be able to make decisions themselves. The Mental Capacity Act 2005—the MCA—provides the legislative framework for how caregivers should support individuals who may lack the mental capacity to make decisions themselves. The Act and its associated code of practice emphasise the importance of treating each person as an individual and of seeking out their particular wishes and preferences, to ensure that any decision made is in the best interests of that person.
Noble Lords will, I am sure, be aware of the excellent work of the Select Committee of this House which scrutinised the implementation of the MCA last year. Its report, published in March 2014, highlighted that awareness of the Act was poor and that as a result many individuals were not aware of or taking up their legal rights. The Government embraced this finding and set out a programme of work in our response, which was entitled Valuing every voice, respecting every right. The response sets out the great challenge we face—essentially that of bringing about a change in culture whereby individuals are comfortable talking openly with friends and families about their wishes for later life and where wider society treats those who lack capacity with the same respect as those who have capacity.
The noble Baroness asked specifically about lasting powers of attorney—LPAs, to use the abbreviation—and living wills. An LPA allows someone with mental capacity to appoint an attorney to look after their affairs in the event that they lose capacity at some point in the future. As well as the traditional property and finance LPAs, the MCA legislated for health and welfare LPAs, which, I believe, are the focus of the noble Baroness’s question. There are currently more than 1.3 million LPAs registered, and applications are increasing at a rate of 20% year on year. This is good news, but we do not intend to rest on our laurels, especially when we look into the statistics and see that for every three finance and property LPAs registered, only one health and welfare LPA is recorded. The Office of the Public Guardian, which has responsibility in Government for registering LPAs, is using all available opportunities to raise awareness of LPAs through conference events, media engagements and work with multiple partners across finance, legal, health and care settings.
A number of noble Lords voiced concerns that executing an LPA is difficult and complicated. A good example of recent success is the LPA digital tool. This tool allows applicants to enter all the required information step by step on a personal computer and then simply print it out, add the relevant signatures, and send it to the OPG. This on-line service was the first so-called “government digital exemplar” to pass the Government Digital Service’s stringent new 26-point test. We believe and hope that this user-friendly service will help drive further increases in LPA registrations.
In 2015, the Department of Health and the OPG will continue to work closely to raise awareness of health and welfare LPAs. The department is in the final stages of production of a statement of rights which will inform the public about their rights under the MCA, including their right to make an LPA. In addition, the OPG is looking at how LPAs are used and will look to include use within the NHS as part of this project. This should lead to potential new guidance for the health system on LPAs.
Noble Lords will I am sure be aware that overall policy responsibility for the Mental Capacity Act lies with the Ministry of Justice. This was referred to by the noble Baroness, Lady Bakewell. I can inform the House today that the Ministry of Justice plans to run a campaign to raise public awareness of the options for planning for the future and encourage members of the public to think about what would happen in the event of their death or if they lost their mental capacity and needed someone to make decisions for them.
As for living wills, an issue which was mentioned by a number of noble Lords, the House will be aware that this term has no strict legal meaning but in common usage can be taken to describe an individual’s wishes and views about any future medical treatment or indeed any other care, support or lifestyle preferences. An advance decision to refuse treatment however does have a specific legal meaning under the Mental Capacity Act. End-of-life decisions are intensely personal matters. As individuals, our views on how we would like to be cared for can change over time, even when we still have full mental capacity. The Government’s policy is to seek to ensure that individuals are aware of their rights under the law—to make them aware that they have the choice to make a living will or advance decision to refuse treatment—but fundamentally to allow the individual to decide if they want to exercise this right. Our awareness raising efforts here are tied closely to our work to raise understanding of the wider provisions of the MCA. This work is multi-faceted: professional training, which I will mention again in a moment; revising our national governance structures; and ensuring that the MCA is a key line of inquiry in the Care Quality Commission’s new inspection model for care homes and hospitals.
The noble Baroness, Lady Bakewell, cited various obstacles which she felt can deter people from registering an LPA. One of these was the cost factor, which was also mentioned by the noble Baroness, Lady Wheeler. The OPG appreciates that the cost of making an LPA may be an important factor for those who wish to plan ahead. The cost of an LPA is £110. LPA forms, however, have been designed so that they can be completed without a solicitor. However, if a person chooses to seek advice from a solicitor they will have to pay the solicitor’s fees, which may vary and, of course, are a consideration. Another obstacle cited by the noble Baronesses, Lady Bakewell and Lady Flather, was that of complexity. We need to look at the balance of the arguments here. On the one hand, as I have mentioned, there are more than 1.3 million current instruments registered and LPA applications are increasing at quite a rate. Nevertheless, the OPG recognises that it is important to ensure that the LPA process is as straightforward as possible and acknowledges that some people find the existing LPA forms too complex to complete without legal assistance. It continually reviews its forms to make sure that they are easily understood. The OPG is also rewriting and restructuring its guidance and correspondence on LPAs so that it is clear, consistent and accessible to all.
The noble Baroness, Lady Bakewell, asked whether Scottish powers of attorney were recognised in England and Wales. We are aware of the important question of cross-border recognition of powers of attorney, and are considering how best to address it. We are in frequent communication with our colleagues in the devolved Administrations—for example, in Northern Ireland, where that Administration is consulting on new mental capacity legislation based on our Mental Capacity Act. Clearly, raising awareness of issues surrounding mental capacity is a UK-wide concern. My officials intend to share learning with colleagues in the devolved Administrations as part of our upcoming work programme. I will be happy to write to the noble Baroness with the precise legal response in terms of the validity of Scottish lasting powers of attorney in England.
I agree with the noble Baroness that raising awareness is important. We recognise that awareness among the general public of what an LPA is and the benefits of having one is low. We are working to increase this level of awareness, as I described. Having said that, we would not seek to tell adults that they should have an LPA; ultimately we believe that this is a matter of personal choice. My noble friend Lord Hodgson asked whether someone could use a power of attorney to make decisions about legacies. There are exceptions to the decisions that an attorney may make. I would be happy to write setting out these exceptions in more detail.
I take the point made by the noble Baroness, Lady Flather, that it is important for people to know if someone has an LPA in place. Good practice is always changing, but we should not forget that lasting powers of attorney are registered by the Office of the Public Guardian, which maintains a register. Those who wish to know whether an LPA is in place may apply to the OPG to search the register. The noble Baroness, Lady Greengross, stressed the importance of carers. I absolutely agree that carers do a fantastic job supporting those who lack capacity. I am pleased to say that my department has worked closely with the Standing Commission on Carers—
I will write to the noble Baroness about that. The Standing Commission on Carers, which represents the needs of carers to the government policy-making process, is a body we are working closely with. It will help us channel our new statement of rights directly to carers, providing them with an understanding of the rights of the person they care for under the law.
The noble Baroness, Lady Wheeler, spoke about the need for professional training. I agree that that is vital. Health and social care professionals need to learn the basics of the MCA through their initial training and to keep updated on this through continuing professional development. Health Education England provides national leadership for planning and developing the whole healthcare workforce. The mandate set for it by the Department of Health specifically states that Health Education England should,
“work with … partners … to improve skills and capability to respond … to the needs of people who may lack capacity as well as maximise the opportunities for people to be involved in decisions about their care”.
The noble Lord, Lord Joffe, indicated that he felt that there was a lack of government leadership in this area. I would defend, in fact, our leadership record.
We do not want to shy away in the least from our responsibilities when it comes to supporting better implementation of the Act. The legislation underpinning the MCA has been widely praised. Indeed, only a few months ago, we were visited by a delegation from the Swedish Government, who are looking to learn from our legislation as they draft their own. The problem is not the framework. The problem is a lack of understanding at the local level on the ground. It is the Government’s belief that the primary drivers of better implementation of the MCA are local organisations—hospitals, care homes, local banks and solicitors. That is why we intend to make the new national mental capacity forum, which we are setting up, predominantly outward looking. Its emphasis will be on forging collaborations, but then taking these out into the country and putting actions in place at the local level. I would be happy to write further on that, when I do write, as I shall, after this debate.
I have overshot my time but, in conclusion, I emphasise that planning for a time in later life where we are unable to make our own decisions is something that we are all likely to benefit from and which can ease the burden on our loved ones. Unfortunately, as the noble Baroness, Lady Flather, reminded us, I know many people find this type of conversation uncomfortable—even morbid, perhaps. That is to an extent understandable: no one wants to dwell on the possibility of a serious debilitating disease or, indeed, on death itself.
Ultimately, however, planning for the future can be greatly empowering. It can provide a degree of comfort as we approach a vulnerable period in our lives, it can allow us to determine how we are treated—which itself can improve our well-being and health outcomes—and it can provide comfort to our friends and family. The Government are determined to support our citizens in this regard, and the thoughts and expert advice of noble Lords are, as always, most welcome.