(4 months, 1 week ago)
Lords ChamberMy Lords, like the noble Baroness, Lady Pitkeathley, this morning I was reminiscing about the number of NHS debates I have taken part in since I came here 20 years ago. It is at least one a year—I gave up counting when I got to 20—and the tenor of those debates has got more and more depressing. We have had words of wisdom that I have heard several times before—I mention in particular the noble Lord, Lord Hunt of Kings Heath, who always gives a characteristic, brilliant overview of what needs to be done. I disagree with him and the noble Lord, Lord Reid, about the Blair years’ injection of money and reforms. They certainly improved things for a short while but they were never continued, neither during the Blair years themselves nor afterwards. One of the problems with central government control, which we have had, is that you have no history. Nobody remembers. The next Department of Health enthusiasms come along, and no history is remembered by one set of Ministers after another.
I find it utterly heartbreaking to witness what has happened over the last 20 to 30 years, having been first employed in the NHS when I was 17 as a healthcare assistant, having been through the whole gamut of levels of interest and having worked alongside the NHS. No amount of money thrown at the NHS will do anything to improve productivity, generate a workforce proud to belong to the NHS, or produce a quality of care to rival the best in the world that we aspire to, nor change the chronic defensive culture, which is disastrous. We have the skills and the talented people, and we waste them by profoundly inefficient human and capital infrastructure.
The NHS is dying. Dentistry has died in the NHS, more or less, and the NHS is also dying, bit by bit. I was shocked when I was admitted as an emergency last year to a district general hospital in East Anglia. The quality of care and the ongoing support provided were appalling, and that is not a badly rated hospital. I understand that now up to a quarter of young people in London aged 19 to 24 cannot bear to be treated as they are by trying to get a GP appointment, so they go online and pay £39 for an online GP appointment. They are seen on video instantly and they get a prescription the same day. That will happen more and more unless we do something.
Of course, the last 13 years of organisational muddle, with no one able to make any serious decisions and endless time-wasting, has made things a lot worse. We still have this centralised system, which has not changed since 1948 and which gets worse from time to time.
In March there was a Question—I think the noble Lord, Lord Markham, answered it—about the decision to concentrate children’s cancer services at the Evelina rather than the Royal Marsden. I have no axe to grind—I do not know either of those institutions—but my overwhelming sense was that the noble Lord, Lord Markham, should not have called that in for another decision or looked at it again. He should have said, “Let the NHS managers who have made this decision get on with it”. The sooner we get our hospital providers out from under central control, the better. The model where we have everybody in the provider system and everybody in the funding system controlled by central government works only in very small countries. Luxembourg and Iceland both have our system, and it works quite well. After many years of having a more sensible system, the Canadians adopted our system and their health service has gone steadily downhill, with increased waiting lists and people not getting the central funding from federal government that they need. It does not work. When will we accept that we need to develop a model where the providers and purchasers are separate?
I have run out of time so I will just end with my hope that the next Government, whatever colour they are, will get to grips with the need for profound reform, and of course include social care as well in the necessary reform.
(7 months, 1 week ago)
Grand CommitteeMy Lords, like the noble Baroness, Lady Browning, I am proud to be an ambassador for the Alzheimer’s Society. I spent my entire working life as a psychiatrist, working with older people who mostly had dementia and depression.
The situation has got a lot worse in both health and social care since I started working in it. The situation in the health service is appalling, in that they have no training with dementia, and that has not improved. In fact, most people in the health service have no idea what social care is. Indeed, if you asked most of the ladies and gentlemen in our main House, they would not have a very good grasp of what social care is either.
First, we need a total rethink around how we educate the general public about what this disease is about and how it imposes costs on society. The phrase “parity of esteem” is all very well and I like it—it started as a funding phrase in the United States—but almost all the real costs of dementia in this country fall on social care services and on families. At the moment, the estimated cost is £27 billion. Of that, a good 80% is spent by families and social care.
It is not the severity of dementia that demands care; it is the activities of daily life. There was a lovely, elegant piece of research in Denmark looking at what factors of dementia require care from others, and they are always the activities of daily life. That is what social care is and where we should put most of our money.
I do not agree that more MRI and PET scanners would make a jot of difference to diagnoses because a diagnosis is usually made by the family or home carers before they get anywhere near. I know it is nice that we can now diagnose; I had a lecture called “150 Types of Dementia”, which went down a bundle at Queen Square I can tell you. The reality is that half a dozen are interesting, and there are some more that we are starting to understand better, but that is not the issue. It is about very basic care. The drugs will not be around for a long time yet. The ones we have now are nowhere near fruition in terms of clinical service to all the patients who need them.
I back up what my noble friend Lord Warner said about the need to fund both organisations—health and social care need to be integrated to deliver this service—but we are a hell of a long way off.
(7 months, 1 week ago)
Lords ChamberI thank my noble friend for the question. The whole point of trying to develop the career structure that we talk about is to make sure that it is a career that people want to go into across the board, be it in urban or rural areas. Part of that is putting in place about 100,000 training places—this is the first place in the world that has been set up—to try to set up a real career structure. We are starting to see early signs of it working. The number of beds blocked has decreased by 10% in the last few months. It is early days, but it is beginning to work.
My Lords, does the Minister not agree that, while the increase of 70,000 people is very welcome, it is in the context of a turnover of nearly 400,000 every year in care because of the poor career structure? I understand and appreciate that £70 million has been put into training and a care workforce pathway, but does he not agree that it is profoundly inadequate compared with the £11 million a day that is put into NHS nurse training?
The 70,000 increase is a net increase, so it takes into account the turnover of staff, many of whom rejoin somewhere else in a social care setting. Notwithstanding that, I agree with the noble Baroness that a turnover rate of around 28% is too high in any sector. For about 20% of employers the turnover is only 10%, so clearly some know how to develop a career structure and have motivated staff who will stay there. The intention behind the programme and the career pathway we are trying to set up is to try to get more of that across the system, because retention is key.
(2 years, 2 months ago)
Grand CommitteeMy Lords, I am so pleased that the noble Lord, Lord Dubs, raised this issue. One is always humbled in speaking in a debate where so many participants either can bear witness to the personal impact of a life-changing disorder or have been close enough to have supported people throughout.
I share with the noble Baroness, Lady Fraser, the notion that we want not only neurologists. She referred to what I call the “hit-and-run brigade”: you go, you see them, you are diagnosed and you are off. That is it; you might get a follow-up appointment if you are lucky. I know because I have been there: I have been one of those people. I know how difficult and frustrating it is to provide a service. I trained for two years at what was then called the National Hospital for Nervous Diseases in Queen Square and its outpost, a delightful hospital at Maida Vale. It was one of the most fulfilling expenses of my life. It was very lovely. They used to bring us junior doctors a little silver teapot every afternoon for afternoon tea. Those were the days, when the NHS was a little different if you were at a posh hospital, which that was. In the end, I retreated to my first love, psychiatry, but I have obviously seen a lot of neurological conditions since then.
The problem is that we are down to one neurologist per 170,000. France has one per 50,000. Italy has one per 5,000 head of population. They are very well-trained neurologists, who are almost all dually trained in psychiatry. That makes a phenomenal difference to access and to the importance of the specialty in the general bargaining power.
Some very welcome changes have happened. National clinical directors are to be appointed in neurology, neurosurgery and spinal surgery. They will be crucial, because the commissioning of these neuroscience services will be devolved rather than done centrally. Those appointments will be utterly crucial for making an impact. Noble Lords might ask what difference they will make, but I remind them about getting the right person in the right place. When I was at Queen Square, stroke disease was not a neurological condition, even though it is the commonest neurological condition there is. It took a neurologist, Charles Warlow, in Edinburgh and his colleagues saying, “No, important physicians and neurologists should be interested in this as a core business.” In part, we need that focus again around these very disabling, chronic disorders.
I have a special interest in one range of disorders: that spectrum that goes from Parkinson’s disease through Lewy body dementia through Alzheimer’s disease. They are similar, but if you treat one with the wrong medication you get adverse reactions. They are highly disturbing and very disabling conditions. It is a very sad way to end your life with any of these conditions when they become very serious. Because we do not have access to neurology or specialist neuropsychiatrists, we have a situation where access to diagnosis and to the right kind of support and care just does not happen. People fight for months to try to get a diagnosis; it goes on for years. People get one diagnosis after another, and shoved from pillar to post. Sometimes it is only five to 10 years later that people actually get the right diagnosis.
It is crucial that we get some kind of agreement about who should care for these people and how we should get them channelled. The number is increasing as the population ages; naturally, the prevalence is rising in the older population. I give major support to the notion that we should have a neurological task force to look at the increasing demands of these serious and disabling disorders.
(2 years, 8 months ago)
Lords ChamberMy Lords, I am an NHS recidivist, like many in this House today, but, after 40 or 50 years of employment in it, I am not necessarily a great fan.
Somebody mentioned 20 reorganisations; I can think of nine that I was personally involved in, some of which I was very enthusiastic about at the time. Looking back, I see that none of them addressed the NHS problems of chronic low productivity and some very poor outcomes—the noble Viscount, Lord Bridgeman, mentioned some relating to cancer. I know some of the data is difficult and not easily comparable, but we are consistently producing poorer outcomes than we should be getting for the resources we are putting in, particularly resources going into those who are employed in the NHS.
The third great problem is, as always, the attitudes—the hangover—which are particularly marked in some parts of the country. Certainly, there are the attitudes of the NHS to its patients and to our feeling that we are supplicants asking for help when we should be receiving a service as of right. These attitudes have not really shifted and have, in many ways, got worse.
I understand why we might be having a reorganisation now. After all, the direction of travel that we have been moving in for so long has come to a bit of a standstill because of the difficulties of foundation trusts not being able to exercise any powers because they are in debt. The direction of travel seems to have come to a full stop. Everyone is asking for better integration between health and social care. We must deliver that. The difficulty is that, if you look at where integrated social care works, it does not work because of senior management only. We have had integrated care boards in Northern Ireland since 1973. I have visited and seen them enthusiastically in action. In fact, at senior level, they work quite well, and some interesting programmes have come out of them. However, when you look at them on the ground, you see that health and social care staff are not necessarily working together. They must be collocated in teams that are jointly managed to make a real difference to individual patients and their carers.
This Bill is a little part of the start of a system that could work but there are some great big holes. For example, I would like to know to whom the integrated care partnerships are accountable. Certainly, we cannot see any way that their strategic plans might be necessarily taken over by the integrated care boards. Do we have some guarantee that they will take notice of what the integrated care partnerships want?
The other problem is the great white shark of the NHS swimming alongside a shoal of sardines, including local authorities, care providers and independent sector care provision. I have seen it time and again: the shark always gobbles up the resources. We saw it again in the recent care Bill. I want to know how that will be addressed. Can the Minister guarantee that we will get mental health as an equal partner on the integrated care boards? That seems utterly essential. Public health must also be in there. Can the Minister reassure us that that will be in statute?
Another problem with this Bill is the clawing back to centre of powers. Again, I understand the frustrations that Ministers see. I remember watching Sir Edward Heath hold up the closure of a rather second-rate neurosurgical unit for 10 years because it was in his constituency. I watched Sir Frank Dobson being seduced by consultants at Barts and the London and ending up with a profoundly expensive two-site system that was quite unnecessary for east London. I want to know how—I hope that the Minister will be able to reassure us on this—those doing the detail on this Bill will somehow constrain ministerial meddling.
(4 years, 6 months ago)
Lords ChamberMy Lords, I think that it was Wallis Simpson who famously said that you cannot be too rich or too thin. We never in this House debate being too rich, but we occasionally debate the problems of those who aspire to be too thin. Wallis Simpson, famously, ate almost nothing and was probably mildly anorexic.
The noble Baroness, Lady Parminter, has outlined the terrible situation that families find themselves in when they have a child or young person suffering from this terrible disorder, whether or not it is anorexia nervosa, obesity or bulimia—bulimia in particular is very difficult to treat, as is anorexia.
While I was driving down from Norfolk this morning, I listened to an excellent edition of “Woman’s Hour”, on which a young woman called Hannah described her own anorexia and how it felt to her. She had been waiting for treatment in the Greater Manchester area for 18 months, and she was offered just one of a group of services that were available in the area, with no thought as to whether it was appropriate for her. Even then, it was a great time coming. Dr Agnes Ayton, chair of the eating disorders faculty at the Royal College of Psychiatrists, made many of the points, brilliantly and articulately, about the difficulties that people have in accessing services, saying that while we have invested in young people’s and children’s services through child and adolescent mental health services, we have left young adults far behind in their ability to gain access.
Having re-read the debate instigated by the noble Lord, Lord Giddens, back in 2013, it strikes me that we have repeated this evening exactly what was said during that debate: that there has been very little improvement—and, of course, the numbers have gone up. As to why the numbers have gone up, the noble Lord’s own specialty has told us: they have perhaps been rising since the 1960s. We are very keen to say that it is not a lifestyle choice, but it is lifestyle factors that have made people want to go down this route in the first place. Biological triggers turn a normal seeking of a slim, elegant, beautiful figure into something much more pathological. That is the thing that we really do not understand.
As the noble Baroness, Lady Parminter, said, the report by the NHS ombudsman on how patients are failed was truly shocking. Since then, we have had much better guidance in commissioning, but those documents are often ambitious, noble but pie in the sky and are not widely taken up, for all the reasons which have been articulated. Eating disorders are more common than people realise. Some 80% of people who have them never go to a doctor, and many episodes are managed in families with no access to specialist services. Such services may not be needed, because, within a few weeks or months, the child or young woman has tackled the disorder themselves and has been able to get to grips with what has become a pathological desire to be thin without flipping over into something that does not get better. It is important to remember that, because those who are referred are therefore often in great need of specialist care, and that is the thing that is so difficult.
Eating disorders are of course prevalent in young men as well, particularly those with a gender disorder of some kind or who are troubled by their sexuality. I have treated at least two young men with anorexia nervosa and found them quite as difficult as young women to reach and help through their disorder. It is also common—and getting commoner—in older people. My Aunt Florence never recovered, and died when she was in her 90s. She was slim, but healthily so, all her life until she was in her 80s, when she started to adopt strategies identical to those of a much younger woman. This was similarly pathological, and she starved herself almost to death. Elderly people who get these disorders are often inappropriately investigated, because of the link between physical ill-health in old age and loss of appetite. Perhaps “inappropriately investigated” is not fair, but these things are much commoner in later life than one might imagine.
We have had the commissioning help after the ombudsman’s report and we got the extra £30 million put into young people’s services, but it has simply not touched adult services. Other noble Lords have already mentioned the mortality rate, so I will not stress that.
Historically, such disorders were a lot commoner than we think. There is a description of an illness suffered by Mary Queen of Scots which is a classic eating disorder. There are explicit medical descriptions from about 1670. In the 19th century an awful lot of young women had a condition called chlorosis. People turned slightly green because they had iron deficiency, but it is also thought that this was largely caused by anorexia. There were pressures on young women then which they too addressed in that way.
Treatment is extremely difficult. Evidence-based treatments are few and far between. What we try to do is keep people alive and at a healthy weight long enough for them to get a grip on it and recover for themselves. That is true not just for anorexia nervosa but for many other mental health disorders, for which we do not have the specific treatments we have for psychoses. People need a lot of help, support and psychotherapeutic approaches. The ones that are good for some people may not be for others. The commissioning document makes it clear how important it is for people to be given choices.
My time is up. I stress that we need more investment in a choice of services which are readily accessible for people locally, so that they do not have to just accept what their local service provides. That is the major thing the Government should be doing. What are they intending to do?
(5 years, 4 months ago)
Lords ChamberMy Lords, I shall speak to Commons Amendment 1C, which was agreed in lieu of Amendment 1B, which I moved in this House before the Recess. I start by thanking the Minister and the Bill team for the discussions it was possible to have in the latter stages of the Bill, which helped get us to a position that we now feel, particularly in relation to the definition, is pragmatic and one that we can live with.
First, I welcome the Government’s decision to drop what has been termed the “exclusionary definition” proposed earlier. It had a whole raft of problems but I have no intention of going into them again now. It is important to acknowledge that the Government took on board the views expressed by Peers and others in the wider sector on that definition. The outcome of those discussions—that there should be no statutory definition in the Bill—is a sensible and pragmatic compromise after a rather long and tortuous journey. Those of us involved in putting forward different definitions had all received legal advice, which said that our definitions were fully compliant with Article 5 and so on. However, we were never going to resolve that; they just came from different lawyers with different opinions. We had to find a way forward and we did. The fact that we will now be using the code of practice to set out—clearly, I hope—where deprivation of liberty is and is not occurring and that it can reflect existing and evolving case law is important.
I took the opportunity to listen to the debate on the Commons amendments in the other place on 2 April and found it very illuminating. I was particularly pleased to hear the Minister for Health and Social Care, Caroline Dinenage, say:
“We will set out the meaning of a deprivation of liberty in a positive”—
I emphasise “positive”—
“framing and in a way that is clearer for people and practitioners”.
That was the very nub of my concerns when I put forward my definition: it was not clear; it was all framed in a negative way; and it was very difficult for the families affected and, indeed, for some practitioners to understand. This is a real step forward.
We are now to have a code of practice and a definition set out there. I was also pleased to hear the Minister say, when asked about the timescale for producing the code of practice, that it,
“is being worked on as we speak … Once we are all content that the code of practice is robust and fully covers everything that we want it to it will then be presented to both Houses of Parliament”.—[Official Report, Commons, 2/4/19; cols. 964-5.]
That is very positive. However, can the Minister update us on the timing for the code of practice? When will this House see the guidance? It is absolutely critical that what it says in the guidance—what we have been talking about—does not mean that we have kicked the can down the road in terms of some of the problems associated with the definition. When I see what is in the code of the practice and the guidance contained in it, my acid test will still be whether it is easy for the lay person—I include myself as a lay person here—to understand, not full of double negatives or pages and pages of rather confusing case studies. I would be grateful if the Minister could update us on the timing of that.
Secondly, I was extremely pleased to hear that the definition will be considered and reviewed regularly—and kept up to date, as I have said, with evolving case law—and that there will be a report of that review laid before Parliament within three years of the measures coming into force. That will be another opportunity for this House to scrutinise how it is working in practice. I am very grateful to the Government for listening to my representations on the need for a review and for a report to come before both Houses.
Could the Minister give some commitment that, when the review is published—and this House has had a commitment to look at that review—the code of practice will be regularly updated? A review is important; our having an opportunity to scrutinise it is important; but most important of all is that the code of practice be regularly updated. I contend that some of the problems this whole Bill is designed to address, such as the backlog of deprivation of liberties cases, were in part caused by the fact that the code of practice was not amended as circumstances changed and as more and more cases such as Cheshire West were brought into the scope of the Bill.
I would very much welcome assurances from the Minister on those two points, and thank her for being as helpful as she has been. I thank colleagues on all Benches, because I feel that we have worked very collegiately and co-operatively. I hope and feel that that has helped improve the Bill.
My Lords, I do not really share the enthusiasm or optimism of the noble Baroness, Lady Tyler, although I often shared her views on what needed to be done at earlier stages. We are all rather tired of this Bill and I see nothing to be gained from hindering its passage, but I cannot let it pass without expressing my profound misgivings. We—the Members of this House—have failed to do what we were supposed to do. Our task was to make the deprivation of liberty safeguards—now the “liberty protection safeguards”—more practical, more focused on those at risk, more cost-effective and safer, and we have allowed the Bill to disintegrate into a sprawling, all-encompassing bit of a nightmare. The procedures may be simpler—we have cut out one layer of bureaucracy—but we have allowed these provisions to be extended even further than Cheshire West, even pursuing people in their own homes in a way which I do not think many families will appreciate.
The one thing everyone, including the JCHR, was hoping we would do was to introduce a realistic definition of a deprivation of liberty. In the end, we in this House just copped out. We could not agree; we got into a mess; the lawyers could not agree either; so we have just said, “No, let us put it all in a code of practice”. As many noble Lords will know, I wrote some of the early codes of practice for the Mental Health Acts, and I know that codes of practice suffer from mission creep—they get more and more stuff in which is quite difficult for people outside in practice who will implement it, and do not get updated very regularly because it is difficult to do so. Indeed, if there is no clause in statute, which most codes are fixed around—and there will not be, of course, as is intended—it will have to be arranged around Article 5. That will leave a situation in which the lawyers will have a field day, and in which we will still be waiting for case law to give us some guidance.
Meanwhile, the numbers are going up. My latest count was 140,000—I think the official number a couple of months ago was 125,000. There will be a lot more soon. About a third—it may be even more than that—will be waiting for over a year, and 75% of them are elderly people with dementia, who will probably die before they get their rights looked at. Will it make any difference to them? Generally, it will not make one whit of difference. If we had done our job properly, the numbers would have gone down, and there is a chance that those at greatest risk—for example, people with severe dementia who are kept in locked units, who never see the light of day, and people with severe disabilities in residential care—would have been seen sooner and would have had their care plans addressed in respect of their freedoms.
Meanwhile, these last three years have seen an industry grow up around the implementation of DoLS. It is now called DoLS by everybody out there—I am not sure that most people know what that means. A costly public service has developed which has a life of its own, and which, as we have seen, takes money directly out of care budgets. When Staffordshire quite sensibly tried to call a halt and said, “Hang on a minute, let’s go for the worst cases: those most at risk, those with the most profound disabilities or where there is a disagreement”, somebody complained, and they were told in no uncertain terms by the Local Government Ombudsman to get on with it and to get back to doing everybody. So the waiting list grew yet again. Of course, many other county councils and metropolitan councils were making similar decisions, but they have all had to go back to compiling the waiting list, which grows and grows.
The other people who will love the Bill are the lawyers. Just imagine how you will be able to debate the nuances of Article 5 meanings when the code of practice fails to live up to expectations.
This Bill should be a lesson to us all. It is legislation which arose from a Supreme Court judgment—an impeccable theoretical case, made without any thought to the practicalities that would affect 2 million people. The Law Commission was as tied up in knots as everyone else and could not see a way through. My goodness, it worked long and hard on it in an admirable way, but it could not get beyond the problems of having to satisfy Cheshire West and the Supreme Court’s judgment. This House’s inability to grasp the Bill will not provide any more than a hit-and-run assessment of one patient’s disabilities and whether they are deprived of their liberty. It will not provide any more care for people, and it will be a bit of a disaster.
I have been as guilty as everyone here because I was not here for Report, when perhaps I should have been here to say this more clearly—I am sure that my colleagues quite often feel cross with me when I am not here, and I apologise for that. However, I am not blaming the Ministers either, who have, unfortunately, changed during the passage of the Bill, which has taken a lot longer than it should have done. They have struggled as best they can with a complex, technical Bill; nor am I blaming the team at the Department of Health, because Sharon Egan and her team have been squashed between the lawyers, the DoLS industry, the obvious need to make things viable and less depleting of care budgets, and the impossibility of satisfying everyone.
The only flexibility left—because we will pass the Bill—is that before the Bill is commenced, the Government should pause and do a few more sums; otherwise, we shall be back here in another three years, looking at how we can make this legislation more viable. Many more millions of hours of care staff time will have been wasted in failing to improve the care of mentally incapacitated people. Their rights need protecting, but this Bill will not do it.
My Lords, I have taken a slightly different view. I declare my interest as chair of the National Mental Capacity Forum, and I am grateful to my leadership group in that forum for their comments, constant advice and constructive criticism. I am also most grateful to the Bill team, the noble Lord, Lord O’Shaughnessy, and the Minister for having listened. We have certainly given the Bill what we could term a bumpy ride. I think that needed to happen and do not apologise for it at all. From what I understand, the way the code of practice is now being developed will result in a far better situation.
(5 years, 8 months ago)
Lords ChamberMy Lords, I support this amendment. It is well thought through and I am glad that the Government have brought it forward. However, like my noble friends Lady Hollins and Lady Meacher, I have some very serious doubts about the continuance of this Bill as it goes to the Commons. We have already raised our anxieties about how it fits in with the Wessely review, and we have come to the end of our deliberations—when the noble Baroness, Lady Thornton, and the noble Lord, Lord O’Shaughnessy, normally congratulate each other on the process that we have gone through—but in fact we are leaving this Bill with the very same problems with which it came to this House.
The Bill came before Parliament because of the totally unviable nature of the current legislation. However, we do not have a statutory definition of deprivation of liberty for the purposes of this legislation and we now intend, as the Bill goes to the Commons, still to intrude on people living in their own homes. We are talking about a Bill that affects about 1 million people. It is currently projected to cost £2 billion a year but, with our amendments that introduce some improvements, it will cost considerably more.
Will the Commons really tackle the key issues? We have not seen the wood for the trees—that is the problem. We have tackled some really important minor issues but not the major issues that will make the legislation implementable in the care system. Can the Minister tell us what will happen next?
My Lords, I welcome the amendment and declare my interests as set out in the register.
I too would like to talk about the application to adults with learning disabilities, autism or dementia who also have a mental health diagnosis, and I would also like to talk about what other noble Lords have mentioned—the interface between the Mental Health Act and the Mental Capacity Act. As the Minister will have seen, Sir Simon’s review redraws the dividing line between when a person should be detained under the Mental Health Act and when they might fall under the Mental Capacity Act.
Given that the proposed new dividing line is “objection” —in other words, those not objecting fall under the Mental Capacity Act—the role of the advocate in articulating the wishes of the individual becomes paramount in ensuring that the individual is treated under the appropriate legislation. With that in mind, I have a couple of questions for the Minister. Does he agree that advocates will need to receive sufficient support and training to understand this new dividing line, as and when it comes into being? Can he also clarify who will be responsible for ensuring that the training takes place and from whose budget the funding for it will come?
(5 years, 10 months ago)
Lords ChamberMy Lords, I am the world’s greatest pragmatist in this matter. I am very sympathetic to what the noble Baronesses, Lady Barker and Lady Tyler, are saying. This Bill is by no means perfect. It has huge gaps and we would not have started from here, but the reality is that this Bill will be with us for the rest of the autumn and I believe that Sir Simon Wessely’s report will be submitted to the Government around 12 December, so it is likely to come before Third Reading and before we finish the Bill. We will be able to see if there are great big gaps. I do not think the two things will overlap very much. We might be helped out, particularly on amendments on advanced directives, and in that context we can perhaps make ourselves closer to what Sir Simon Wessely recommends, but I do not think there is anything to address, except that the current Bill is not working. We have all those people waiting for an assessment who will never be assessed. We need some legislation in place. There is some urgency. I know we would like a perfect Bill, but we are not going to get one. What we need is an implementable Bill which makes assessments doable for people who need them and so that we can get some process in place. The Bill is not perfect. We would not start from here, but we have this Bill and we should continue with it.
I shall continue on the theme that my noble friend Lady Murphy has set out. Last week, I chaired the National Mental Capacity Forum leadership group. One of the people there said that:
“While there was an initial knee-jerk reaction amongst care providers and the local council, if you consider the”.
liberty protection safeguards,
“in more detail you quickly come to understand that it is actually quite an innovative solution”,
because there is such a backlog and so much difficulty in trying to get anything in place.
I am concerned that we are trying to draw clear lines between different types of illnesses and conditions when it is pretty impossible to do so. There are mental health conditions that impair your capacity, even though you may be compliant with treatment, there are physical illnesses that result in impaired capacity, and there are illnesses—Lewy body dementia is one of them—where part of the illness means that you may be a risk to other people. Huntington’s disease is similar and a horrible disease to have. Trying to draw clear lines between those different groups is difficult.
I looked at the amendment and for a definition of “fluctuate” and “short”. I tried to think how I would define “fluctuate” or “short” in a clinical context, and I could not because “short” might be short to some people and long to others and fluctuation can be all kinds of directions and with different degrees of severity. The difficulty we are grappling with here is that we are trying to write something in legislation that will be literally black and white: black words on a white page. The people we are dealing with are incredibly individual and have very different needs. That is why, returning to our previous debate, the stress on wishes and feelings and on consulting people who know the person becomes incredibly important. We will go on to talk about ways that people can call for external scrutiny because, if they care about the person, they need to be able to do that.
My goodness, we are back in the Bill, out of the appendix. I am formally moving that Clause 2 do not stand part. However, I will address my remarks to the two amendments in my name in this group. They concern advance consent. This amendment comes from Clause 6 of the Law Commission’s draft Bill, and inserts two new sections into the Mental Capacity Act: advance consent to certain arrangements, and the effects of advance consent. These sections provide for a person to consent in advance to specific arrangements to enable care and treatment that would otherwise amount to a deprivation of liberty.
To give advance consent, the person must have the capacity to consent to specified arrangements being put in place at a later time that otherwise would be considered deprivation of liberty. They must also clearly articulate the arrangement to which they are consenting. Provisions in this amendment relating to advance consent are similar to those relating to advance decisions to refuse treatment which appear in Sections 24 to 26 of the Mental Capacity Act.
I am very grateful to the noble Baroness, Lady Murphy, and my noble friends Lord Touhig and Lord Hunt for supporting this amendment, and I think it is important that we probe this particular issue. On previous Committee days and in discussions with stakeholders, one of the recurring sentiments was that the well-being of the cared-for person should be at the front of this legislation, and it seems that advance consent is definitely a crucial issue in putting the cared-for person at the heart.
Amendment 85 concerns unlawful deprivation of liberty. Again, this amendment comes from Clause 7 of the Law Commission’s draft Bill and would insert two new sections into the Mental Capacity Act on unlawful deprivation of liberty and on proceedings and remedies. These sections would provide a route for an individual deprived of their liberty in a private care home or hospital to seek redress where proper authorisation under this Bill and the Mental Health Act, or an order of court, has not been obtained. This amendment seeks to define the private care provider. Again, we have been concerned about how the Bill will be applied to those in a private care setting or hospital. It seeks to probe how they should be affected by the Bill.
My Lords, Amendment 84, in the name of the noble Baroness, Lady Thornton, is possibly one of the most important amendments we have tabled to the Bill. It has become so much more important over the last 20 or 30 years to try to encourage people to make decisions in advance about what should happen to them and to encourage them to think about what will happen in the event of things going wrong—to think about things such as lasting powers of attorney and advance decisions on mental health services. I understand that Sir Simon Wessely will recommend some changes that are very similar to this to go into the new mental health legislation. It would be good, bearing in mind our previous discussions, if we could feel confident that the same sort of approach was being taken in this Bill.
Advance decision-making in legislation has proved quite difficult to implement, because you have to have a widespread campaign of understanding how people can make these decisions. It also has to have the individual making the decision accept that things will happen to them that they are not expecting, which is sometimes very difficult. That is why it so difficult to get people to sign up to insurance against long-term care; they simply do not believe that it will ever happen to them. It is very difficult to get these bits of legislation implemented and widespread, but we have to start somewhere. This is such an important piece to try to get into a Bill, to start people thinking about their future and what is acceptable. This would be a very important thing for the Bill.
I would also like to see Amendment 85 implemented. It is something that the Law Commission had in originally. I am not quite sure why it came out. It sort of just disappeared in the transcription somewhere. It is an important safeguard. We tend to forget all those Victorian cases a couple of hundred years ago when people were quite regularly held in circumstances against their wishes and unlawfully deprived of their liberty. It is as well to be reminded that it can, and probably does, still happen quite frequently. To have something on the statute book would be helpful, so I support the two amendments.
My Lords, I am afraid I will take a different view. Amendment 84 is potentially incredibly dangerous in the context of the Bill. I can understand why people with a mental health disorder who know exactly what is likely to happen to them when they relapse and know what treatment they do and do not want can make an informed decision based on their previous experience of their illness and episodes. Here, however, we are asking people to provide advance consent to their liberty being deprived in a situation that they do not know about and have not experienced. The evidence from advance care planning—I have a recent paper from Ontario—showed that people’s knowledge was very poor. There were decision conflicts and when they were re-interviewed later they had re-evaluated their decisions in the light of further information and as things had moved forwards.
The problem is that the cared-for person’s experience of care is based on human interaction. They cannot predict who will be the carer at some point in the future, nor how that interpersonal chemistry will work. I am concerned that there is a real danger that someone could be locked in to having to live with what they said previously. There is a lot of evidence from the world of care planning that people do change their preferences. Indeed, as an illness progresses, they may change them very radically.
No, I have not lost confidence in that; I simply wish to undertake further discussion, given that—I say it again—it looks entirely likely that mental health legislation may be changing. I think, in light of that, that it is a wise discussion to have.
May I just add that I think it is important to read all the amendments of the noble Baroness, Lady Thornton? She provides for any opportunity, any chance, that the individual may indicate that they have changed their mind, at which point those things come to an end, essentially. They have to be quite specific that if there is any doubt in somebody’s mind that this is no longer something that can be continued, that there is anxiety about them being implemented, then it comes to an end. So I think those things can be taken care of.
My Lords, these amendments are examples of the long and complicated amendments which I think could end up going wrong, because they are trying to cover quite a lot, which will probably become gold-plated and give rather too much weight to the legal profession. I do not think that what Sir Simon Wessely planned to do is relevant here, because it is not really about mental illness but about dementia. If that is the case, people may not be in a position to change their mind at a later date, so these amendments are very complicated and probably rather unwise.
I will speak to Amendment 87C and apologise to the Committee for being unable to remain in the Chamber earlier—I had two commitments that I had to fulfil. I emphasise that it is a probing amendment; it will certainly need rewriting at Report if we bring something back. I thank Godfred Boahen of BASW, whose briefing was an enormous help in preparing my remarks.
Our aim is to stimulate a debate about the processes to deal with deprivation of liberty issues which arise in domestic settings. There is a case for enhancing the assessment processes in those situations. As it stands, the Bill makes no mention of people in domestic settings where deprivation of liberty is at issue. It is not clear—to me, anyway—what the Government have in mind and I hope that the Minister will be able to clarify the position. The Bill leaves vulnerable individuals in domestic settings where there is an issue of deprivation of liberty with no judicial protection, except through an appeal to the Court of Protection, a process which is onerous, costly, stressful and slow. That also leaves this group of people without access to a mental capacity professional in the event of an objection to the proposed care plan. The amendment assumes that, where a deprivation of liberty arises in a domestic setting, this would be considered, as now, under either the care planning or the safeguarding provisions of the Care Act 2014, but with two important reforms, which I will come to. Thus domestic settings would not come under the processes set out in the Bill.
Before referring to the proposed reforms, I need to clarify the two key processes involved under the Care Act, or the reforms would not make a lot of sense to anybody. First is the prospective model, as proposed by the Law Commission, when a deprivation of liberty is considered during care assessments and planning. The care planning processes apply here. During a Care Act assessment of needs, professionals will ascertain the likely impact of a care plan on the liberty of an individual, whom I will call P. The idea is that, in some cases, the state has prior knowledge that a deprivation of liberty will occur and has therefore taken the necessary steps to authorise it alongside establishing conditions to safeguard P’s human rights. This could be achieved through an amendment to the Care Act guidance, not a legislative change.
The great attraction of this approach, as the Law Commission recognised, is that the safeguards are implemented in a way that minimises intrusion into private and family life. The Law Commission argues that:
“In most cases arrangements could be authorised in an unobtrusive and straightforward manner through a care plan and without a perception of State intrusion into family matters”.
In domestic situations and with the involvement of professional local authority employees in organising and undertaking the care planning, only where the care plan is contrary to the wishes of P would the involvement of the mental capacity professional be warranted. At present, the Bill does not make it clear that the MCP would be brought into domestic settings in any circumstances. This is one of the two areas in the Bill that need clarification. I am impressed that the Law Commission thinks that this approach strikes an appropriate balance between the rights of the person to be protected, and the rights to private and family life under Article 8.
The second model for the deprivation of liberty in domestic settings is the retrospective model, where the safeguarding procedures under the Care Act 2014 come into play. Under Section 42(1) of that Act the safeguarding procedures apply to an adult who satisfies three conditions, which I do not need to go into. The safeguarding process involves P from the very beginning. There are certain crucial points about these processes: their desired outcomes should be considered; professionals have to balance P’s capacity against their best interests and the public interest; and the safeguarding provisions draw significantly on the best-interests principle of the Mental Capacity Act. If deprivation of liberty is an issue, then the Care Act safeguarding provisions and the Mental Capacity Act best-interests principle can be applied to generate a care plan which safeguards P’s interests while providing care and protection.
Within the safeguarding provisions an independent advocate is appointed when appropriate. What is currently lacking is access to a mental capacity professional in the event that P has concerns about or objections to the care plan. An amendment bringing the MCP into safeguarding in domestic settings is needed to align people in such settings with those in others.
My last point relates to the requirement under the European Convention on Human Rights that if P is deprived of their liberty, they must have access to a court. I have already referred to the current arrangement for access to the Court of Protection as the only court route. I urge the Minister to consider seriously the possibility that mental health tribunals could be adapted to become mental health and capacity tribunals to include those in domestic settings where P is objecting to the care plan.
Mental health tribunals already consider whether and how their judgments and the conditions they impose on patients might amount to a deprivation of liberty. Additionally, they have experience of the issues involved in deprivation of liberty considerations in domestic settings. This would not be something outside their competence, and that is very important. It would be too radical to introduce something entirely different. Such tribunals are local and would be speedier, less costly and more accessible for families who are themselves often vulnerable. They are less imposing and therefore less stressful for those involved.
Consider the case brought to my attention recently of an 85 year-old woman looking after her 89 year-old husband, who had severe dementia. She felt she could only cope by keeping her husband in one room. The idea of taking that case to the Court of Protection just feels unreasonable. It certainly needs sorting out in some way, but not that way. In line with the estimated number of appeals to the tribunals, clearly, the number of tribunal members would need to increase. However, as well as having advantages for those involved, this reform would surely be less costly than the current Court of Protection process. I hope we can have a short but constructive debate today and that the Minister will meet us to discuss the best way forward. It might not be exactly what I have suggested, but we really need to think this through carefully. I beg to move.
My Lords, I support the amendment of my noble friend Lady Meacher, but I will sound a few words of caution. As I understand it, cases in domestic settings are not included under the current DoLS arrangements. However, there have been several cases where Cheshire West has been quoted in instances where domestic settings have been challenged—with, in my view, some ludicrous outcomes. These have put people who were doing their best by their relatives, as they saw it, in the invidious position that they could no longer continue to care.
I have a case that is similar to that of my noble friend Lady Meacher, where a man was looking after his elderly mother at home. She wandered on most nights, and he put some gates at the top of the stairs to stop her falling down the stairs. That allowed him to get a good night’s sleep and she did not go downstairs. It is a very difficult issue: there was the question of whether she could have gone over the gates and come to more harm. He was also told by the professional carer who was helping him—from a private care provider—that he could not do this because it was illegal. Under the legislation, it was now not possible for him to do that, nor could he put a lock that she could not undo on the outside door. He would have to accompany her if she wanted to go out and come back. The implication is quite clear: he actually gave up caring for her because, as he said, if he could not look after his mother in his own home, he was not going to be able to have a life that was possible for him to live. I have no doubt in my mind that that elderly woman would have given her last sixpence to stay at home being cared for under her son’s restrictions, rather than go into a care home with strangers. She would probably have had her liberty restricted anyway under some new procedures.
We have to come back to this numbers game, because we want a situation where it is only in cases involving people being treated inappropriately, with cruelty and thoughtlessness, where we want to expose something that is just unacceptable. When we are challenging arrangements that would, if they were for a person of a different age, for example a parent protecting a child—when we are putting in the same things because somebody is mentally incapacitated, it is quite wrong.
(5 years, 10 months ago)
Lords ChamberMy Lords, I congratulate the noble Baroness, Lady Finlay, on again introducing this discussion on a difficult topic. I do not share her pessimism that it is impossible to find a definition. It would be quite simple to have a definition in the Bill which would enable us to distinguish between those who are and are not being deprived of their liberty.
The fact that people are deprived of their liberty, in reality, by their condition is an irrelevance. We have to stick with what is happening to people; what we, the state or the carer are doing to the individual. We would not find it too difficult to decide what is or is not a restriction. You can compare the living accommodation of a person in a care situation to that of someone who is living in the same place without those restrictions. Care home managers would not have too much difficulty in saying who was and who was not restricted.
We should not give up trying to have some kind of definition that lists those conditions. People might be receiving sedative medication so that they cannot move around and others might be restricted physically—there are still people being restricted physically—in dreadful chairs and so on who cannot move about. We could define fairly well what the conditions are. I hope we will come back on Report with some clarification of what they are so that we can put something in the Bill. I worry that if they are in the code of practice it will be so flexible that it will result in a postcode lottery, with one area’s policy different from another’s. That would be a disaster.
We should be able to get something in the Bill. I hope that we will not give up at this stage.
Following on from the observation made by the noble Baroness, Lady Murphy, one of the most common restrictions of liberty is medication and medication reviews. We often think of it as being physical but it is not. New medicines often come online and create change. I take her point and hope we will be able to work towards a definition.
I believe that it is the amendment of the noble Baroness, Lady Finlay.
I thought Amendment 81 was tabled in the name of the noble Baroness, Lady Murphy. Anyway, it does not matter in whose name it was, those reassurances are in the Bill. If there are any niggling concerns about that we can, of course, make that clear offline. On that basis I hope the noble Baroness will be prepared to withdraw her amendment and begin those discussions in earnest.
My Lords, I have two amendments in this group, Amendments 60 and 62, to which I shall speak briefly. To reiterate, the responsibility for this law lies and remains with the responsible bodies, and not with the care providers. If things go wrong, it is they who will end up in court. Consequently, and rather like the bodies under the Mental Health Act, they retain responsibility for ensuring enough sufficiently trained people are available to ensure that the law is applied properly.
Part of the reason for all noble Lords having such an interest in this issue is that we know from the review of the Mental Capacity Act that availability of trained staff is one of the biggest reasons why the Act failed to be properly implemented. Furthermore, we have statistics on the patchy nature of implementation by local authorities and some in the health service. Some authorities absolutely get this and implement it properly, but a lot just do not. It is an almost random distribution, which has a knock-on effect.
The other reason for noble Lords wanting to talk about these issues is the impact assessment. We have not really talked about the impact assessment for this Bill. The noble Baroness, Lady Murphy, used some particularly strong words, but she let them off very lightly, because I do not see how that impact assessment stacks up. Perhaps I may ask the Minister about one of the many assumptions made in the impact assessment. My understanding is that it assumes that training under this Bill will be needed for 10% of doctors and 10% of social workers. Can the Minister explain—if not now, then perhaps at a different juncture—that assumption and how it has come to be? I would be really surprised if the figure for social workers was 10%. Ten per cent for doctors is possible, but a figure of 10% for social workers needing to be trained under this Bill seems very low. My amendments were designed to enable us to have this sort of probing debate.
I support the comments made by the noble Baroness, Lady Hollins, on some of the training issues. Like many people here, I suspect, I have spent a great number of years training junior doctors in how to use mental health legislation, as well as social workers and occupational therapists. One of the most difficult things is to convey the culture of what we are trying to achieve in legislation of this kind. We all refer to the European court and the agreements, but what we are trying to achieve for individuals and why is difficult for many people to grasp when they have grown up in a very didactic, academic environment, where these things are not necessarily considered.
A key aspect of that cultural shift which is so required is the problems that arise between relatives, carers and professionals over what should happen to an individual. All the way through this Bill, I have been scratching my head and thinking, “Will this solve the Bournewood problem?” All the cases from Bournewood onwards have arisen because of a cavalier approach or attitude by professionals to discussing with relatives and carers what the individual wanted, needed or was used to. If we do not get those things right, we will not solve the problem and there will be another case because it will all be up again for grabs where the professional training has not been accurate.
I note that there are some very specific proposals about care home managers. There are some very specific difficulties about what training care home managers currently have, and it is absolutely basic and rudimentary. It is largely about keeping the accounts right. We need to find a way to get the culture of what we are trying to achieve for individuals and families into this Bill. Exploring those training options is crucial if we are to avoid another Bournewood.
My Lords, the noble Baroness, Lady Murphy, has made a very telling comment. Part of the issue of training is cost. It seems to me that part of this Bill is about cost shift from local authorities, which have found managing this process very difficult, to care homes. We have not discussed this very much, but will the Minister tell us who he expects to pay the cost of this whole process? I suspect that the answer is that it is going to be in charges, mainly for self-funders, who not only will probably pay the cost of their own assessment, but will probably—as they do at the moment—have to subsidise the cost of local authority-funded people who come under the provisions of the Act. Clearly, the Government did the RIA on the basis of trying to show that the cost will be minimal in order to prevent being rumbled on essentially what they are seeking to do, which is clearly to cost shift the public sector in favour of self-funders.
The RIA is simply non-believable, and puts into question quite a lot of the architecture of the Bill. We know that care home managers, as the noble Baroness, Lady Murphy, said, have rudimentary qualifications. We also know that the turnover for care home managers is quite high. Therefore, major new responsibilities are being given to people who are in a sector where they are often pretty poorly paid; they do not have much training, and they do not have professional qualifications in many cases.
Training is very important indeed, and we need to have some answers as to how this is actually going to happen and who is going to pay for it. If the answer is that it will mainly be paid for by self-funded, vulnerable people, I do not think that is right.