Clause 19 - Power to meet needs for care and support

Care Bill [Lords] – in a Public Bill Committee am 12:15 pm ar 16 Ionawr 2014.

Danfonwch hysbysiad imi am ddadleuon fel hyn

Photo of Paul Burstow Paul Burstow Democratiaid Rhyddfrydol, Sutton and Cheam 12:15, 16 Ionawr 2014

I beg to move amendment 53, in clause 19, page 18, line 28, leave out ‘may’ and insert ‘should’.

Photo of Andrew Rosindell Andrew Rosindell Ceidwadwyr, Romford

With this it will be convenient to discuss the following:

Amendment 54, in clause 19, page 18, line 28, after ‘needs’, insert ‘and their carer’s needs’.

New clause 12—End of life care—

‘Following consultation, the Secretary of State may make regulations establishing arrangements for terminally ill persons to—

(a) have their preference for place of death recorded by local health and social care services and for that preference to be implemented wherever practicable; and

(b) to be exempted from charges for adult social care necessary in order to allow them to die in their place of preference.’.

Photo of Paul Burstow Paul Burstow Democratiaid Rhyddfrydol, Sutton and Cheam

As well as amendment 54, which is tabled in my name, I want to indicate my strong support for new clause 12, even though, owing to my lack of diligence, I did not get my name added to it. The Joint Committee on the draft Bill took evidence on the effects of clause 19, which sets out the power to meet needs. One of the issues raised by Marie Curie and a number of other charities that have an interest in provision of end-of-life care was the need for speed when a person is terminally ill and requires support, care, social care and so on. Speed is needed for their carers too.

The national bereavement survey, which this Government introduced—I think we now have the second survey—has produced some interesting information about how carers and families see their experience of bereavement. One of the things the first survey found was that around half of people die in hospital, despite the fact that only 2% actually stipulated that as their preference.

Other work by the National Audit Office found that for 40% of those who die in hospital, there was no clinical reason for them to be there. That is a human  tragedy for the individual and the family that they find themselves trapped in a hospital, often the worst place to die.

It was therefore welcomed that the Government took on board the concerns that were expressed in the Joint Committee and that the Bill was amended in the Lords to give specific reference by way of example to terminal illness as a situation in which urgency should be the trump card when it comes to the behaviour of local authorities.

Access to timely services for a terminally ill person is absolutely critical. Amendment 53 does a very straightforward thing: it seeks to strengthen the language from “may” to “should”. To be honest, I think it should have been “shall”, but there we go. That probably means that the Minister can tell us something about my trying to introduce a whole new concept of “should” into the legislative landscape. Of course, the Minister might be tempted by that today. It would be a landmark Bill in so many more ways if we were to do that, because it would introduce “should” into law for the first time. I accept that probably my amendment in its drafting is technically deficient, but the issue behind it is a central one.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People) 12:30, 16 Ionawr 2014

Will the right hon. Gentleman confirm that when he was a Minister, the shadow Health Secretary, my and I wrote to him and the former Health Secretary, the right hon. Member for South Cambridgeshire (Mr Lansley), and proposed free social care at the end of life, and that we raised it in the cross-party talks? Why did he not take action at that stage?

Photo of Paul Burstow Paul Burstow Democratiaid Rhyddfrydol, Sutton and Cheam

There are two points about that. First, I have been very careful not to discuss the nature of the conversations that we had in those cross-party talks. I will continue to hold to that, because until such time as I write my memoirs about that particular set of episodes—for my family’s benefit if for no one else’s—I do not think it appropriate to disclose that. On whether the hon. Lady and the shadow Health Secretary wrote to me and the right hon. Member for South Cambridgeshire, I do not have an instant recollection. I would need to refer to the papers—to use the phraseology of such circumstances—but I have no doubt that she and her right hon. Friend did write and pressed that case.

I guess the point we would have made in response was that at the time we were—as current Ministers are—grappling with the fact that a financial envelope was available to them, and there were disputes about how much the policy would cost to implement. That is one of the reasons why, in the care and support White Paper, we increased funding for the piloting of a per patient payment mechanism, so as to flush out how much it would cost. I suspect that would have been the essence of our reply, but without the benefit of a detailed study of the paperwork, I cannot be absolutely confident that that is what we said. My instinct is that that is probably along the lines of what we would have said. We understood that the case was being made by the Labour party at the time, and also by many charities, and that is why I was keen to include the commitment recognising the merit of the case for free social care at the end of life, as we did in the White Paper. Of course, in an ideal world I would have liked to have gone further and for the White Paper to have announced the policy commitment being delivered. When the Minister responds at the end of the debate, I look forward to what he may or may not say about that.

Amendment 53 aims to strengthen the language. In my view, this should be a “should” issue, not a “may”—it should not be discretionary. One thing we said in the White Paper was that as an interim step we would ensure that revisions were made to the guidance covering intermediate care and the transition—and to some degree handover—between health services and social care services. That issue is of sufficient concern that we wrote it into the White Paper, and it would be useful if the Minister could indicate where we are with that interim step of revising the guidance on intermediate care, so as to ensure that end-of-life care is front and centre when it comes to local authorities and their intermediate care obligations.

Amendment 54 would simply ensure that carers are not left out of the measure addressing urgency. Given that the Bill does something new by establishing parity of treatment and esteem between the recipient of a care or support service and their carers, it seems odd that that symmetry is not maintained in the clause. I argue that we should maintain that symmetry and ensure that the carer is not left behind. Words matter in legislation; they matter to those who read them and then decide how they should behave in their later practice. The absence of the word “carer” could subsequently be construed as meaning, “Well, we don’t have to rush to assess the carer or to make sure they are supported both during the last days of the individual for whom they are caring or during their subsequent bereavement.” I hope those issues will be addressed and perhaps the Minister will reassure me on that point.

Photo of Bill Esterson Bill Esterson Llafur, Sefton Central

I have a question about the impact on local authorities in areas to which significant numbers of people move either temporarily or longer term. The right hon. Gentleman will be aware that that is a particular issue in local authorities such as mine that have seaside areas to which people move. He suggests that the recipient local authority should be responsible, but how does he anticipate that that additional cost would be picked up? Is he aware that care costs being taken on by recipient local authorities is an existing issue?

Photo of Paul Burstow Paul Burstow Democratiaid Rhyddfrydol, Sutton and Cheam

I am grateful for the question. I do not know whether my answer will be sufficient, and I hope the hon. Gentleman has an opportunity to contribute and put his question to the Minister, too. The answer is in two parts. First, the Bill obviously provides for issues of ordinary residence, which is the test for determining which authority is obliged to meet the costs, and it contains new provisions for portability of assessments, and so on. If the move is temporary, the authority of ordinary residence from which an individual has moved would, as I understand, continue to be obliged to fund. If the move is permanent, once ordinary residence tests have been met, the receiving authority would have that responsibility—I hate the word “receiving”, but it gets to the essence of what I am talking about.

On the overall issue of funding, we have mechanisms to distribute resources for local authorities, which are partly related to the age and demographics of a population. To some extent, some areas attract more older people who are in receipt of care, and that will be met to some degree—adequately or not; it is an area of debate—over time. I take the point that there are clearly some areas where people go to live to receive their care, and it is important that the funding mechanisms try to reflect that.

New clause 12 was tabled by my hon. Friend the Member for Totnes, and I will not address it at length because I want her to set out her own thinking. I strongly support the new clause. Free social care at the end of life would be a significant benefit to families who are already going through uncertain times. The absence of such an arrangement means that, inevitably, there are cumbersome, bureaucratic hurdles that people have to get over at a time when, frankly, they want to focus on their loved one. It would be the humane thing to do and, in terms of how the system works, the right and pragmatic thing to get the right care, at the right time, in the right place.

I have one question that is not about the guidance—I have already asked the Minister about that—but about the electronic palliative care co-ordination system, and I hope that he can say more about it. The White Paper was very clear about the need to draw a link between those systems and social services providers, to ensure another way of helping join up the system. Will he tell us where that has got to? Specifically, is the technology now enabling links to be made between health providers and social care providers? With that, I commend my amendments to the Committee and look forward to the debate and the Minister’s response.

Photo of Sarah Newton Sarah Newton Ceidwadwyr, Truro and Falmouth

It is a pleasure to serve under your chairmanship, Mr Rosindell, and to support the right hon. Member for Sutton and Cheam in his amendment. He is quite right that individual words matter. Like many Members, I expect, I spend time speaking to schoolchildren about my work as a Member of Parliament. I say to them that we spend many hours in Committees such as this, where it can be incredibly important that we debate the meaning of a single word, because it could make a huge difference to people’s lives.

In the three years I have been here, I cannot think of a distinction that makes more difference to people’s lives than the one between “shall” and “should”. Like everybody else here, both in my personal life and my constituency work, I have come across cases where people have been enabled to have a really good death. Right at the end, their family and loved ones have been supported by excellent hospice care and community palliative care. They have been able to choose how and where they wanted to die, and have been as comfortable and pain-free as possible. That, of course, is what we want for ourselves and everyone.

Sadly and tragically, however, we have probably all experienced the opposite: situations in which there has been a dreadful breakdown in communication between the social care system and the health system, huge bun fights about who is responsible for what care, carers not coping, people not managing, and the person ending up in an acute care setting when they do not need or want to be there. That is not the death that anyone would want for themselves or anyone else. This little word and the spirit behind it will go a long way toward ensuring that the existing systems work to the benefit of people in the last stages of their lives, and their loved ones, so they can have the sort of death that we would hope everyone in our country could have.

I want to speak a little about free social care at the end of life. If the Government accept the change it will be a good stepping stone, but ultimately we need to move quickly to free social care at the end of life,  because that will ensure that we can provide the sort of death that I know people want. I pay tribute to what the Government have done through a range of studies to move things forward, but I am slightly disappointed by the Opposition’s tone in trying to turn this into a party political issue. Many people in this party have been working for numerous years to make the case for free social care at the end of life, and have worked effectively with organisations such as Marie Curie Cancer Care, Macmillan Cancer Support, and others with an immense amount of expertise that do much good work to enable it to happen.

The Government have undertaken pilots, which I understand will conclude in March. They have committed to sharing the evidence from those pilots and, if the evidence supports the introduction of free social care at the end of life, to moving swiftly to implement it soon. In summing up this section of the debate, will the Minister reconfirm the Government’s commitment to those pilots? We also want him to agree to a round table meeting with me, all the stakeholders and charities we have spoken to, and Members who want to join that meeting, to tell us what it is hoped the pilots will achieve, and what the Government plan to do with the results of the pilots. Moving as soon as we can to a situation in which we have evidence to support free social care at the end of a life will be a massive step forward in enabling a good death in our country.

Photo of Sarah Wollaston Sarah Wollaston Ceidwadwyr, Totnes 12:45, 16 Ionawr 2014

I will speak about new clause 12. We have heard a lot about the lottery of catastrophic care costs, but there is one thing that is no lottery at all, and that is the absolute certainty that everyone in this room and everybody following this debate will come to the end of their life, and—more importantly to most people—that somebody they love will come to the end of their life. We know that most people want to be at home when they die and to die in dignity, but unfortunately less than a third of us have the opportunity to do that. The new clause would ensure that terminally ill persons were separately recognised in the Bill. I want to set out why that matters and to address two of the most important barriers to people having a good, dignified death, at home and surrounded by the people they love.

From my personal experience of 18 years of general practice, I know that one of the main reasons why people who were desperately keen to stay at home ended up being admitted to hospital is simply the sheer stress and physical difficulty of providing personal care needs for someone at the end of life at home. Very often, of course, the families affected have not adjusted over a period of time to becoming carers but are thrown into that situation, at a time of quite extraordinary personal stress, when they are having to face the prospect of losing the person they love. When all the factors come together—not just providing 24/7 care, but the intimate and demanding physical nature of that care—it becomes too much. With the best will in the world, the elastic can only stretch so far, particularly for someone who is a single carer, and that is the point at which, sadly, people have to be admitted to hospital.

That admission can sometimes feel to families like an admission of defeat. There is a sense of failure that carries on into their bereavement. It is important that  we address that, because often it is not a failure on the family’s part: it is a failure on the part of health care and social care to work together at the critical point that is the end of life. It does not have to be that way.

Of course, there are continuing care assessments, but 97% of health care professionals and of the families affected agree that those assessments are inadequate, because of the bureaucracy and delay that are involved. Anybody who has been involved in the process will know that continuing care assessments do not work effectively at the very important point that is the end of life, when often rapid decisions need to be made.

As my right hon. Friend the Member for Sutton and Cheam pointed out, 40% of people in hospital at the end of their lives do not need to be there, so social care is critical. We cannot address the urgent need for people to be able to die at home without addressing the need for free and rapid access to social care at the end of life. As the shadow Minister has pointed out, despite the welcome rise in the eligibility threshold, a number of people will still miss out under the Bill; and those people will be at a time in their lives when there is great financial uncertainty. A carer might have to leave their job to provide end-of-life care. They might be asset rich but they are very likely to be cash-flow poor at what is a critical time in their lives.

That is why we must address the urgent need for free social care at the end of life. The period of time involved is short—although I understand that the definition of the time period for terminal care is six months, for most people it is much shorter. Of course, we need to address the issue of funding, but let us be clear: when people are admitted to a busy general hospital ward, in effect the taxpayer is paying more for worse care. We all recognise that the join-up between health and social care is the problem. The incentives are in the wrong place. There is a great incentive for hospitals to admit people and there is no financial incentive for local authorities to fund. Overall, we are all paying for worse care in the wrong place.

I welcome the palliative care funding formula, which is due to be revised by 2015, but the Minister will know that there are concerns that the timetable for revision could be slipping. We know that a choice review was due to start in 2013. I hope that the Minister can offer some clarity on that, because we need more certainty about the remit, who will be running it, what it will cover and, critically, what the proposed start date now is.

There is a danger, in a sense, because there are four reviews going on. Sometimes we risk losing the ability to see the wood for the trees. Whatever the reviews and pilots show, the one thing we are clear about is the fact that we are paying more for worse care, so I hope that we will have a definite commitment to introduce free rapid access to social care at the end of life for persons who are terminally ill. That needs a separate category because, although I accept that clause 14 could be argued to be an enabling clause, I do not think that it goes far enough. It sets out that certain conditions can be specified, but end of life covers every condition. It is possible that it will not be as enabling as the Minister feels it could be.

There are provisions under section 6 of the National Health Service Act 2006 that could also perhaps be interpreted as enabling, but they apply to health care, not to social care. That is why I hope the Minister will  accept that it is right that we have a separate clause to cover such an extremely important issue. New clause 12 would still enable the Minister, rightly, to take account of the pilots, but it would also set out a clear intent to deal with the issue. I feel strongly that that is the right thing to do.

The second issue that the new clause covers is forward planning. My right hon. Friend the Member for Sutton and Cheam has already referred to electronic palliative care co-ordination systems, but we know that a lack of forward planning is also one of the main factors leading to people dying not in the place of their choosing. We have worrying data from GP surveys that show that GPs themselves are sadly still hesitant about initiating discussions on the issue—often, as they say themselves, they lack confidence. Such discussions must happen; it is no good having professionals shying away from them. Once they recognise that someone is dying, it is critical that, across health and social care, a preference for a place of death is recorded.

There must also be better information sharing, because often the issue is that a locum doctor, perhaps, sees someone who is unsure about what their wishes are, or perhaps is not in a position to express their wishes clearly at that point. Having good, clear information shared across health and social care—with the patient’s consent in advance, of course—would make a real difference.

Previously in Committee, the Minister has stated that just because something is in a Bill does not mean that it will be put in place, but there is no doubt that it helps to drive change if an issue is clearly expressed in legislation as important. As I have said, the new clause would be an enabling measure. It does not seek to set out in stone, in detail, how things should be done; it would simply enable the Minister to ensure that arrangements are in place. That is critical.

I look forward to hearing the Minister’s response and hope that he will accept new clause 12. If he cannot, will he at least give a clear commitment that the Government will fund free social care at the end of life? Do the Government recognise the importance of that and the need to have systems in place for advanced planning? That would be an extraordinary step forward and make a real difference to everyone following this debate.

Photo of Jim Shannon Jim Shannon Shadow DUP Spokesperson (Health), Shadow DUP Spokesperson (Transport), Shadow DUP Spokesperson (Human Rights)

I want to add my support for the new clause tabled by the hon. Member for Totnes. She has presented the case well, based on her 18 years of knowledge as a GP and now as an elected representative. My support for the new clause comes from my experience as an elected representative in the House, as well as my experience before I was privileged to come here to represent the people of Strangford. I was a Member of the Northern Ireland Assembly for 12 years and a councillor for 26 years. My speech is entirely based on what my constituents have told me and their stories. The hon. Lady touchingly referred to some stories, and I would like to make some comments on the ones I have heard.

I strongly believe that people in their final weeks of life should have the choice to die in a preferred place of care—it is one of the things I am very much committed to—surrounded by the friends and family they need, at the time when they need them most. Some 93% of  people would prefer to die at home or in a hospice, yet only 30% of people are able to do so. The majority continue to die in expensive hospital beds or in A and E departments, as the hon. Lady outlined.

Macmillan Cancer Support has been good to us in giving us background information and bullet points, as has the Motor Neurone Disease Association, the National Council for Palliative Care and Sue Ryder. All those organisations have sent us information, but I am particularly aware of what Macmillan’s research said, which was that

“36,400 cancer patients who die in hospital each year would prefer to die at home”,

where that is possible. I am conscious that, whenever we make a case for something, there will always be examples of where it is not possible. Dying at home is not possible in cases where the level of medical care is so great that the only place it can be given is in hospital, and I understand that. When we look at hospice care, I think immediately—many organisations offer great support and understanding at a difficult time for the individual and their family—of Marie Curie Cancer Care. It is able to offer a level of care in the hospice that it can perhaps not offer at home, because the individual needs to be in a hospice under medical supervision and able to have medical attention at short notice, should things deteriorate.

The hon. Lady reminded us that there is one thing in life that we are sure of, which is death, but the other thing we are sure of is taxes. We have death and taxes to deal with, although in this case we are dealing with the honest case of death.

To illustrate what I am saying about people staying at home, one of my good friends had motor neurone disease. In his last days, it was so important to him to be at home with his wife and his daughter. He was a rugby fan and he watched Ulster in a rugby match on a Friday night at home with his family. That gave him a quality of life that he would not have had, with great respect, in any other place, whether a hospital or a hospice. As a family they were rugby fanatics and were able to enjoy that occasion. He passed away at home, with his family, which is where he wanted to be.

Because of that case and many others, I support the new clause. The palliative care funding review suggested that the best way to achieve choice at the end of life is by removing the financial assessment and providing free social care at the end of life. In the care and support White Paper, the Government stated that they see “much merit” in that principle and committed £1.8 million to assessing its benefits through the palliative care funding review pilots. The Joint Committee on the draft Care and Support Bill called for free social care at the end of life to be introduced at the earliest opportunity.

I am conscious that we are approaching the hour when we will have to stop, so I will quickly make these comments. It is vital that the key stakeholders commit themselves and say that it is important. In a Macmillan survey, 97% of health care professionals agreed that the complexity of social care needs assessments and the time it takes to complete them were barriers preventing patients from receiving appropriate social care at the end of life. Free social care at the end of life will help prevent expensive unnecessary hospital admissions and burdensome financial assessments during a difficult time and is an important part of giving people a genuine choice at the end of life.

I hate to mention money when discussing care and health, but we sometimes have to, because we are all restricted by budgets, within which we have to try to work. Electronic palliative care co-ordination systems, to which the right hon. Member for Sutton and Cheam referred, are estimated to have saved £133,200. The costs of implementing them are estimated to be £21,000 per 200,000 people a year, which represents a modest investment, especially when potential savings are taken into account. I firmly believe that patients should be able to have time at home with their families, which is why I wholeheartedly support the proposal of the hon. Member for Totnes and I hope that she presses it—unless, of course, the Minister responds and says, “Yes.”

Ordered, That the debate be now adjourned.—(John Penrose.)

Adjourned till this day at Two o’clock.