Clause 19 - Power to meet needs for care and support

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

Danfonwch hysbysiad imi am ddadleuon fel hyn

Amendment proposed this day: 53, in clause 19, page 18, line 28, leave out ‘may’ and insert ‘should’.—(Paul Burstow.)

Question again proposed, That the amendment be made.

Photo of Hugh Bayley Hugh Bayley NATO Parliamentary Assembly UK Delegation, NATO Parliamentary Assembly (President)

I remind the Committee that with this we are discussing 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 Bill Esterson Bill Esterson Llafur, Sefton Central

Welcome back, Mr Bayley. I want to make a few remarks on amendments 53 and 54, following on from the intervention I made earlier on the right hon. Member for Sutton and Cheam. One issue facing local authorities, including Sefton, arises when significant numbers of people move to a borough for residential care as self-funders, but the money runs out, so the question then arises as to who is then responsible for their continuing care. Clause 19 and in particular the amendments to it, are relevant because they appear to add to that pressure. Will the Minister address my concern about how funding will be dealt with for the local authority to which people have moved, when they are ordinarily resident somewhere else? Is there something in the explanatory notes that already deals with that? If not, how will he deal with the situation, because it appears to be one of the consequences of the right hon. Gentleman’s amendments?

My main remarks concern new clause 12, which I very much support, in the name of the hon. Member for Totnes and supported by my hon. Friend the Member for Easington. I went to visit my parents last night—I have mentioned them once or twice in debates already—and my dad is a fan of the hon. Lady, although his support for Tory Members of Parliament does not go much  further than that. In this case, he is undoubtedly a fan and was appreciative of what she said in The Guardian yesterday. He mentioned it, as someone who is experiencing many of the issues to which she referred in her article. He is not alone in being appreciative of what she wrote; many people around the country must have been pleased to read it and would welcome the new clause. Clearly, there is great support for it.

My question for the Minister, which I mentioned on Second Reading, is about the definition of free social care at end of life. At what point does “end of life” become defined? I think that is my question. At what stage should free social care be brought in? I shall not say too much more, because I have tabled an amendment on that very question, which we will probably discuss when we come to the end of our deliberations.

The issue of free social care at the end of life is incredibly important for all the reasons given by other hon. Members. As the hon. Lady said, I hope that the Minister will find a way in his response if not to accept the amendment, to indicate how the Government will move forward on that incredibly important issue.

Photo of Liz Kendall Liz Kendall Shadow Minister (Health) (Care and Older People)

Welcome back, Mr Bayley. I am delighted that we are having a proper discussion about this. It has been a pleasure to follow the thoughtful speeches of my hon. Friends and Government Members. I do believe that this is a cross-party issue and that all the parties are signed up to doing something about it. The question is how quickly we can get there. I say to the hon. Member for Truro and Falmouth that my comments to the right hon. Member for Sutton and Cheam were not political point-scoring, but to place on the record that Opposition Members really pressed this as part of the cross-party talks on social care. We really wanted to engage with this and make it happen.

Hon. Members will know that the first time there was even a strategy for end-of-life care was in 2008. It was led by Professor Sir Mike Richards, who at that stage was the cancer tsar and is now the chief inspector of hospitals. Mike has been a champion of this work to give people the choice of where they die. I want to make a slightly broader point based on what the hon. Member for Totnes said. We need to talk about dying in this country. We have never really had a public discussion about death and dying. I understand why. Nobody wants to think about it, but it comes to us all.

If I may digress, it is interesting what happens in other countries. The one that springs to my mind is Mexico, which has a day of the dead. There is a bigger, broader debate about dying. We rightly talk about how we keep people fit, healthy and living for as long as they can, but it is something that will come to us and we do not think about it until too late. It is about giving people a choice, but also about the awful issues of having to talk about money alongside it. Anybody who has been through this will know that it is the last thing they want to do and think about. Those who have experienced it themselves with constituents, families or friends, know they have to start raising all the difficult issues of power of attorney, money and all that. It is horrible, but it is important that it is done. I hope we are discussing a first step to a bigger, broader and more thoughtful conversation about these issues, so I am grateful that the hon. Lady specifically raised that point.

I also really want to pay tribute to the organisations who have relentlessly championed this issue of free social care at the end of life: Help the Hospices, Marie Curie Cancer Care, Macmillan Cancer Support, Sue Ryder and the National Council for Palliative Care. They have been champions, but they have also done some really good work in showing that, at the very least, they believe that this policy would be cost neutral, because it would reduce the more expensive hospital care that people have to receive by helping them to get out and stay at home.

I first got involved with this issue when I was director of the ambulance service network. We wanted to get involved with the national end-of-life care strategy because when that crisis point is reached in a family and they are worried about something that has happened to a person who is terminally ill and at home, they often pick up the phone to the ambulance, because if they dial 999 they are there. Ambulance services need to be involved because they need to know that if that person has a package of support that keeps them at home, all the different parts of the system need to be involved.

As I said, we are extremely supportive of this. We want to see quicker and faster progress. We raised this issue at the cross-party talks on social care, and my right hon. Friend the shadow Secretary of State for Health said in his party conference speech last year that in our policy review we are working on whole-person care, to put the right for people to have a choice about where they die at the heart of our plans.

My view is that if we had a single budget for health and social care, and budgeted not annually but for longer periods so that there was certainty and commitment, we could take account of some of the initial up-front costs. Having more time to plan would make that much easier, and we are working on that as part of our policy review. I look forward to hearing the Minister’s comments on how we can make sure that that happens, and happens quickly.

I have one further point, which is not just for this Committee. It would be useful for us all to work on a cross-party basis to raise the difficult issue of dying, and to think about how we can help families to get through what will always be a terribly difficult time.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

Welcome back, Mr Bayley.

As the shadow Minister said, if the truth be known, we probably all agree on this issue. We have a rather crazy situation at the moment, as the hon. Member for Strangford highlighted, in which we are spending bucketloads of money on caring for people in acute hospitals who do not want to be there. My experience of dealing with the difficult issue of the application of the Liverpool care pathway, and with the concerns expressed by some families about their experiences in hospital in some parts of the country, has highlighted the horror of what has happened too often in end-of-life care and why there is such an urgent need to improve it. We must do so wherever someone is when their life ends; but, critically, we must also respect people’s wishes about where they want to die. At the moment, because of the way in which the financial incentives work, hospitals are often under enormous pressure, with many frail elderly  people in them, and too many of them dying in hospital when, as the hon. Member for Strangford said, they do not want to be there.

Until recently my wife worked for Cruse Bereavement Care. Hearing the stories of what a loved one has to cope with in bereavement, it is clear that a bad experience of a death lives with that person for the rest of their life. We have a heavy responsibility to think of the needs of those people as well as the needs of the dying person. I feel strongly about this issue and hope that we can achieve some real progress, which is what we all want.

I will first address amendments 53 and 54. I thank my right hon. Friend the Member for Sutton and Cheam for tabling them, and pay tribute to him for his work on end-of-life care when he was Minister, which set in train a lot of the important work that might ultimately result in an improvement in people’s rights and experience at the end of life. I know his commitment to achieving the best outcomes for people at the end of life is very much a continuing one.

My hon. Friend the Member for Truro and Falmouth raised concerns that I know have been brought to her attention by a number of groups, including Macmillan Cancer Support, and asked whether it might be possible to have a round-table meeting to discuss the critical issues. I would suggest that that should be once we have finished our work in Committee, but I would very much be up for that. It is important that we reassure those groups—I join the shadow Minister in paying tribute to the work that many of them have done—that the work is on track, and that we continue to involve them thoroughly in achieving the objectives we all seek. I am happy to agree to that proposition. If the shadow Minister would also like to turn up she is welcome. How about that for a spirit of openness? I can see that hon. Members are impressed.

Photo of Grahame Morris Grahame Morris Llafur, Easington 2:15, 16 Ionawr 2014

I am grateful to the Minister for his characteristic generosity.

Photo of Grahame Morris Grahame Morris Llafur, Easington

I promise there will be no devilishness. I know that we will have an opportunity later under clause 73 to consider end-of-life care, but will the Minister give an undertaking, given that there is consensus on the desirability of free end-of-life care, to bring forward some costing? We earlier heard some figures available from charities. If the cost is the stumbling block and it is cost neutral, surely there is an argument for taking it forward.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I thank the hon. Gentleman for that intervention. I hope I can address the issues he raises as I develop my argument. We agree that when someone is terminally ill waiting for their care and support to be put in place can often be a highly distressing time. That is why we amended the Bill in the other place. I was determined that we should amend it to state explicitly  that when people are terminally ill, local authorities are able to use their power to meet needs urgently, that is, without having first to carry out a financial assessment or make an eligibility determination.

However, we would be wary of agreeing to amendment 53, because use of the word “should” in this context would create legal uncertainty. I pay tribute to my right hon. Friend the Member for Sutton and Cheam for his attempt at legislative innovation but I think it is dangerous. That is the boring old lawyer in me.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I was. In legislation we tend either to require someone or some organisation to do something, when we use the term “shall”—shall do this or that—or we say “may”, which gives discretion. To say “should” leaves people in a no man’s land not quite knowing what it means. I think my right hon. Friend understands that point. He will no doubt remember it next time he drafts an amendment.

Nor would it be appropriate for there to be a duty, so it is just as well that he did not try to use the word “shall” because I would have rejected that as well.

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

My hon. Friend is never boring and would not have been even when he was a lawyer. I am sure once someone is a lawyer they never cease to be one. He was coming on to explain why, if I had used the word “shall”, he would have rejected it. Will he please share with the Committee why he thinks it is inappropriate to be clear about the expectation of an obligation on local authorities to act in these circumstances?

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

Ultimately, we all know where we want to get to. In the meantime, until we get there, we want to ensure that we apply the rules equitably.

Let me continue to make the argument. As I said, it would not be appropriate for there to be a duty to meet all needs at end of life urgently, as there are many instances where it would be appropriate first to carry out financial assessment and eligibility determination in the normal way. I want to change the rules, as does my right hon. Friend. It is important that there is clarity until then about how the existing system operates.

Turning to amendment 54, we do not consider it to be necessary. When a carer’s needs for support are deemed urgent it is usually as a result of the adult’s needs being urgent, and so usually that would be best remedied by providing care to the adult urgently, for which there is already provision in clause 19. Where it is clear that local authorities need to put in place support for a carer quickly, they should obviously do so. We would expect provisions in the Bill to be applied proportionately, so that there need not be a delay in providing the support carers need, especially in urgent circumstances. However, we do not think that an additional express provision in the Bill is necessary to ensure that. I understand the concern my right hon. Friend the Member for Sutton and Cheam expresses and I would want to  avoid inadvertent neglect of the carer. I will reflect genuinely on what he has said and report back to him in due course.

Turning to new clause 12, tabled by my hon. Friend the Member for Totnes, the Government are committed to moving towards choice for all on how to have a decent and dignified death and where that should be. I am determined that we achieve that. A review this year will determine when such an offer of choice in end-of-life care can feasibly be introduced. I can provide guidance on the choice review which I think my hon. Friend raised. It will happen this year. A workshop in early February will scope the whole issue and it will involve the full range of experts and stakeholders. They will continue to be involved as the review progresses. But it will happen and be completed this year.

As I say, I am determined that we achieve the breakthrough and achieve what we are all after here in delivering choice at the end of life. Any offer will be introduced using existing legislative powers, namely the standing rules. One of the recommendations of the independent palliative care funding review was about free social care at the end of life. The Government have funded eight pilot sites to gather the information needed to develop a new system and to test the review’s recommendations, including its recommendation to provide free social care at the end of life. Other hon. Members have made the point that it feels clear, and indeed, work has been undertaken to demonstrate that it should be cost neutral. There is a cost attached to the fact that so many people are dying in hospital and we are not delivering what those people want.

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

I referred this morning to the figures supplied by Macmillan Cancer Support and I think the hon. Member for Easington referred to them too. I think it was £21,000 per 200,000 head of population as against a saving of £135,000. There was clearly a financial advantage to introduce what they were suggesting. Have the Minister and the Department had a chance to consider those figures? If not, perhaps we could have some feedback on that later.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

The Government have funded eight pilot sites to gather the information needed to develop a new system and to test the review’s recommendations, including the recommendation to provide free social care at the end of life. The pilots are gathering evidence over two years until March this year, and the Government will consider the evidence collected from the pilots before making any decisions on a new funding system, including whether to offer free social care at the end of life and the practicalities of doing so. The Government have already stated that they see the merit in removing the means test at the end of life, but that it is not right to make any decisions until the evidence from the pilots can be properly considered.

It is daft, it seems to me, to commission pilots but then to make decisions before getting the evidence from them. Let me tell my hon. Friend the Member for Totnes: I am determined that we do this. Obviously, I want to see the evidence and we have to be aware of the financial consequences, but I am determined that that will happen. The current situation is very hard to justify, particularly given that we are spending money on caring for people where they do not want to be.

Photo of Sarah Wollaston Sarah Wollaston Ceidwadwyr, Totnes

I thank the Minister for his words—I am pleased to hear that he is so committed. However, may I ask him for some clarification? When he says that he is determined to do this, does he mean the choice review? I think the words we would all like to hear are: implementing free social care at the end of life. I accept that the pilots have to guide the mechanisms for that, and no one expects him to set that out without seeing the evidence, but a firm commitment to introducing free social care at the end of life would really reassure everyone on the Committee.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I have given my hon. Friend my personal assurance that I want us to do this. I am not in a position to commit the Government, but, as the responsible Minister—indeed, I have some degree of influence over the decision making—I am determined that we achieve that objective.

Just to be clear, it seems that the issues of choice and free care are inextricably linked. It is the financial incentives that currently mess around with and undermine proper choice at the end of life, and that is what has to be resolved. The choice review can achieve that important objective, but getting the mechanism right is inextricably linked to the outcome of the pilots. It is my clear objective, however, that we achieve this ambition.

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

That is a helpful undertaking. Clearly, the independence of the system is key to unlocking the resource to deliver what will actually be more cost-effective and better end-of-life care. Given the commitment the Minister gave to my hon. Friend the Member for Truro and Falmouth about a round-table, could we dwell on this matter as part of that discussion?

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

If it comes up, I am sure we ought to dwell on it.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I am sure that it can come up. As I say, these matters are linked and cannot be neatly separated out into two separate issues. Therefore, any sensible discussion should deal with all of these matters.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

May I finish this paragraph? I am being a bit more demanding now: it is not just the sentence, but the paragraph. However, I will of course allow interventions.

As with any new policy on choice in end-of-life care, any decision to remove the social care means test at the end of life can be introduced through secondary legislation under existing powers. Clause 14(6) provides powers to make regulations that prohibit local authorities from making charges in specific cases.

Photo of Nick Smith Nick Smith Llafur, Blaenau Gwent

I am really pleased that the Minister is convinced by the merits of the argument. It is good that he is waiting for any evidence from the pilot, but earlier he talked about any possible implementation taking place through standing rules. I want to press him on that. What will the legislative framework be for bringing forward and introducing this important idea?

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

My understanding is that the standing rules under the National Health Service Act 2006 allow for that, but I am happy to provide clarity by way of writing to hon. Members.

Photo of Sarah Newton Sarah Newton Ceidwadwyr, Truro and Falmouth

I am grateful for such a firm commitment to delivering free social care at the end of life. When we have our round-table meeting, it would be useful if we looked at the scope of the research and met with the researchers. I understand that they will be gathering that material until March and that the analysis will take a few months, but we need to understand how that was done, so that all stakeholders can contribute to our learning from that for the implementation.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health 2:30, 16 Ionawr 2014

That seems to make sense. I am very nervous at the way hon. Members keep saying, “I am so pleased with this very clear commitment.” I am conscious that the officials are probably quaking in their boots at what I am saying.

Paragraph (a) of new clause 12 deals with the ability to register one’s interest, intentions and wishes towards the end of life. NHS England and Public Health England are supporting the expansion of electronic palliative care co-ordination systems—EPACs—by introducing a new information standard for local providers to build their own systems. In places where EPACs are already established, around 80% of people die in a place of their choice.

Giving a person the chance to have their say, and recording it, with the professionals abiding by those wishes, is a remarkable and powerful thing. It perhaps contradicts what I said earlier, but that seems to have been possible even within the existing rules and does not undermine the case for changing the rules. It is a remarkable fact that, with EPACs, 80% of people die in the place of their choice, whereas we know that about 50% of people in the country as a whole die in hospital, where most of them do not want to be.

NHS England has an ambition to increase national coverage from the current 30% to 70% by 2015, more than doubling the number of people who currently benefit from the system. That is a powerful driver for change. The question of whether legislation achieves things or whether there are other levers that can be used has been a continuing theme. Ultimately, it must be a mix of levers, but the fact that NHS England has committed to the objective of getting 70% national coverage is very powerful.

I hope that hon. Members, if not officials, are reassured by what I have said.

Photo of Bill Esterson Bill Esterson Llafur, Sefton Central

I asked several questions in my speech but I am not sure I have heard any answers. One was about the definition of “end of life” and how a decision might be taken. What is the Minister’s view of what constitutes the end of life? I also asked about people moving to an area.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I apologise to the hon. Gentleman. I know he raised those matters and I intend to respond.

At what point the end of life becomes defined as such is precisely what we are considering through the palliative care funding pilots, so that we can understand how to implement it most effectively. The easiest way would be  once a patient has been placed on a palliative care register. The question, of course, is when that should happen, but the hon. Gentleman highlights an incredibly important point that is under active review through the pilots.

The hon. Gentleman was concerned about areas that are enormously attractive—areas such as his—where people might go for the last period of their lives in a care or nursing home. They might be paying for it as self-funders, but in some cases the money runs out and then it becomes the financial responsibility of the local authority—I hope I have got his concern right. On the whole, such matters balance out across the country. I appreciate his assertion that there is a substantial in-flow, but the relative needs formula takes account of population and demographic differences between areas. We are considering such issues as we work on plans for implementing the reforms, including reviewing the relative needs formula. I hope he accepts that I acknowledge the need to look at the issue, and that we will do so. I hope I have said enough to encourage my right hon. and hon. Friends to withdraw their amendments.

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

I am grateful to the Minister for his full response, and I look forward to listening to the other contributions to get a sense of how others feel about it. I want to pick up two or three things from the debate and say something about the amendments in light of the Minister’s response.

I agree with the shadow Minister’s comments about Professor Sir Mike Richards. He played a series of roles within the NHS, and his contribution to cancer care is legendary. We inherited the end-of-life strategy from the previous Administration. As the Minister at the time, I took the view that it would be pointless to put it in the bin and start again because it is essential to have continuity.

I am particularly proud that this Administration delivered a national bereavement survey for the first time, because it gives us a great insight into the issue. It provides valuable information and intelligence, and enables us to drive improvement and reach our ambitions about people being able to die in a place of their choosing. The Minister’s comments about EPACs are encouraging, particularly on the ambition to reach 70% coverage. He talked about how different the areas covered by EPACs are, and he made a powerful case for driving that whole area forward.

When we have the round table, I hope the Minister will say more about guidance. In particular, I hope he will respond to my question about guidance on intermediate care, which he did not address in his response. Given that commitments on intermediate care were made in the White Paper, it would be good to know how that will be taken forward.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I had intended to respond to my right hon. Friend’s question. I understand that the package of statutory guidance on the Bill will deal with intermediate care, and we will publish guidance for consultation in May.

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

I thought it might help the Minister to pick that up and it will be useful to explore that issue in those discussions. The Minister’s comment is very helpful.

The problem, as my hon. Friend the Member for Totnes said, is that we are paying more for worse care, and the Minister said that it is hard to justify the current situation. I am absolutely determined about this issue, and after the intervention of my hon. Friend the Member for Totnes, we know that we must deal with free social care because it is connected to issues such as choice, tariff reform and so on.

This has been a useful debate. For me, free social care is a means to an end. It will mean that people have the chance to choose where they die, and that their death is as dignified as possible. As the Minister said, families live with the experience of a poor death for the rest of their lives. I therefore urge the Minister to reflect carefully on the issue of carers. I am grateful for his comments, and given that he has undertaken to seriously consider that point, for technical drafting reasons I will withdraw the amendment.

Photo of Sarah Wollaston Sarah Wollaston Ceidwadwyr, Totnes

I thank the Minister for his response, and I would like to ask him a few questions. I accept that he feels that these matters are dealt with elsewhere, and that regulations can be introduced, but I want to take him back to the wording. It says “in specific cases” in the regulations. Can he reassure me that “specific cases” could include the broader category of terminally ill persons?

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I can reassure the hon. Lady about that.

Photo of Sarah Wollaston Sarah Wollaston Ceidwadwyr, Totnes

I thank the Minister; that is very reassuring. On his second point, he gave us reassuring news about the progress of EPACs. However, may I point out that the figure is up to 80%, but it is not 80% across the board? We must not be distracted. That 80% figure could risk people thinking that we are going to deal with it all through EPACs and that therefore other measures are unnecessary. That is an important clarification on those data.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

I am grateful to my hon. Friend for her clarification and I accept her point. I did say that I was not arguing that the figure undermined the case for reform.

Photo of Sarah Wollaston Sarah Wollaston Ceidwadwyr, Totnes

I accept that, but I thought it was an important clarification to put on the record.

There is also the fact that we have four reviews ongoing in this area—or one about to start. The Minister will know that one of those reviews was set to be completed last year. I am grateful for his categorical assurance that it will start this year, that it will be completed by the end of this year, and that the terms of reference will involve stakeholders. That is reassuring.

Most of all, I am absolutely delighted with the Minister’s assurance that he is determined to introduce the policy and that it refers to the issue of free social care at the end of life. Based on that reassurance, I look forward to seeing the progress of the policy, and I am happy not to press the new clause to a Division.

Amendment, by leave, withdrawn.

Clause 19 ordered to stand part of the Bill.

Clauses 20 and 21 ordered to stand part of the Bill.