Care Bill [Lords]
The Committee consisted of the following Members:
Fergus Reid, Committee Clerk
† attended the Committee
‘(14) The regulations in subsection (7) are subject to the affirmative resolution procedure.’.
I do not know whether I am allowed to do this, Mr Rosindell, but I want to welcome the non-Members who are here today. I would love to know who they all are and where they are from. It is nice to see people listening to this important discussion.
I know that hon. Members may have wished to go to the funeral of Paul Goggins, which is taking place today. We are not there because we are fulfilling our duties on the Care Bill. Many hon. Members will know what a decent and good man he was. He began his career as a social worker in children’s services, and was a passionate campaigner and a good, honest and true man. I wanted to pay tribute to him on the record.
The Minister of State, Department of Health (Norman Lamb): I join the hon. Lady in what she said about Paul Goggins. He was a lovely man, and really nice to deal with. He was completely non-tribal and had clear principles that he was prepared to fight for. I had a meeting with him on an important issue, which was not of great public excitement and involved the care of people in prisons, but he was passionate about it. I had a high regard for him, and I agree with what the shadow Minister said.
Hon. Members will know that clause 17 is about how someone’s income, savings and assets are assessed to determine whether they qualify for financial support from their council to pay for their care. It is about the means test in social care. It enables the Government to make regulations on how and at what level that means test is set. Amendment 95 would ensure that the affirmative resolution procedure of both Houses of Parliament would be required for the regulations to become law, just as we proposed on Tuesday for the regulations on the cap on care costs. I want to talk about why the amendment is necessary and to make a few general comments about the means test.
How the means test works is critical in determining whether pensioners with a modest income and assets will benefit from the Government’s proposed changes to social care funding. Let us be clear: care for the poorest pensioners, if they are assessed as being eligible, is free. Better-off pensioners, particularly those with more expensive homes, will benefit most from the cap. The means test is the key issue for everyone in between—the squeezed middle, or older people who have worked hard, saved all their lives, bought a modest home and perhaps have a small second pension on top of their basic state pension.
Hon. Members may be aware that there are two means-test thresholds for residential care: a lower limit and an upper limit. The means test works in between those limits. At present, older people with income or assets, including their savings and home, worth less than the lower limit, which is currently £14,250, have their care paid for. Those with income or assets worth more than the upper threshold of £23,250 must pay for their care in full. Alongside introducing the cap on care costs, the Government are raising the upper means-test threshold to the equivalent of £118,000, as Andrew Dilnot recommended, but the lower level will remain roughly the same, although by 2016-17 it will be equivalent to around £17,000.
That move is welcome. Opposition Members have said that any cap on care costs is a step forward, and we recognise and welcome any move that ensures that more pensioners have help to pay for their care.
Jim Shannon (Strangford) (DUP): I want to go back a couple of steps to the hon. Lady’s comments about the fact that pensioners may be asset-rich and money-poor. Houses may have been in families for generations so people may have built up their assets, and that will restrict the benefits they receive. Is that the point the hon. Lady is trying to make?
Liz Kendall: Yes, and I will explain why people who do not have much of an income but have a big asset and those on average incomes, perhaps with a basic state pension and a small second pension, will not receive any help from the rise in the upper threshold of the means test because of the way it works. I hope that the hon. Member for Strangford will bear with me because I want to put the matter on the record, complicated as it is.
The reality, because of the way in which the means test works, is very different. In the other place, Lord Lipsey, as so often, hit the nail on the head. He said that the reason it is a problem for people with modest incomes and modest assets is because of what is in fact
I hope the Committee will bear with me while I explain. Let us say that an elderly person with an average income—a basic state pension and the average amount of a small second pension—has assets or savings of about £100,000. I will use that figure partly for the
The council assumes that for every £250 a pensioner has in their home, they have £1 of notional income, which, of course, they do not, but that is how the means test works. When we add together the average income of a single pensioner, which the DWP estimates at £256 a week, plus the notional income between the lower and upper level of the means test, the pensioner on an average income with assets or a home of £100,000 would be assessed as having a total income of £588 a week. Since the total income of £588 a week is far above the standard rate that a council would pay for a week’s stay in a care home in their area, which we know is £477 a week, the pensioner is deemed to have too much money to qualify for help to pay for their care.
I am not proposing at this stage that we change the means test. I am trying to explain that the means test is crucial for pensioners on modest means, but the way in which it works, even with raising the upper threshold, means that many will not qualify for any extra help. The Health Secretary should not be claiming that for the first time pensioners on modest incomes will be protected by raising the upper threshold, because that is not the case. Did the Minister look at trying to change the way in which the means test works so that it helps pensioners on average incomes with modest assets, or pensioners who might be asset-rich but income-poor?
I want to raise a couple of points—some of which I have mentioned before, because the issues are critical to the means test—about pensioners who do qualify for some help. I am sorry to ask the Minister again about attendance allowance, about which I am increasingly worried. Lord Lipsey said in the other place he had discovered that if a pensioner applied for help through the means test, they would lose their attendance allowance after the first four weeks. I think he was alerted to the issue by the older persons charity FirstStop, which said some people might be better off not asking for help under the means test, because they could lose £79 a week in the higher rate of attendance allowance. Will the Minister tell us whether that is the case? Would a pensioner lose their attendance allowance if they applied under the means test for support under the Government’s new proposals?
The tricky issue of top-ups was raised by Lord Lipsey in the other place. I want to pay tribute to him because he really knows his stuff. He has been very helpful in scrutinising the Bill. At the moment, if a council assesses that an older person’s needs can be met by paying, say, £400 a week for a care home, they and their family can choose for them to go to a more expensive care home that costs, say, £500 a week and pay the extra £100 from their own pocket. However, the older person would be legally prevented from paying the top-up. A family member could pay, but the older person could not. In reality, some councils apply that rule strictly and others do not, so it can be confusing. What happens if the
As the care Minister will know, Lord Lipsey tabled an amendment in the other place to clarify the situation with top-ups. There are loads of top-ups going on, although everybody denies it. I raise this issue because more and more people will be assessed under the means test because the threshold is increasing. Older people who want to top up their help from the council so they can go into a slightly better home are not able to do so, and if they give the money to their family they may be acting illegally.
I believe that we should help people to contribute towards the cost of their care, if that is what they want. The top-up situation has always been confusing. I have not tabled again Lord Lipsey’s amendment, but it is important that the Minister addresses this issue. More and more people will be assessed under the means test, it is currently illegal for older people to pay a top-up and there is confusion in the system. What will the Government do about it?
These issues, as I have probably explained inadequately, are complicated. The means test relates to how the cap works and whether pensioners want to take out loans. Those details will be set out in regulations, which we are being asked to pass without proper scrutiny. We have asked for the regulations to be subject to the affirmative resolution procedure because Members should be allowed to scrutinise them properly. As the Minister knows, the means test is critical because it is about people with modest incomes and assets, and I genuinely think that it is key to making the Bill fair. It is about helping not only the poorest or the very rich, but everybody in between—the squeezed middle.
Norman Lamb: Let me start by agreeing with the shadow Minister. This is a complicated issue, and it takes a while to get one’s head around it. The bottom line is that the extension of the means test is, as the shadow Minister said, in accordance with Andrew Dilnot’s recommendations. It will mean that about 35,000 more people get social care support from their local authority.
The hon. Lady is right that people who have assets of less than £118,000 will not get additional support because of the combination of their income and assets. I have said all the way through that it is incredibly important that we are clear about what the measure will and will not do, but its great value is that a whole load more people on modest means will get more help. The value of extending the means test is that self-evidently it will help. The 35,000 extra people who will get social care support are those who need it most. I am sure the shadow Minister agrees with that. She was generous in indicating that she supports the move, but the fact that the coalition Government are providing extra help with care costs for a load more people on modest means is incredibly positive, and is widely welcomed.
She asked about the consideration given to changing the formula. The problem is that there would be a cost attached to that. I think Lord Lipsey put forward a proposition that involved changing the formula for
There is a sense at the moment—and has been for a long time—that if someone has over £23,000 they are on their own and lose everything and get no support at all. I am proud that this Government are finally addressing that great injustice. I think it will make a real difference to people.
On the specific point about attendance allowance, the way in which social care payments work can affect eligibility for certain state benefits, including attendance allowance. In designing the detail of the reforms, the Government are considering the interaction with the benefits system—the shadow Minister is right that it is complicated—to ensure that no one will be made worse off by these reforms. I repeat that many more people will be made better off by getting some support with their care costs, and that help will be targeted at those who need it most.
Liz Kendall: How would the Minister guarantee that? If someone at the moment claims social care means-tested support, they lose their attendance allowance. How will he guarantee that if someone decides to do that, they will not lose their attendance allowance?
Norman Lamb: The best answer I can give is that we are clear about what we want to ensure: that no one will be worse off. The design of how that works is still work in progress, but we will clarify the position as soon as we are able, both to the shadow Minister and to other hon. Members.
The shadow Minister also mentioned top-ups and whether an individual can top up. At the moment they cannot top up, although they can if somebody else can fund it. There is a legitimate concern of ensuring that someone who wants to top up is able to sustain that. Everyone would want to avoid someone taking on a financial commitment that they were not able to sustain, perhaps leading to a situation where they could not afford the particular care home they had chosen to go to. Those are really tricky issues and we want to ensure that we give that extra flexibility. We are looking at relaxing the rule, but we must ensure that there are still some protections for the vulnerable people I refer to.
Liz Kendall: It is excellent that the Government are looking at relaxing the rule. That is something new. We are obviously right to be concerned about whether elderly people who start topping up will continue to have enough money to do so, and that they do not have to leave their care home. However, the same could be said for families. Families are topping up; that is legal, but what if they lost their job? What if their kids go off to university and they have to pay fees? That argument is not very good. Families are just as prone to terrible things happening if they are paying the top-up as older people. If the Minister is looking at relaxing the rule on top-ups, how will he do that? So that I can keep my eye out for regulations or consultations—it is quite hard to keep up—where will he do that?
The Bill has been widely praised for the manner in which it has been drafted. It is a model of co-production, as I have said before, consultation and positive joint working between the Government and stakeholders. It has been described as the most consultative process perhaps ever undertaken for legislation. This is a testament to our commitment to open working, and not something that will cease with the completion of primary legislation. That approach will continue through secondary legislation under the Bill. We will carry forward the approach in the regulations and statutory guidance that will underpin the Bill.
We have already committed that all new regulations made under part 1 will be subject to public consultation in advance of being laid before Parliament. That is in addition to the open and collaborative manner in which we are drafting those regulations and statutory guidance, even before consulting publicly. It means that stakeholders, members of the public, hon. Members, and anyone else will have the opportunity to comment on and influence all regulations and guidance. The amendment would require regulations made under clause 17(7), which are in relation to the carrying out of financial assessments, to be subject to affirmative resolution. We do not think that that is necessary.
The provisions in clause 17 will establish a single legal framework for financial assessments, underpinned by regulations and statutory guidance. This would build on and enable us to improve the current system. Our aim is to promote greater transparency and fairness by setting rules that prescribe a consistent approach to charging in similar circumstances, where appropriate, as well as allow scope for flexibility to respond to different local circumstances where necessary. For example, models of residential care and the implications for approaches to charging are relatively similar across the country. In particular, residential care will include accommodation, food, and utility costs, as well as personal care. We would therefore expect regulations to prescribe rules that require a consistent approach to determining charges by different local authorities, as they do now.
Key to delivering this approach will be that regulations are flexible enough to be kept updated. There are already regulations setting out how local authorities should financially assess people in residential care. Those regulations are a long-standing feature of the care and support system, and parts of them are revised, updated and laid annually. Reflecting this practice of regular revision, they are subject to negative resolution, something to which the hon. Member for Leicester West, although not then a Member of Parliament but a special adviser in the Department of Health, did not appear to object to any great extent.
Norman Lamb: I accept that very fair intervention. However, none of her colleagues in this place objected to negative resolutions, which we are simply continuing through this measure. Requiring affirmative resolution would be bureaucratic and unnecessarily time consuming. Given parliamentary timetables, this may mean adding several months to finalise regulations. In this case, where we intend for the regulations to be updated annually, it could seriously compromise the ability to keep provisions up to date, and to provide them to local government with sufficient notice in advance of implementation.
Liz Kendall: I know what the Minister is going to say, but what I care about is the issue of someone who claims under the social care means test losing their attendance allowance. That will be about £87 a week when the measure comes in, given that the upper level now is £79. That is a lot of money for an unbelievably frail, elderly person—it is a lot of money for anyone. The Minister has said that under the regulations no one will be worse off, but how are we going to check that? How do we scrutinise whether what he says will happen? How will we vote to stop it if we think the Government have not done it properly? How will we do that? That is the main, serious thing that I am bothered about. The Minister has said that no one will be worse off, but I am not sure which regulations are meant, I am not sure when they will be introduced, and I do not know how the Government will do it. Will they fundamentally change the principle of the means test, or allow it not to apply to some people who claim under the means test? I do not know. It is completely confusing, but really important.
Norman Lamb: I agree that it is important and that we need to get the detail right. The point I have tried to make is that we are intent on getting the detail right when the measure is first introduced. There is a long, collaborative, consultative process, with which we will include the detail of the attendance allowance impact. There will therefore be every opportunity, not only through parliamentary processes but through proper consultation beyond this place, to ensure that we get the detail absolutely right and achieve the objective we are all after, so that the hon. Lady and others—including myself—are satisfied before the regulations are laid before Parliament. I hope that reassures her.
In any case, from the perspective of public and stakeholder engagement, the additional process is completely unnecessary on an ongoing basis since, as I have said, we have already committed to consulting publicly on the first set of regulations. Moreover, the
No one can seriously doubt our commitment to consultation on the development of the Bill, and we have already committed to continue that with regulations and statutory guidance. The amendment would do nothing to improve the commitments we have already made.
Liz Kendall: I would like the Minister to write to me to spell out exactly when the proposals are coming out, so that I can keep track of everything and the Opposition can be clear about what we are doing. This issue is complicated and the point I am most concerned about. If the Minister commits to that, I will withdraw the amendment. Finally, he has been clear in Committee that not everyone on modest means will have all their care free under £118,000, but perhaps he should have a word with the Secretary of State so that he does not make assertions that are not true.
Norman Lamb: I talk regularly to the Secretary of State and I see no difficulty in that regard. I am also happy to write to the hon. Lady, because the bottom line is that we are after the same thing. I am not in any sense seeking to deceive anyone; I simply want to ensure that we get it right and do not have unintended consequences. I am happy to lay out the intended time scale for all the proposals, and to allow her to scrutinise it and keep up to date.
Jim Shannon: I realise it is the 11th hour for making an intervention, but I want clarification on the attendance allowance issue that the hon. Member for Leicester West brought to the Minister’s attention. The hon. Lady was seeking assurance that the attendance allowance would not be affected by the changes. The Minister agreed to look at that and to report back—I do not want to put words into his brief, but I think that was what he said. Will he clarify the attendance allowance issue? I personally do not want to see any changes for those with attendance allowance. The attendance allowance is there for a purpose, which is to help those who are disabled and need help. It therefore should not be affected and I seek clarification on that point.
Norman Lamb: I thank the hon. Gentleman for that intervention. I have been clear about our commitment that no one will be worse off as a result of this measure, and that is an incredibly important reassurance to people who are receiving the attendance allowance. As a result of the reform going through, as soon as it is introduced in 2016, 35,000 more people will straightaway receive payments for social care support from their local authority. They are the people who need it most and who are most challenged in terms of capital and income, and that is a crucial combination. For means-testing purposes, the contribution has been designed for a particular reason—to target support on people who need it most. That is what the change does. Thirty-five thousand people will receive support from their local authority for the first time. The additional guarantee is that we will ensure that no one is worse off in respect of the interplay between the attendance allowance and payments from the local authority. I will write to the hon. Member for Leicester West to keep her reassured.
Liz Kendall: I am happy to withdraw my amendment, but I still have no idea how the Government will do it. I am sure that the Minister does not want anyone to be worse off, but either the Government will have to say, “You don’t lose your AA if you claim under the means test”, or they will have to fundamentally change the means test. I have not seen any detail about how that will be done and I am sceptical—to put it mildly—not about what the Minister wants to do, but about how on earth it will be done. The Government have to change fundamentally either the attendance allowance or the social care means test. I do not know how they will do it and I want that on the record. We need to see the detail. I am worried that we will not be able to scrutinise it, but let us see the letter from the Minister. On that basis, I beg to ask leave to withdraw the amendment.
‘(or someone acting on the adult’s behalf if the adult lacks capacity to arrange for the provision of care)’.
Clause 18 provides a duty to meet eligible needs for care and support, and my amendment seeks to address an issue that was first raised during the Joint Committee’s consideration of the Bill. The issue that it addresses comes out of clause 18(4), which appears to put self-funders who lack the capacity to make decisions for themselves in a more disadvantaged position, relative to those who are also funding their own care, but still have a capacity to make decisions for themselves. The clause effectively allows for circumstances in which a person has the means to pay for their care and asks the local authority to arrange that care. If they have the capacity, they can ask the authority, but it is not clear that the situation is as straightforward when a person, under the mental capacity legislation, does not have that capacity.
The clause appears to work in this way: first, local authorities have a duty to meet eligible needs for people with assets below the financial limit under clause 18(2). Secondly, local authorities have a duty to meet eligible needs of people above the financial limit under clause 18(3), if they ask the local authority to provide or arrange the service. However, the problem is about people who have assets above the financial limit—in other words, they have the means to pay for it—but cannot ask for it to be arranged, because they lack the capacity. I believe, as did the Joint Committee, that the Bill should provide for a third party to make a request, which is what my amendment would insert into the legislation. We considered that issue in Committee—let me quote from the Committee’s report:
“We consider that it is wrong in principle to place a person with impaired mental capacity in such a disadvantaged position, and we put our concern to the Department of Health. In a note of 30 January the Department responded, stating that it ‘takes on board these comments, and will consider whether any changes are necessary. It is not the Government’s intention to create a disparity.’ We welcome this undertaking to look again at the drafting of this clause.”
We did not put that into bold, so it did not become a recommendation and therefore, there was no response in the published Government response to the Joint Committee’s recommendations. It was never made clear how the Government intended to address that disparity. My amendment is an opportunity for the Minister to indicate how the Government intend to do that and, I hope, to set out a course of action that will address the concerns that I and the Joint Committee have.
Clause 18 allows people, even those with enough means to fund their own care and support, none the less to ask the local authority to arrange care and support on their behalf. This is an important and groundbreaking new right. This amendment seeks to clarify that where an adult lacks capacity to arrange their own care and support, someone is authorised to act on their behalf. That person is able to ask the local authority to arrange the adult’s care and support on behalf of the adult.
This is an important point. Where an adult lacks capacity, a friend or relation might act on their behalf, but the existing general law on mental capacity already allows for that situation. So we do not refer to an adult’s mental capacity in this part of the Bill, where it is merely to provide for a person authorised under the Mental Capacity Act 2005 to do something on that adult’s behalf. For a provision which hangs on an adult asking a local authority to do something, such as the provision in question, this applies equally where a person authorised under the Mental Capacity Act asks the local authority on that adult’s behalf. This is in line with general law on capacity, as provided for by the Mental Capacity Act.
We considered the exact issue that my right hon. Friend the Member for Sutton and Cheam raises through this amendment as we were drafting the Bill. We have been assured that the Bill, as drafted, achieves this, but to clarify our intention we stated in paragraph 123 of the explanatory notes that:
Paul Burstow: I am grateful to the Minister. It is helpful to have that clarification on the record. I will take away his words and reflect further on the words in the explanatory notes as well. My concern is how this translates into practice and how we ensure that there is a clarity of understanding about the interaction between obligations on a local authority with regard to the Mental Capacity Act and the Care Act, as it will become. An inquiry is currently going on into the application and effective implementation of the Mental Capacity Act, which certainly calls into question whether or not that legislation is widely understood and applied. Will the Minister give us some reassurance about how we ensure that the guidance here properly reads across and translates into good training and practice?
Norman Lamb: I gave evidence to the inquiry in the House of Lords on this point. In response to the concerns that my right hon. Friend raises, I want to stress that a lot more work needs to be done to embed the Mental Capacity Act in practice. I have a particular concern that there appear to be examples of people who lack capacity, who may be in an assessment and treatment centre, for whom there is no deprivation of liberty safeguard in place. The consequence is that that person is being held unlawfully, which has to be treated extremely seriously.
I am absolutely determined to ensure that that important Act, passed by the previous Government but widely welcomed, is enforced properly, so that for those deprived of their liberty, there are proper safeguards in place. We are not there yet, but it is an absolute priority for the CQC, when conducting inspections, to ensure that the legislation is properly enforced.
Paul Burstow: As someone who agitated for that legislation and who served on its scrutiny Committee, I am anxious that lessons are learned, not least because that legislation set in law, for the first time, a set of principles governing best interests, which the inquiry has revealed have not always been faithfully understood and followed in practice. There are certain principles in this Bill regarding well-being, and it is important that we learn the lessons of how we embed them into practice.
The Minister did not respond to my concern about how the eligibility criteria section is written and how we interact with people’s needs. I fundamentally believe that it is important to take a holistic approach. The question I was asking was: would care needs at the lower level, which would not normally come into the eligibility criteria as written here, be met, where the care provided by informal carers—friends, family and so on—was dealing with eligible care needs?
It is not only me who has concerns. The Minister has talked about a much more preventative approach, which the measure would be. However, evidence from the College of Social Work—written evidence CB 09—raises that issue as well. The college says that proposals in the Bill
“offer more of the same in terms of focusing on care activities that are centred on essential tasks. Past evidence would suggest that this approach will never be able to fully address the full circumstances of a person’s life…the reality is that need is usually interpreted in the light of available resources.”
The Bill, which should take us well into the 21st century, is drafted as if we were still in the 20th. It does not recognise the growth of personalisation, which has led to a much more varied approach to meeting need. There is no straightforward correlation between the given level of need and the cost of meeting it, except that that is now being put into legislation in terms of what people might get by way of personal budgets, which we will discuss in the next few sittings.
Resources that may be appropriate to respond to an individual’s needs in one area may be insufficient in another. We need to consider how assessment and resource allocation can properly be separated. Not doing so will lead to care and support planning that does not meet needs as necessary to deliver independence and well-being.
“When conducting the needs assessment and the eligibility determination, the local authority will assess the totality of the adult’s needs, regardless of whether a carer is currently meeting any of them…If a carer were to cease providing care and to stop meeting any eligible needs, this would trigger a review of the adult’s care and support plan, and may mean that the local authority is required to meet the needs. If the carer has needs for support, they should be entitled to an assessment in their own right, under clause 10, and may receive support to meet their eligible needs.”
Will subsection (7) still apply if the carer can no longer provide care for the mild to moderate needs, in order to continue providing care for the substantial needs? Excluding support of that kind does not sit with the idea of a preventive care system. There are two risks if we do not support carers by relieving them of the need to provide some more moderate care. First, the carer might be unable to continue caring, so that the person with needs might have to go into residential care or might have a much greater level of need for care to be purchased; secondly, the carer might need care in their own right.
We know from examples already given that many carers are elderly; often they are the spouse of the person being cared for. The effort of providing substantial care can put their health at risk. Unless we move towards a more holistic approach—one in which those with overall substantial needs have their lower-level needs, such as cleaning or sitting services, recognised as eligible for support, although standing alone they would not be—there is a risk that we shall double the burden.
Assessment deals with all eligible needs. The care plan that is then developed deals with which of them will be met by the local authority. Prevention duties that can apply to everyone are relevant in this context. That means that if someone is found to have eligible needs the local authority can include lower-level support in the care plan. That is the key point that the hon. Lady was concerned about.
I now have a note that I have not seen before, but I shall read it and we shall see where we get to. It states that where a carer is meeting an adult’s needs the local authority will not be under a duty to meet those same needs; but it will have to identify those needs in the assessment and determine whether they would be eligible. That is to create an incentive to ensure that the local authority supports the carer to maintain their caring role.
I hope that that helps, but I think that it would also be helpful if I were to write a letter amplifying the points that the hon. Lady raised. They are important, and if I can assist all hon. Members by replying in substance to her concerns that will be of value.
It is essential for the care and support system that it should be clear when a local authority is required to meet people’s needs. The Government have therefore set out in the clause the conditions and circumstances that would entitle an adult to have their needs for care and support met.
Current legislation sets out numerous duties on local authorities to provide particular services in certain circumstances. That overlap and duplication is precisely what the Law Commission sought to abolish when recommending a single duty to meet eligible needs. Clause 18, however, does more than merely consolidate the law. It provides a general duty to meet needs, rather than specifying services to meet specific needs. That supports local authorities to provide flexible, personalised care and support.
I thought that the hon. Member for Sheffield, Heeley said that the Bill does not recognise the growth of personalisation. If she did say that, perhaps she would like to clarify that. I think it does. That is the heart of the legislation: the enshrining in legislation of the personal budget and the direct payment as well as the whole principle of well-being. I do not know whether she wants to clarify.
Meg Munn: The point I was making was that a rigid interpretation of clause 13 suggests that certain care needs are eligible and others are not. Someone can be given a budget to support their care needs and the personalisation in those budgets has been used often to help with shopping and other services, but those would not by themselves meet the substantial or moderate test—or whatever the Government end up with. My point is not that the Bill does not talk about personalisation overall, but, if that clause is interpreted in the way I describe, that would run counter to the thrust of the personalisation agenda.
Norman Lamb: I totally take the point and I will write to the hon. Lady to amplify what I just said. The clause makes it as easy as possible for people to understand the circumstances in which they will be entitled to care and support.
First, a person’s needs must meet the eligibility criteria set out in regulations under clause 13. Secondly, the person must be ordinarily resident in the local authority’s area or, alternatively, be living in that area at the time but have no settled residence. That is to ensure that a single local authority can be identified as responsible for meeting that person’s needs.
Thirdly, the clause provides for the interaction of those two factors with charging and financial assessment. If the local authority does not charge for a type of care and support, or regulations provide that that is to be provided for free, there is a duty to meet needs regardless of the person’s finances. If the local authority does charge, the adult’s financial circumstances are taken into account. If the adult’s financial resources are below a financial limit—that will be set in regulations—the duty to meet their needs will be triggered. If the person’s finances are above that level, however, they will still be able to access local authority support.
The clause introduces a new duty whereby local authorities must arrange the care and support for people whose resources are above the financial limit but who ask for that. The new duty will ensure that all people
Finally, the clause makes provision for the impact of funding performance. It specifies that the local authority must meet an adult’s eligible care and support needs if that person’s care costs have reached the cap to be set out in regulations for the capped care costs system.
The clause is integral to the reformed system of care and support. It creates a clear framework for entitlement for people who need care and support. It was widely supported in the consultation on the draft Bill.
‘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.’.
Paul Burstow: 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
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.
Liz Kendall: 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?
Paul Burstow: 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.
Bill Esterson (Sefton Central) (Lab): 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?
Paul Burstow: 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.
Sarah Newton (Truro and Falmouth) (Con): 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,
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.
Dr Sarah Wollaston (Totnes) (Con): 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
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
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.
Jim Shannon: 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
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
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.”