Care Bill [HL]

Lord Mackay of Clashfern Excerpts

Monday 14th October 2013 Lords Chamber

[Lord Dubs (Lab)]

My Lords, I welcome how far the Minister has moved from Committee to today. I hope that noble Lords will not think it churlish of me to say that perhaps he might be persuaded to move a little further. I will speak first to Amendment 60, which seeks to oblige a local authority to provide advice and information about what can be done in the event of an emergency, or if needs change. I am specifically talking about what I think we have referred to before as people with fluctuating conditions and needs. We know that there are many millions of people in the country who have fluctuating conditions such as multiple sclerosis, rheumatoid arthritis, HIV, Crohn’s, colitis, epilepsy and Parkinson’s disease, and there may be many others. Therefore, we are talking about a significant number of people who will be affected by the provisions of this Bill.

Not long ago I was talking to a woman in a wheelchair who had MS. She was very lively, bubbly and sparky, and she said to me: “You know, I’m not always like this. Some days I go down and I can’t even get out of bed, so don’t judge my condition by the way you see me today”. I took that very much to heart, and it is clearly the sort of situation that this amendment is about. As the Bill is currently drafted under Clause 25, it would not really make provision for such situations.

This amendment is actually operationally simple. It would help to ease the pressure placed on formal and informal carers, and would give them more certainty. Not only will it ensure that individuals get the timely care that they need when they need it but, equally importantly, it has the potential to prevent costly and unnecessary hospital admissions. If this amendment is not in place, there is always the possibility that with a downward fluctuation in condition, the person without the support will then have to be hospitalised. That in itself is costly and is utterly undesirable from the point of view of the person who could be helped in the home if this amendment were to be passed.

Local authorities are surely in a position to provide better tailored care, to promote confidence and control and allow people to prepare for such rises and falls in their care needs. The current drafting does not allow for it. A snapshot was taken by the NRAS—the National Rheumatoid Arthritis Society—which indicated that currently more than 30% of respondents with rheumatoid arthritis have been admitted to emergency care as a result of a flare-up in the disease in the past year. This is something which I trust could be prevented if we changed the way in which this clause was to operate. A survey of 1,000 people with MS revealed that 95% of respondents felt that better services during a relapse or a sudden deterioration of their condition would help them to maintain their independence. More than 80% said that they want to be able to plan their care and support in advance of that care being required. This amendment would help people whose conditions might suddenly worsen and, as I said earlier, would potentially prevent unnecessary and costly hospital admissions.

I turn to Amendment 61. As the wording of the Bill in Clause 27 states, local authorities have the power to generally review care plans. However, they are not required to specify when they anticipate that these reviews will take place. This amendment seeks to put some certainty into the process. There should be an agreed date between the adult and the local authority upon which a review of the care and support plan would be offered. I envisage a discussion between the local authority and the person concerned about the best way in which their care needs can be met.

An anticipated review date, agreed between the local authority and the adults, would provide stability and certainty to those being cared for. It is not a large change but it would be beneficial for the people concerned. I do not want to spell out with examples where people have said what a difference it would make if they had this element of certainty. I would like this amendment to be passed, which will give the adult the confidence that their care would continue as agreed until the specified date or until the adult themselves chooses to request a review in line with Clause 27(1)(b).

[Lord Mackay of Clashfern (Con)]

My Lords, I generally support these government amendments, and thank the Minister for introducing them. There is just one small point I want to mention, which has been raised in my mind by the observations made by the noble Baroness, Lady Pitkeathley, in relation to Amendment 33.

I had understood paragraph (b) of Amendment 33 to carry the implication that if something was found that would benefit the person in question as a result of examination of what is in (b), the needs assessment would include that. However, I just wonder whether the last part creates the possibility that if the benefit can be received from something in the community, outside the provisions that the local authorities have made, that would be excluded; in other words, it would tend to reduce the needs assessment. I had rather thought that the proper construction of this phrase would mean that that also should be taken into account as included in the needs assessment, and that, where it was available, the cost of it should be included in the needs assessment. Perhaps my noble friend will be able to clarify that point for me.

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[Earl Howe]

My Lords, first, I turn to Amendment 55, in the name of the noble Lord, Lord Lipsey, which concerns the circumstances in which people wish to top up their own fees to pay for more expensive accommodation. To begin with, and for the avoidance of any doubt, I will emphasise that I agree that people should be able to choose to spend their own money on more expensive care, provided it is affordable. Like the noble Lord, Lord Lipsey, I want people to be able to choose to live in more expensive accommodation and gain from a cap on care costs, so that they pay part of the cost of care from their own savings and still receive local authority support.

Through the consultation and stakeholder engagement, we are seeking to better understand the impact of relaxing the rules on self-top-ups and to determine what protections may be needed for vulnerable people.

The answer to the question posed by the noble Lord, Lord Hunt, is that consultation will close on 25 October. The Minister of State for Care and Support and departmental officials have, over the past quarter, attended a variety of events covering the care and support sector, local authorities and financial services providers. These have been broadly supportive of the principle that people should be able to contribute towards their care costs from their own assets. Stakeholders have also recognised that people need to make decisions which are financially sustainable for the long term, and that financial information and advice need to play an important role in achieving this. We will be able to provide a more comprehensive overview of the views expressed in our response to the consultation in the new year. I repeat that we are on the noble Lord’s side. Our only concern is to ensure that when we relax the rules, there are sufficient protections, both for the individual and for the local authority.

Amendment 56 concerns review of the operation of the capped-cost system. I am sure we can all agree unhesitatingly that these reforms need to be implemented effectively to deliver the outcomes we are striving for. The capped-cost system will provide peace of mind and protection against catastrophic costs and will target most help at those with the greatest need. I am confident that we can further agree that to deliver these benefits, we need good oversight. Therefore, I am with the noble Lords opposite in spirit. To that end, we will be reviewing and assuring both implementation and funding, and have committed to reviewing the core elements of the capped-costs system within each five-year period. We will also conduct post-legislative scrutiny, as the Government have committed to do across the board for all new Acts. The agreement we have with the Liaison Committee in the other place is that this should be done between three and five years after Royal Assent.

Furthermore, we have established the Joint Implementation and Programme Board with the Local Government Association and the Association of Directors of Adult Social Services. We will use this to work with local government on continuing assurance and improvement of the arrangements. We are confident that, in their totality, these arrangements provide generous opportunity for assurance and review to ensure that the reforms remain true to our vision.

For that reason, I do not believe it would be necessary or desirable to supplement these arrangements with a further review by additional oversight bodies, such as an independent ministerial advisory committee. Such additional oversight would cut across the scrutiny conducted by the Health Select Committee and cross-government planning on spending through spending rounds. I am sure that noble Lords opposite will not be totally satisfied with that, but I hope that they will be sufficiently reassured by the confirmation I have given that we will conduct a proper review of the operation and funding of these reforms through several channels. I hope that they will agree that this amendment is, therefore, unnecessary.

[Lord Mackay of Clashfern]

Before the Minister sits down, is he satisfied that, without the amendment of the noble Lord, Lord Lipsey, there is sufficient flexibility under the system as it is presently provided to allow for the sort of difficulties that are envisaged as possibly coming out after the consultation?

[Earl Howe]

I can reassure my noble and learned friend that, if we look at the arrangements we are proposing in combination, there will be sufficient mechanisms in place to take account of any unexpected wrinkles that emerge of the kind that the noble Lord, Lord Lipsey, perfectly reasonably anticipates; and to react and respond to those difficulties as appropriate. The answer, in a nutshell, is yes.

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[Baroness Finlay of Llandaff (CB)]

My Lords, I declare all my interests in this field, which are listed. These amendments are incredibly important for patients who are dying. The Government’s amendment is to be welcomed; I can see no problems with it. It might sound bizarre but I have some slight anxieties over the wording in two places in Amendment 137. It refers to a preferred place of death, whereas I would rather see the words, “preferred place of care”. Many people who are dying know that they want to spend their last days, weeks or months at home. They want to have everything done to support them at home, particularly out of hours. We have debated this for some time within my own specialist teams and specialist services. We are worried that there could be two unintended consequences. People who are not yet ready to confront the fact that they really are dying will be pushed to have that conversation before they are ready, which would be traumatic. There could also be the unintended consequence of some kind of target developing and patients being whipped out of one place of care.

The difficulty we see clinically is that when clinical situations change, patients sometimes change their mind. It is not uncommon for someone who originally said they wanted to die at home to say, when they really are dying, that they feel safer where they are and want their family brought in and as much of a home environment created as possible. It may be the regulations at ward level, or the way in which they are interpreted, which are blocking that and need to be addressed. For example, it does not matter at all if you have a husband on an all-female ward, but I have occasionally known staff to think that it does and that it is not appropriate to have a man stay overnight, which is absolutely appalling. Staff need to recreate the home environment where that person is as much as possible. However, if they have complex needs or unstable symptoms, they may well feel safer in whichever place they are, whether it is hospice or hospital.

In looking at the amendment I also tried to get some details of how many patients are successful under the DS1500 special rules. It is quite difficult, because I understand that the Department for Work and Pensions does not routinely collect that data. However, it seems as if in the year 2011-12, 11% of all successful claims were for the category of patients who were deemed to be terminally ill. One of the difficulties when you are looking at local authority charges for adult social care is that we cannot predict prognosis. That is always the catch with defining terminal illness. We are making our best guess, as it says in the Welfare Reform Act, as to whether someone can “reasonably be expected” to die within six months, but it is no better than that. It is a guess. There are patients who outlive their prognosis. I understand that the DWP does not push for reassessment inside three years, so there is quite a lengthy period of leeway. The potential difficulty that I can see unless this is really thought through and costed is that if somebody turns out not to be dying, what will then happen? Would they be forced to go through a reassessment? Would that then be used to try to claim back money from them afterwards? I raise those questions which would have to be thought through very carefully.

I certainly find it difficult—in fact, offensive—when people have to be assessed for care when they are quite clearly dying. However, there is that group of people you really do not know about. They appear as if they are dying. They tend to be more in the non-cancer rather than the cancer population, where their prognosis prediction becomes really difficult.

Those are just some caveats, although I support the spirit of the amendment wholeheartedly in terms of having patients where they want to be. However, as I said before, we need to focus on their place of care during their last days, weeks and months, and not only on their place of death.

[Lord Mackay of Clashfern]

My Lords, I very much welcome government Amendment 57. Of course, I have supported the recommendation of the Joint Committee on this matter, and continue to do so. Subsection (a) of Amendment 137 is important as a way forward. However, the difficulties to which the noble Baroness, Lady Finlay, has referred, are quite important in this connection. Many people in terminal situations would find a hospice one of the best places to go if that choice were open to them. Many people, of course, would prefer to die at home in a family situation. The hospices are normally able to engender a family atmosphere around death. People I have spoken to in the hospices have said, “If you have to die, this is the place to do so”; the “if” is not all that important.

There are practical questions to be taken into account, but it would be quite a step forward if the Government were able to come forward at Third Reading with an amendment which allowed some form of indication of the place of care, as the noble Baroness, Lady Finlay, says, or the place where one would wish to terminate one’s life in a way that was registered, so that those responsible would be able to give effect to it, so far as is possible, having regard to the changes that can take place in the last few months, days and hours.

[Baroness Wheeler]

My Lords, we welcome another opportunity to consider the very important issue of how people are cared for at the end of their life. The Joint Committee on the Bill urged progress on this vital matter and strongly endorsed the case for the introduction at the earliest opportunity of free social care for terminally ill people. In this context, the Government’s amendment is very much work in progress as it makes explicit the local authority’s power to treat end-of-life care as urgent, in a similar way to how fast-tracked access to welfare benefits such as the disabled living allowance is expedited and works in practice under other legislation, which the noble Baroness, Lady Finlay referred to. The amendment makes it clear that local authorities have the ability to consider the needs of terminally ill people as urgent and to meet their needs ahead of conducting assessments.

We welcome this provision. Many councils already fast track social care in this way, and I hope that this amendment will give those councils that do not the push and impetus that they need to take up this very self-evident and fundamental requirement. The new clause in the Bill is rightly welcomed by the Sue Ryder Foundation, Help the Hospices and Macmillan Cancer Support. However, as Macmillan also points out, the provision is permissive and does not legally require local authorities to meet a terminally ill person’s need for care and support without a needs or financial assessment.

We recognise that there is still much work to be done on this matter. The Government are currently undertaking a review and refocus of the end-of-life strategy and I read in the press over the summer that it was shortly to be published. It is now six years since the strategy was introduced under Labour so I would be grateful if the Minister could update the House on the timetable for that.

As we recognised during the debate in Committee, the results of the seven adult and one children’s palliative care pilots will be crucial to considering the move towards the provision of free end-of-life care as called for by the Joint Committee and as set out in Amendment 137 in the name of my noble friend Lord Warner, supported by the noble Baroness, Lady Greengross, and the noble Lord, Lord Patel. We need to understand current patterns and resource use across health and social care at the end of life, and to have the vital data—from across care provided by the NHS, social care, and the voluntary and private sectors—from which the costs of an integrated end-of-life care system can be properly assessed. The Minister reassured the House that the pilots are on track, despite the handover of responsibility to NHS England and concerns that the work was falling behind. We certainly hope that this is the case as the pilot findings will be so important to how future services can be shaped and delivered.

We acknowledge and share the Government’s concerns about the issues raised in Amendment 137 that the infrastructure may not be in place to support people’s preferences about where they wish to die; commissioners need to be sure that the right services are in place in the community to support people being looked after in their home. My own party is currently working on this as part of our policy review and whole-person care commission, and I know that my noble friend Lord Warner’s contribution to that work will be much appreciated and valued. Enabling NHS patients to have the right to die in the place they regard as home or their normal residence can be achieved only if end-of-life care is fully integrated across the NHS, local councils and hospices, to foster mechanisms to make it achievable and not simply an aspiration.

Once again, the position of carers of people who are terminally ill, as well as those they are caring for, needs to remain to the fore when we are looking at this matter. In Committee my noble friend Lady Pitkeathley cited the Carers UK survey that showed just how much more support is needed for carers to help them think and plan for the end of life of the person they are caring for—something that we can and should be taking action on now. Many carers just do not know how to plan for the death of a loved one and how to try to look ahead when caring ends—returning to or taking up work, social contact and managing financially.

One of our bereaved carers I spoke to recently through our local Carer Support Elmbridge had had a nightmare experience over funding and not being able to ascertain who was paying for what in the transition from social care to NHS continuing care before her husband died. This included two months’ overpayment by social services, which had to be sorted out after the death, at a time of great anxiety about family finances. To add to this, an ambulance turned up two months after her husband’s death to take him to his routine blood test at the local hospital. Your Lordships can imagine how devastating this experience was for the carer. Sadly, this is not an isolated case, and an integrated end-of-life strategy has to make sure that these things do not happen.

Finally, in Committee I raised the issue of access to palliative care and end-of-life care for BME groups following the recent and alarming findings of the Marie Curie Cancer Care and Public Health England survey and the shockingly low use of these services among black, Asian and ethnic minority groups. The report identified major problems involving lack of knowledge about services, misunderstanding, mistrust and a lack of cultural sensitivity on the part of providers. In his August letter to noble Lords, the Minister referred to the work that NHS England is undertaking on this in conjunction with palliative care pilots. Will the Government be responding specifically to the Public Health England report, or is it part of the strategy review and refocus? Will the Minister set out for the House the Government’s outline timetable for the review and publication consultation, the timing of the publication of the pilot’s results, as requested by my noble friend Lord Warner, and the introduction of the new funding system for palliative care as promised for 2015?

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[Lord Warner]

My Lords, I rise again as the keeper of the Dilnot tablets on the subject of deferred payments. If we had intended that access to a deferred payment scheme was to be limited to people with assets of less than £23,000, we would have said so in our report. That was not what we intended. I commend the report to the noble Lord, and I hope the House will forgive me if I just cite a few bits of it.

I refer the noble Lord to page 41 of our report. We said:

“Evidence submitted to the Commission suggests that the availability and use of deferred payment schemes is patchy”,

and we went on to explain that. The government consultation document suggests that it will continue to be pretty patchy as well because very few people are likely to come forward for this. We said—and this was a recommendation:

“At a minimum, the Commission recommends an extension to the current deferred payment scheme so that it is a full, universal offer across the country.”

That is what we said.

The Government have given the impression in various interviews—I have gone head to head with government spokesmen about this on a number of programmes—that they were going to support an extended deferred payment scheme and that it would be pretty much similar across the country. If you had a deferred payment scheme in Cumberland, it would look remarkably like a deferred payment scheme in Cornwall. It seems that we are getting into a position where none of this will be the case. It is pretty rough on the public if the Government and their spokesmen are giving the impression that they are implementing the Dilnot recommendations on deferred payment schemes when they are palpably not doing so under the present set of proposals as I understand them.

It is not too late for the sinner to repent—the consultation period is open until later this month. However, it is necessary to revisit this in terms of what government policy is on this particular issue, both in terms of access to a deferred payment scheme and on the issue of a model scheme. The two go hand in hand. It is no good having a model scheme if it is a model scheme for a handful of cases in different parts of the country. We need a model scheme that is actually available so that people who want to cope with the issue of how they fund their care can access a deferred payment scheme. It is always a risk when you are on a committee such as the Dilnot committee that, quietly and unobtrusively, the bureaucracies will nibble away at well intentioned recommendations. Some of us have had this experience ourselves, and some of us have done a bit of nibbling as well from time to time as civil servants, so we recognise nibbling when it is going on. We are in that position here.

It is down to the Minister to start some discussions about this issue, not to leave things to the marketplace, and not to give the public impression that there is going to be a widely available deferred payments scheme when, in fact, it is going to be available only to a fairly limited number of people.

[Lord Mackay of Clashfern]

I do not understand why it is necessary to have any kind of limit in relation to this matter so long as there is sufficient security to allow the deferred payment to be feasible from the point of view of the Government. The proposition that the deferred payment scheme should be limited by the amount of assets a person has strikes me as rather unnecessary. So far as a model scheme is concerned, I would have thought that there is a lot to be said for having a form of document which is universal. There would of course be the possibility of different particular provisions relating to particular cases, but the central core of a deferred payment agreement could be put in a form of universal application.

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[Baroness Hollins (CB)]

My Lords, briefly, I support all the amendments in this group, particularly Amendment 124 to which I added my name. There were a number of voices calling for an appropriate system of redress for disputed decisions. Many people do not really understand social care systems and why decisions are taken and they feel powerless, often at a time when they are facing enormous challenges and may fear that complaining is going to lead to even more negative changes to their support. It seems to be a matter of justice to have a very clear and understood route to redress and I hope these amendments will be considered seriously.

[Lord Mackay of Clashfern]

My Lords, I support these amendments requiring a system of adjudication able to deal with the whole raft of matters dealt with under the Care Bill, including the borderline with continuing healthcare. The local authorities—152 or something of that sort—will administer the care system. It is quite easy to see that the same problems may arise in different local authority areas. Having a respected system for dealing with these matters would simplify a good deal of this area. I therefore strongly urge the Government to have in place a system which would provide reasonably rapid adjudication of all these issues. The social security commissioners provide a kind of example. One possible solution would be to extend the jurisdiction of the social security commissioners to include this area. Social security arrangements are certainly different from the care arrangements, but there may be sufficient similarity to make that possible. Something along the lines of the social security commissioners would be necessary for dealing with this and bringing into effect a system which local authorities right across the country would respect when one local authority’s decision was dealt with by this adjudicating authority.

[Lord Hunt of Kings Heath]

My Lords, I have added my name to Amendment 76 of the noble Baroness, Lady Greengross. I also support Amendments 123 and 124. Leonard Cheshire Disability put it so well when it said that it was concerned that the Bill, in placing a number of important and complex duties on local authorities, will have a substantial impact on the lives of older and disabled people without providing appropriate routes for appeal against unjust or factually inaccurate decisions. It says that there is a compelling case for the Government to set up a system to resolve cases where there are disagreements between the local authority and the individual.

When we think of the various ways in which local authorities can impact on individuals who have come within the care system—support eligibility criteria, financial assessment, operation of the cap, charges, personal budgets and the boundary between NHS continuing care and means-tested social care—surely there have to be opportunities for a person to appeal against decisions of the local authority. In Committee, the noble Earl relied first on the current complaints system of local authorities and, secondly, he went on to point out that if a complainant was not satisfied with the response from the local authority, they were then able to refer the case to the Local Government Ombudsman.

However, a complaints system is not really what noble Lords are calling for. Anyone who has seen responses from local authorities to complaints will know that they tend to find in favour of themselves and rarely reopen a question of substance. Noble Lords want an opportunity for a person concerned to put their case and for that case to be considered by a group of people who may be said to be independent of the local authority. Like the noble and learned Lord, Lord Mackay, and my noble friend Lord Warner, I am keen on the tribunal approach which deals with social security cases; I have witnessed these cases. Although the noble Earl felt in Committee that these would be expensive, I believe that it is a cost-effective way of allowing people to put their case and for that matter to be decided. I am sure that in the long term it will be more expensive if there is no proper decision. I suspect that we will see lots of judicial reviews being initiated against local authorities. They do not and will not have a proper system for dealing with appeals.

The noble Earl said in Committee that the Government were consulting on processes for providing redress. Although he thought that the results of that review would be available before the Bill had concluded its passage through Parliament, I suspect that that will be too late for your Lordships’ consideration. I therefore hope that the noble Earl might be able to give us some comfort that he will in fact give further consideration to this. I hope that we might return to this point at Third Reading.

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[Earl Howe]

I may need to answer that question later. However, my understanding is that, yes, we can do it through secondary legislation. If I am wrong on that, I will correct myself before the end of today’s proceedings.

[Lord Mackay of Clashfern]

Again, before my noble friend finally sits down: he mentioned the principles that would seem applicable to local authority decision-making and appeals from that. I wonder whether one of the principles that should be given effect might be consistency across the country—in other words, fairness between people who live in X and people who live in Y. I suspect that there is a possibility that different local authorities will take different decisions in very similar cases, and consistency across the country would be an important element in the fairness of this new system.

[Earl Howe]

I take the point made by my noble and learned friend. We cannot iron out every kind of disparity, but we should aim for the kind of fairness that he talks about.

I have misled the House: we would not be able to establish a tribunal by secondary legislation—it would require primary legislation. However, as I said earlier, in the consultation that we are carrying out we do not rule out any solution. Clearly, if it transpires that we want to make changes for which primary legislation is needed, we would need to ensure that proposals were brought forward for consideration at the earliest opportunity. In general, we hope that the consultation will flush out any concerns in this area, not least in the area of fairness, as referred to by my noble and learned friend.