Care Bill [HL]
Baroness Wheeler Excerpts(10 years, 10 months ago)
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Baroness Wheeler (Lab)
My Lords, this large group of amendments reflects issues that we covered extensively in Committee. We largely support the amendments as they address the suitability of the extent to which friends and family should be acknowledged in the process of assessment of the needs of adults, carers and young carers for care and support.
The group includes amendments on young carers’ support and assessment needs in relation to the Care Bill and its interface with the Children and Families Bill, about which I spoke last week. I do not intend to go into this issue again, other than to stress our support and relief that young carers are recognised in a joined-up way in both Bills. In particular, we welcome the safeguard in this group of amendments, which ensures that local authorities are able to combine assessments relating to adults being assessed with assessments relating to young carers only with the consent of both. The new provisions also make it explicit that it will be possible to join up care plans with other types of care plan only with the consent of the relevant parties, and we welcome this too.
We were very concerned that as originally drafted, Clause 9, which sets out the assets-based approach to assessment, could have been misinterpreted and used to push greater responsibility for meeting needs from the local authority to carers, family and friends. It blurred the distinction between an assessment being about what the needs are and the ways of meeting them by looking at how needs are met by other ways through the provision of services before any decision about eligibility has been made.
Thankfully, the Government’s amendments addressing this problem are now more in accord with the Law Commission review of adult social care legislation, which made a clear distinction between consideration of care and support needs and how the needs should be met. On specialist assessments, we are pleased to see the amendments upholding the current practice and guidance, which provide for assessments to be undertaken by people with expertise. It is an issue on which the House expressed itself very strongly, especially the need for specialist assessors in the case of people with complex health or mental health needs. The noble Lord, Lord Low, and the noble Baroness, Lady Meacher, have set out these issues again today very clearly, and I look forward to the Minister’s response to their questions on the outstanding issues.
Finally, I support the intention of my noble friend Lord Dubs in Amendment 60 to ensure that the care and support plan provides contingency planning for an emergency, such as the carer suddenly being ill or unable to provide care. The self-directed assessment model does include discussion on contingency and risk but the extent to which clear provision is covered in the care and support plan is patchy. Indeed, it is not always easy to be specific about what would happen because often the reality is that instant emergency cover is hard to organise when relatives live a considerable distance away or the cared-for person is not able to summon up emergency help. My noble friend is right to reinforce the point about the need for emergency contingency planning, especially where people have fluctuating health conditions, such as MS, rheumatoid arthritis and HIV.
In Amendment 61, my noble friend also underlines the importance of including a review date in the plan. It would be very valuable to require social services departments and providers to be clearer about not just the review date for the plan but what the monitoring and review process is and what kind of client feedback or complaints process there would be, as well as client-carer involvement in assessing quality of care and standards of service. I suspect that very few care plans currently measure up to these requirements and I would be grateful if the Minister could tell me what requirements the Government will place on local authorities and commissioners in this respect.
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?
Baroness O'Loan (CB)
My Lords, I support my noble friend’s amendments, particularly because of their implication for human rights. Care and support for many older people and for disabled people underpin and enable the enjoyment of those rights. They make possible a decent life of dignity; they make possible the ability to enjoy family life, for example. Ensuring that people can continue to pursue the life that they have and that they want, with no lessening of support when they move, is crucial. I therefore warmly support my noble friend’s amendment on equivalence of outcomes. When considering the process for people moving from one local authority to another, we must consider particularly the right to freedom of movement for older and disabled people. I believe that my noble friend’s amendment on the process for ensuring no gap in services during a move guarantees such freedom on an equal basis with others.
Baroness Wheeler (Lab)
My Lords, these are mostly technical amendments, which we support. We are especially pleased that the concerns and proposed improvements to the portability process put forward by the noble Baroness, Lady Campbell, are addressed in the amendments in this group. We need to do as much as possible to reduce the likelihood of the person not having services on the day of the move to the new authority.
Continuity of care is critical to portability, and the requirement placed on the first authority to keep in touch with the second in the period leading up to the move to ensure that services are in place and ready, and that the person is kept informed and up to date, is very important for a safe and risk-free move. They are also required actively to ensure continuity of care until the new assessment is in place. That is absolutely right, as is the second authority being required to have regard to the outcomes that the person wishes to achieve in the care and support plan that they had before the transfer.
I congratulate the noble Baroness on having finally achieved most of what she set out to in her own Private Member’s Bill. As she said earlier, workable continuity of care is within sight. Her tenacity and determination will mean that many people will now be able to make the move to different parts of the country, to be closer to their families or to care and support that they have not previously been able even to contemplate.
We support the government amendments dealing with cross-border issues with Wales. They follow extensive discussion and agreement with the Welsh Government. The Minister’s detailed correspondence to noble Lords explaining the purpose of the amendments in relation to such key issues as arbitration on cross-border disputes, responsibility for mental health aftercare and sorting out direct payments for this care and residential care to reflect recent change of practice in England was very helpful to the House in getting the full picture of the proposed changes.
In respect of the amendments on ordinary residence, NHS accommodation placements, cross-border hospital stays and the need to ensure that the Care Bill provides for accommodation provided under the Welsh, Scottish and Northern Ireland legislation, the Minister’s note of last week emphasises that all changes have been agreed with each of the devolved Administrations, and obviously that is as it should be. Are the provisions for four-way reciprocity on cross-border placement in England, Wales, Scotland and Northern Ireland now fully in place with these amendments to the Bill, or does more work need to be undertaken as the detail is worked through further?
Specifically on government Amendment 64, I understand that the LGA and ADASS are looking to model the impact of a person’s place of residence on the cost pressures within the social care system. To assist this work, which will be very valuable to the whole House, will the Government now publish the information that they have on the impact of cost pressures on extending the territorial reach of the Bill into Wales?
Baroness Wheeler
My Lords, in addressing these amendments I once again emphasise that we very much welcome the placing of safeguarding on a statutory footing in the Bill, and the establishing of statutory safeguarding adults boards. This builds on the legislation, regulations and advice on principles and frameworks for safeguarding for both adults and children that we established up to 2009, which are now being taken forward in the Bill.
The noble Baroness, Lady Greengross, and other noble Lords, again made a comprehensive case for granting the power of access by a third party to private premises if they suspect that a vulnerable adult is being abused. The noble Lord, Lord Rix, spoke of “mate” relationships among people with learning difficulties. It was a powerful example of what we need to address.
We know that there is both strong support and strong opposition among local authorities, NHS trusts, the health and social care professions, and patients and user organisations on this sensitive and complex issue. However, we have to remember that the Government's consultation had a relatively low response, particularly in terms of local council and NHS trust participation. On top of that, many of the consultation responses appeared not to have fully understood the limited nature of the change that was being proposed: namely, that the new power would apply only to situations where it is the third party who is denying access, not the individual.
The noble Baroness’s amendment sets out tough limitations and restrictions that would apply to such a power. Local authorities would have to apply to the courts and demonstrate reasonable cause for suspecting that someone was in danger of abuse. The power of access would be to enable the local authority to access the person and speak to them alone to assess the situation. It is clear that it is intended as a last-resort power to address third-party denial of access to a vulnerable adult, for use after all other efforts and mechanisms have failed.
Getting the balance right between proactively intervening in the lives of individuals in this way and limiting the extent to which this interferes with their rights to freedom and family life is the challenge that we face. Certainly there is widespread acceptance that the existing powers to intervene under government legislation are not being fully utilised and are not addressing the issues, and that the training of specialist staff needs urgently to address this. Will the Minister explain to the House how the Government intend to deal with this?
As we said in Committee, on balance we support the case for inclusion in the Bill of the power of access by a social worker or the police where there is a danger of third-party abuse. Our work on safeguarding when we were in government, especially in relation to children, makes us sympathetic to the approach in the amendment of the noble Baroness, Lady Greengross. We recognise that safety should be paramount in this instance. However, we recognise the strong concerns of Mind on this issue, and of the Royal College of General Practitioners, which would prefer to use other powers, such as working with the sector to co-produce best-practice guidelines. Will the Minister explain how the Government propose that denial of access by a third party to a potentially vulnerable adult will be addressed if the issue is not dealt with in the Bill?
I support the intention of Amendment 79A, tabled by the noble Lord, Lord Rix, to include in the Bill a definition of abuse that reflects other types of abuse besides the financial abuse currently included in the Bill. The noble Lord has the very real concern that this would encourage hard-pressed local authorities to narrow their focus to financial abuse alone. The Confidential Inquiry into Premature Deaths of People with Learning Disabilities published its findings in March 2013. It looked at the deaths of 233 adults and 14 children with a learning disability in the south-west and found that 20% of the people concerned had experienced safeguarding concerns. While some of these may have been due to financial abuse, it is more likely that they concerned other forms of abuse: in particular, neglect. The study showed that 37% of deaths would have been potentially avoidable if good-quality healthcare had been provided. Neglect is undoubtedly one of the reasons, and thus the definition in the Bill should be broadened. I ask the Minister to look again at this and come back with a more balanced clause reflecting other types of neglect and abuse. It is important, for example, that hospital safeguarding leads should be clear that the definition is broad, and should take appropriate action.
The noble Lord’s Amendment 81A would also be a welcome alteration to the Bill. It is a small but important matter, because sending SAB annual reports to the Secretary of State will ensure that safeguarding is given the high level of oversight needed, particularly over areas that might be failing.
We also support the amendments to Schedule 2 contained in Amendment 81 from the Government, and Amendments 80 and 82 from the noble Baroness, Lady Greengross. The SABs would benefit from professional social worker representation, as would safeguarding adult review teams from having a qualified social worker supervising the review.
The two final amendments of the noble Baroness, Lady Greengross—Amendments 78 and 79—raise the important issue of establishing a new duty of care on a local authority or its relevant partner to report to the authority if they suspect that there is a failure of care, and to set out the terms of conviction for any person guilty of neglecting or ill treating an adult at risk of abuse. We share some of the concerns of the LGA, for example, on these amendments: namely, that there would need to be clarification of exactly what the care quality, professional practice and safeguarding concerns would be under the new duty, and how the duty would relate to other partners involved in service delivery. We also share concerns that while the criminal conviction provision may present the way forward in cases of neglect, it might unintentionally create a lower order of offence and tariff for older and disabled victims of crime.
Finally, I underline the vital need, when so much care now is contracted out and provided by the independent, private and voluntary sectors, to ensure that safeguarding is built into procurement and contract management in health and social care. Will the Minister tell the House how the Government intend to ensure that this will happen?
Earl Howe
My Lords, for the first time the Government will, through this Bill, place adult safeguarding in primary legislation. Local authorities, the NHS and police will have statutory duties to work together to help prevent and respond to abuse and neglect. This sends a clear message that safeguarding is not the sole responsibility of one agency but requires the very best of partnership working and information sharing. Amendment 77, which would introduce a power of access to a person for a confidential interview, runs counter to that message. Having said that, I am well aware of the strength of feeling in relation to this matter, both inside your Lordships’ House and elsewhere. Whether there ought to be a power of access or entry is a sensitive question. That is precisely why the Government launched a three-month consultation in 2012 to gauge the opinions of professionals and the public. The consultation revealed no clear consensus. Of 212 respondents, 50% backed a new power, with 40% opposed. However, among individuals, 77% disapproved. The majority of respondents in favour of a new power of access were health and care professionals, yet it was very noticeable that their responses revealed the painstaking weighing of potential benefits against unforeseen consequences.
The mental health charity Mind said:
“A power of entry risks being seen as a quick solution, in place of greater focus on community engagement, co-operation and a preventative approach that can be truly empowering to the people involved”.
This was a theme found in many responses. I stumble over the consequences of what the noble Baroness seeks to do. Here I respectfully but fundamentally disagree with my noble friend Lady Barker who said that there was no real comparison with the situation in mental health. A power such as this might well ensure access but the central issue will remain—how will the professionals then work with the situation to achieve the best outcomes? Trust will have been compromised and, short of a power of removal, which we certainly would not want to see, the options for action seem pretty limited.
Our consultation revealed no compelling evidence for further legislation. Even those respondents in favour pointed to how rarely a new power might be applied and identified potential unforeseen consequences. Proposed new Subsection 4(c) of the amendment states that an access order should be granted only if doing so,
“will not result in the person being at greater risk of abuse or neglect”.
I have to ask how a court could ever reliably make such a judgment in these circumstances.
The other key point which I would like to believe may sway the House is the following. There exists no legislative vacuum preventing care or other professionals accessing those in urgent need of assistance. Under the Police and Criminal Evidence Act 1984, the police have the power to enter premises if harm has occurred or, indeed, is likely to occur. The Domestic Violence, Crime and Victims Act 2004, the Fraud Act 2006 and, for those lacking capacity to make decisions, the Mental Capacity Act 2005, provide a wealth of powers for use at the front line, and the inherent jurisdiction of the courts to intervene provides a secure safety net. Therefore, it is not the lack of legislation; rather, as safeguarding lead directors at ADASS have put it, it is a question of a “lack of legal literacy” within the social care and other professions. What is needed is greater knowledge of existing legislative options. If they have that, professionals will be fully equipped to support people to be safe. The core role of an adult social worker is to support people. Further legislation for a new power of access risks undermining this approach, sending the message that legal intervention takes primacy over negotiations and consensus. I stress that legal intervention, on those rare occasions when it is needed, is already possible under the law. For those reasons, I cannot accept this amendment.
Care Bill [HL]
Baroness Wheeler Excerpts(10 years, 10 months ago)
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Baroness Wheeler (Lab)
My Lords, I am pleased to speak to our Amendments 7 and 10 and will speak mainly about young carers, as my noble friend Lady Pitkeathley has spoken strongly on parent carers for disabled children and the other key issues covered in this group. In Committee, we were deeply concerned at the very real danger and risk of young carers’ rights and their need for support failing to be addressed in either the Bill or the Children and Families Bill, so it is with great relief that we will be dealing today, now and later, with significant amendments relating to adult care assessments and young carers, local authorities’ duties to identify young carers and ensuring young carers are supported and are not forced to undertake inappropriate caring roles.
On young carers, it is somewhat frustrating that the Government amendments, which are an integral part of the package on young carers that locks in the links between the Bill and the Children and Families Bill, are to be taken in a later group. We need to see the picture on young carers as a whole to be reassured and clear about how the two Bills interact to secure young carers’ rights on support and assessment. Under the two Bills, the Care Bill links adult assessment where a young carer is supporting an adult with the young carer’s assessment, which will be undertaken under the Children and Families Bill. The ministerial Statement on the latter from the Department for Education sets out how it sees this working in practice, and we broadly support this. Our Front-Bench team on the Bill will be probing this further in Committee, which, of course, commences today.
We welcome all these developments. We have worked closely with the excellent National Young Carers Coalition and it has led calls for key changes in the two Bills. I am sure the Minister will agree that the NYCC has done a great job of bringing the plight of young carers to the attention of the House and to Ministers. I am pleased that the Government have now taken steps to ensure a twin-track, joined-up approach between the two Bills.
As the Bill has progressed, we have heard extensively why children and young people caring for a family member, parent or sibling can be so vulnerable to losing out on their education and on the things that they want to do with their lives and how their health can suffer as a result of having to undertake significant caring responsibilities. However, it is a shocking fact that too often young carers do not get the help they need. One of the reasons for this is that, under the current assessment process, the person they are caring for does not receive enough support and the needs of the whole family are often not taken into consideration.
We must remember that this can have a devastating impact on both the young carers and the cared-for person. As a trustee of our local carer support group in Elmbridge, I can say that we see this from both ends. Many of our registered young carers are delivering hands-on support and may be the only other person in the house. For example, if their parent has mental health problems—very often the most hidden of caring roles—the child may have to look after themselves on a daily basis, make their own meals and get off to school, as well as being supportive of the parent and carrying out tasks for them. At the same time, a disabled parent does not want to see their child overburdened with caring duties; they feel desperate and guilty when they require care and support that is not forthcoming as part of the care package, and the child just has to help—and usually wants to anyway. That is a dilemma.
That is why we sought to amend the Bill in Committee so that adults with care and support needs are assessed in relation to the presence of a young carer, so adult needs are met sufficiently and children are prevented from undertaking levels of caring that put their well-being, health and development at risk. The government amendments now put this into effect in the Bill and we fully endorse them as part of the package of changes that are needed.
That is also why our Amendment 7 to Clause 2 must be an important part of the package. We believe that the Care Bill is the right place for the law to be clear that adult services need to assess and meet adult needs first, but with a view to whether a child may be caring for them and providing the support as required. Children should not be picking up the pieces and left to provide part of the care package as a result of the failure of adult services to see and support them alongside children’s services.
Our essential aim has been to ensure that local authorities provide or arrange services to prevent young carers from developing needs for care and support, as well as preventing and reducing needs for adults and adult carers. We cannot have a situation where people have unmet care and support needs, which results in children and young people having to meet those needs.
Our Amendment 10 specifically deals with the issue of local authorities’ duty to identify young carers. We know that currently, adult social care services and health services routinely fail to identify children who may be caring for an adult, even when the adult is assessed, and that also applies to schools. As a result, children can continue to undertake harmful caring roles and end up developing needs for care and support themselves. The lack of a co-ordinated response between children’s and adult services remains an ongoing difficulty for young carers and their families. I hope that the noble Earl will recognise the need to address this problem.
On the other amendments in the group, we strongly support the intentions of Amendments 6, 8 and 9, which seek to emphasise parent carers of disabled children, both in respect of the well-being principle and in terms of preventing them undertaking inappropriate caring. Amendments 46, 47 and 58, in the name of my noble friend Lady Pitkeathley, seek to address the very real fears of carers and their organisations over carers being charged for key services that they are not currently charged for. My noble friend’s amendments represent an excellent opportunity to put carers’ minds at rest on this issue once and for all, and I hope that the Government will be sympathetic to this.
Finally, my noble friend’s Amendment 48 addresses the important issue of carers generally—not just young carers—being required to undertake inappropriate caring. We dealt with this issue in relation to the assessment process extensively in Committee and we strongly support this amendment. Support from family and carers should be considered as a way of meeting needs rather than as a reason for deciding that the person does not have needs or is not eligible for care. Carers must not be pressurised to provide care that they do not feel able to provide. I look forward to the Minister’s response on this.
Baroness Tyler of Enfield
My Lords, I rise very briefly to speak to Amendment 34 in my name. The purpose of this amendment relates to the definition of a carer, to ensure that it could include a young person as well as an adult. I wish to explain that I tabled the amendment before the extremely welcome Statement by the Secretary of State for Education earlier in the week, and the tabling of the new amendments on young carers. As other noble Lords said today in the Chamber, I very strongly welcome this. I know, from talking to both departments—the Department for Education and the Department of Health—that a lot of very effective work has gone on over the summer that has been very effective both at official and ministerial levels. I also very much welcome the fact that the National Young Carers Coalition has been very much involved in these changes, and I know that it has issued a statement welcoming them.
Care Bill [HL]
Baroness Wheeler Excerpts(11 years ago)
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Baroness Barker
My Lords, I thank the noble Lord, Lord Patel of Bradford, for introducing this extremely important issue, which this House has addressed on a number of occasions, including during the passage of the Mental Health Bill, when the noble Earl and I were in opposition and argued very strongly for the retention of Section 117. It also came up during the Health and Social Care Bill.
I do not want to go into any detail because the noble Lord has done that excellently and there is no need for much more to be said. I would simply say that Section 117, which has been around for about the past 30 years, is the one piece of legislation that enables health and social care to work effectively together to deal with the needs of a very vulnerable group of people. It seems very odd, when the whole thrust of the rest of the Bill is aimed at integrating health and social care, that the one piece of legislation where that actually works is constantly coming under attack. People’s mental health deteriorates for reasons to do with their social circumstances as much as their mental condition. The noble Lord is right yet again to defend this piece of legislation and I support his amendment.
Baroness Wheeler
My Lords, my noble friend is right to express his frustration and dismay that, once again, we are faced with government proposals which would change the statutory provision of free aftercare services for people leaving hospital who have been treated under the Mental Health Act 1983 and people subject to community treatment orders—Section 117 services.
As we know, the Government have promised to address concerns about changes made to Section 117 in the code of practice guidance under the Act, but my noble friend has shown clearly today why the Bill’s current wording under Clause 68(5) needs to be changed. As it is drafted, it would have very serious consequences and cause complete confusion over the responsibility for provision of aftercare services for mentally ill people, which we all thought had been addressed and resolved last year under the finally agreed provisions of the Health and Social Care Act.
The current statutory definition of aftercare services in the Bill is confusing because it separates out the needs arising due to the mental disorder from the need to reduce the risk of deterioration in the person’s condition and the risk of readmission to hospital. Amendment 105 to Clause 68 instead defines aftercare services as those services designed to reduce the likelihood of a person requiring readmission for the same mental disorder. It is right that the definition of aftercare services focuses on reducing readmission to hospital and does not lead to confusion or legal disputes about a local authority’s role in this or about what services should be provided under Section 117.
Recent surveys by the mental health charity Mind have shown, generally, that many people with mental health problems are never properly assessed to see if they need social care—such as somebody to help with admin or household tasks, washing, dressing or something meaningful to do with the day. At least under the current legislation, people with mental health problems who have been treated under the Mental Health Act are entitled to receive free aftercare services when they leave hospital, and we must take care to safeguard that entitlement.
We on these Benches strongly support my noble friend’s amendment to ensure that that entitlement is carried through into the Care Bill. My noble friend has both the expertise and the dogged determination to pursue his case, and I hope that the Minister has some very good news for him today that addresses his rightful concerns.
Lord Ramsbotham
My Lords, I support the noble Lord, Lord Patel, on Amendments 105AA and 105CA, and will comment on government Amendments 105B to 105D. I do so as a former Chief Inspector of Prisons who was closely involved with safeguarding inspections of children, which we were able to carry out thanks to there being a social care inspectorate in position at the time. The inspections were joint in that they covered a number of inspectorates, not just the Commission for Social Care Inspection. At the same time, I was conducting a thematic review of the treatment of the elderly in prison, who were causing intense concern. Unfortunately, at that time the social services that were responsible for the elderly in the country did not function in prisons. I had hoped for the adoption of what I understand the Government now intend to do: to make the social services responsible for the oversight of the elderly in prisons. In speaking to these amendments, I am conscious that the Government are almost there, but not quite.
I wonder, too, whether the Ministry of Justice actually consults with other ministries about Bills that affect prisoners. We are about to start the Committee stage of the Children and Families Bill. We have to try to remove a clause that prevents young offenders being subject to the pathways for those with special educational needs. Prisons are allegedly to be excluded. Only last Wednesday, the noble Lord, Lord Dubs, raised a question about jobseeker’s allowance and prisoners not having access to benefits in time. I wonder whether the clause not applying to prisoners was discussed or whether the Ministry of Justice has come to a view on something that will affect an increasing number of people in the prisons: the elderly.
There is an extreme need for local social services to be involved in prisons by statute and by right. With due respect to the Ministry of Justice and the Prison Service, when I listen to the Minister saying that “it will be left to the prisons” and that it “should” be statutory, or that they “can” invite members of safeguarding adults boards into prisons, I do not think that that is good enough. The track record, if you go into prisons over the years, is that it is not good enough.
The other thing is that people are simply not trained enough to be able to conduct the care that is so essential for the elderly element of the prison population. There are many concerns over the fact that too many staff have simply no idea about problems to do with dementia, which is but one of the issues. To phrase this provision loosely and say that somebody from a prison “may” be a member of the board is not good enough. It really should be laid down in statute that somebody must be a member. If it is not the governor, it must be someone from the senior prison management team. The other reason it must be a member of the senior management team is that people change. There is such movement in the staff of a prison that if you are not careful, you will not have somebody who knows what they are doing and knows the people in the local authority to contact if there is a problem with somebody who needs care. It is important to have it statutorily laid down not just for somebody to be responsible within the prison, but so that those who are responsible for delivering support and care know precisely who to make contact with. It is no good leaving it nebulous by just going to the prison and finding somebody. If you do that, you will find that the “somebody” is not there. I believe very firmly that someone should be made responsible and accountable for this.
I welcome the fact that prison officers and prison custody officers may be members of the boards, and mention has been made of the work done by HM Inspectorate of Prisons. That is fine, but only goes half way. I hope that the Care Quality Commission will conduct inspections of the safeguarding of adults in prison. The commission would use the other inspectorates, which will have something to contribute to that. As was done with the safeguarding of children inspections, they would be joint and not merely limited to one part. I very much hope that the Government will carefully reconsider these amendments, perhaps in consultation with the Ministry of Justice—which, I would hope, would have objected to these two clauses anyway.
Baroness Wheeler
My Lords, this is largely a group of government technical amendments, interspersed with amendments from noble Lords probing important aspects. On Clause 69, my noble friend Lord Patel’s Amendments 105AA and 105CA would ensure that local authority safeguarding inquiries do apply to adults in bail accommodation and, in respect of Safeguarding Adults Boards, would enable prison governors or other prison staff to be members of the board.
Government Amendments 105B and 105D address those issues. On safeguarding inquiries, the Government’s proposal to allow SABs to provide advice and assistance to persons in bail accommodation is a compromise. My noble friend has argued that that is not good enough and we strongly support that view. How can local authorities have premises in their areas where abuse or neglect could occur and not have a duty to conduct a safeguarding inquiry?
On prison governors being members of Safeguarding Adults Boards, my noble friend is exploring ways in which governors and prison staff can best participate in and learn about the board’s role and work. I look forward to the Minister’s response on how she thinks the Government’s amendments best facilitate this.
The remaining Clause 69 government amendments include a number of tidying-up measures which we support to reduce the burden on local authorities, such as clarifying local authority ordinary residence rules in relation to bail accommodation, explicitly exempting prisons and bail accommodation from local authority safeguarding adults reviews, and minor technical amendments to change the general language relating to the clause.
Under Clause 71 and Amendment 105Q from the noble Baroness, Lady Browning, we return again to the Secretary of State’s powers in relation to local authorities and NHS bodies. Both the noble Baroness and my noble friend Lord Touhig make a strong case for statutory guidance previously in place to continue to apply under the new legislation until the Secretary of State declares otherwise. The noble Lord and noble Baroness, as usual, speak strongly on autism and the Autism Act being embedded in the new legislation. However, there is a wider issue of ensuring that the Secretary of State retains ultimate responsibility, arguably more important than ever with the tendency of our current Secretary of State to hover above it all and act as if everybody else is responsible but him.
Amendment 105R of the noble Lord, Lord Low, to Clause 72 seeks to prevent a local authority from being able to delegate functions on its behalf under this part of the Bill. He is right to be cautious about how the local authority powers under this clause are used. I look forward to the Minister’s response to the amendment.
Finally, under government Amendment 105V in this group, I again raise an issue that I spoke of during last week’s safeguarding debate on the provider failure provisions under Clauses 47 to 49, designed to address responsibilities and actions in any future provider collapse, such as we saw most recently with Southern Cross residential care homes. The Lords Delegated Powers Committee expressed concern at the Bill’s failure to define what is meant by both “business failure” and “market failure”. Although I got an answer in passing in the following debate when the noble Earl the Minister responded to a question about provider failure from the noble and learned Lord, Lord Mackay, I would appreciate the Minister explaining today in more detail why the Government have chosen regulations to address these two issues, which are fundamental to the operation of the provider failure provisions of the Bill, rather than include the definitions in the Bill.
Baroness Northover
My Lords, I thank noble Lords for tabling the other amendments in this group on these very important issues. On the amendment in the name of the noble Lord, Lord Patel of Bradford, we agree that a person with care and support needs should be protected against abuse or neglect wherever they are. As I have already set out, prison governors and directors have in place procedures to follow in response to allegations of abuse or neglect. Governors and directors will provide assurance to the National Offender Management Service and Her Majesty’s Chief Inspector of Prisons, through their inspection regimes, that those procedures and their implementation provide similar protection to that available in the community. The Prisons and Probation Ombudsman will investigate individual complaints and incidents. I can assure the noble Lord, Lord Ramsbotham, that the Ministry of Justice and the NOMS have acknowledged that there is a need for improved directions to the Prison Service and probation trusts in this area. They will be working with officials from the Department of Health and stakeholders to develop instructions and guidance that will give clarity about the roles and responsibilities of the Prison Service and probation trusts in safeguarding adults in their care. In addition, prison governors and other prison staff will be able to approach their local Safeguarding Adults Board for advice and assistance in improving their arrangements. The MoJ was, of course, fully consulted on the provisions relating to prisons in the Bill and will be working with the Department of Health and NOMS to develop detailed guidance so that people who are concerned about the safeguarding issue will know exactly how to raise it and get advice on how to approach it. The MoJ is fully involved in the development of all parts of this clause.
The noble Lord, Lord Ramsbotham, also raised the issue of a statutory obligation on the senior management of prisons to take responsibility for the care and support needs of prisoners. The governor or, in the case of contracted prisons, the director, has the primary duty of care for prisoners and is the appropriate first point for reporting concerns. There is an investigations procedure in place for cases in which prisoners suffer significant harm. Prisons are monitored by a range of inspectorates, including the CQC.
Baroness Emerton
My Lords, I support the amendment proposed by the noble Lord, Lord Warner, and agree with what all the other speakers have said. I remind noble Lords that when care pathways were introduced by the previous Government end-of-life care was not a pathway. The noble Lord, Lord Darzi, listened to a group of hospice workers. They said that they very rarely saw a death in a surgical ward and that they believed that we should look at a care pathway for end of life. What has been said today indicates that we need to concentrate on bringing together health and social care, bringing together social workers and health staff and, above all, seeking the choice of patients. As has already been said, most patients wish to live in their own surroundings and the end-of-life care pathway would take care of not only the person whose life is ending but also the relatives and family around them. I suggest that we think about how we progress the care pathway for end of life.
Baroness Wheeler
My Lords, we on these Benches are grateful to my noble friend Lord Warner and the noble Lord, Lord Patel, for bringing forward these amendments which ensure that end-of-life care is discussed in the context of the Bill. The Government have confirmed to the Joint Committee that primary legislation is not required for the introduction of the proposed new palliative care funding system or free end-of-life care once the Bill is passed. It is right to seek up to date information on the progress of the end-of-life care pilots and the proposed timescale for the publication of the regulations and consultation, if the April 2015 deadline for any new systems is to be met.
The amendment of the noble Lord, Lord Patel, endorses the Joint Committee recommendation that assessment of the need for the care and support of an adult who is terminally ill should be treated as urgent by the local authority. We fully support that. As Marie Curie Cancer support says, people get stuck in hospital at the end of life because the system cannot move quickly enough to get a care package for alternative care in place. It is established good practice in some authorities to fast track assessment of people not covered by NHS continuing care. It is a very fundamental requirement for people who are terminally ill and should be a duty reinforced in the Bill.
There is also a strong argument for joining up access to social care and support with the DS1500 system for quick accessing of welfare benefits such as DLA, although it is recognised that some of the degenerative diseases such as motor neurone disease may not be easily dealt with in this way. Will the Minister advise the House of the Government’s view on this, and what work is being undertaken to ensure that benefits and the care and support system work in a more integrated way for terminally ill patients? It is now six years on from the introduction of the 2008 End of Life Care Strategy to help people have the end-of-life care and support they need, in the words of the Nuffield Trust,
“beyond the gates of the acute hospital setting”.
The strategy has made a vital contribution to increasing the profile within the NHS and social care of end-of-life care through such excellent programmes as the NHS End of Life Care, the Marie Curie Delivering Choice Programme and the 2009 Dying Matters campaign to tackle the taboo on discussing death and dying. However, as my noble friend has shown, progress on providing real choice for people to die in the place they want to, whether that is in their home, at a hospice, nursing home or in hospital, if that is where they can receive the best palliative and nursing care appropriate for their condition or personal circumstances, has been frustrating and disappointing.
The current main focus of palliative and end-of-life care is still on cancer patients and hospices, but even then, Macmillan Cancer Support research shows that 91% of cancer patients in England who die in hospital wanted to die elsewhere, with 65% wanting to die in their own homes. Only 29% of people with cancer are able to be at home when they die. The amendment of my noble friend Lord Warner seeks to specify in the Bill that regulations may include the right for an NHS patient to die in the place they regard as home or their normal residence. As he readily acknowledges, this can be achieved only if end-of-life care is integrated across the NHS, local councils and hospices, and if it is properly funded. His case for an integrated service for free end-of-life care for terminally ill people who are likely to die within six months is a convincing one.
Macmillan’s research among health and social care professionals shows that 97% identify the lack of financial integration between the services as a key barrier to people receiving the care they need at the end of life. As the noble Baroness, Lady Jolly, reminded us, the Nuffield’s and other research projects point strongly to the cost-effectiveness and potential savings that could be achieved with greater access to social care and reduced hospital admissions at the end of life. The Nuffield research also found that the use of social care currently varies between local authorities and health conditions—for example, people with dementia, falls and stroke use considerably more social care in community settings than those with cancer, probably because that is where they are already being cared for before terminal illness has been diagnosed. Individuals with the highest social care costs tend to have lower average hospital costs.
We fully recognise how crucial the seven adult palliative care funding pilots are to mapping and understanding current patterns and resource use across health and social care at end of life, and to collecting the vital data from which the costs of an integrated end-of-life care system can be properly assessed. These data span across care provided by the NHS, voluntary and private sector in both acute and community settings. The final data analysis report for the adult pilots and the consortium pilot for children’s palliative care services is due in June 2014, and the Government are committed to introduce a new per patient funding system for palliative care by April 2015. Can the Minister update the House on the progress being made under the pilots, the emerging key themes and whether the timescale has been impacted by the recent transfer of responsibility to NHS England? I understand that there is a problem with progress and that the pilots have only recently been provided with guidance on social care data collection—for example, as regards where data are underdeveloped and will probably take longest to collect. Is the Minister confident that the timescale for pilot reports, evaluation, policy decision and consultation can be met in time for implementation and that the Government will make a decision on free end-of-life care by the end of this Parliament?
Finally, two further issues need to be added to the debate. First, my noble friend Lady Pitkeathley reminded us of the recent Carers UK Carers Week survey which shows that much more support is needed for carers to help them plan for the end-of-life care of the person for whom they are caring. Many do not know how to plan for the death of a loved one and how to look ahead to life when caring ends in terms of returning to or taking up work, making social contacts and managing financially. My noble friend was right to underline how crucial it is to get this support right.
Secondly, it is as well to remember the findings of last month’s report from Public Health England and Marie Curie Cancer Care on palliative and end-of-life care for black, Asian and minority groups in the UK. It is a timely reminder that, with black, Asian and BME groups aged 65 and over set to treble in the next 25 years, there is urgent need to address the reasons for their low levels of use of palliative and end-of-life care services. The report identifies major problems, including lack of knowledge about services, misunderstandings, mistrust and lack of cultural sensitivity on the part of service providers. How are the Government addressing this issue and including it in their work to assess future service needs and funding? Are the pilots collecting data on these vital issues?
Care Bill [HL]
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Baroness Hollins
My Lords, I shall speak briefly in support of my noble friend’s Amendment 92ZFC because it applies to people with learning disabilities—particularly people with mild or moderate learning disabilities who may not meet the eligibility criteria for care and support in a situation where someone has befriended a person with a learning disability, moved in with them and concerns have been raised by neighbours that the person may be being abused. This is not about family carers; it is a mate crime. It is the sort of crime of which Steven Hoskin was a victim. He was subsequently murdered. Somebody moves in, and the local authority is unable to speak to the adult with a learning disability to check whether they are okay because the other person always answers the door and will not let anybody in. This power of access would change that, and I support my noble friend.
Baroness Wheeler
My Lords, when the Committee considered the Clause 2 duty on preventing needs for care and support, the noble Lord, Lord Rix—who I am sorry cannot be in his place today—put forward a strong case for ensuring that safeguarding is explicit in the Bill alongside the other duties of prevention relating to adults and carers. We gave strong support to that. The focus on safeguarding vulnerable adults should not just be on protection once abuse or neglect has taken place. Local authorities, and agencies on their behalf, should also be obliged and guided proactively to prevent abuse occurring in the first place.
We welcome placing safeguarding on a statutory footing in the Bill and the establishment of statutory safeguarding adults boards. This builds on legislation, regulations and advice on principles and frameworks for safeguarding adults and children that Labour established up to 2009 and which the Government are taking forward in the Bill. We were, however, always cautious about bringing adult and children’s safeguarding together under one structure as some councils have done. Adult and children’s safeguarding issues are not the same, and I would be grateful if the Minister will comment on the Government’s approach to this in future.
The amendments tabled by the noble Lord, Lord Rix, and the noble Baroness, Lady Hollins, include important issues which we support to ensure that safeguarding is properly identified, reported and investigated in all health and social care settings, not just social care, which is particularly important in the light of the appalling neglect and abuse that happened to people with learning difficulties at Winterbourne View. In this vein, the intention behind Amendment 92ZF to place a duty on providers or other relevant partners of the local authority to report when they suspect an adult is at risk of experiencing abuse or neglect is also important, as local authorities will not be able to identify all situations where people are at risk.
We also support the need to ensure that an adult has access to support and advocacy during a safeguarding investigation; the need to specify in the Bill areas of abuse, as set out in the No Secrets guidance, in addition to the reference to financial abuse; and the need for abuse to be recognised as abuse whether it is perpetrated as the result of deliberate intent, negligence or ignorance. These are all strong areas of concern expressed by noble Lords today and by key stakeholders. I also underline the vital need, when so much care is now contracted out and provided by the independent, private and voluntary sectors, to ensure that safeguarding is built into procurement and contract management in health and social care. Will the Minister inform the Committee how the Government intend to ensure this happens?
Amendment 92ZFC, tabled by the noble Baroness, Lady Greengross, puts forward a comprehensive case for the power of access by a third party to private premises if they suspect that a vulnerable adult is being abused. As the Government’s recent consultation response on this issue shows, there is both strong support and strong opposition among local authorities, NHS trusts, the health and social care professions and patients and user organisations on this sensitive and complex issue, although we have to remember that the consultation response was relatively low in terms of local authority and NHS trust participation and that many of the responses appeared not to have fully understood the proposed limitation of the power to situations where the third party is denying access, not the individual.
It is clear that there is a significant gap in the current legislation for dealing with third-party denial of access to some of the most vulnerable adults—women subject to abuse by violent partners or a person with a learning disability being bullied by a friend who has moved into their home—which the Bill needs to take the opportunity to address. The noble Baroness’s amendment is strongly supported by, among others, the Equality and Human Rights Commission, the College of Social Work, Mencap and Age UK, and sets out a tight framework and the limitations and restrictions that would apply. Local authorities would have to apply to the courts and demonstrate reasonable cause for suspecting that someone is in danger of abuse. The Equality and Human Rights Commission argues, as have noble Lords, that alongside the proposed duty of local authorities to make inquiries set out in Amendment 92ZFD, the power of access will enable more intervention in response to allegations or suspicions of abuse or neglect and get the balance right, as the noble Baroness, Lady Barker, said. The critical point of the power of access is to enable the local authority to access the person and speak to them alone to assess the situation. It is not about entering someone’s house for no good reason. It is a last-resort power and is by no means presented as a solution in itself.
On balance, we support the case for inclusion in the Bill of the power of access by a social worker and the police where there is a danger of third-party abuse. Our work on safeguarding when we were in government, especially in relation to children, makes us sympathetic to the approach in the amendment tabled by the noble Baroness, Lady Greengross. However, we of course recognise the strong concerns of Mind on this issue and of the Royal College of General Practitioners, which would prefer the use of other options, such as working with the sector to coproduce best-practice guidelines. Will the Minister explain to the Committee how the Government propose to address that denial of access by a third party to a potentially vulnerable adult without dealing with this issue in the Bill?
The issues raised by the noble Lord, Lord Low, in his Amendment 92AA on the need to clarify the application of the Human Rights Act to regulated care services are familiar to the House, as we thoroughly debated and aired similar grounds during the passage of the Health and Social Care Act. There are now concerns that amendments to that Act and the National Assistance Act in the Care Bill have set the clock back on the application of the HRA to private and voluntary sector residential care home providers. The noble Lord, Lord Low, has set out these concerns clearly, this time powerfully supported by the noble Lord, Lord Pannick. I hope that the Minister will respond positively to the pleas from noble Lords to think again on this matter.
Care Bill [HL]
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Baroness Wilkins
My Lords, I strongly support this group of amendments. The consolidation of the care and support legislation into one Bill is very welcome but not if it lessens existing essential provision. As both noble Lords have clearly described, the initial assessment of someone’s needs is critical and must be carried out by someone who is appropriately qualified and understands the impact of the impairment and the types of support that are needed. As we have heard, the Bill does not provide the same requirement as the current statutory guidance. I therefore hope that the noble Earl will recognise the critical importance of specialist assessment for people in these groups and allay the concerns of organisations such as Sense and the RNIB.
Baroness Wheeler
My Lords, I do not have a great deal further to add on this issue, given that we fully supported this approach in the earlier debate on our amendment. The noble Lord, Lord Low, and my noble friend Lord Touhig have made their case powerfully for the need for specialist expertise in assessing people with complex care and support needs—for example, deafblind people, people with autism and those with profound and multiple learning difficulties.
As the noble Lord, Lord Low, pointed out, the draft Bill originally provided for the regulations to specify the circumstances in which a person with expertise in a specialised matter must carry out the assessment on behalf of the authority. However, this was altered in the published Bill, with the only requirement being consultation with a specialist. Noble Lords are right to consider this to be a retrograde step and I look forward to the explanation from the Minister on this and an undertaking to reinstate in Clauses 12 and 27 the current approach, as the amendments propose.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I thank the noble Lords, Lord Low and Lord Touhig, for bringing forward these amendments. I say straight away that I fully support the intention of Amendment 88M, which is to ensure that local authorities engage a suitable expert when carrying out complex assessments. The assessment will remain an integral part of the process of determining a person’s care and support needs and whether these meet the national eligibility criteria. To ensure that this is done correctly, it is essential that the person carrying out the assessment has the right knowledge, skills and competence. We heard from users of care and support during the engagement on the draft Bill about the importance of the assessor having knowledge of the condition that the person may have, whether they are, for example, a frail older person, a person with mental health problems or a person with autism.
Care managers and social workers are trained to carry out assessments. Their skills and experience will allow them to assess people with various conditions such as physical disability. There are, however, certain complex conditions where these skills are not sufficient to allow assessments to be carried out effectively. I am particularly thinking about a person who is deafblind—the example, given by the noble Lord, Lord Low. In those circumstances, most care managers would find it very difficult, if not impossible, to communicate with the person. It takes someone with expertise to carry out an assessment properly and identify the person’s needs and the outcomes they wish to achieve.
I agree with the noble Lords that, in such circumstances, the local authority must engage a person with the relevant expertise to carry out the assessment. That continues to be our policy. I also accept that if the adult’s condition is so complex at the assessment stage as to require the services of an expert in the field to provide advice, then it makes perfect sense for this to be repeated when the plan is to be reviewed. I should like to reassure the Committee that the Bill already has provisions in place to allow this joined-up approach to occur if an adult’s circumstances have changed in a way that affects the care plan. Clause 27(4) states that the local authority must, to the extent it considers appropriate, carry out a fresh needs assessment. In doing so, it would have to follow the requirements of regulations to consult a person with expertise. I hope I have reassured noble Lords of our agreement to the principles that they raise. In the light of what they have said in support of the amendment, I will look again at Clause 12 to ensure that we are giving ourselves the relevant powers to achieve our aims. I hope that the noble Lord, Lord Low, will find that undertaking welcome.
Lord Warner
My Lords, I rise briefly to support the amendment of my noble friend Lady Pitkeathley. As someone who has spent six years in the local authority salt mines, I say that one should never underestimate the capacity of any local authority, when times are hard, to scratch around for things by which they can raise some money—I say this with affection. If there is a scintilla of doubt in this legislation about the ability to charge carers for services, we should remove it immediately. Otherwise I would be willing to bet a reasonable sum of money that when there is a financial crisis in some part of the country at some point in the future, a bright spark in a local authority will light upon the chargeability of carers for particular services. I am not sure whether my noble friend’s wording is the right way of doing this, but her intention is absolutely right. I hope that the Government will take this issue away and make sure that this particular piece of legislation is totally fireproof in terms of the ability of local authorities to charge carers for services.
I also support the amendment of my noble friend, Lord Lipsey. Evidence was given repeatedly to the Dilnot commission about the distressed state that many people were in when they made key decisions about their family’s circumstances. I suspect that he is on to something important that affects quite a lot of people.
Baroness Wheeler
My Lords, these amendments under Clause 14 deal with the difficult area of charging for the care and support that we have established is required through assessment. The historic settlement of charging for social care but not for healthcare is being increasingly challenged and the obviously linked issue of funding for social care is ever present, as we have been reminded in today’s debates.
The common agreement about charges is that they should be fair and that the process for means testing should be as simple and as unintrusive as we can make it. Fairness in the eyes of the public means no postcode lottery, but the excellent work by my colleague Liz Kendall, our shadow Care Minister, has shown just how stark the variations are across local authorities today. This is something that we need this Bill to address. Why should charges for the same service be allowed to vary so much? This is seen as unfair and it is. I will be interested to hear from the Minister about this variability of charges and what actions the Government are taking to address it.
For many older people, claiming for any kind of help is hard. We need a system that is easy to use and we could do far more to integrate the various bureaucracies to minimise form filling and document checking and having to repeat the same information over and over again. We could use income information from the Inland Revenue, for example, and we could unify all assessment frameworks and use passporting of entitlement to minimise bureaucracy and administration costs. Much of the detail is for the future in the regulations, but this is our opportunity to remind ourselves of key principles, such as fairness and simplicity, that should shape those regulations. Can the Minister tell us when the draft regulations relating to Clause 14 and charging will be published?
When they are published, the regulations themselves will inevitably be complex and disputes are likely. Dispute through judicial review or the courts is not the way. Will the Minister explain why there appears to be no response to appeal or conflict resolution processes contained in this part of the Bill? Why do many of the decisions made under provisions in Part 1 seem not to have some mechanism of appeal attached to them? The appeals system should be fair, easy to access and independent. Does the Minister acknowledge that this is needed?
On the specific amendments in the group, my noble friend Lady Pitkeathley has provided an excellent explanation of the importance of her two amendments, Amendments 89A and 89B. As usual, it is very hard to find anything additional to say when it comes to carers and carers’ rights after she has spoken. It is right always to underline our support for the provisions in the Bill providing statutory rights for carers, but there are still areas of concern that need to be addressed relating to means testing and local authority care charges, and the widespread fear among carers about charges as local authorities become increasingly strapped for cash.
Care Bill [HL]
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Baroness Wheeler
My Lords, this has been a valuable debate and important issues designed to probe and improve aspects of these crunch stages in the care and support journey have been raised. The amendments relate to the duty of the local authority in respect of the care and support plan for the adult, the support plan for the carer, the personal or independent budget resulting from the assessment of the adult’s and carer’s needs, and care accounts and direct payments. This is a large grouping and we have nine amendments. I will speak to them as they relate to other amendments in the group as briefly as I can.
Amendment 92ZZG seeks to specify in the Bill that the adult or carer needs in the care and support plan or support plan include both social care, to be met by the local authority, and health needs, to be met by NHS bodies in the area. This requirement would reinforce the need for local authorities and primary, secondary and community health services to work closely together for the benefit of the adult and the carer. It would also provide a clear, joined-up picture of the adult and/or carer’s interlinking care and support and health needs and how they are to be met. Amendments 92ZZP and 92ZZQ also provide for this important joining-up mechanism to apply to the care and support plan and support plan reviews by underlining that in the review process, local authorities must have regard to any changes in the health needs of the adult or carer, including any health provision that they are entitled to receive.
Amendment 92ZZK, in the name of the noble Baroness, Lady Browning, extends the intent of our amendment by specifying that in a young person’s care and support plan, both health and education, in addition to care and support, should be included, integrating with any existing plan in these areas. The importance of this amendment to young people with autism—or indeed to their carers, as the amendment is not specific—has been underlined by the noble Baroness.
The noble Baroness, Lady Greengross, has tabled a number of amendments. In the time available I will refer to four of them. Amendments 92ZZCA and 92ZZR address the need for the Bill to be explicit and thorough in relation to the assessment and eligibility entitlements where the adult lacks mental capacity to arrange for the provision of care and support. The amendments are designed to ensure that the local authority provides free care and support in the circumstances where the person authorised to represent the adult under the Mental Capacity Act 2005 asks for the care and support on the adult’s behalf.
Amendment 92ZZR addresses concerns raised by the Alzheimer’s Society and other groups that Clause 28(7) does not offer adequate protection to people who lack capacity and puts people with deteriorating conditions such as dementia at risk of falling through the gaps. Government Amendment 92ZZQC is designed to address this and the Minister’s recognition that the clause is open to misinterpretation is welcome. These are complex issues but we all recognise the importance of ensuring that the Bill is watertight in respect of adults lacking capacity to arrange care and support, and of having clarity in respect of the local authority’s duty to carry out a needs assessment and to continue to maintain their care account. Can the Minister reassure the House that the Government’s amendment addresses the concerns raised by noble Lords in this debate?
The noble Baroness also raises a key issue in her Amendments 92ZZRA and 92ZZRB, which go to the heart of the choice agenda to ensure that the current right for individuals to choose a preferred care home, and the ability of their representatives to choose a home on their behalf when, for example, the individual has dementia, is upheld in the Bill. Currently the Bill does not make this mandatory on local authorities and it is important that it does. I ask the Minister how the Government’s policy on patient choice can be met when the Bill does not reinforce the current right for people to choose their preferred care home.
Our Amendments 92ZZRAA and 92ZZRAB probe this issue further and are intended to explore the Government’s appetite for including the right to express a preference for the nature and location of accommodation. We support the intention of the Government, the Law Commission and the Labour Party that the Care Bill should increase the choice and control of adults using social care and their carers. I am, however, intrigued to determine whether the Minister thinks that this right in Clause 30 might be made more meaningful if it were extended to include the nature and location of this accommodation. It is important to seek to give adults needing care and support both choice and voice, including them in decisions about them. I look forward to the Minister’s response.
I support the intention of my noble friend Lord Dubs in his Amendment 92ZZH to ensure that care and support plans or support plans specify contingency planning for an emergency, ensuring that plans reflect the flexibility needed for fluctuating conditions, such as MS and other conditions referred to by my noble friend, where there can be severe changes and rises and falls in care needs. Having discussions and planning in advance for this, so that the care is there when it is needed, would be a significant step forward.
It is also important to look at contingency plans in case the carer suddenly becomes ill or is unable to provide care. The self-direct assessment model includes discussion on contingency and risk, but the extent to which clear provision is covered in the care and support plan is patchy. Indeed, it is not always easy to be specific about what would happen because often the reality is that instant emergency care cover is hard to organise when relatives live a considerable distance away or the cared-for person is not able to summon emergency help themselves.
My noble friend also underlines the importance of including a review date in the plan. It would be valuable to require social services departments and providers to be clearer about not just the review date for the plan but what the monitoring and review process is, and what kind of client feedback, or complaints process, there will be, as well as client/carer involvement in assessing quality of care and standards of service. I suspect that very few care plans currently address these issues. Our Amendments 92ZZMA and 92ZZQB probe how a reasonable request for a review of a care and support plan is to be interpreted and, most importantly, to be interpreted fairly across the country. We support a national care service and a national entitlement to care.
We also in our Amendment 92ZZEC draw attention to the important issue of the need for the completion of the care and support plan and support plan to be conducted within a reasonable timeframe. The assessment is a worrying and often traumatic time for the cared for and carer, so knowing what the timeframe is from interview to completion, and then for the personal budget decision, is pretty important. Getting an early assessment and getting the clock ticking towards the cap will also be crucial, so there must be targets and timeframes for the local authority to adhere to and meet. Assessments under the self-directed support process in my local experience as a carer involved four meetings with social services, including with the domiciliary care agency provider and with the daycare provider, and a lot of supported work to be undertaken by the adult or the carer on the client’s behalf. Is the Minister confident that local authorities will really have the capacity and resources to cope with the demands of the new system, including the estimated quarter of a million additional assessments for self-funders that will need to be carried out?
Finally, our Amendment 92ZZSB seeks to implement the recommendation of the Joint Committee on lifting the Department of Health’s current ban on direct payments being used to pay for local authority services if the individual chooses to achieve the agreed outcomes. Our amendment would bring this into effect by underlining in the Bill that there should be no restriction in terms of type of provider placed on the services which can be purchased by direct payments. I hope that the Minister agrees, and I look forward to his response.
Earl Howe
My Lords, I thank all those who have contributed to the debate on an issue which is crucial to the Government’s vision for a personalised care and support system—the care planning process.
In relation to Amendment 92ZZCA, I hope I can reassure the noble Baroness, Lady Greengross, that it is already the case in the Bill—the Explanatory Notes make this clear—that where the adult lacks capacity to make a request, it may be made by someone else on their behalf. This is the effect of the Mental Capacity Act 2005. It is not necessary to set this out in legislation each time. We will also make this clear in guidance. Condition 3 in Clause 18(4) imposes a duty on the local authority to meet needs in cases where the adult lacks capacity and has no one to arrange care on their behalf. This is an additional safety net, enacting a provision previously set out in guidance.
On Amendment 92ZZEC from the noble Baroness, Lady Wheeler, it is vital that local authorities retain the ability to be proportionate to the needs to be met. For some people the care planning process may be relatively simple and therefore can occur relatively quickly, but that may not be the case for people with multiple complex needs. As we discussed earlier, there may be a need for experts to be engaged in some cases, and this should not be overlooked in order to meet a centralised target. Introducing a defined timescale may also have the unintended consequence of some plans being rushed in order to meet the deadline, or even introduce gaming into the completion of care plans. I hope that the Committee will agree that this does not fit very well with our vision of a personalised care and support system.
We will work with stakeholders to set out best practice for conducting care and support plans in guidance. This will include indicative but not definitive timescales for care plans. Amendments 92ZZG, 92ZZP and 92ZZQ in the name of the noble Baroness, Lady Wheeler, raise the issue of specifying health needs in the care plan. The Bill creates a clear legal framework to enable such integration to happen in practice. However, it is not for the local authority to specify in the care plan which needs the NHS should meet. Clause 25 requires local authorities to involve the adult and carer, and take all reasonable steps to agree the plan with them, which would include whether to refer to any health needs.
In relation to Amendment 92ZZGA in the name of the noble Baroness, Lady Emerton, we believe that everyone should receive a personal budget as part of their care plan to ensure individuals are made aware of the cost of their care and the contributions both they and the local authority need to make. Giving local authorities discretion on whether to provide a personal budget would undermine our aim of giving people more choice and control over their care and support. Removing this duty will also affect the ability of the local authority and adult to track progress towards the care cap. I realise—at least I hope I realise—that the amendment was a probing one.
Care Bill [HL]
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Baroness Howarth of Breckland
I want to bring us back briefly to the amendments that we were discussing. Broadly, housing obviously has a tremendous impact on people’s lives, but we are talking about inserting the word “housing” in a number of clauses that will enable co-ordination between health, social care and housing.
Many local authorities and well-being boards, as the noble Baroness, Lady Jolly, mentioned, already have it—that is, if you achieve this co-ordination, you will make savings and produce better outcomes for the individuals being helped. Having it on the face of the Bill will ensure that the leadership of all these authorities has to pay attention to it, and I think that is important. At the moment we have a postcode lottery. If you are fortunate enough to live in an authority that has got it together, your adaptations will arrive; you will have all your other housing issues sorted out, along with your care package, and, if you are an old person in hospital, you will be out in a very short time. If you are a person with a disability, as that disability increases, or if you have a sudden disability, your adaptations will appear because there will be that co-ordination.
In many local authorities, however, the housing department can opt out and not play its part, which causes huge delays—I speak as someone who works in a number of charities and with people with disabilities. I want to support the amendment’s inclusion in the Bill so that the leaderships of authorities have to take it to heart and so that we do not have a postcode lottery and this is all part of strategic planning for the authority.
Baroness Wheeler
My Lords, the Joint Committee on the Bill acknowledged that it had been widely welcomed, but asserted that this did not mean that it could not be improved—there are gaps and risks and unintended consequences. The failure of the Bill adequately to underline the importance of housing not just to well-being but to integrated care, to prevention and to being included in the provision of advice and information on quality of care and assessment is what these amendments seek to address. The interplay between housing and well-being—the standard of someone’s living circumstances and their health condition, the appropriateness of their house or flat and the likelihood of their being able to remain in it and care for themselves—is long established. However, as noble Lords have shown, it is overlooked in key clauses of the Bill.
Our Amendment 87ZC takes forward the vision of specialist houses fully integrated into the health and social care system which was so comprehensively set out by stakeholders from across the housing sector in their evidence to the Select Committee. The quality of that evidence was commented on by the noble Baroness, Lady Jolly. There are numerous examples of inspiring best practice where housing is an integral part of care and support and service delivery. The Bill needs to provide the momentum for good practice to become embedded across all local authorities and health providers.
The evidence to the Select Committee from organisations across the housing sector cites inspiring examples of where housing, health and social care provision and support join up to provide integrated person-centred care. However, alongside this, there is huge frustration that progress across the country has been so slow and patchy. This is especially so when what stakeholders refer to as low-level interventions, which really make a difference, are often the services earliest to be cut back and dispensed with. The Anchor Trust, for example, described the determination to keep its service-level manager on site at one of its sheltered housing schemes because it made all the difference. The noble Lord, Lord Martin, made this point, too. Anchor said that, in its view, once the manager left, the next steps for elderly and frail people were usually into residential care. This was one of the many examples given of the consequences of not having housing-related support regarded as a key social determinant of health. I look forward to the Minister’s explanation as to why the Government have not ensured that this is fully reflected in the Bill.
Earlier, we heard the case from the noble Lord, Lord Best, and my noble friend Lady Wilkins for Amendment 81, supported forcefully by the noble Lord, Lord Rix, on the importance of including the promotion of housing provision in the duties of local authorities under Clause 3 to provide integrated services, and of ensuring that there are similar duties placed on the health service. Our amendment to Clause 6 complements this by reinforcing integrated joined-up working with registered housing providers, including housing associations and registered social landlords, and recognising these as key, relevant partners under the Bill.
The need to recognise housing as a preventive service cannot be overestimated or overemphasised. Schemes such as Midland Heart’s reablement service for the elderly or frail combine social care and housing association support to enable people to be discharged from hospital back to their homes quickly and help independence to be regained. They delay or prevent the need for more intensive care, reduce the likelihood of repeated hospital stays and can prevent avoidable accidents. Commissioners need to be encouraged to consider specialist housing, home-from-hospital services, housekeeping-related support and adaptations when designing preventive services. Housing is a crucial preventive service and Amendment 80 is important for ensuring that this is recognised in the Bill.
Amendment 88 is also important for ensuring that needs assessments include an assessment of housing options, as is Amendment 86, which underlines the importance of ensuring that local authorities provide information and advice for adults and carers on available housing options and the choice of providers available in the authority’s area. While in Amendment 87 we fully recognise the need for more specialist housing to be built to meet the needs of care and support, we would be cautious at the present time of putting this extra burden on local government when it does not have the resources or the means to deliver. It is the responsibility of national government to provide the £10 billion extra investment in infrastructure that the International Monetary Fund has called for to get the economy moving and make shovel-ready projects such as housing happen.
I am grateful to the National Housing Federation for its excellent briefing, and I refer to an example of integrated care and support it gives that was provided by one of its members, the housing association Look Ahead, for a psychiatric patient. It shows what can be achieved. Following a six-month stay in hospital, it had initially been intended that he should move to a residential care placement, but instead he was referred to Look Ahead’s rehabilitation service. The support that he received helped him with basic life skills, diet management and managing his condition. After 18 months, he had successfully moved to his own flat, had been able to reduce his psychiatric medication and had started a nursing diploma. This service, taking him from hospital to independence in his own flat in 18 months, was provided by successful joint working between the housing association, the local authority and the NHS trust, with an estimated saving of nearly £250,000 across the three services.
We heard, too, at our latest stakeholder group meeting yesterday about a successful jointly procured and delivered reablement centre in Liverpool that is funded by the local authority and the clinical commissioning group in respect of hospital discharge. The scheme provides two to three weeks of intensive occupational therapy and other key services, which doubled from 40% to 80% the percentage of patients who did not require a continuing care package after this initial support. However, we understand that in some parts of the country CCGs are expressing reluctance to enter into joint funding schemes with local authorities in case the health funding element is leaked into other council services, given their budget situations—literally, I suppose, into filling potholes or such like. Can the Minister tell us what steps are being taken to reassure CCGs about this potential barrier to providing integrated services?
As part of its oral evidence, Jake Eliot from the NHF said:
“Too often, the integration that occurs happens because service users, carers, providers and commissioners are working skilfully in spite of the system rather than because of it”.
This is something that the Bill can change effectively. I hope that the Minister takes these words to heart and accepts the amendment. It would ensure that the Bill recognises the importance of housing. It is important not just for well-being but for prevention, for the provision of advice and information in the assessment process and for ensuring that the overall quality of care is fully recognised.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, in tabling these amendments, the noble Lord, Lord Best, brings to the attention of the Committee the important role that housing plays in both care and support, and as a determinant of well-being. I have listened with care to the powerful contributions in support of them. Having done so, I begin with an observation that I hope is incontrovertible, which is that simply having a roof over your head will have a profound impact on your well-being. Having access to suitable housing for those with care and support needs plays a vital role in promoting not only their well-being, but their independence. The noble Lord, Lord Best, brought this point home very well. Properly taking into account the suitability of someone’s living accommodation could, for example, help to prevent a frail older person from falling and thus suffering the pain and trauma of broken bones and an unnecessary stay in hospital, the need for a greater level of care and support following discharge, and the costs of this to the public purse. It is vital that the system actively works to promote independence rather than waiting for people to reach a crisis point.
To reflect the importance of housing as a determinant of well-being, we have explicitly included the “suitability of living accommodation” in Clause 1(2), which sets out a list of things to which well-being relates and that the local authority is required to promote in performing its care and support functions. Furthermore,
“accommodation in a care home or in premises of some other type”,
is set out in the high-level list of examples of how to meet needs in Clause 8. Together, this means that the Bill ensures that housing is an integral part of care and support, where it is not general housing as excluded by Clause 23.
Baroness Wheeler
“( ) In exercising its duties under this section, a local authority must have regard to the relevant joint strategic needs assessments and joint health and wellbeing strategies required under sections 116 and 116A of the Local Government and Public Involvement in Health Act 2007.”
Baroness Wheeler
My Lords, the amendment is supported by my noble friends Lord Hunt and Lord Beecham. I shall speak also to our Amendments 81C and 87ZZA, as well as to other amendments in the group.
As my noble friend Lady Pitkeathley showed last week, we on these Benches will never tire of banging the drum for the importance of integration of health and social care—and housing—from the point of view of patients, service users and their carers. Our amendments would include in Clauses 3 and 6 specific reference to the body that stands the best chance locally of making this happen: the health and well-being board. These clauses deal with integration and the duty of local authorities to co-operate with relevant partners. We also stress in respect of these clauses, and Clause 2 under our amendment in an earlier grouping, the importance of the Bill emphasising a joint responsibility for co-operation and collaboration between local authorities and relevant partners, such as NHS bodies in their area.
Baroness Wheeler
My Lords, I thank the Minister for his comprehensive response. We need to reflect very carefully on the issue raised by my noble friend Lady Gale in respect of NHS continuing care and the social care boundary and its impact on self-funders. I will discuss with her whether we need to return to this issue on Report. She is right to mention the Joint Committee, which is particularly concerned. We need to be absolutely reassured that the Bill takes these issues forward.
I will study the Minister’s comments on health and well-being boards. He more or less agreed with me but did not want reference to them in the Bill. However, he accepted my Amendment 81C—which is a first for me—so I am grateful for that. With those comments I thank noble Lords for a very important debate, particularly on hospital discharge, and I beg leave to withdraw my amendment.
Care Bill [HL]
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Baroness Tyler of Enfield
My Lords, I add my support to Amendment 88B and point out that, while it is in the name of the noble Lord, Lord Tyler, on the Marshalled List, it should have my name attached to it.
Both my noble friend Lady Browning and the noble Lord, Lord Touhig, have presented a cogent case. I am not going to say anything other than it is important that we have properly co-ordinated arrangements for the transition process and the assessment as young people move between children’s and adult services. Certainly, like my noble friend Lady Browning, my experience is that far too often, in far too many cases, it is far from seamless.
I also support the three amendments to which the noble Baroness, Lady Meacher, has just spoken on young carers. The separation of adult and children services proves a real structural barrier, in my experience, to supporting young carers. Simply improving guidance and the other methods that have been tried before will not ensure the clear accountability that is needed for supporting the whole family. I know that the Minister has spoken before in Committee about the importance that the Government attach to the family approach—a view that I share—but a recent evaluation carried out by the Children’s Society found that the professionals involved believe that the law must be changed so that there are clearer levers for the provision of care and support in a way that sustains the whole family, and clearer lines of responsibility and accountability for both adult and children services.
We have discussed this both at Second Reading and in Committee. It needs a fully joined-up response and, while I understand and accept the Minister’s argument that most of the heavy lifting, if you like, in this area will be done in the Children and Families Bill, these amendments are needed in the Care Bill to ensure that adults’ needs are met sufficiently so that children and young people are protected from inappropriate caring, and that we have proper joining-up and co-ordination, not simply between services on the ground but between these two important pieces of legislation.
Baroness Wheeler
My Lords, the issue of assessment is an important part of the Bill and key issues have been raised which need to be carefully considered by the Government to ensure that the Bill gets these provisions right.
As we know, the Bill extends the right to be assessed for care and support to self-funders and their carers which, in the estimation of major social care charities, will involve nearly 500,000 additional assessments being undertaken by local authorities on top of those for people whose care is provided by them.
We support the extension of entitlement to assessment to self-funders and their carers but we join with noble Lords who are concerned about whether local authorities can possibly carry out this major undertaking in the realities of the current funding crisis and the other duties being placed on them. It is vital that we hear from the Government whether they consider extra resources will need to be made available to support these new duties and whether the noble Earl is confident that the current funding settlement will enable the duties to be performed effectively.
Our Amendments 87J and 88D address the concern that noble Lords and care and support organisations have raised over including in the Bill the requirement—as part of the assessment—to consider whether and to what extent the adult’s or carer’s own capabilities, or any support available from family and friends, could contribute to achieving the outcomes identified in the care plan. It is a very important issue.
Clauses 9(4)(d) and 10(5)(f) were not part of the consultation on the draft Bill, which followed the Law Commission’s advice on making a clear distinction between consideration of care and support needs and how these needs should be met. Support from families and carers should be considered as a way of meeting needs rather than as a reason for deciding the person does not have needs.
The approach in the Bill runs a huge risk of the assessment not recognising the vital contributions of carers and the extent of needs if the carer is unable to provide care. The clauses, as they stand, blur the distinction between an assessment being about what the needs are and the ways of meeting them because they look at how needs can be met other than through the provision of services before any decision about eligibility has been made. They also raise concerns that a carer might be pressured into providing care that they do not feel able to provide—or even that the adult may be pressured into receiving care from a family member. I hope that the Minister will recognise the importance of these two paragraphs being deleted.
Instead our Amendments 92ZZF and 92ZZL propose putting the issue in other parts of the Bill where the vital distinction we are making will be clear. We are seeking to insert new subsections into Clauses 24 and 25 to retain the aim of a capability-based approach being properly considered—in other words one that draws on a person’s own abilities and available social networks. Our amendments would require this process to take place after needs have been defined and not before.
The proposed new subsection refers to the local authority duty to provide information and advice to people not eligible for care and support. It adds to the advice and information requirement to discuss with the person who has been assessed whether they have the individual capabilities or social or community resources that can help them achieve the outcomes they want. Clause 25 deals with the care and support or support plan for people eligible for support, and our amendment again would ensure that the individual’s capabilities and social or community resources are considered at this stage after assessment. This is vital to ensure at least some protection against either the carer or adult needing care being pressured into a caring relationship they do not want, or is inappropriate.
Our Amendments 88P and 88PA deal with the concerns raised under this and in a later group to ensure that assessments are undertaken by persons with expertise, in line with current guidance and practice. Amendment 88P provides for the local authority to be satisfied that the assessment of needs of the adult and carer have been appropriately and proportionately considered by an appropriately skilled or qualified assessor. The intention of Amendment 88PA is to tighten the duty on local authorities to consider preventive support following the determination of eligibility. We want to ensure that local authorities do not use unreasonable justification for refusing to provide or arrange for preventive support and consider what preventive services would or would be likely to benefit an adult.
The current guidance recognises the need for flexibility in certain circumstances on who undertakes the assessment, and this needs to be retained. For example, my local authority is in the last processes of undertaking effectively new assessments of existing clients under the transfer to self-directed support and personal budgets. As noble Lords will know, I am a carer and my partner has long-term health and care needs after suffering a major stroke. Our recent assessment was undertaken by a very competent member of the personalisation team who is not a qualified social worker but a former care assistant, so she fully understood home care support. However, she had access to a qualified social worker care manager for advice to whom we could also refer if we needed. I stress that this was an assessment of a care plan in operation for six years, and under a process that was not originating the plan but viewing it from the personalisation perspective. We both found the new, but demanding process— 44 page forms, as I might have mentioned before—very helpful in giving new perspectives on issues, such as risk when I am not at home or contingency arrangements if I am hospitalised, or fall under the proverbial bus. Most carers just cross their fingers and hope that it would never happen for their own and the cared-for person’s sake, but the assessment experience was a positive opportunity to take stock and a worthwhile experience, which I hope we are still feeling good about when the personal budget allocation comes.
Nevertheless, my point is that the original assessment was conducted by a qualified social worker with full understanding of care requirements for major stroke recoverers, and that assessment has stood the test of time six years on. Had this assessment been a first time assessment, however, it would have been vital to have had a qualified social worker, plus any specialist advice on stroke, if needed. Amendments 88A and 88DA tabled by the noble Baroness, Lady Emerton, require the local authority to involve the relevant health practitioner in the needs assessment for adults and carers under Clauses 9 and 10. We agree that they should be involved where their specialist skills are needed and that this will help ensure better integration of health and social care, and overall better patient care.
I also support Amendment 88 from my noble friend Lady Wilkins, which provides for the local authority to have the same duty under Clause 9 for adult assessments as is given in Clause 10 for carers’ assessments. This is a logical amendment and I hope the Minister will recognise that.
We have also had three important amendments tabled by the noble Baroness, Lady Meacher, which have been added to this group and which we support. These reinforce our messages in the debate in Committee last week on young carers—namely that adult assessments need to meet the needs of the adult, so that children are protected from inappropriate caring. The noble Baroness has stressed how important this is and I look forward to the Minister updating us on the developments over the interface between the Care Bill and the Children and Families Bill in respect of young carers and parent carers.
Finally, I would stress how important the assessment process is. The Government’s discussion document on eligibility recognises that they are an integral part of the system. As we have seen, there are many separate aspects related to assessments, and it is a pity that, in this instance, we have had to lump them all into one big debate. I would therefore urge the Minister, even if he does not agree with the very strong case presented by noble Lords for including these matters in the Bill, to undertake to take the issues of concern away and review this part of the Bill so that there can be full confidence in the legislation underpinning this important issue.
NHS: Association of Medical Research Charities Report
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Baroness Wheeler
I, too, congratulate my noble friend Lord Turnberg on securing this debate, especially his timing following hot on the heels of our scrutiny of the Health Research Authority under the Care Bill. My noble friend is a much respected and tireless champion for research and innovation, leading to improved quality care for patients, and we in our party rely strongly on his expertise and support.
My noble friend and other noble Lords from across the House between them ensure that the importance of research and innovation to the NHS is kept to the fore, by this debate and, for example, in recent debates by the noble Lord, Lord Kakkar, on the impact of the EU healthcare in the UK and the concern over the UK losing its global allocation of clinical trials, and in the powerful debate earlier this year of the noble Lord, Lord Saatchi, on medical innovation, which reinforced the need to deal with the regulatory burden, to which noble Lords have referred, and to speed up the availability of innovative treatments.
Like other noble Lords, we welcome the progress on speeding up research approvals made by the HRA through the single portal of entry and single application procedure and bringing together the various research ethics committees. However, the point about the need for progress in getting the local R&D committees of NHS trusts singing from the same hymn sheet is well made and I look forward to the Minister updating us on the action that the Government are taking.
Like other noble Lords, I congratulate the AMRC on its excellent report and the accompanying survey of healthcare professionals’ views on the importance of research to the NHS and to staff working for it. Under the Care Bill, the need for Health Education England to ensure that research and innovation are incorporated into education and training for healthcare staff was a major theme, echoing the Joint Select Committee on the Bill on this issue. All NHS staff need to be able to make use of research throughout their careers and should be equipped with the tools to understand and support research and to assess and use evidence to inform their decisions when caring for patients or supporting clinical staff.
As noble Lords have pointed out, the association’s survey showed the challenges to be faced. The good news was that staff overwhelmingly recognised the value and importance of research, but the barriers to taking part in research, identified by the majority of staff surveyed, including doctors and nurses, was deeply worrying. It is clear that these barriers of lack of time, problems over funding and support and the difficulties of navigating regulation have to be overcome, particularly the need to develop stronger support among GPs to become personally involved in research. After all, they are such an important gateway to spreading the message to get patients interested and involved in research. As my noble friend put it, there is still much to do at the coal face. This is where the ARMC report is so valuable. It offers an authoritative but very practical vision of how the goal of having every clinician a researcher and every willing patient a research participant can be progressed and achieved, as well as how the leadership and support that the NHS staff need can be developed and built into a service-wide research culture.
The case studies in the report are particularly informative, providing examples of excellence and best practice in cancer, arthritis and other key research areas of patient consultation and involvement, and of building staff support and confidence about participating and using research findings so that they can show their patients the benefits of them taking part.
In the context of this debate it is important also to reflect on the progress being made on the UK life sciences and the innovation, health and wealth strategies, the central aim of which is for innovation to become the NHS’s core business. No one reading these reports and the recent one-year reviews can be in any doubt of the dramatic pace and scale of change in the medical and life sciences, such as the breakthrough in genomic medicine, which is changing fundamentally the way disease is diagnosed, prevented and treated, and the progress on regenerative medicine, which are all breathtaking to a lay person such as myself.
There are important developments on the service side, too, as part of the high impact innovation programme, such as in wheelchair design. Can the Minister update the House on progress on implementing the strategies? I could not find any details on the website about further review reports or of the Government’s response to the MHP Communications review of the strategies, which charted good progress but also some continuing problems, including implementation of NICE technology appraisals by NHS trusts and the poor level of awareness of the IHW strategy; only 30% had discussed the strategy at board level. How are these issues being addressed?
Finally, on the association’s vision, I would reinforce the need to keep our foot on the pedal to ensure that we continue to be a world leader in clinical research. We must ensure that CCGs in the absence of SHAs and PCTs continue the focus on research and do not allow it to diminish. The AMRC vision highlights the need for leadership and guidance to CCGs to promote research; to encourage NHS managers so that they understand the value of research and actively support it through their management decisions and processes; and to ensure that all parts of NHS support research, including primary care and all non-NHS providers. I look forward to the Minister’s response updating the House on the Government’s actions to ensure that real progress is made on all these fronts.
The Parliamentary Under-Secretary of State, Department of Health (Earl Howe)
My Lords, I begin by thanking the noble Lord, Lord Turnberg, for having tabled this debate. He has spoken with both authority and passion about Our Vision for Research in the NHS, the report by the Association of Medical Research Charities. The Government welcome the report; it is a challenging and insightful contribution to the debate on optimising the research potential of the NHS.
It is now more than seven years since the National Institute for Health Research was established in April 2006. The NIHR has a wide-ranging role that is central to our debate today. It provides the framework through which the Department of Health can position, maintain and manage the research, research staff and research infrastructure of the NHS in England as a national research facility. Indeed, together, NIHR people, facilities and systems represent the most integrated clinical research system in the world—driving research from bench to bedside for the benefit of patients and supporting economic growth.
My noble friend Lady Sharp referred to the importance of clinical trials, and of course, that is centre stage for the NIHR. As a result of the NIHR, large numbers of patients have the opportunity to take part in research. In the past financial year, more than 630,000 participants were recruited to trials and studies hosted by the NIHR Clinical Research Network Portfolio, and more than 99% of NHS trusts were involved in the recruitment. During the whole of 2013-14, the NIHR is promoting the fact that, “It’s okay to ask” about clinical research. We want everybody to get involved—patients, medical professionals and the public to support the campaign.
In March 2013, the Government published the revised NHS constitution, which contains a pledge to inform patients of research studies in which they may be eligible to participate. The pledge aims to give people better access to the potential benefits of participating in research studies, including clinical trials. We have already improved the amount of information available to patients, clinicians and the public about clinical trials by establishing the UK Clinical Trials Gateway. I just say to the noble Lord, Lord Aberdare, who spoke very powerfully about pancreatic cancer and the need to enlist more patients into trials for that condition, that the launch of the gateway was promoted through leaflets and other printed materials, including postcards and posters, and the gateway is also being actively promoted by INVOLVE, which is the NIHR-funded patients and public involvement body. In the course of just one month, May of this year, there were 11,570 visitors to the gateway website. Although not all of them will be related to pancreatic cancer, I hope that that gives an indication of the powerful influence that we hope the gateway will have in alerting patients to relevant studies.
Crucial to all this activity is the need to both protect and promote the interests of patients and the public in health research. That is why we established the Health Research Authority in 2011, and provisions in the Care Bill will give it added stability and independence. To my noble friend Lady Sharp I would say that the HRA has a programme of work to enable the implementation of a unified approval process and to support the authority in promoting consistent and proportionate standards for compliance and inspection. The programme includes a feasibility study with a number of pilots to test the effect of rationalising and combining elements of NHS study-wide review with elements of the research ethics committee review into a single HRA assessment. The findings are expected to identify and show how to release the potential to improve both study set-up times and the quality and consistency of ethical review.
The noble Lord, Lord Kakkar, very helpfully acknowledged that enactment of the Health and Social Care Act is a milestone for research in the NHS. It recognises the need to promote research and the use of research evidence and created unprecedented powers and duties at all levels to meet that need. The Government’s mandate to the NHS Commissioning Board—now NHS England—sets an objective to ensure that the new commissioning system promotes and supports participation by NHS organisations and patients in research funded by both non-commercial and commercial organisations, most importantly to improve patient outcomes, but also to contribute to economic growth.
The noble Lord, Lord Kakkar, specifically asked how CCGs will be held to account. The mandate asks for demonstration of progress against the five domains and all the outcomes indicators in the NHS outcomes framework. The framework document emphasises that vital to the quality and delivery of these outcomes will be continued research and the use of research evidence in the design and delivery of services at a local level.
NHS England welcomes the vision for research set out by the AMRC and shares its aspirations to empower patients to take part in research; to engage clinicians and other NHS staff; and to implement research findings to lead to better outcomes for patients and the public. Although NHS England is a new organisation, the NHS—as I do not need to tell the noble Lord, Lord Turnberg—has a strong existing culture of research, although we want to strengthen that culture. There is a wide wealth of research activity already taking place and considerable expertise within organisations. However, NHS England recognises there is further work to do to ensure that all NHS commissioning staff embrace a research culture, which was the theme of my noble friend Lord Saatchi’s excellent contribution, that they have access to research evidence and use it to inform commissioning decisions. It has recently recruited a team to lead the research agenda and develop and implement its research strategy. It is anticipated that a draft strategy will be in place by autumn this year, when extensive consultation with key stakeholders and partners, including patients, will be undertaken.
The noble Lord, Lord Turnberg, and my noble friend Lady Sharp rightly referred to the vital role of clinical commissioning groups within the new system. Through their formal declaration of compliance, all these groups have confirmed that they understand and will comply with their statutory responsibilities regarding promoting research. They have also confirmed that they are committed to following the policy of ensuring the NHS meets the treatment costs for patients taking part in research funded by government and research charity partner organisations. Alongside NHS England, Health Education England has responsibility for promoting high quality education and training that is responsive to the changing needs of patients and local communities. It will work with stakeholders to influence training curricula as appropriate.
HEE will work to build a workforce that is research-literate, with the skills and confidence required to diffuse the latest ideas and innovations. HEE will establish mechanisms to ensure that ongoing engagement takes place with a wide range of partners. This will include building relationships with academic health science networks and academic health science centres to align education with research and innovation. The noble Lord, Lord Turnberg, referred to the role of LETBs, which are responsible for commissioning education and training and securing quality and value from education and training providers. Indeed, they will need to ensure that the education and training that they commission is in line with national objectives, which include building a flexible workforce that is receptive to research and innovation. HEE and the LETBs are working with the NIHR to ensure appropriate investment in education and training, to develop clinical academic careers and to increase the number of staff accessing academic careers programmes across all clinical and public health professions.
I say to the noble Lord, Lord Rea, that the NIHR supports a wide range of programmes for research training and career development. The purpose of these is, self-evidently, to create the next generation of researchers focused on people-based research. The programmes provide support for the academic training paths of all healthcare professionals and other key disciplines involved in health and social care research, including, importantly, general practice. The NIHR is actively building research in general practice—for example, through its School for Primary Care Research. Through its integrated academic training programme, the NIHR has already taken a lead in reversing the decline in clinical academic careers.
The noble Lord, Lord Turnberg, spoke about investing in research, and of course I very much identify with the need to do that. As part of the commitments announced by the Government yesterday to invest in Britain’s future, the department will provide £150 million of capital investment in 2015-16 to fund health research infrastructure in the areas of dementia, genomics and imaging.
As regards clinical excellence awards and the consultant contract, discussions are ongoing between the UK government health departments, NHS employers and the BMA about changes to the consultant contract. The aim is to agree a heads of terms next month and to move to detailed negotiations. I will write to the noble Lord with further details about that.
My noble friend Lord Selborne spoke very powerfully about data from the NHS. One million people have some form of contact with the NHS every 36 hours. That produces, as he rightly said, a staggering amount of data, which can be used to drive forward research into new treatments. The NHS is in a unique position in that sense. We can draw on linked datasets on a scale unprecedented elsewhere in the world. Provided that we ensure confidentiality and privacy for individual patients, the opportunities for research and innovation are vast. In April last year, we established the Clinical Practice Research Datalink, which enables access to anonymised patient records to support the development of novel treatments. I can reassure the noble Lord, Lord Turnberg, that the CPRD is working with the NIHR primary care research network to recruit more GP practices to contribute their data to the CPRD’s data assets.
The clock is moving against me, so noble Lords will have to forgive me if I do not cover all their questions today but I undertake to write to those noble Lords whose points I have not covered—and there are many. I hope that the noble Lord, Lord Turnberg, in particular, has gained a sense of the importance that the Government attach to promoting research in the NHS, and a sense that we need, and have, a whole-system approach to this agenda, which is so vital for the future health and prosperity of our nation.
National Health Service (Direct Payments) (Repeal of Pilot Schemes Limitation) Order 2013
Baroness Wheeler Excerpts(11 years, 2 months ago)
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Baroness Wheeler
My Lords, I thank the Minister for his comprehensive explanation of the background and purpose of the order. We recognise that it is a technical amendment, but this is nevertheless a good opportunity to be updated by the Minister on the consultation on the extension of direct payments for healthcare and how the learning points from the pilots are to be translated into the revised regulations. Labour is fully supportive of extending personal health budgets, having pioneered them in social care through our personalisation and transformation of social care agenda, and set the ball rolling into 2009 on the PHB direct payments pilot.
It was also right to focus on exploring the use of PHBs and direct payments where people had the highest needs, such as those with long-term health and mental health conditions and who access the NHS most frequently. The pilot group covered CIPD, diabetes and long-term conditions, mental health and stroke and patients eligible for NHS continuing care. Labour was particularly concerned that PHBs do not stop at physical health but also include people with learning disabilities.
The national rollout target for PHBs to be extended to 56,000 people by April 2014 is challenging but is necessary to boost the take-up of PHBs across the country, as is the NHS mandate provision for every patient who will benefit to have the option of a PHB by 2015. Is the Minister confident that in the current circumstances, the resources will be available to support achieving these targets?
The pilot evaluation concluded that the majority of budget holders and their carers reported positive impacts of PHBs on patients—on health and well-being, care and other support arrangements for family members. As we know, PHBs have the potential to improve quality of life and satisfaction for both patients and carers, including psychological well-being. Helping patients design packages of care and support from clinicians, primary and secondary care and community health services also helps to provide joined-up integrated care, as the Minister pointed out, and in many instances has led to a reduction in the number of hospital visits. This is exactly where we need to be in terms of future service provision.
As a member—like many Members on all sides of both Houses—of the Westminster Health Forum, I recently chaired a specialist conference on PHBs which was attended by staff, providers and practitioners from across health and social care. The forum conferences are a valuable exchange between experts and staff on the ground including, in this case, those who are part of the multidisciplinary teams supporting and delivering PHBs. There was strong support for PHBs but it is clear, as the Minister said, that we are still very much in a learning process about their development. As usual, as you would expect, there were many questions and answers about some of the implementation, monitoring, accountability and evaluation issues.
I should like to finish by asking the Minister three questions on the issues that arose. First, there were widespread concerns at the conference that the evidence on the impact and effect of PHBs needed to be sharpened up in the future evaluation process. The pilot evaluation showed that there did not appear to be an impact on health status per se. Can the Minister explain whether there are plans in the rollout to assess possible measurements of health improvements, although of course we recognise that these can be hard to achieve in long-term health conditions?
Secondly, a number of GPs at the conference spoke about the challenge of getting wider GP buy-in to PHBs. Can the Minister update the House on discussions with the Royal College of GPs and the BMA on addressing this important issue? The college’s guidance on PHBs was especially commended by conference participants.
Finally, there was widespread concern about how PHBs will be taken forward by commissioners, health professionals and service users. Can the Minister update the House on advice planned or issued by the Department of Health in this respect?
Earl Howe
My Lords, this is most definitely one area of policy where all sides of the House are at one and I am grateful to the noble Baroness for her comments. She is right that the pioneering work on social care budgets was carried out during the previous Administration and gave us—and her own Government in 2009—sufficient confidence to institute these pilots for healthcare. I am pleased that she is as gratified as I am that the pilots have been a success, although as I emphasised earlier, we still need to feel our way in rolling them out.
The noble Baroness mentioned specifically people with learning disabilities and I agree with what she said. Although the number of people with learning disabilities involved in the pilot was small, it is clear from their stories that people with learning disabilities and their families benefited from the flexibility and control offered by personal health budgets. As the final report on Winterbourne View identified, personal health budgets have the potential to improve commissioning for people with complex needs and challenging behaviour. Many people in out of area placements, or who are at risk of such placements, are funded entirely through NHS continuing healthcare or have some NHS funding. These groups could be offered personal health budgets as the basis for a person-centred approach, meaning that they could have more control over where they live and the care they can access. It is that kind of intangible benefit—the noble Baroness asked about health benefits—that is very difficult to capture metrically, but it is nevertheless an important factor.
The noble Baroness asked me about resources and whether they will be available. As I mentioned earlier, personal health budgets are not about new money, they are about using existing money more effectively. Funding for budgets will need to be found from within normal NHS allocations and how that is done will be a decision for local CCGs. The personal health budget toolkit contains learning from the pilot programme on this and more information will become available during the early rollout phase as Going Further Faster sites consider sustainability issues. NHS England will be publishing guidance to help CCGs consider how to introduce direct payments for healthcare and personal health budgets on a local level in a sustainable way.
In answer to the noble Baroness’s question about health outcomes, it might be helpful to run through some of the findings from the pilots, which I think show that we can hold our heads up and say that they benefit people. First, we are clear that personal health budgets are cost-effective. They improve or maintain outcomes and reduce costs or are cost-neutral. These results are particularly true for people eligible for NHS continuing healthcare and people with mental health problems. When personal health budgets are implemented so that the person has choice over services and how they receive the budget, the cost-effectiveness increases. People can choose to meet their needs in different ways through lower-cost interventions, for example by training their personal assistants to carry out some health tasks, such as changing dressings. This means that people’s needs can still be met but in a different way, and perhaps in a way which is less stressful for them.
Personal health budgets also clearly resulted in an increase in the quality of life. The study found that effects were greater when people had budgets of more than £1,000, and this generally applies to people who have higher levels of health need, as I mentioned earlier. People benefited more from personal health budgets when there were fewer restrictions in place around what they could spend the money on and how they received the budget—that is, having a choice of a direct payment, a third-party budget or a notional budget. I hope that that is helpful to the noble Baroness in answer to her question.
In answer to the noble Baroness’s further question, I can tell her that the review will include a review of whether the budget is meeting the individual’s needs. That is clearly an important factor. We need to make sure not only that the money is adequate but that the plan itself and the money that goes with it are in step with each other. As regards the Royal College of General Practitioners and wider GP buy-in to personal health budgets, we have been very careful to engage with the royal college at all stages. We met them in conference last week to discuss their role going forward. It is important, as the noble Baroness stressed, that we engage GPs in this process, and I hope that we can continue that active co-operation with them.