Health

Baroness Campbell of Surbiton Excerpts

Thursday 26th November 2015 Lords Chamber

[Baroness Campbell of Surbiton (CB)]

My Lords, I thank my noble friend Lord Crisp for tabling this very timely debate. Over the years, my noble friend and I have often exchanged ideas on what I like to refer to as the empowerment model of health and social care well-being. That was the model that drove my leadership of the charities the National Centre for Independent Living and, after that, the Social Care Institute for Excellence, where I was privileged to be founding chair from 2001 to 2006.

Michael Marmot, in his book The Health Gap, argues that not health services but the social determinants of health are more important in determining the health of the population. Like Marmot, I believe it is more important to change the conditions in which people live—to empower people holistically—than simply to address their medical condition or their care need, which disabled people have described to me as the medical model.

It is more important to empower people in health and social care than simply to address their immediate medical conditions. Therefore, the National Centre for Independent Living used the empowerment model to support disabled people to move from dependency-creating care provision to independent living support. Our work was born out of the Community Care (Direct Payments) Act, legislation that was conceived and largely implemented by disabled people. For the first time in our lives we had direct control over our social care budgets. I have to say that traditional care providers were very opposed at the time but, with the assistance of enlightened directors of social services, civil servants and a very enlightened politician, the tectonic plates of power shifted from “the professional knows best” to “the client knows better”.

This care revolution could not have been achieved without the national infrastructure of local centres for independent living. These local centres are largely run and controlled by disabled people, who provide advocacy, advice, buddying, volunteering and jobs. Over 15 years, I saw people society had written off come out of residential care, long-stay hospital wards or their parents’ homes and begin to live as rounded human beings. Relationships were formed, families were made and children born.

Things have rightly progressed over the years, and now people with learning disabilities also enjoy the same right to choice and control over the way their support is delivered and experienced. So, too, do people with enduring mental health challenges, who developed their own empowerment model, the recovery model, which demands greater focus on life chances rather than more psychiatrists, more treatment and more loneliness, pushing a culture shift in the provision of mental health services.

There is rich evidence that the independent living movement drove a culture shift that has led to a wider personalisation approach and now, at last, it is beginning to catch on with personal health budgets. But I remind noble Lords that this was conceived by the people who have the condition and not the experts.

It really baffles me why, when the economy shrank, local and national politicians decided to cut first the independent living infrastructure that is necessary for progressive personalisation. I remember campaigning for a national independent living scheme, which became the Independent Living Fund, over 21 years ago. It was the epitome of the independent living empowerment approach, yet again it was sadly cast aside without a government strategy to ensure its principle and outcomes were not lost when transferred to local authorities.

Independent living pays for itself again and again. It is well evidenced that people who live independently in the community with the right support lead healthier and more cost-effective lives. It is the very basis of health and well-being creation, where professionals enable, facilitate and inform, and the service user learns, takes control and lives—not just survives.

Finally, I congratulate the Government on the Chancellor’s spending review statement yesterday, allowing as it does local authorities to levy a new social care precept of up to 2% on council tax. This is good news. But a word of caution: let the £2 billion investment be directed at social care that enables the service user to become an active, empowered citizen.

Winston Churchill said of scientists that they need to be,

“on tap, not on top”.

We need their expertise, but for God’s sake, do not let them run the country. I would argue that the same applies to health and social care professionals: we need their expertise, but for God’s sake, do not let them run people’s lives. I suggest that legislators, policymakers, economists and politicians should seriously reach out to disabled people and the service users and let them be part of the solution, not a problem to be dealt with. Perhaps we could give leadership to my noble friend’s health-creating society and not simply be the users of it.

Adult Social Care Contracts

Baroness Campbell of Surbiton Excerpts

Wednesday 11th February 2015 Lords Chamber

[Earl Howe]

My Lords, whatever system is chosen for commissioning care in a local authority, there has to be a fair system for setting fees. We expect local authorities to comply with their legal duties to sustain a high-quality market of providers in their area, and that involves paying fair fees. That is a matter for local determination. It has to be because, in seeking an open market, as we do, we are also aware that local market conditions have to be taken into account.

[Baroness Campbell of Surbiton (CB)]

My Lords, many service user-led organisations—for instance, the National Centre for Independent Living—provide a high quality of service. Does the Minister accept that in order to achieve high quality and high value, local authorities may have to pay a premium in the short term to achieve long-term cost-effectiveness? If he does, can he remind local authorities of this?

[Earl Howe]

My Lords, the principle that the noble Baroness articulates is, I am sure, applicable in some areas. I hope that she will be reassured to know that the department has developed statutory guidance for the Care Act to support local authorities, including commissioning. The guidance to the Act directs local authorities to ensure that all packages of care and support that are arranged are good quality and do not undermine people’s well-being. Furthermore, the department will, with partners, be developing a set of commissioning standards which will help local authorities to improve their commissioning practices.

Learning Disabilities: Health and Care Services

Baroness Campbell of Surbiton Excerpts

Wednesday 3rd December 2014 Lords Chamber

[Earl Howe]

The noble Lord is quite right that progress has not been nearly as swift as we, or indeed anyone, would have liked. NHS England has stated its ambition to achieve a 50% reduction in the number of people who were in in-patient beds on 1 April this year by March 2015. Although the latest data for November shows that some 2,600 people were in in-patient settings, the number of people with a transfer date has gone up by more than 1,100 in the last three months, so progress is being made. On CQC registration, the CQC may at any time decline to register or indeed cancel the registration of a provider where it is failing to comply with the registration requirements set out in law. That includes the new duty of candour and the fit and proper persons requirement, which came into effect at the end of last month.

[Baroness Campbell of Surbiton (CB)]

My Lords, in preparing a response to Winterbourne View—Time for Change, will the Minister ensure that the needs of this group of people with learning disabilities and their carers are not confined within a joint commissioning framework, dominated by NHS England and CCGs, but are instead assessed within the provisions of the Care Act so that they benefit fully from the well-being principle, which is a more holistic, social model approach, with good entitlements and safeguards? They must not again be subjected simply to a medical model approach, or the same will happen.

[Earl Howe]

I can give the noble Baroness that assurance.

Independent Living Fund

Baroness Campbell of Surbiton Excerpts

Monday 12th May 2014 Lords Chamber

Asked by

[Baroness Campbell of Surbiton]

To ask Her Majesty’s Government how the assessment guidance to local authorities under the Care Bill will address the particular needs of people transferring from the Independent Living Fund.

[The Parliamentary Under-Secretary of State, Department of Health (Earl Howe) (Con)]

My Lords, one of the key principles of the Care Bill is that people who require care and support should have choice and control over their lives. The Bill requires that all assessments will consider the person’s needs, well-being and desired outcomes. The requirements of the Bill, and of guidance supporting implementation, will apply equally to all adults having an assessment, including those who are transferring from the Independent Living Fund.

[Baroness Campbell of Surbiton (CB)]

I thank the Minister for his considered reply but, given the Government’s emphasis on people who have direct experience of using care and support services being centrally involved in their design and delivery, will the Minister please explain why his Government think it unnecessary to set up a reference group, including disabled people, the Independent Living Fund, local authorities and civil servants, to oversee this very important ILF transition?

[Earl Howe]

My Lords, the noble Baroness will know that she and I had a very useful meeting last week and I, with my honourable colleague Norman Lamb, undertook to her that we would give that proposal serious consideration, which we will certainly do. I will be in touch with her in the coming weeks to arrange a further discussion about this. We are absolutely committed to co-production in this and to involving stakeholders wherever possible.

Care Bill [HL]

Baroness Campbell of Surbiton Excerpts

Wednesday 16th October 2013 Lords Chamber

[Baroness Campbell of Surbiton (CB)]

My Lords, I will speak briefly in support of Amendment 83. I would have spoken on this in Committee, but unfortunately I was drowning in continuity of care. I feel that we are missing an important aspect in the debate: namely, the provider’s voice. I will give noble Lords an example from the Joint Committee on Human Rights. We ran an inquiry into Article 13 of the UN convention on the rights of disabled people. We took evidence from a range of providers, including private sector providers. We heard very good evidence from a private sector provider. When they were questioned about the Human Rights Act, it became evident that there was a great deal of confusion about when their homes were covered and when they were not. They erred towards saying, “No, we don’t think we’re covered because we haven’t been trained in that area”.

It became very evident to me that there was a crying need for clarification in this area. I asked a very simple question about what the witness thought that this meant for her private sector homes. She said, “Well, to be honest, we already do it. We allow our residents to go to bed at whatever time they like before 10 pm”. I feel that the misunderstanding of how the Human Rights Act covers private sector care homes was illustrated in that one moment. Therefore, the law needs clarifying—and this clarification would be welcomed not only by private sector care home providers.

[Lord Mackay of Clashfern (Con)]

My Lords, my name is on the amendment and, of course, I warmly support it. My noble and learned friend, Lord Hope of Craighead, analysed the situation in full, and in a way that in my view was absolutely correct and worthy of being followed. It is quite something for me to realise that my pupil has returned here as a result of his age, but obviously so far his acumen has been in no way affected.

The department says that people who provide this sort of care should consider themselves bound by the Human Rights Act. Why? Is that a mistake? No. So let us make it correct. Let us make sure that they are bound by the Human Rights Act. We are doing exactly what the noble and learned Lord, Lord Neuberger, suggested: where a particular function is to be regarded as of a public nature, the easiest thing to do is to say that. That is exactly what the amendment of the noble Lord, Lord Low, does.

I do not wish to get into the history of the previous Administration. The noble Lord, Lord Wills, came to the battlefront on that on previous occasions in my hearing. I do not know anything at all about that. However, there are two ways of approaching this. One is to consider amending the Human Rights Act, which I think was happening until the demise of the previous Government put an end to their considerations. The other is what the noble and learned Lord, Lord Neuberger, said: do not trouble with trying to provide a better policy in the Human Rights Act but say when you want it to apply. That is exactly what is required here.

I sincerely hope that the Minister will be able to accept the amendment—or that he will table his own amendment at Third Reading. I also hope that this will not be a matter on which we will have to test the opinion of the House, because we agree on the policy that the Human Rights Act should apply. The only question is whether the law has been properly framed to deal with that—and we can have no higher authority speaking on that matter in this House than a retired member of the Supreme Court.

Care Bill [HL]

Baroness Campbell of Surbiton Excerpts

Monday 14th October 2013 Lords Chamber

Moved by

[Baroness Campbell of Surbiton (CB)]

63ZA: Clause 37, page 31, line 39, at end insert “with a view to securing, so far as reasonably practicable, the outcomes referred to in section 9(4)(b) or 10(5)(d)”

[Baroness Campbell of Surbiton (CB)]

My Lords, I shall speak also to government Amendment 63A and my Amendment 63B. Before I begin, please forgive me for my speech going in stops and starts. This is the result of being an astronaut: we speak like this.

Noble Lords will know from my Private Member’s Bill, the Social Care Portability Bill, as well as my contributions to debates on this Bill, the depth of my concern about continuity of care when an older or disabled person moves to another local authority. It is a basic human right to move freely within one’s country, whether to pursue education or employment opportunities, to improve one’s family life or to seek personal support. The Government have said on several occasions that my Private Member’s Bill has informed the provisions of this Bill. It is true and I am grateful to have helped; I must say that I am also a bit flattered. We have collaborated well and I firmly believe that workable continuity of care is in sight.

The Minister for Social Care said to me in a letter last week:

“I believe that we are both of one mind and that neither of us wants a situation where there are no services in place on the day of the move, which could result in the person falling into crisis”.

I believe that too. Throughout the passage of this Bill, my two main areas of concern have been the need for a reference to outcomes in the continuity provisions and the risk of a gap in provision of care and support. We have made good progress on the second of these concerns since Committee. I am heartened by this.

Amendment 63ZA is about equivalence of outcomes. This goes to the heart of what continuity of care is about. The underlying purpose is to enable the person who moves to do the same kinds of things in their day-to-day life as they currently do. It may not always be possible and it may be through different means, but that is the aim. Certainly there are references linking plans to outcomes elsewhere in the Bill, and that is very welcome. However, signalling the intention in Clause 37 would send a clear and powerful message which could not be misconstrued by those providers who have an “I-know-what’s best-for-the-client” attitude. That is why I have tabled this amendment.

My second amendment addresses safe and seamless transition from one authority to another. The Bill says that if the second authority fails to deliver a new care package by the day of the move, it has to meet the needs that the first authority has been meeting until it has put the new arrangements in place. This is a temporary measure to ensure there is no gap in the provision of care.

I have been concerned that, just as the new care package may not be ready in time, as Clause 38(1) acknowledges, there may also be a delay in the temporary measures, which would mean a risky gap in care and support. My amendment proposes that, in those circumstances, the first authority would have to continue to provide care until the new arrangements were in place. I remain of the view that this would provide the strongest guarantee of continuity.

The Government, however, have proposed instead a new amendment, Amendment 63A, to improve co-ordination between the person moving and the two local authorities—in effect acknowledging the importance of a dialogue between all three parties. Certainly, both local authorities working together to prepare for the person’s move is a good template for success. The amendment will require the first authority to contact the second authority and maintain this relationship until the person moves. It will also require the first authority to keep the person involved so that they are fully aware of the arrangements in advance of their move. While this is not the solution I favour, I recognise that it will help to strengthen the process by bolstering the degree of collaboration and coordination between the authorities. That would go a long way towards reducing the risk of an interruption in care and support. It would also reassure and empower the person moving.

Throughout my campaigning life, “Nothing about us without us” has driven everything. This duty is a commendable endorsement of that approach. I believe that it would be enhanced by a further small change: that the first authority remain in contact with the second authority until the new care package is in place. This would ensure a smooth transition during any temporary arrangements, when the individual would be at their most vulnerable. Moreover, it would help the second authority, which has to meet the needs that the first authority has been meeting. I believe this fine-tuning of the Government’s helpful amendment would speed up the transition and support the way that Clause 38 is intended to operate.

After some negotiation last week, I believe I reached an understanding with the Minister and his officials that there will be a review of the continuity-of-care provisions after three years. These are new responsibilities for local authorities, and it is right that we should know whether they are working and take action if they are not. I look forward to the Minister’s confirmation of this in his response.

Moving house is one of the most stressful days of your life. Let us give disabled people the confidence to move and, hopefully, improve their circumstances. To do that, they require three things: first, knowing that support is there; secondly, the knowledge about the process to reassure them during a time of potential anxiety; and, thirdly, the certainty that they can live their lives in the same way with the same outcomes in their new environment.

I am pleased that the Government have travelled a fair way in tabling their amendment and have made significant progress in strengthening the transition process. I very much look forward to being involved in the next stage of the portability journey. I believe that we are about to have the portability celebrations but the cake has not yet been finished. If we get this right, I will feel free to chase my dream of moving to the Cornish coast when I eventually retire, which will not be yet. I beg to move.

[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.

--- Later in debate ---

[Earl Howe]

My Lords, the Care Bill will for the first time introduce a duty on local authorities to ensure that where a person is receiving care and support they can move home to another local authority area, confident that they will have services in place on the day of the move. The noble Baroness, Lady Campbell, has been a leading advocate in this area for some time, and I acknowledge that her Private Member’s Bill was a template for the provisions in this Bill.

The noble Baroness’s Amendment 63ZA looks to ensure that when the second authority is carrying out the assessment of the adult moving and, where appropriate, their carer, it meets the outcomes that they want to achieve. I reassure her that the provisions on assessment for the person needing care and their carer apply to when a person is being assessed for continuity of care. Assessments must look at achieving the outcomes that the person or carer want to achieve, and Clause 37(8) confirms that. I also give an assurance that we will emphasise this in the statutory guidance.

Amendment 63B proposes that the first authority is responsible for arranging services on the day of the move. I say immediately that I sympathise with the sentiment of the noble Baroness’s argument; neither of us wants a gap during which a person is left without services. However, our view is that the second authority is best placed to maintain continuity of care. Our reasoning is that the person will now be living in the area of the second authority and, as for anyone who has eligible care and support needs, the second authority has a duty to meet those needs. The second authority will also know its local market and will be far better placed to put in place arrangements that support the person and maintain their level of independence from day one.

My concern is that it would be difficult for the first authority to make such arrangements, particularly where the person moves a long distance away. In practice, if the first authority is responsible for making arrangements it would have to contact the second authority to discuss the local market, which raises the question of why the second authority is not responsible for putting in place services in the first instance.

For the reasons that I have explained, I believe that the second authority must be the one responsible for delivering services on the day of the move. However, in light of the concerns raised by the noble Baroness during Committee, I have looked again at the provisions in the Bill. My Amendment 63A will require the first authority to contact the second authority and maintain this relationship so that it is aware of where the second authority is with putting services in place. It will also require the first authority to keep the person involved with discussions about their services and informed of progress for putting these in place. In other words, the amendment will put the person at the centre of the process. Both ADASS and the Local Government Association have indicated that this amendment will strengthen the process.

The noble Baroness questions whether placing the responsibility on the second authority is the right approach. I believe that it is. However, I fully understand her concerns, and I commit now to my department reviewing how the continuity of care arrangements are operating three years following implementation. This will provide us with more information, which will help us to understand if the process can be improved.

We are already considering how we might implement the provisions in the Bill. The first step will be to develop the regulations and statutory guidance. Given the noble Baroness’s knowledge in this area, I hope that we can draw on her experience and that she will be able to advise us on the preparation of the regulations and guidance. I sincerely hope that in strengthening these provisions and in the commitments that I have given, I have been able to convince her not to press her amendments.

The amendments relating to ordinary residence will provide clarity in respect of three areas: the overall principle of ordinary residence; the principle of ordinary residence so that it applies to after-care under the auspices of the Mental Health Act; and finally, the cross-border placement of individuals so that service users can move between the four countries of the UK where this is deemed to be in their best interests.

The noble Baroness, Lady Wheeler, asked whether reciprocal agreements are now in place or whether there would be more changes in this area. The answer is that the basic structure is in place in terms of reciprocal arrangements on cross-border care. However, some small details remain to be finalised through regulations and statutory guidance. We will work closely with the devolved Administrations on this.

First, government Amendments 66 and 67 address a potential lacuna in respect of people who may live in England—and therefore be ordinarily resident in an English local authority—but who are treated entirely within the NHS of a devolved Administration. The amendments ensure that they would remain ordinarily resident in England. Secondly, Amendments 64, 65, 126 to128 and 132 to 136 apply consistent ordinary residence rules in England and Wales in respect of after-care under the Mental Health Act 1983, and reflect our agreement with Wales that Welsh Ministers or the Secretary of State will determine cross-border disputes according to agreed arrangements.

Thirdly, Amendments 68 to 75 relate to cross-border placements. The cross-border provisions in the Bill reflect the outcome of solid collaborative work with Scottish, Welsh and Northern Irish colleagues to remove legal barriers restricting the placement of an individual from one territory of the United Kingdom to another. These amendments make technical adjustments to those provisions, following further discussion with the devolved Administrations about the detail of the arrangements.

The purpose of the amendments on cross-border placements is threefold. First, they ensure that the established principle that the placing authority retains responsibility for the care of those individuals placed cross-border is not interrupted should the individual receiving care require a period in hospital or other healthcare accommodation. Secondly, they enable regulations to provide for the cross-border placements provisions to apply to individuals who receive direct payments. Thirdly, they provide a regulation-making power that would allow our cross-border provisions to apply to individuals placed in a setting other than a traditional care home—for example, supported living arrangements.

The noble Baroness, Lady Wheeler, also asked about the impact of cross-border placement provisions on cost pressures. It is our understanding that the number of placements between countries of the UK is likely to be minimal, certainly in terms of the overall budget. However, we will work closely with colleagues in the devolved Administrations to further understand and bottom out the financial implications.

This group of amendments provides further necessary clarity to enable people to receive care and support in locations that suit their needs and I commend them to the House.

[Baroness Campbell of Surbiton]

My Lords, I thank noble Lords and the noble Baronesses, Lady Wheeler and Lady O’Loan, for speaking in support of my amendment. I warmly thank the Minister for his thoughtful reflections on my amendments and for tabling his amendments to meet some of my concerns—followed up at the last minute by a very good, timely review. Although I had hoped to see both my amendments on the statute book tonight, I am happy to acknowledge that the Government’s proposal is a ginormous step in the right direction to full portability. If it reduces the prospect of a cliff-edge scenario, it will achieve its purpose. I know that disabled people will feel encouraged to move instead of staying put.

Finally, I am grateful to the Minister and especially his officials for their positive approach to this issue, which I have raised in Committee and, quite frankly, over the past three years. We have burned a lot of midnight oil together and I have been very impressed by their efforts to find practical solutions. It bodes well for our continued collaboration on this landmark reform—and it is a landmark. Do not forget, we were tied to our local authorities since time began and this is the first time that disabled people will have the right to freedom of movement if they require support. I will be pleased to be involved in the regulations and of course I will be there. Frankly, you could not stop me. I beg leave to withdraw my Amendment 63ZA.

Amendment 63ZA withdrawn.

Care Bill [HL]

Baroness Campbell of Surbiton Excerpts

Monday 29th July 2013 Lords Chamber

[Baroness Greengross]

My Lords, I support the amendment of the noble Lord, Lord Warner. I partly echo what the noble Baroness, Lady Pitkeathley, said, because I think that the Bill is one of the best that we have seen in a long time. It really could meet our hopes and aspirations, but I am so worried about funding. We know that the funding seems quite generous, but the noble Lord, Lord Warner, did not mention that when he or Sir Andrew Dilnot talk about bringing these proposals into reality, if we set them against the costs of the NHS more widely, a minute part of the costs need to be covered to make the social care provisions real and thus take away the purely crisis intervention that we can see is on its way, as well as a complete lack of preventative care. That is what we hope for. I hope that the noble Earl will think again about the amendment so that we can keep the costing and funding of this under consideration on a regular basis.

[Baroness Campbell of Surbiton]

My Lords, briefly, I support the amendment of the noble Lord, Lord Warner. I will be brief, as I do not have a second voice. I draw the noble Earl's attention to the fact that, two years ago, the Joint Committee on Human Rights held an inquiry into Article 13 of the UN Convention on the Rights of Disabled People. Article 13 covers the right to independent living. At the time, we were given considerable evidence that disabled people’s right to independent living was beginning to be severely thwarted by the funding situation in this country. We heard very worrying evidence of disabled people losing their independence in our society—the independence that, over 20 years, they had developed. They were working and having families, and being part of society.

Care Bill [HL]

Baroness Campbell of Surbiton Excerpts

Monday 22nd July 2013 Lords Chamber

Moved by

[Baroness Campbell of Surbiton]

92ZZAB: Clause 36, page 30, line 43, after “4)” insert “and keep the adult and the carer informed of progress”

[Baroness Campbell of Surbiton]

My Lords, I shall speak also to Amendment 92ZZAC and Amendment 92ZZAF.

I declare an interest as a long-term user of social care services. I have lived all my adult life in the same local authority. Like other disabled and older people who use social care services, I would find it impossible to move out of my local area because I could not be sure that my needs would be adequately met. Noble Lords will be aware that I have been very keen to change this deeply discriminatory state of affairs since I moved my first ever amendment in this House in May 2008 during the passage of the Health and Social Care Bill. I have returned to the issue several times in the past five years, culminating in my Private Member’s Bill on social care portability, which I recently introduced for a second time. Therefore, I am delighted that the Government have decided to put right this fundamental flaw in our social care system. I have been privileged to be closely involved in the Government’s deliberations on this issue for nearly three years. The Minister in another place told me very recently that my Private Member’s Bill was used as a template for the provisions in this Bill. That was very flattering, but flattery will not get you everywhere, and, on this, we are not quite there yet. There are a few points to be ironed out if social care portability is to work in practice.

--- Later in debate ---

The noble Lord has flagged some useful elements. He was explicitly addressing regulations in much of what he said. It is extremely useful to hear from him. I can reassure him that we are extending the settings to which ordinary residence is deemed to apply beyond care homes alone. We shall consult on how best to ensure the regulations are comprehensive and flexible enough to deal with future changes in the provision of healthcare and support. I am sure that his comments will be noted. I thank him and other noble Lords for their contributions. As ever, we have had a very well informed debate. I hope that I have reassured noble Lords and that they will feel able not to press their amendments.

[Baroness Campbell of Surbiton]

My Lords, I thank the Minister for her deliberations and her reflections on my amendments. I am glad that we have cleared up that touchy word, “equivalence”. I think that we are now on the same page.

However, I am worried about whether clarifications on the exchange of information and the updating of the user will give sufficient reassurance that services will be provided from day one. I understand that the Government are still working on and clarifying some of the issues with regard to assessment and involvement, and I think we all now understand what “outcomes” means. However, clarifying in guidance does not yet reassure me, because I have many examples of services users and their local authorities and good social workers being in contact with the second authority. They know what is coming their way. I am still deeply concerned that the Dave Morris example will happen again and again.

I am not convinced by the argument that the second authority is obliged pick up the bill from day one and that, should the first authority continue to pay, this would be a disincentive to the second. The second authority will have to pay this money back. Believe me, it will be far more vociferous than any service user. Thus I do not feel that there is an adequate safety net allowing the disabled person and their carer to be confident that the bills will be paid on day one. We still have a little bit more negotiation and clarification to do. I would be far more reassured by the mention of regulation in some of these areas but, for now, I will withdraw my amendment and look to the Minister and his very good, helpful and collaborative officials to go on working with me on this issue.

I am going away in the summer but only for two weeks. I will be back on this issue before and directly afterwards; I am a bit like a dog with a bone on this one. There is more work to do, but, for now, I beg leave to withdraw the amendment.

Amendment 92ZZAB withdrawn.

Care Bill [HL]

Baroness Campbell of Surbiton Excerpts

Wednesday 3rd July 2013 Lords Chamber

[Lord Campbell-Savours]

My Lords, I shall refer to the report of the Public Service and Demographic Change Committee. Members of the House who have not read the report should do so because it is a fascinating document. It is probably one of the best documents to come out of the House of Lords for many years. On the question of Dilnot, to which I am opposed but I shall explain that later on in the Bill, paragraph 193 states:

“The major gainers will be the relatively better-off, who will be protected from depleting their housing assets”.

In other words, potentially we will be spending in the longer term money that could have been raised in taxation. We are losing that revenue at a time when the same report refers to the deteriorating ability of the state to help people who are in need of medical services. It refers to the fact that the number of people aged over 75 is expected grow from 5.4 million in 2015 to 8.8 million in 2035. It refers to the fact that the demand for hospital and community service spending by those aged 75 and over is, in general, more than three times the demand from those aged between 30 and 40. We have higher demands from the elderly, more people falling into the groups that are liable to want the services historically provided by local authorities and the state, and yet, at the same time, with these Dilnot proposals, over a period of time we will be handing back money to the taxpayer to which, in my view, the taxpayer has no right.

The report says that the number of people in England with three or more long-term conditions is predicted to grow from 1.9 million in 2008 to 2.9 million by 2018. It is forecast that the number of people in England and Wales aged 65 and over with dementia—we all know the care requirements of people with dementia—or moderate or severe cognitive impairment will increase by over 80% between 2010 and 2032 to 1.96 million. The report goes on to say that it is estimated that by 2022 the number of people in England aged 65 and over with some disability will increase by 40% to 3.3 million.

As I understand the amendment of the noble Lord, Lord Best, he is simply saying, “Hang on a minute, before we start spending money, we should take stock of what is available in the longer term. Can the state afford to pay all the bills that are to come? Has that work been done?”. I hope that the noble Earl will seek to give the Committee those assurances because if the work has not been done and the predictions of some have not been taken into account, it may well be that the amendment of the noble Lord, Lord Best, is relevant. Let us defer much of this expenditure until we have sorted out the budgeting.

[Baroness Campbell of Surbiton]

My Lords, I had thought that I would not respond to the amendment of the noble Lord, Lord Best. However, I feel I must because there seems to be a missing voice in this debate—the voice of the thousands of people who use social care, over 70,000 of whom receive some form of direct payment. Ten years ago, when direct payments were successfully introduced and allowed disabled people to live independently in this country, we were proud to be employers. We were able to employ RPAs at a good rate, with holiday pay, and we were able to advertise. We were equal to those who employed individuals in their own companies. Ten years on, many cannot even give holiday pay and cannot advertise. They fall back on costly social care services or enter hospital as a result of not being able to employ assistants.

We, too, want to know the costings before new services come into effect. Disabled people may have to accept these services and find that they lose choice and control over their lives. So please do not forget the voice of those who say, “We, too, wish to know that the money is settled. We, too, need a voice to remind people that, in order for us to employ or control our services, we must feel that we can do this with equality and dignity and do it absolutely properly”. Otherwise independent living will become just a memory.

[Lord Sutherland of Houndwood]

My Lords, the noble Lord, Lord Best, is right in his analysis. He is pointing towards a financial problem that we all know is there and will continue to be there, not least in the current situation, for a number of years to come. The noble Lord, Lord Rix, is right about the consequences of this within the community. I declare an interest as president of Alzheimer’s Scotland and I know that the same applies to its sister body in the rest of the UK. There is a shortage of cash, which means that services are being provided more cheaply or, of greater relevance, are not being provided and are being squeezed. That is the analysis.

I do not think I can vote for the amendment as it stands. What is driving this difficulty is not the profligacy of this Government, previous Governments or local authorities—we can all tighten our belts and are doing so—but the reality of changing demography. My favourite statistic is that since the start of this Committee stage our statistical life expectancy has increased by 27 minutes. We cannot cash that in individually, but that is the reality. That is the driver of the difficult position we are in.

Ministers are often between a rock and hard place, and none more so than now. However, in the light of these facts, the Government have not reviewed the priorities of public expenditure across the board—I hope the Minister will persuade them to do that—and how many things can we afford to do with the population that we have. That means looking at priorities across departments. I do not just mean health and social care. It is inevitable that we will have to do this. The sooner the Government—the previous Government were not good at this—are prepared to say that we must undertake a review of priorities in view of the changing nature of our society, the sooner we will begin to move forward. In the mean time, I am in favour of keeping pressure on the Government by introducing a Bill of this kind because there is no doubt that that will sharpen the appetite of the voters for how change should be devised in the future.

--- Later in debate ---

[Baroness Pitkeathley]

My Lords—

[Baroness Campbell of Surbiton]

My Lords, I apologise for not being able to bound in as soon as the noble Lord, Lord Hunt, sat down. At that moment my papers cascaded to the floor. I rise to support Amendment 78D. For logistical and physical reasons, as my noble Lords can probably hear, I was unable to put this amendment down myself and the noble Lord, Lord Hunt, has done miracles to articulate our conversations in such a lucid manner.

I feel, however, that I must give your Lordships a very clear example of why I believe this amendment is so necessary. Why do health and social care practitioners need this further direction in this amendment?

It is true that health and social care consumers enjoy greater personal control now, which affords a small percentage support to live independently in the community. I am an example of the few who live with complex health and social care requirements and live a life just like any other: pursuing a career, tending the family, or in my case revising legislation.

We remain, however, an exception, rather than the rule. Let me give your Lordships a couple of examples. Just over a year ago, I led a JCHR inquiry into Article 13 of the UNCRDP, a right to independent living. When we launched the findings, I dedicated the report to a disabled young man who had secured optimum control over his own life using social care direct payments. He lost everything within a couple of months, after his support needs changed, due to requiring a tracheostomy. He had graduated from university and was about to start his first job .

Care Bill [HL]

Baroness Campbell of Surbiton Excerpts

Tuesday 21st May 2013 Lords Chamber

[Baroness Campbell of Surbiton]

My Lords, in welcoming this Bill I first declare an interest as someone who benefits from a whole range of care services, without which I would not be in your Lordships’ House. I hope that my professional knowledge, combined with my personal experience, will give added value to the debate over the coming weeks.

This Bill is the culmination of five years’ complex and challenging work to modernise the legal framework for adult social care. Much work has been done by the Law Commission, but the Government have also understood that they needed expertise that can come only from those who use care and support services. They conducted a lengthy and broad consultation. I have been impressed by the Department of Health’s efforts to get this right. Much credit for this must go to the fine leadership of its former director-general, David Behan. He recently left to take the helm of the CQC, which is very lucky. The Bill also benefits from the experience of Members of this House. A number of your Lordships served on the Joint Committee that considered the draft Bill and recommended improvements to it. The Government have listened, and the Bill is better for it.

Equally, the Bill is the culmination of more than 25 years’ work by the Independent Living Movement of disabled people. I consider myself very privileged to have played an active part in this social movement to radically change the way that care and support are designed and delivered. Since the mid-1980s we have fought to ensure that disabled people of all ages have the same opportunities that everyone else takes for granted. This has involved challenging entrenched professional attitudes, political assumptions and public misconceptions about what disabled people can and cannot do. The struggle continues today. Many people believe, as I do, that disabled people have lost ground recently. As someone once observed, “The price of liberty is eternal vigilance”.

However, this Bill shows how far we have come since the passing of the Community Care (Direct Payments) Act 1996—in my view, the most emancipatory care and support legislation in my lifetime. That Act was passed because a group of disabled people was able to persuade the Government of the day that they could be trusted to take control of the cash needed to pay for their personal care support. That was my first memorable experience of the House of Lords. Twenty years ago, I sat in awe behind the Bar, as the noble Lord, Lord McColl, introduced his disabled persons Bill.

Three years later, in another place, the then Parliamentary Under-Secretary of State at the Department of Health, John Bowis, took over the Bill. His powerful speech at Second Reading would be just as relevant in today’s debate. He said:

“I have heard from people who have a disability, but also hold down a job or voluntary work and whose working lives are obstructed by the rigidity of a council service rota; or people who do not like to complain, but would really like a different range”,

of home help support,

“or people who have responsible jobs, but are treated by the care workers as if they were rather tiresome and untidy children. They have no real independence, no real choice and no real dignity”.—[Official Report, Commons, 6/3/96; col. 372.]

What became the Community Care (Direct Payments) Act 1996 was a bold step on the then Government’s part to empower disabled service users. Local authorities were required to deliver services differently. They could not just decide what was best for us anymore. That Act transformed many people’s lives, including my own.

As your Lordships will be aware, there has been much progress since that landmark statute. Further legislation has widened access to direct payments. Personalisation policies have developed other ways for people to have more say and control over their support and care. Personal budgets offer another way for people to decide how funds should be used to support them. Even the NHS has caught on, by introducing personal health budgets for people with long-term conditions, so they, too, can have more say over their healthcare. A process that started among working-age disabled people has broadened out to benefit other groups: people with learning disabilities, older people and people with mental health problems. They are all using direct payments and personal budgets—and so, too, are parents of disabled children, giving them both more control and allowing enough flexibility for many to pursue their dreams. Policy guidance has encouraged local authorities to work with people and their families as equal partners. By working together, many are coming up with solutions that best fit their individual circumstances, using public services to complement their own resources, personal assets and community links.

All these positive trends, many of them with roots in the user and carer movements, come together in Part 1 of the Bill. It represents a sea change in the values and attitudes embodied in the legislative framework for adult social care. It treats people requiring support as citizens first and foremost, with rights and entitlements stemming not only from this Bill but from the Human Rights Act, the Equality Act, and international agreements, such as the UN Convention on the Rights of Persons with Disabilities.

However, your Lordships would not expect me to tell them that this Bill is perfect. It sets out many of the right goals, but we will need to question the Government very closely on some of the means by which they intend to achieve them. For instance, we are promised first sight of the regulations on assessment and eligibility towards the end of June. This will coincide with announcements about the public spending review, so we can assume that resources will impact heavily on the qualifying criteria for public support. Much also depends on how local authorities choose to implement their responsibilities and powers under this legislation. There is a great danger that this Bill could be ignored as being fine words but without teeth.

There are already wide variations in the sensitivity and understanding shown by local authority staff in assessing and responding to people’s needs. I recently had a review visit to assess my suitability for a personal budget. Like fellow service users, I am naturally very wary of reassessments as they generally involve budget cutting. I did not know what to think when I received a copy of the reassessment report last week. It says that I have,

“severe difficulties in either self-expression or understanding”.

If any of your Lordships have difficulty understanding what I am saying today, please come to my office for clarification. On a more serious note, the reassessment of my ability to communicate could mean the difference between a social care direct payment and NHS-funded care. That might be fine if support would not change for the worse as a consequence. It is no secret that some local authorities cannot wait to offload clients onto NHS continuing care. I am hopeful that health budgets will eventually mirror social care direct payments. However, this is not yet the case.

Last year, the JCHR investigated independent living. The resulting report was dedicated to a 22 year-old disabled man. This young man had been in part-time employment and living independently, supported by social care direct payments. However, after being admitted to hospital with a chest infection, it was decided that he would be safer with a tracheostomy. Tracheostomy care is not rocket science. It does not take long to train a sensible person. However, the local authority decided that this man was now “the problem” of the NHS. As a result, his direct payment was withdrawn. It took health commissioners six months to decide how he would be cared for, leaving him in a hospital critical care unit for three months longer than was necessary. This severely disabled independent man lost his job, his loyal PAs and his dignity. The cost to the taxpayer was £36,000 in hospital fees, double what it would have cost had he been allowed to keep control of his cash and care, with an enhanced payment from the NHS to pay for the extra PA hours needed during the night.

Is it any wonder that disabled people fear the future? They do not just fear the consequences of inadequate funding, they dread past ways of working creeping back in the name of austerity. Those of us who use care services must be given more control to enable us to survive these difficult financial times. Services need to adapt to enable the recipients to create their own budgeted support and to seek work, wherever that may be. This nicely leads me to return to an issue I have been raising in your Lordships’ House for the past four years. Noble Lords will know that I have a particular concern about portability of care and support. I will push for the Government’s proposals on portability in this Bill to match the outcomes set out in my Private Member’s Bill.

The Minister for Social Care in another place has indicated his desire to work closely with those of us campaigning for total portability of care and support. I have consulted on the subject for more than five years with disabled people and their organisations, carers, lawyers and professionals in social care. My Private Member’s Bill is the culmination of that work. My Social Care Portability Bill has been recognised by the Department of Health. The greater part of it has been subsumed into the Care Bill before us today. However, there is one crucial difference. My Bill ensures that disabled people can move to another area, confident that they will receive the support they need to enable them to continue to play an active role in society. The manner in which the council meets those needs may be different because of the different configuration of local community and care services but it should not reduce choice and control, and the ability to achieve the outcomes they need. I believe that the Care Bill has the same intention but I would welcome confirmation that this is indeed the case. There are questions about bureaucracy and enforceability but the detail can be fleshed out in Committee.

There is one other matter I want to flag up today. Those who receive their care not from a public authority but from a private body lack the full protection of the Human Rights Act. The Joint Committee recommended an amendment to the Bill to put this right but the Government have not addressed it. It is a loophole that must be closed. I will be interested to hear the Minister reflect upon that issue.

I have great expectations of this Bill’s capacity to change the way that care and support are delivered in the future. We have waited for this a very long time. We must not let the opportunity slip through our hands. We are all interdependent. We all need to feel safe and valued. We all need our dignity respected. We must take heed of those “experts by experience”, of which I am proud to be one. We have much to offer the debate on how we create care and support services which maximise the well-being of those who need them. I am sorry if I have taken longer than many other noble Lords may for the rest of this debate but I feel so strongly about this issue. We have much work to do and I am happy to do my part.