Care Bill [HL]

Baroness Wheeler Excerpts

Tuesday 16th July 2013 Lords Chamber

[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.

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[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]

Baroness Wheeler Excerpts

Tuesday 16th July 2013 Lords Chamber

[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]

Baroness Wheeler Excerpts

Tuesday 9th July 2013 Lords Chamber

[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.

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Moved by

[Baroness Wheeler]

81B: Clause 3, page 3, line 41, at end insert—
“( ) 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.

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I hope that I have reassured the Committee of the robustness of the provisions relating to integration, co-operation, and delayed discharges, and that in the light of what I have said the noble Baroness will feel able to withdraw her amendment.

[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.

Amendment 81B withdrawn.

Care Bill [HL]

Baroness Wheeler Excerpts

Tuesday 9th July 2013 Lords Chamber

[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

Baroness Wheeler Excerpts

Thursday 27th June 2013 Grand Committee

[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

Thursday 20th June 2013 Lords Chamber

[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.

Care Bill [HL]

Baroness Wheeler Excerpts

Monday 10th June 2013 Lords Chamber

[Baroness Finlay of Llandaff]

My Lords, for many years in medicine, there has been a move to try to ensure training in the community, but its implementation has been woeful. It has not been instigated as rapidly as people have been campaigning for over many years. I hope that the Government will look favourably on the spirit behind the amendment, although, in an odd way, the wording may be a little too restrictive. It is a very important move to ensure that, as more patients are moved out to be cared for in the community, community services can deliver what they need. With very sick people in the community, a different skill set will be needed from that which is currently available.

[Baroness Wheeler]

My Lords, I support my noble friend Lord Warner’s amendment. There will of course be further debate on integration in the wider context of the Bill, but the amendment is important because it underlines that Health Education England must have the strategic overview and understanding of the workforce requirements across the boundaries of health and social care if it is to undertake its role effectively.

Our stakeholder meetings have shown that there is considerable concern among stakeholders on that issue. They want the links between HEE and the social care sector to be more explicit. The noble Earl’s reassurances last week in that regard concerning Clause 88 were helpful, and I look forward to hearing from him further on how HEE is to work with integrated care delivery. I hope that he will concede that my noble friend’s cross-reference in his amendment to Clause 85 is necessary, because it links the HEE’s duty in Clause 88 to have regard to promoting integration to its key role of ensuring that there are sufficient skilled healthcare workers available.

The Health Education England mandate acknowledges that the future needs of the NHS, public health and care system will require a greater emphasis on community, primary and integrated health and social care. HEE is essential in that. Staff must be trained and developed in the skills that are transferable between different care settings and in working in cross-disciplinary teams in a range of different health and support settings. It must also work closely with the social care sector by developing common standards and portable qualifications across the NHS, public health and social care systems. The local LETB role, linking up with the health and well-being boards, is particularly important in that respect.

It is worth briefly mentioning two recent reports on integration, both of which, among other things, reinforce how much awareness and understanding of each other’s roles must take place for integrated services to happen and to be delivered. The shared commitment statement under the National Collaboration for Integrated Care and Support was drawn up by an impressive mix of national partner organisations, including government departments, the HEE itself, regulatory bodies, the Association of Directors of Adult Social Services, National Voices and other stakeholder groups. It pledges to help,

“local organisations work towards providing more person-centred, coordinated care for their communities”.

There is not time to go into detail, but National Voices’ A Narrative for Person-centred Coordinated (“Integrated”) Care, which sets out what integrated care and support looks like from an individual perspective, for both the cared-for and for carers, is a powerful vision for the future. It underlines how closely staff across primary, community, NHS and social care will have to work if this is to be achieved. The section of the narrative on communication describes professionals talking to each other, and patients always knowing who is co-ordinating their care, always being informed about what is going on, and having one point of contact. This in itself would be nirvana to most patients, service users and carers.

The recently published Nuffield Trust report, Evaluation of the first year of the Inner North West London Integrated Care Pilot, looks at developing new forms of care planning for people with diabetes and people over the age of 75. It underlines the importance of staff having a high level of commitment to the pilot and to the care planning process in particular. Initial results show that work on care planning and multidisciplinary groups resulted in improved collaboration across the different parts of the local health and social care system.

On public health, the HEE mandate itself states:

“The health of people in England will only improve in line with other comparable developed countries when the entire NHS, public health and social care workforce genuinely understands how their services together can improve the public’s health”.

Does the Minister accept that the HEE mandate supports the case for the Bill to include an explicit reference on the overall strategic context?

HEE’s role is to provide national leadership for workforce training, planning and development, ensuring that we have skilled, committed staff in the right place, in the right specialities and numbers. We need to meet these challenges of the future and of the changing face of healthcare provision. How to ensure an integrated approach to education and training across the NHS, public health and social care is a very strategic issue. I hope that the Minister will reassure the House on this by responding positively to the amendment.

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

My Lords, integration between health and social care is a strong theme of the Bill, and the Government take it very seriously. I very much agreed with a great deal of what the noble Lord, Lord Warner, and others said on that topic.

First, to deliver integrated care, it is important that local planning is aligned and is mutually reinforcing. That applies also to the planning of education and training. As Members of the Committee are well aware, the future needs of the NHS and the public health and social care system will require a greater emphasis on community, primary and integrated health and social care than in the past. An understanding is required of working in cross-disciplinary teams and working to break down barriers between primary and secondary care.

The mandate the Government published a couple of weeks ago gave Health Education England a clear remit to ensure that it trains and develops a workforce with skills that are transferable between these different care settings. The amendment of the noble Lord, Lord Warner, seeks to amend Clause 85 to require HEE to have,

“regard to the promotion of integration with care and support provision”,

when it performs its duty under that clause of ensuring that there are sufficient skilled healthcare workers for the purposes of the health service. As the noble Lord is well aware, Clause 88, which lists the matters that Health Education England must have regard to in exercising its functions in Clauses 85 and 87, already includes a requirement at subsection (1)(h) that Health Education England must support,

“integration of health provision with health-related provision and care and support provision”.

Subsection (1)(i) requires Health Education England to support staff to be able to work across different settings. These provisions were added to the Bill at the recommendation of the Joint Committee following pre-legislative scrutiny. Although Health Education England does not have a direct remit for the social care workforce, it will be expected to work closely with the social care sector at local and national level to ensure that workforce plans align with the training and development of the healthcare and public health workforce.

To support the development of this integrated approach, Health Education England needs to work with partners across health and care to develop common standards and portable qualifications. This must make it easier for staff to work and move between settings and should build on existing work, such as skills passports and national minimum training standards. Health Education England will work closely with the sector skills councils, Skills for Health and Skills for Care, nationally and through the local education and training boards, to ensure that workforce development is co-ordinated and integrated.

--- Later in debate ---

[Baroness Jolly]

My Lords, I thank the noble Lords, Lord Turnberg and Lord Patel, for helping me with these amendments. The noble Lord, Lord Willis of Knaresborough, is unwell and may not be returning to us in time to help with the Bill. His twin passions are training and research, and Amendments 37 and 39 to Clause 90, which are all about the functions of LETBs, completely underpin that. I would be doing him a disservice if I did not ask the Minister to explore these areas when he sums up.

It is critical not only at a national level, with HEE, but at a local level, with the LETBs, that this area is not forgotten. Staff must understand not only the implications but all aspects of research. That must be plugged in at HEE and, with these amendments to Clause 90, at the LETB level.

[Baroness Wheeler]

I strongly support this group of amendments, the case for which has been ably made by my noble friend Lord Turnberg, the noble Lord, Lord Patel, and the noble Baroness, Lady Jolly.

The importance to the NHS of research and innovation has come under close scrutiny and debate in the House in recent times, under the Health and Social Care Bill, in the powerful debate of the noble Lord, Lord Saatchi, earlier this year, and in the debate that we almost had in the name of the noble Lord, Lord Kakkar, on the life sciences industry’s important contribution to healthcare and to our economy.

Under the Health and Social Care Act, Labour fully supported placing duties on the Secretary of State, the NCB and CCGs to promote research. Indeed, my noble friends Lady Thornton and Lord Hunt proposed amendments to that Bill reinforcing the importance of research, and we were pleased to work with noble Lords across the House in strengthening these provisions. That is why amendments to Clause 86, which deals with quality improvement in education and training, are so important.

Amendment 17 deletes the current reference to HEE needing to promote,

“the use in those activities of evidence obtained from the research”,

and replaces it with a proactive reference to using this,

“evidence to ensure the rapid uptake of innovations into practice”.

Amendment 20 underlines the need for HEE,

“to secure that research and innovation are incorporated into education and training”.

This was a recommendation of the Joint Committee, which we fully support. All NHS staff 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. They also need to be able to make use of research throughout their careers—a point that my noble friend Lord Turnberg made strongly—and be familiar with the NHS research infrastructure, which can provide further help and support.

The recent survey by the Association of Medical Research Charities showed the challenges to be phased in in this regard. Some 91% of staff surveyed, including doctors and nurses, identified the barriers that they had experienced to taking part in research. Lack of time was the predominant reason given by respondents. Other reasons included funding, practical support and difficulties in navigating regulation. GPs are an important gateway for getting patients involved in research, but although a majority of GPs believes that it is important for the NHS to support research into treatments for their patients, only 32% felt that it was important for them personally to be involved. As AMRC emphasises, we still have a long way to go if the Government’s goal of every clinician being a researcher and every willing patient a research participant is to be achieved.

Amendment 32 to Clause 87 adds promoting innovation and research in clinical practice to the matters that the HEE should have regard to—a logical and crucial next step in our support for innovation and research under HEE’s national functions. Amendment 37 on the local functions that LETBs exercise on behalf of HEE makes the important cross-reference between Clause 90 and Clause 86, rather than Clause 84, on the issue of ensuring that there are sufficient skilled healthcare workers promoting research and the use of research evidence in the health service. We believe that if LETBs are performing other duties of behalf of HEE under Clause 90, there is no reason why they should not also promote research, obviously within the LETB area. Amendment 39 would confirm in legislation that HEE’s research duty applies to LETBs as a main function, and we strongly support that.

Throughout the debates on innovation and research, we heard continued concerns and frustrations at the often painfully slow, complex and bureaucratic process of getting innovation in care and treatment adopted in the NHS. There was frustration, too, that existing processes and pathways, such as conditional approval in the named patient schemes and the opportunities under existing legislation, are not being fully used. In the January debate, the Minister reminded us that it took an estimated 17 years for only 14% of new scientific discoveries to enter day-to-day clinical practice. That is why these amendments to ensure that HEE actively promotes innovation and research and carries that through in the education and training of healthcare workers needs to be supported by the Government. I look forward to the Minister’s response.

Care Bill [HL]

Baroness Wheeler Excerpts

Monday 10th June 2013 Lords Chamber

[Lord Rea]

My Lords, I must apologise for not moving this amendment in its proper place on the first day in Committee. That was due to a misunderstanding on my part, and I apologise.

I put down this probing amendment to draw attention to the importance and relevance of interprofessional education in preparing different health and social care staff to work well together. It is recognised across the board that caring for the increasing proportion of the population with long-term problems requires teamwork. This will be more effective and economically efficient if the different members of the team understand the role and approach of other members of the team with whom they need to collaborate, be they social workers, nurses, physiotherapists, pharmacists or doctors. At present, each healthcare worker may have no proper conception of the abilities and skills of those in another discipline, and that may lead to inefficient working, inappropriate decisions and learning by trial and error, if at all. One thinks perhaps of Stafford.

The duty to promote integration is much used in legislation but is mainly directed to administrators at a high level. For example, in last year’s Health and Social Care Act the NHS Commissioning Board and clinical commissioning groups were directed to take note of the need for integration, and in this Bill promoting integration is a requirement on local authorities. In Clause 88, in which this amendment sits,

“HEE must have regard to … the desirability of promoting the integration of health provision with health-related provision”.

The detail of how integration is to be achieved is left to the bodies concerned, although there may well be, and certainly should be, guidance, which I have not seen but which is perhaps to be published later. Perhaps the Minister can fill me in here. My amendment could perhaps be considered when formulating such guidance.

Interprofessional education needs to be carried out at educational or training institutions for clinical and social care professionals but also in continuing postgraduate education. Therefore, it is not only to Health Education England but to the General Medical Council, other professional bodies, royal colleges, universities, postgraduate deans and LETBs that this amendment is directed.

I do not have much time to describe the details of how IPE works, and this is not the right place to do so. Suffice it to say that it is not something I have invented off the top of my head but is a recognised discipline, led in this country by CAIPE, the Centre for the Advancement of Interprofessional Education. It has branches in several countries on both sides of the Atlantic and has produced a number of publications describing the method and the institutions that have adopted it. It has also commissioned several evaluative studies which have confirmed its effectiveness. CAIPE is in touch with the Department of Health, and positive discussions have taken place. The Minister will probably know about them. In fact, I understand that CAIPE is due to meet Health Education England to discuss possible future collaboration. Interprofessional education is up and running in at least five universities, including Leicester, De Montfort, Bristol, Sheffield Hallam and Aberdeen.

I am aware that there are plenty of problems involved in getting different professions to receive co-ordinated education, not least logistics and timetabling. Students may not at first appreciate the need for understanding and co-operation, so do not always take kindly to what they may see as a diversion from their task of learning the skills needed for their chosen profession. However, once they meet each other, understanding can grow. Directors of education need to be convinced of the benefits of IPE. Its benefits are summarised well in a recent WHO task force report:

“After almost 50 years of inquiry, there is now sufficient evidence to indicate that interprofessional education enables effective collaborative practice which in turn optimizes health-services, strengthens health systems and improves health outcomes ... In both acute and primary care settings, patients report higher levels of satisfaction, better acceptance of care and improved health outcomes following treatment by a collaborative team”.

I shall be most interested to hear the Minister’s views on IPE and whether he agrees that it deserves to be more widely used in the National Health Service. I beg to move.

[Baroness Wheeler]

My Lords, I shall make a brief intervention in support of the desire of my noble friend Lord Rea to draw our attention to the importance of interprofessional education if we are to develop health and social care staff’s mutual respect, understanding and knowledge of each other’s professions that will bring about the collaboration, joint working and integration of care and support that we need. My noble friend describes this as staff knowing “how the other half lives”—in other words, staff knowing about each other’s services and how they operate, and being aware of boundaries, interdependence on achieving outcomes and competing agendas. He commends IPE because it provides an established model of collaboration and co-operation on the ground.

The amendment refers back to our earlier debate on integration and the need for multidisciplinary teamworking, and it will also be relevant to the debate that we will come to shortly on the importance of continuing professional development for healthcare workers. It adds promoting the use of joint IPE for clinical and social care staff as a matter that HEE must have regard to in relation to its responsibility for promoting the integration of healthcare and health-related provision.

My noble friend helpfully sent me a considerable amount of background information on his amendment in which, as a former HR professional, I was genuinely interested. It included extensive research by the Centre for the Advancement of Interprofessional Education, which my noble friend referred to, supporting the effectiveness of interprofessional education and training. My noble friend also referred to discussions between CAIPE and Health Education England to explore HEE’s role in taking IPE forward and embedding it in professional curricula. This is to be welcomed. Two-thirds of UK universities with two or more undergraduate programmes in health and social care include IPE, so these discussions will be helpful. These programmes cover a wide range of professions, including nursing, social work, physiotherapy, pharmacy, clinical psychology and radiography—all professions that are increasingly required to work flexibly across different care settings as part of multidisciplinary teams.

The Nuffield Trust evaluation of the first year of the inner north-west London integrated pilot that I referred to earlier underlined the importance of staff in multiprofessional teams having a high level of commitment to the pilot as a key factor in improving collaboration across different parts of the local health and care system. However, the evaluation also reminds us of the international evidence that integrated care takes years to develop and that a minimum of three to five years is needed to show impact in relation to patient experience and outcomes. Culture change, moving from silo to collaborative working among professionals, is a slow process, however committed we are to trying to make it work. I look forward to the Minister’s response to my noble friend’s amendment.

[Earl Howe]

My Lords, if I may say so, the noble Lord, Lord Rea, has explained his amendment in a very compelling way. Amendment 31 seeks to amend Clause 88(1)(h) so that Health Education England must have regard to the promotion of joint interprofessional education of clinical and social care staff where appropriate. As he is aware, much of the ground on these issues was covered in our earlier debates, when I hope I was able to reassure noble Lords that the Government take this issue very seriously. Clause 88 of the Bill, in listing the matters that Health Education England must have regard to in exercising its functions, is clear that Health Education England must support integration between health and care, and support staff so that they are able to work across different settings in health and social care.

In establishing Health Education England with a multiprofessional remit with responsibility for the development of all the professions, the Government have reinforced the importance of planning and developing staff in an interprofessional manner. As I mentioned, this approach is reinforced further in the Government’s mandate to Health Education England, which places a clear requirement on Health Education England, where appropriate, to develop multidisciplinary education and training programmes. I hope the noble Lord will agree that that is very much consonant with the principles that he was propounding in his contribution.

We entirely appreciate the importance of close working between the professions. I am sure that that is something Health Education England will consider carefully. I will write to the noble Lord if I can add any useful detail once I have had a chance to investigate further the issues that he raised and once I have discussed them with my officials.

However, I point out, as the noble Baroness, Lady Wheeler, did in our earlier debate, the importance of the recent commitment entered into by 12 of the national leaders of health and care, who signed up to a series of undertakings on how they will help local areas to integrate services. This was the document Integrated Care and Support: Our Shared Commitment—the first ever system-wide shared commitment. That document set out how local areas can use existing structures such as health and well-being boards to bring together local authorities, the NHS, social care providers, education, housing services, public health and others to make further steps towards integration. The ambition here is to make joined-up and co-ordinated health and care the norm. It works towards the first ever agreed definition of what people say good integrated care and support looks and feels like. That will be developed by national voices. There will be new pioneer areas around the country, to be announced in September of this year. One of the 12 partners of that shared commitment is Health Education England.

I hope that the noble Lord will be reassured by what I have said. I am entirely in tune with the spirit of his remarks. I will be happy to write to him if I have further and better particulars to impart, but for now I hope that he will feel able to withdraw his amendment.

Care Bill [HL]

Baroness Wheeler Excerpts

Monday 10th June 2013 Lords Chamber

[Baroness Wheeler]

My Lords, we support the amendment. Our amendment on this issue relating to Health Education England’s national role in planning education and training for healthcare workers was considered last week. We were, in particular, keen to probe the role that LETBs will play in that important area.

The amendment would ensure that the annual reports of LETBs specify how they propose to support continuing professional development in that area. We strongly support that. The amendment specifies the medical professions, but it is applicable across the healthcare workforce. CPD is about ensuring that structured learning continues throughout one’s career, with clear objectives set and progress logged and regularly reviewed. CPD complements formal training and enables practitioners and other staff to acquire new knowledge and skills, as well as to maintain and improve their standards across all areas of their practice.

The HEE mandate has a small subsection on supporting the professional and personal development of the existing workforce, underlining the importance of HEE leadership and work with LETBs, but that aspect is far from being given the importance that it needs in the mandate—the point made by the noble Lord, Lord Ribeiro. There is of course emphasis elsewhere in the document on the workforce needing to be flexible and receptive to research and innovation, but CPD is wider than just keeping up to date and applies to values, behaviours and the ability to understand how one’s working role relates to the wider service, as we heard during our earlier debate on integration.

I could not see CPD addressed in any depth on the HEE website, although we join other noble Lords in welcoming the general, across-the-board progress that HEE has made in its new role so far. HEE recognises that providing leadership and ensuring greater transparency in the investment that employers make in their workforce and in supporting and championing multidisciplinary and professional CPD is a strategic priority. Does the Minister agree that HEE needs to step up and develop its CPD strategy as a major priority, and does he accept that the mandate needs better to reflect the importance of CPD?

The HEE website also mentions that it will be allocating a limited amount of central funding for LETBs to invest in CPD, particularly for staff employed at Agenda for Change bands 1 to 4 and equivalent staff employed as part of primary care teams in general practice, community pharmacy and other community-based employers.Does the Minister have any further information on how the Government expect HEE to take this forward with LETBs?

Last week I mentioned the recent member survey by the Royal College of Nursing on CPD, showing how varied the time allocated by NHS trusts is. It is worth going into the findings in a little more detail today. The survey found that in the past 12 months almost a third of respondents had received no CPD that was provided or paid for by their employer. By sector, just a third of respondents in the NHS received no training in the past 12 months, compared to just under a quarter of those working in the independent or voluntary sectors. Just over a third said that the amount of CPD provided had decreased in comparison to the previous year, while 45% said that it had stayed the same.

Interestingly, overall, members working in the NHS were more likely than those working in the independent and voluntary sectors to report that the amount of CPD undertaken had decreased. Obviously, CPD is a mix of both employer-supported and resourced training and personal development learning resourced by the individual, either in their own time or with their own money. However, the RCN survey shows a very worrying trend in the importance employers place on providing CPD. Can the Minister comment on this and on how the problem can be addressed in the future? Is he confident that HEE or LETBs will have the resources to address this problem?

Our earlier amendment was similar to the wording that the Government included in the original Bill but subsequently deleted. I am sure the Minister will explain his thinking behind this and, as the noble Lord, Lord Patel, fully expects, delight us all by announcing that he has decided to put the CPD wording back in.

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

My Lords, I make no apology for repeating my firm belief that the staff working in our NHS and public health system are the health service’s most precious resource. We must do all we can to ensure that staff have and continue to have the right values, training and skills to deliver the very highest quality of care for patients.

Clause 93 requires local education and training boards to publish an education and training plan for each financial year. The education and training plan must set out the local education and training board’s proposed investment in its current and future workforce for the following year. Note the word “current” in this context. In developing an education and training plan, the Bill makes clear that a local education and training board must consult with and have regard to the local priorities of, among others, the NHS and health providers and the commissioners that it represents.

The noble Lord, Lord Patel, asked what level of funding is attached to CPD in the NHS. The answer is that investment in CPD is really a decision to be taken locally. As I indicated, local providers and commissioners are best placed to decide what ongoing professional development their staff need. It will be their job to feed that in to the LETB as the local education and training plan is developed. I have already spoken in reply to an earlier group of amendments about the importance of continuing professional development, and the leadership role that Health Education England and local education and training boards can play in supporting this.

The noble Lord, Lord Patel, and the noble Baroness, Lady Wheeler, asked what happened to the reference to CPD in the draft Bill. The answer is that we widened the description in Clause 84(6) so that the Bill states that:

“HEE may, with the consent of the Secretary of State, carry out other activities relating to … education and training for health care workers”.

This still very much includes CPD. I emphasise that we consider this to be an important part of the way HEE may exercise this power. The NHS constitution sets out that staff can expect employers to invest in their development, and that all healthcare providers must take this issue seriously. Employers have a clear responsibility to provide their staff with the support and personal development they need, as well as access to appropriate training to enable them to fulfil their duties. However, Health Education England will play a crucial role in providing leadership in supporting employers in this area. The mandate sets out that Health Education England will work with LETBs and healthcare providers and commissioners to ensure that professional and personal development continues beyond the end of formal training to enable staff to deliver safe and high-quality health and public health services, for now and in the future.

--- Later in debate ---

[Lord Turnberg]

My Lords, the point of Amendment 63, which is in my name, is the need for the HRA to emphasise transparency in the reporting of clinical trials because patients and the public must have confidence that research in which they have been involved will be used in the best way to spread the message for the good of other sufferers. They have to know that results, whether negative or positive, are published. As my noble friend Lord Warner has said, it is particularly important if they are negative, for at least two reasons. First, it is to stop the unnecessary, wasteful repetition of the research by others who are unaware that it has already been done. Equally important is to prevent a bias in reports towards research that shows only that a new drug works when other, unpublished, research shows that it does not. This is particularly important when we consider what is called meta-analysis, whereby an analysis is made of all relevant published reports, brought together to provide a large database on whether a drug works or does not. If only the positive results are reported, we have a biased result at the end, which could result in all sorts of problems.

Open access to research data provides researchers with a much better picture of their field than if research results are held too closely to the chest, perhaps by researchers jealous of their findings or by drug companies fearful of rivals gaining an advantage. It is heartening to know that GSK seems to have learnt the lesson: it is the first pharmaceutical company to lead the way in transparency. Members of the Association of Medical Research Charities make it a condition of their grants that results are published. We are pushing on an open door and we just need the HRA to have some capacity to ensure transparency in NHS research.

[Baroness Wheeler]

My Lords, I support Amendments 58 and 63. It is right for my noble friends Lord Warner and Lord Turnberg and the noble Lord, Lord Patel, to press the Government on this important issue. As we have heard, the Joint Committee proposed including the promotion of transparency in research and ensuring full publication of the results of research—consistent with the preservation of patient confidentiality—in the Bill and we strongly support this.

This is our first opportunity to welcome the establishment of the Health Research Authority as a statutory body and we do so wholeheartedly. We recognise the vital importance of research and innovation to the NHS, the very real progress that is being made in these areas and the scale and pace of change in medical science. The HRA’s objectives not only promote and protect the interests of patients and the public in health and social care research but ensure that it is ethical and safe research, which inspires the public confidence that my noble friend Lord Turnberg spoke about.



Alongside other bodies, the HRA has a key role in promoting transparency, and we acknowledge that its recent guidance on how it will undertake this role sets out important measures that will go some way towards underlining that it takes its duty seriously. These include: gaining approval from research ethics committees before clinical trials can go ahead; a new timescale for registrations; the commitment to work with research funders and sponsors to set the standards for the publication and dissemination of research outcomes; taking steps to facilitate further analysis of detailed data; and plans to look at how patient consent forms can be amended to provide early consent and understanding on how data will be used, as well as how the HRA will be informed of the outcome of study findings.

There is no doubt that the HRA is committed to working with others to overcome barriers to transparency and create a culture of openness. The amendment and Amendment 63, which provide for the publication of research findings “fairly and frankly” and transparency in the reporting of clinical trials, would enshrine the HRA’s commitment in statute, and ensure that clinical research benefits patients and that the findings are available for others to learn and benefit from. As we have heard from my noble friend Lord Turnberg, the advice of the Association of Medical Research Charities to its members to ensure that there is a requirement to publish in the terms and conditions of all their research awards has played an important role in providing greater transparency and would be reinforced by greater HRA authority in this matter.

Finally, like other noble Lords, I received a valuable briefing from the National Advisory Council to the Thalidomide Trust on the need for transparency and a change in the law for the disclosure of clinical and healthy volunteer trial data in relation to the drugs available on the market. The briefing states:

“Adverse effects caused by drugs that are designed to lead to a health improvement can be difficult to prove, and easy for the pharmaceutical companies to dismiss ... At the core of the problem is the fact that the safety assessments of a drug, undertaken in clinical trials done prior to the drug’s launch, remain hidden once the drug is on the market. A patient experiencing adverse effects therefore has no access to data that could be used to prove their claim … the onus is on patients to prove it was a drug that harmed them rather than the company that already holds that evidence”.

The Thalidomide Trust proposes changes to the informed consent form to allow sharing of anonymised data and making data from clinical trials available and accessible to the public once a drug has been released on the market. The trust acknowledges that this is a difficult issue. Have the Government had any discussions with the trust on this matter? I should be grateful if the noble Earl would comment on this, either today or in a written response.

[Lord Phillips of Sudbury]

My Lords, perhaps the noble Earl will tolerate a short intervention. I was for 30 years a trustee of the charity the Public Interest Research Centre. I think I am correct in saying that in the 1970s and 1980s it was the only independent charity carrying out extensive research on the matters under discussion here. I agree with every word said by the noble Lords, Lord Warner and Lord Turnberg, and the noble Baroness, Lady Wheeler. There is, to some extent, a disparity of arms between the huge pharmaceutical companies and the regulatory authorities. Frankly, I see no harm and some potential good in the amendments to try to rectify the balance of power and to avoid a repetition of the example given by the noble Lord, Lord Warner, which is extremely sobering but by no means unique. A number of instances that we confronted in the 1970s and 1980s mirrored that example, if not on quite the same scale.

Health and Social Care

Baroness Wheeler Excerpts

Wednesday 5th June 2013 Lords Chamber

[Earl Howe]

Again, my noble friend asks an extremely good question. The year-on-year success of public health interventions to address non-communicable diseases, for example, will be measured through the public health outcomes framework. The department will incentivise some of the indicators in the public health outcomes framework through the health premium incentive scheme. Some of the indicators that will be selected may contribute to prevention of non-communicable diseases.

[Baroness Wheeler]

My Lords, on social care, the charity Mind has pointed out that many people with mental health problems are never properly assessed to see if they need social services, such as having somebody to help with admin or household tasks, or with washing, dressing or something meaningful to do during the day. Is the Minister confident that the outcomes framework is robust enough to measure this problem, and how does he think that local councils will be able to address this issue in the light of the £2.7 billion cuts that they will have had to their adult social care budgets by the end of this spending round?

[Earl Howe]

My Lords, the adult social care outcomes framework was put together with a great deal of help and support from local authorities, so we hope that there will be a great deal of buy-in to it. It has as its focus high-quality care and promoting people’s independence and well-being, and it enables councils to make comparisons, assess scope for improvement and measure progress against their own local priorities in adult social care. Therefore, the virtue of the outcomes frameworks is, above all, transparency and accountability, leading to improved quality of care as defined locally by councils.