(10 years, 3 months ago)
Lords ChamberMy Lords, I would like to place on record my thanks to all noble Lords for the spirit of collaboration and constructive criticism that has characterised our formal and informal discussions leading up to this moment. Your Lordships examined the Bill thoroughly when it started in this House, and made many excellent proposals as to how it could be improved. Many of these were taken up in the other place, and I believe that we now have a better Bill before us. Noble Lords’ suggestions have influenced not only the Government’s amendments but also the surrounding policy and our proposals for forthcoming secondary legislation and guidance.
In moving the Motion on the first amendments made in the other place, I hope noble Lords will think it convenient to consider a number of others, to which no amendments have been proposed. Many are small technical changes to clarify the provisions further and correct previous oversights. Amendments 1, 12 to 31 and 34 to 36 are minor and technical, and do three things. First, they ensure that cross-references to the Children and Families Act 2014 and consequential changes to it are accurately reflected in the Care Bill. Secondly, they include further definitions in the glossary at Clause 79(1) to ensure maximum clarity. Thirdly, they make further changes to fully reflect amendments in this House to remove the requirement for a transition assessment to be requested.
Amendments 2 and 3 relate to the issue of charging by local authorities and simply clarify the scope of the regulation-making powers, as I set out when we considered this on Report. They ensure that regulations can specify where local authorities do have the power to be more generous and contribute to the costs of an adult above the financial limit, as well as where they do not.
Amendment 4 clarifies that the regulation-making power at Clause 25(13) allows the regulations to specify cases where aspects of the care and support plan, including the personal budget, are not required. We have always been clear that there may be cases where aspects of care planning are not appropriate. An example is the inclusion in a personal budget of costs relating to the provision of reablement. This also reflects current practice and we intend to continue this arrangement through regulations.
Amendment 5 allows regulations to specify where certain costs do not have to form part of the personal budget, and thus do not count towards the cap on care costs. Again, it has always been the intention that some care and support provision, such as reablement, should be provided as a universal, free service and therefore should not be incorporated in the personal budget. This regulation-making power is limited to services that the local authority cannot make a charge for, or chooses not to. There is no way that this can apply to general care and support that the local authority can charge for.
Amendments 6 to 8 allow regulations to make provision for cases where a person with a direct payment has a period of fluctuating capacity, so that the local authority could or should, depending on the circumstances, continue with the original direct payment arrangements. This will provide continuity and prevent the direct payment having to be terminated.
Amendments 9 and 10 are technical amendments that address an uncertainty caused by a drafting omission. They make it clear that deferred payments, whether they are deferred charges or a deferred repayment of a loan, can either be paid back in whole or part.
I turn now to Amendment 32, which provides for a broad regulation-making power specific to appeals of decisions made under Part 1 of the Care Bill. This power gives us the flexibility to provide for a range of options depending on further work to ensure that we achieve the outcomes that people have told us are important to them. We will specify the details of the policy in regulations.
Given the changes introduced by the Care Bill, it is vital that individuals have confidence in the care and support system, and that they are able to challenge decisions without having to resort to judicial review. We held a consultation during the second half of last year on how best we could ensure this. Following this consultation, we have recognised the need for change. Amendment 32 will give us the scope to develop with stakeholders detailed proposals for an appeals system, keeping to the spirit of co-production that has characterised our work on other areas of the Bill.
This is an important and complicated issue and we need to make sure that we take time to get the detail right, drawing on experience from other sectors and ensuring that the changes are aligned with the broader changes to NHS and social care redress following the Francis report and the Clwyd review. We are working actively with our various partners and stakeholders to develop our policy on this, and we will consult further as part of wider consultations on regulations and guidance later this year.
As noble Lords may know, the Delegated Powers and Regulatory Reform Committee today reported on the amendments made in the other place to the Care Bill. It made two recommendations in relation to Amendments 32 and 46, which I am pleased to say the Government accept. Accordingly, I have today tabled Amendments 32A to D and Amendments 46A to E to give effect to those recommendations.
Addressing the first recommendation, Amendment 46B ensures that regulations made on the first exercise of the power in Amendment 32 establishing the care and support appeals process would be subject to the affirmative procedure. The remaining amendments respond to the concern of the committee as to the meaning of the reference to “modifying” an enactment. Our amendments spell out that the power is to provide that a provision of an enactment may apply with modifications. Similar amendments are made to similarly worded provisions elsewhere in the Bill to ensure consistency.
The amendments also ensure that where any regulations relating to the appeals process make provision that provides for a provision of an Act of Parliament—that is, primary legislation to apply with modifications—then such regulations must be made using the affirmative procedure. Again, in the interests of consistency, similar amendments provide that certain other regulations under the Bill—which might also provide for the modification of the application of an Act of Parliament —should be made using the affirmative process.
I turn to Amendment 33. Feedback from local authorities is that it would make sense for them to have the flexibility to be able to delegate functions relating to direct payments if they so wish. We agree, and have accordingly tabled an amendment to remove the prohibition around this.
My Lords, I thank the Minister for his full and thorough explanation of the Government’s changes to the Bill since it left this House. We will deal with each issue as it comes up. I will deal with Amendments 1 to 10, 44 and 46 to 51 on the Better Care Fund, and Amendments 12 to 39 on the care and support appeals process.
In light of today’s revelations about the Government’s problems with the aims and operations of the Better Care Fund, perhaps I might ask a couple more questions that follow on from the earlier exchange with the Minister on this matter. The Government’s technical amendments—Amendments 1 to 10, 44 and 46 to 51 —on the fund and achieving integration of care and support between the NHS and local authorities are straightforward. Of course, whether the fund can ever achieve what it set out to achieve looks like a very different matter.
The Cabinet Office review has found that the £3.8 billion fund lacks financial credibility. The Nuffield Trust says that it is based on “flawed logic”. The King’s Fund says that the aim stressed by the Minister earlier to get spending plans in place for the fund in time for the 2015-16 Budget is “completely unrealistic”. Its chief executive, Chris Ham, points out in today’s Guardian what many of us have been stressing all along, despite supporting the principle of and need for the fund; namely, that hospital budgets can be reduced only if much more care is already being provided in the community by GPs, community nurses and staff who are supporting patients in their homes. He says that just cutting NHS hospital budgets now would place,
“additional stress on an NHS already struggling to balance the books and maintain acceptable standards of patient care”.
Surely that is the point. Taken with the huge underfunding of local authority social care highlighted by the Age UK report Care in Crisis that was referred to earlier, this is the underlying problem that has still to be addressed. The fund does nothing to address the huge social care funding gap that has led to the cuts in social care support that Age UK’s report has highlighted, particularly the ending of help with essential tasks for older people, such as eating, washing and getting dressed. Those are the very services that help them remain independent and living in their own homes with a good quality of life.
The Minister says the fund has not been suspended, but there are clearly problems. Can the Minister give us any further details about the Cabinet Office review findings, and in particular the concern about the lack of detail about how the savings will be achieved? What is the timescale for the further review referred to by several newspapers and the specialist press today? Can the Minister explain how progress is to be made in enabling older people to remain active and independent at home or in the community when there is just not the funding or support available to help them?
Finally, on the technical amendments to the care and support appeals process, we welcome the Government’s announcement accepting the two recommendations from the Delegated Powers Committee and fully support these government amendments.
My Lords, I have just one issue to raise, on Amendment 32 and the Government’s amendments in light of the Delegated Powers Committee report. I speak on behalf of a number of people who are grateful that the Government have been able to respond very quickly to this. It is much more sensible for this to be an affirmative instrument rather than a negative one.
My Lords, in view of the press coverage today, perhaps I could ask the Minister to confirm a point. When the Better Care Fund was announced, the intention was that projects would start in April 2015. Is that still the Government’s intention or has the timescale been put back? What seems to me constructive is the move to have more engagement from the NHS in setting up the projects under the Better Care Fund. One key aspect of the Better Care Fund on which it rests is ensuring that there are enough strong and appropriate providers of community services to ensure that older people get the care in the community that they need.
The noble Baroness, Lady Wall, put a question during our earlier exchanges that went straight to this matter. You cannot simply close spaces in the NHS and expect that somehow people will be provided—magically, at a stroke—with services in the community. I quite see why people have leapt on this as a story, but I struggle to see the substantive issue. I go back to a point that was made earlier: how many times have we stood in your Lordships’ House and talked about integration of health and social care as being a desirable end that will deliver better services? It seems to me that the NHS may be questioning some matters to do with budgets. That is not a case for undermining the Government’s whole policy.
My Lords, I am grateful for the contributions of noble Lords. I will begin by clarifying that the Better Care Fund has not been suspended or delayed. My noble friend was absolutely right to say how important and long-awaited this initiative is. Successive Governments and leading health professionals have talked about joining up health and social care for a very long time. The Better Care Fund is a major step to making this a reality. It will be in operation from April 2015, which was always the intention. For the press to suggest that the scheme has been suspended is completely wrong.
The Cabinet Office implementation unit conducted a deep-dive review of the Better Care Fund in six local areas following the submission of draft plans. This was a small sample of the 151 plans across England and was based on initial drafts that have since been redrafted. The review found that the Better Care Fund is generating pace around service integration, but there are areas where improvement is needed. These include insufficient engagement with primary care and acute providers in the development of Better Care Fund plans and a lack of practical detail and clarity about how cashable savings will be released.
Since receipt of the Cabinet Office report, officials have worked with NHS England and the Local Government Association to improve the offer of support for local areas to address the issues that have been raised. To give councils the resources to start making progress immediately, the NHS will transfer an additional £200 million to councils in 2014-15 on top of the £900 million already committed. This funding will be used for social care with a health benefit and to prepare for the introduction of the Better Care Fund.
We are only half way through the planning and preparation process for the Better Care Fund and it is very premature to imply or state that the fund is in trouble—far from it. One would expect different areas of the country to progress at different rates; that has always been the case. Many areas of the country have been integrating services very successfully for a number of years, so it should not be surprising to anybody that some areas need to catch up. We are on the case, and so are NHS England and the Local Government Association. I am confident that, as I said earlier, we are broadly on track in this area.
Authority | Provisions imposing duty or conferring power to meet needs |
---|---|
Local authority in England | Sections 2, 18, 19, 20, 38 and 49 of this Act. |
Local authority in Wales | Part 4 and section 189 of the Social Services and Well-being (Wales) Act 2014. |
Section 51 of this Act. | |
Local authority in Scotland | Sections 12, 13A, 13B and 14 of the Social Work (Scotland) Act 1968. |
Section 3 of the Social Care (Self-directed Support) (Scotland) Act 2013. | |
Health and Social Care trust | Article 15 of the Health and Personal Social Services (Northern Ireland) Order 1972. |
Section 52 of this Act. | |
Authority (within the meaning of section 10 of the Carers and Direct Payments Act (Northern Ireland) 2002) | Section 2 of the Carers and Direct Payments Act (Northern Ireland) 2002. |
My Lords, I shall speak also to the other amendments in my name in this group. They respond to the excellent report from the Joint Committee on Human Rights and follow discussions that I have had with the noble Lord, Lord Low, and others. I am grateful to the Joint Committee and particularly to the noble Lord, Lord Low, who unfortunately is not able to be here today. I extend my thanks to my noble and learned friend Lord Mackay, my noble friend Lord Lester, the noble and learned Lord, Lord Hope of Craighead, and the noble Lords, Lord Pannick and Lord Warner, with whom I have had constructive meetings.
As has been said here and in the other place throughout the passage of the Bill, this Government need to send out a strong message to the sector not to allow abuse, neglect or harm. Our priority must be preventing harm, abuse and neglect happening in the first place.
However, Clause 48 as inserted by this House went too far. It applied the Human Rights Act to all provision of CQC-regulated social care. As the Joint Committee on Human Rights acknowledged, the Human Rights Act is not intended to cover entirely private arrangements. If Clause 48 became law, it would have been the first time that the Act applied directly to purely private arrangements where there is no state involvement. It could have led to other interest groups arguing that they should also be able to challenge private providers on human rights grounds in other spheres.
We still believe that much stronger deterrents are available. Many of the Care Quality Commission’s fundamental standards will include human rights dimensions. These standards will apply to all registered providers of health and social care, and failure to comply with them could be a criminal offence.
However, as I have just said, I am aware of the strength of feeling on this matter and that is why I am today prepared to offer a government amendment which I hope this House can support. The amendment would make it explicit that care providers who are regulated by the Care Quality Commission in England or by equivalent bodies in the rest of the United Kingdom, when providing care and support arranged or funded in whole or in part by local authorities, are exercising a public function for the purposes of the Human Rights Act. I hope that noble Lords will agree that this amendment meets the objectives of the Joint Committee on Human Rights. It makes it clear that providers of publicly arranged or funded care and support, both residential and non-residential, provided on behalf of a local authority to an individual, are bound by the Human Rights Act.
The Government were unable to accept the JCHR amendment as it was drafted for technical reasons. The Human Rights Act is an entrenched enactment which the devolved legislatures cannot modify, but its application should be the same across the UK. Government Amendment 11B therefore applies the legislative clarification to Wales, Scotland and Northern Ireland.
It is important to bear in mind that the scope of application of the Human Rights Act matters to lots of other people beyond the care sector. The Government believe that it is not appropriate to pick and choose which people or bodies are expressly made subject to the Human Rights Act. That is why I want to make it clear that this amendment would not set a precedent for any future occasions where there are perceived to be gaps in the coverage of the Human Rights Act. I hope that this amendment will be welcomed. I beg to move.
My Lords, I apologise to my noble friend for having missed the first few sentences of his speech. However, I heard the substantive part of it.
First, may I say on behalf of the Joint Committee on Human Rights, which met this morning, that the committee is absolutely delighted by how the Government have reacted to the problem that was raised in this House by the noble Lord, Lord Low, and many others, and which led to an amendment that—on reflection—was too strong? The amendment now tabled meets the problem admirably. The problem was created by an unfortunate decision of the Law Lords—by three to two—in the case of YL. As the Minister will know, the previous Government, like the present one, had been looking for an opportunity for that unfortunate judgment to be reconsidered in a suitable test case. However, no such case has arisen. The pity of it is that the whole point of the Human Rights Act was not to have a list of bodies that would be subject to the Act but to have a good, flexible test that would be fact-sensitive and would apply without the need for amendments of this kind. Unfortunately, no such test case has arisen where the matter could be properly decided, and therefore one has in a sense to use Elastoplast—sticking plaster—to deal with particular problems.
We quite understand the Government’s reservations about this being regarded as a precedent. As the Minister knows, ideologically there are some for whom the words Human Rights Act are almost anathema; that is why it required a certain amount of discussion to get to the present situation.
The Joint Committee sought clarification on just one matter. I do not think there is a problem; it is rather a matter of seeking confirmation that the Government intend the amendment to cover social care provided by a regulated provider and paid for by direct payments. It is not absolutely clear from the amendment that that is so. We think that it is so but is that correct? Do the Government intend the amendment to cover social care paid for by direct payments, provided that the care is purchased from a regulated provider? I am speaking extremely slowly, in order that others may be able to answer. No doubt others will want to say something about this amendment as well, but if that point could be confirmed in the Minister’s reply it would be very helpful. Nothing that I have said, however, should mask the delight we feel that this problem has been solved in this manner.
My Lords, I would like to say a few words about this group of amendments.
First, I thank the Minister for his helpful explanation. I particularly want to say some things on behalf of the noble Lord, Lord Low, who very much regrets that he is not able to be here this afternoon. His amendment sought to make it clear that the provision of regulated care was a public function for the purposes of the Human Rights Act, within the umbrella of Section 6(2)(b) of that Act. As noble Lords know, it was not accepted in the other place and we now have a government amendment which deals with that issue in rather different terms. It is a happy state of affairs to have that amendment in place.
The noble Lord, Lord Low, has authorised me to say two things. First, he very much welcomes the amendment and, secondly, he has asked me to express his appreciation for the way the Minister and his colleague in another place—Norman Lamb—have listened to the views in both Houses and have worked very hard to secure an agreement on the current amendment across government. The noble Lord, Lord Low, appreciates all the work necessary to achieve that, and he wishes me to stress his grateful thanks. I associate myself with these remarks.
Perhaps I may say one or two things in the light of what the noble Lord, Lord Lester, said about the case of YL. That was a decision by the United Kingdom Supreme Court, not by the Law Lords in this House. It was a decision by the justices by majority, and there it is. That decision stands as good authority for the point that it made, which was that while the regulation of privately provided care by a local authority was a public function, the private provision of care itself was not. The interesting point about the case arises at the very end where the noble and learned Lord, Lord Neuberger, said that if the legislature was unhappy with the decision and thought it appropriate, it would be right to spell out in terms that Section 6(2)(b) of the Act applied to private bodies whose provision of care and accommodation was funded by a local authority. That was what he was thinking at the time. The point he was making was that there would be a mechanism for dealing with particular problems in a particular way. That solution has now been worked out by the Government in the way that we see before us.
I respectfully suggest that by doing this, the Government are not setting a precedent. So far as the judges are concerned, they would not regard it as such at all; the precedent is in the Act itself and is doing precisely what the noble and learned Lord, Lord Neuberger, had in mind. I do not regard it as any disadvantage to do it in this way; it is very satisfactory that it has been achieved as it has. It is a precisely targeted measure which, as I have been trying to explain, is exactly what the noble and learned Lord had in mind.
I hope that I might be permitted to ask three short questions. I apologise to the Minister for not having given notice of them, due to the short time available since the amendment was circulated. The first relates to the list we see in the table at the end of subsection (3) of the new clause, which seeks to set out the list of the authorities to which the measure applies and a list of the functions intended to be covered by the measure. The question is, simply: can we take it that the intention is that this list should catch all the circumstances where care or support is arranged or paid for by the authorities listed there? We have not been able to check this for ourselves but I assume that that is the intention. It would be helpful if the Minister could simply confirm that that was what was being intended.
The second question relates to situations where a personal contribution, of whatever kind, is made to the cost of the care or support arranged by the authority. The arrangement is the authority’s but the individual makes some contribution of his or her own. Again, it is a short question: can we take it that the requirements to which that subsection refers will be met in that situation, the critical point being that it is the public authority that has made the arrangement? I would have regarded that as the touchstone as to whether or not this provision applies.
The third question is rather related to that, and to the content of the care package that is being provided. There may be cases, for example, where people with learning disabilities or mental health problems may need some assistance to enable them to participate in the activities that are being provided or get access to them. This question is similar to the second one. Can we take it that here, too, although these people are somewhat outside the scope of the other statute, the position nevertheless is that because it is the authority making and regulating the provision, the provision will apply to it?
These points aside, on behalf of the others on these Benches who have participated in these debates, I express my great thanks to the Minister and all those who have been working very hard to achieve the happy result that we have this afternoon.
My Lords, if it helps the Minister as he waits for some assistance in his response, I speak as one who has taken part in many of the discussions over the years. The Minister was right to acknowledge the work of a large number of people. One person who should be added to his list is the noble Baroness, Lady Greengross, who has worked tirelessly on this matter for some time. It is a measure of how long this debate has been running that when we first began to discuss it in this House, there were no direct payments for social care to anybody. Therefore, the matter did not arise. It is therefore extremely helpful that the Joint Committee on Human Rights has posed the question that it has. When we started, the scope to argue over what was a private arrangement and what was a public function was considerably less than it is now. Now, someone who has been assessed as needing and being entitled to social care may make an arrangement with a family member using a direct payment, but the question of whether it is a public function that is being discharged is still the one that goes to the heart of whether the Human Rights Act applies. It is extremely helpful that the Joint Committee has raised that question. Having got this far to overcome what has long been acknowledged as a tremendously unfair anomaly—whereby one older person in a residential home has rights and the person in the next room does not, simply because of who arranged, rather than funded, their care—let us get it right, at last.
My Lords, as I took part in the debate in this House that secured the original amendment to the Bill, I should very much like to associate myself with the remarks of thanks to my noble friend Lord Howe and to Norman Lamb and others in the other place. I think the root of this difficulty was the decision of this House from which Lord Bingham dissented. That was an indication that the decision might require revision in due course.
My Lords, on behalf of learning disabled people and other vulnerable people I should like to thank the Government for making this amendment, which certainly ensures that their care will be greatly attended to in the future.
My Lords, briefly, I also support the Government’s amendment on this long-running but vital issue. As the House knows, we strongly supported the need for the amendment. We, too, warmly congratulate the noble Lord, Lord Low, on his dogged determination and efforts to achieve this outcome. We also thank noble Lords from across the House who have helped to bring this about. On these Benches, we recognise that this was very much unfinished business from the Labour Government. We congratulate the Minister on the hard work he has put into finding a way forward and to getting cross-government departmental agreement, which has been important. We recognise that the amendment is a very significant step. I was going to ask for clarification on a couple of issues, but they have been raised in the debate so I shall leave it there.
My Lords, I am naturally very pleased by the welcome that these amendments have received from around the House. I should like to thank those noble Lords who have spoken for their extremely helpful remarks, not least the noble and learned Lord, Lord Hope of Craighead, and my noble friends Lord Lester and Lady Barker.
My noble friend Lord Lester asked me whether the amendment covers social care provided by regulated providers paid for by direct payments. The answer is yes, it does. The words used are: if the local authority pays “directly or indirectly”. “Indirectly” is to cover direct payments when the local authority provides the money to the individual who then goes to the regulated provider him or herself. I hope that clarifies the point.
The noble and learned Lord, Lord Hope of Craighead, asked me three questions. First, he asked whether the intention is that the list in subsection (3) of the new clause should cover all care paid for by all local authorities around the country. Yes, that is the intention: all relevant regulated care and support across England and the devolved Administrations is included in the list. It is our intention that the effect of this clause should be the same across the UK. We have worked very closely with the devolved Administrations to ensure that this is the case as far as possible. There is a potential source of confusion in the wording because in Scottish legislation social care is referred to in different terminology, but the net effect of what we are doing should mean that this applies in an even-handed way across the country.
The noble and learned Lord’s second question was: where a personal contribution is made towards the cost of care, will those situations be covered—that is, a situation where the public authority has arranged the care? Yes, the wording in new subsection (3)(a) in the new clause includes the words,
“paid for (directly or indirectly, and in whole or in part) by such an authority”.
In other words, even if the local authority funds only part of the care, it will be covered.
The noble and learned Lord also asked about the content of the care package and whether the fact that the local authority is providing the care means that those with learning disabilities and mental health issues are covered. All those who are receiving regulated care and support arranged by the local authority will be covered. That includes situations where the local authority itself is providing the care or support. That is the existing situation, the amendment does not change it and these people remain fully covered.
My noble friend Lady Barker asked whether the effect of what we are doing means that the provider is performing a public function. Yes, any provider covered by this amendment would be carrying out a function of a public nature in that instance. I hope that I have covered the questions as fully and clearly as noble Lords would wish, and I beg to move.
“Child’s carer’s assessment | Section 61(2) |
Child’s needs assessment | Section 59(2)” |
“Parent | Section 59(6)” |
“Young carer | Section 64(6) |
Young carer’s assessment | Section 64(2)” |
My Lords, I shall also speak to the other amendments in my name in this group. The trust special administrator regime is of course not revolutionary or new, but was set up by the previous Government in 2009 as a way of dealing with exceptional and intractable failure at NHS provider trusts. Your Lordships will also know that, since the addition of provisions for a single failure regime, which we have discussed previously, a foundation trust could be placed into special administration both for quality as well as financial failures, in the same way that an NHS trust could be. We are strengthening the regime through changes made in the Bill but this does not change the fact that it is only to be used in cases of significant failure.
There are various actions that could happen before the regime is even considered. For minor concerns at an NHS trust or foundation trust, the CQC will use its inspection reports and ratings to highlight concerns and to call for improvement. Breaches of fundamental standards could lead to a trust being prosecuted, or a penalty notice in lieu of prosecution. Where there are serious failings, the CQC will issue a new warning notice, requiring the trust to make significant improvement within a specified time. Monitor and the TDA also have a range of intervention powers; for example, Monitor is able to remove, suspend or replace foundation trust governors or directors. Monitor and the TDA can also place trusts into special measures, which includes partnering with a high-performing hospital, regular publication of improvement plans and a full leadership review.
Also, providers and their commissioners are expected to review the way that local clinical services are configured in the best interests of patients and in the context of quality and financial challenges. While a locally led service reconfiguration is not a panacea for all the challenges facing a provider, we would none the less expect options for reconfiguration to have been rigorously assessed. Ultimately, however, if it is impossible for a trust to turn itself around, it will be necessary to place it into the special administration regime, in order to safeguard taxpayer funding and the interests of patients. Trust special administrators would be appointed—and I make this point emphatically—only when all other suitable processes to develop sustainable, good healthcare have been exhausted.
That is the background to these amendments. I turn now to the amendments made in the other place. Amendment 41 would require any trust special administrator to consult formally other trusts, their staff and commissioners, who may be affected by his or her draft recommendations. This would match the extended remit of the administrator under Clause 118 with an express wider consultation requirement, ensuring that the final recommendations are informed by a proper understanding of the issues facing the entire local health system. Amendment 41 would also strengthen public and patient representation in the regime by requiring the administrator to consult local authorities in whose areas affected trusts provide services and local Healthwatch organisations in those areas. Amendment 43 is a minor and technical amendment. I hope that noble Lords will agree that the changes made in the other place further strengthen the regime and will offer the amendments their support.
I turn now to Amendment 41A tabled by the noble Lord, Lord Hunt, and Amendment 43A tabled by the noble Baroness, Lady Finlay. I hope that they will forgive me for addressing these amendments before they have been spoken to. The key underlying aim of these amendments is one with which I have complete sympathy, and I am grateful for the opportunity to make that clear in your Lordships’ House. It is absolutely the Government’s intention that essential services at other affected trusts should be respected during the process of trust administration just as much as the essential services at the failing trust. However, both amendments seek to achieve that aim by adding additional statutory objectives for the trust special administrator. I hope it will be helpful if I explain briefly why that is unnecessary and unworkable in practice.
My Lords, my amendment is Amendment 41A. As this is a new stage of the Bill, I declare my interests as a consultant and trainer with Cumberlege Connections, president of GS1 and chair of a foundation trust.
I am grateful to the noble Earl, Lord Howe, because we have clearly come quite some way since he introduced at Third Reading in your Lordships’ House the amendment relating to the rules on hospital closures. I hope, however, that he might see his way to moving a little further this afternoon. Closing hospitals is never an easy thing to do and I see a number of former Ministers in your Lordships’ House who bear the scars of hospital closure decisions. In my view, there is no doubt an urgent need to reorder and reconfigure services to allow for the centralisation of many specialist services to improve patient outcomes. Where the clinical evidence is persuasive, I would always support those service changes. We need to be more wary where service changes take place purely on the grounds of financial problems in a particular trust, especially if those changes have a negative impact on well run neighbouring services, where consultation is truncated and if there is an uneven playing field between the different commissioners—which is the subject of the amendment of the noble Baroness, Lady Finlay.
This all arose because of the problems in the use of the special administrator mechanism in the case of Lewisham. The South London Healthcare Trust was in huge financial difficulty; a special administrator was appointed and recommended that Lewisham hospital should have its A&E department downgraded and lose some other services as well. This caused outrage locally because Lewisham was not part of the South London Healthcare Trust, but was a well run and popular hospital, pitchforked into helping to solve a problem that was not of its own making. This ended up in the courts, which found against the special administrator and the Secretary of State. The judge concluded that the Lewisham GP commissioners had not given support to the proposal, which consequently constituted an additional reason why the decision of the Secretary of State could not stand.
The noble Earl, Lord Howe, always reminds the House that the legislative power that was used in the case of Lewisham was enacted under a previous Government. Indeed it was, but I stress that the original power was designed for something entirely different. It put in place measures to dissolve and rescue a trust through administrative reconfiguration. We never saw it as a vehicle for back-door reconfiguration across the health economy. The concern about Clause 118 is that it could allow hospitals to be downgraded or closed simply because they happen to be near a failing one.
I have listened carefully to what the noble Earl has said about the uses of this power. In both Lewisham and Staffordshire, where the power has been used in relation to the previous legislation that the noble Earl has amended, it has run into considerable trouble. In Staffordshire, where the process has also been used, an announcement was made in the last week or so that it has been put on hold. Essentially, the proposals of the special administrator have been roundly rejected by the local community, which shows the issues and problems when this mechanism is used to reconfigure services rather than simply deal with an immediate financial problem of a trust in great difficulty.
In the debate in the House of Commons, there was obviously much concern about this. The Government agreed that a committee should be established, under the chairmanship of Mr Paul Burstow MP, to produce guidelines on the trust special administration process. My amendment is simply designed to give those guidelines some statutory force. The decision of the Government to agree to this was very important and I am sure that, when the guidelines are produced, they will be sensible and set the context in which this mechanism can be used in the future.
However, my argument to your Lordships this afternoon is that it would give even more assurance if those guidelines had to come before your Lordships’ House and the other place for scrutiny and presumably for a decision to allow them to go through if they were found to be acceptable. I follow the precedent set by the Mental Health Act 1983, which gives Parliament a veto over the code of practice that provides guidance to those who undertake duties under that Act. The noble Earl has clearly moved a great deal on this issue over the past few days but it would be nice if he moved a little further.
As he responded to my amendment and that of the noble Baroness, Lady Finlay, perhaps I may save time for the House by asking him a question about the amendment that he has tabled in response to the noble Baroness. In his letter to us of yesterday’s date, he said:
“Our amendment would ensure that agreement is obtained from each commissioner on the basis that the administrator’s recommendations meet the objectives of the trust special administration and that they do so without harming essential NHS services they commission from any other affected trusts”.
He went on to say:
“Essential services at other affected trusts would be defined according to the same legal criterion that applies to commissioners of the trust in administration, thereby ensuring parity between all relevant commissioners”.
The wording that I want to ask the noble Earl about is:
“Our amendment would ensure that agreement is obtained from each commissioner”.
Does that mean that any one commissioner therefore has a veto over an eventual decision? That is how I read his letter. If so, does he agree that if that were used in the case of Lewisham, because the Lewisham CCG objected to the proposals, the proposals would not have gone ahead? If he does agree with my interpretation of his letter, how does he square that with what Dr Dan Poulter said in the Commons on 11 March, reported at col. 267? He said that while all local commissioners have an equal say, NHS England will arbitrate in the event of a disagreement. If, in the end, NHS England will arbitrate, that does not fill me with great confidence. NHS England will simply agree in the main with the original recommendations, because I am afraid that that is the track record of NHS England. In order to get absolute clarity here, I wonder whether the noble Earl could clear up any confusion around that.
My Lords, I wish to speak to my Amendments 43A and 43B. I start by thanking the Minister and the Secretary of State for the amount of time they have afforded to me in discussing the concerns that lie behind my amendments. It is indeed correct that I was concerned that one clinical commissioning group commissioning from a failing trust could have a disproportionate say over the future. The government amendment, as tabled, addresses those concerns and I am most grateful to the Government for it. It establishes parity of commissioners by ensuring that there is no harm to essential services. I am also relieved that the Government are stating that the same legal criterion will be applied. Therefore, standard-setting across the services will establish that parity.
One of my concerns relates to the guidance. I would be grateful if the Minister could confirm that the committee of which Paul Burstow is the proposed chair will continue to exist. I think that there has been a lack of confidence among the public as a result of the publicity surrounding what happened at Lewisham. It will be very important that the guidance is seen to be drawn up and reported on separately. I must admit that I am uncertain about the mechanism for that. However, I certainly would be concerned if the detail of how the process is laid out is not openly and independently reviewed. The current guidance has to be rewritten anyway and that process could restore public confidence.
My Lords, I welcome Amendment 40A and I am grateful to the Minister for listening to representations and responding to them. I always thought it was wrong that a special administrator investigating trust A could try to find a solution by plundering the resources of trust B, which was not in trouble, without giving it or its commissioning group the opportunity to make full representations. I also thought it was wrong that the Secretary of State could slip through what was in effect a restructuring of services in an area under the cloak of sorting out the problems in a particular trust.
However, there is a caveat and an unresolved issue that was hinted at by the noble Lord, Lord Hunt. The provision to put the troubled trust and its neighbours on an equal footing in terms of making representations should not be interpreted as giving other trusts a veto on all restructuring proposals. The present set-up of the NHS already provides more than enough pockets of resistance to change that may be necessary to achieve greater efficiency and higher clinical standards.
Such proposals for reconfiguration should be looked at on their own merits, regardless of whether the hospital concerned is a foundation hospital or has been developed using PFI. There should be no presumption that an error by one trust in the amount of debt it takes on should be visited on those who are unlucky enough to be adjacent to it. There could then be a stalemate at the conclusion of this process whereby the commissioners of the adjacent trust do not agree to surrender resources and services. The question then is how these issues are to be resolved, not simply in the context of the failing trust but in the context of the local health geography.
My Lords, we owe a debt of gratitude to the noble Baroness, Lady Finlay, for tabling an amendment to this Motion. I was present at the meeting yesterday, along with the noble Lord, Lord Hunt of Kings Heath, when we had a fruitful discussion on these issues. When I was the Member of Parliament for Orpington these matters were the bane of my life. The South London Hospitals Trust was a huge problem, as many noble Lords will be aware, with debts of around £150 million at one stage. Although at another period of my life I was a Minister for Health, I was specifically excluded from dealing with the problems of London hospitals because I was a London MP. It is ironic to get to a position of power where you might actually be able to do something for your constituency but then to be disempowered from dealing with it at all. None the less, that is the proper way to proceed.
It is worth bearing in mind that we have now got to a sensible position whereby there is parity in consultation, understanding and agreement between a commissioning group affected by the hospital trust’s special administrator and one which may be outside the trust and, therefore, nominally unaffected by it. Parity of esteem is the effect of the amendment tabled by the noble Baroness, Lady Finlay. I am grateful to the Minister for responding so positively on these matters: we have now reached a very sensible position. However, we should not believe that that is enough. It is a necessary condition for resolving some of these problems but it is not sufficient. Ironically, in the case of Lewisham and the South London Hospitals Trust, there was a very good consultation, called A Picture of Health, which lasted for two years and encompassed all the hospital trusts in south-east London. It was very extensive—and expensive, if I may say so—but it came to the wrong conclusion. The conclusion was that Lewisham should continue as a hospital trust on its own and that the other three principal hospitals—Queen Elizabeth, Woolwich, Princess Royal University Hospital, Bromley and St Mary’s, Sidcup—should all be put into one huge trust. That never worked and that particular trust has had to have special measures to deal with its financial problems.
That excellent consultation ultimately reached the wrong conclusions. Ironically, the rather more short-circuited consultations conducted by the special administrator led to rather better conclusions. We now have a solution on the Bromley side of things, as it is now a part of King’s College Hospital NHS Trust. It has effectively been taken over by it, which is a very sensible arrangement. St Mary’s, Sidcup is now doing other things—quite rightly because it is an old hospital and did not really have the facilities to run an accident and emergency department in the way that a modern hospital needs to do. Woolwich has been put in with Lewisham. We therefore have the makings of a better solution despite inadequate consultation. It shows that we do not merely need good consultation with everyone understanding what is happening; we need somebody to reach the right conclusions at the end of the day. I am referring here to the remarks made by the noble Lord, Lord Turnbull. He is absolutely right that there needs to be a way that the public interest—as well as the understandable more local interests—can be reflected, otherwise we will never make real progress.
The noble Lord, Lord Hunt, made the important point that there are really big problems. We all have scars resulting from the closure of hospitals that sometimes have to be closed. He will be aware of the report last year by the NHS Confederation, the royal colleges and the organisation representing the patients’ voice, which said that up to 20 general district hospitals in this country need to be closed if we are to have a sustainable hospital service and a sustainable NHS. If we do not close those hospitals over a period, after consultation and so on, we will be taking money away from other parts of the NHS, such as mental health and GP services, which are badly needed. We cannot afford to keep hospitals going when they are in need of change.
The way in which change needs to happen is becoming apparent—there is a general consensus. First, there should be more specialist hospitals. I note that the King’s Fund says that A&E departments, maternity care, neonatal services, heart services and stroke care are all areas where specialist hospitals can give better care than general district hospitals do at the moment. That is already happening in London, certainly in the case of stroke care. The number of hospitals has been reduced and stroke care has immeasurably improved, I think to the tune of 50% over the previous two or three years. Equally, of course, the other aspect of this improvement is bringing care back to the community and taking it away from hospitals. People do not want to go to hospital; they think they will get an infection or a disease, apart from anything else. People die as a consequence of being in hospital. We therefore need to bring care back to the community. However, all of that takes time.
I therefore agree with the noble Lord, Lord Turnbull, that we cannot allow ourselves to get into a situation where everybody defends every brick of every local hospital. We all know what happens. As soon as there is a threat to a local hospital the local MPs and the local newspapers get on their high horse, the campaigners come out and there are parades down the street, and no one can move an inch. I hope that noble Lords can see this legislation in the round. It provides for the proper, equal consultation of all interested parties, but we should not put road blocks in the way of necessary change in the NHS. If we do, we will have done the NHS a very bad service.
My Lords, I add the thanks of the Liberal Democrats to those that have already been offered for the help from the Minister and his officials since this matter was last discussed in your Lordships’ House. There have been a number of meetings and an enormous amount of correspondence during that time. A key part of that has been the definition of “consultation”, and how to ensure that services in another trust area rather than only an adjacent area are considered. I am particularly grateful because the amendment tabled by my honourable friend Paul Burstow in the House of Commons is broadly the same as today’s government amendment. I thank him too for his tireless work in expanding this. I very much appreciate the comments made by the noble Lord, Lord Hunt, in his amendment, which try to strengthen that.
However, I am not convinced that there is a need for further strengthening. The committee is there, and I hope that the Minister will be able to confirm that, following the request made by the noble Baroness, Lady Finlay. The committee is there to help set things up and ensure that the progress made as the special administrators start their work takes place in an appropriate fashion, and that every aspect of the consultation—which clearly has worried your Lordships—is addressed.
I want particularly to come back to the point about not considering only adjacent services. Much of the discussion this afternoon has been very focused on London, for fairly obvious reasons. However, there are issues around reconfigurations in rural areas, which do not mimic the pattern of a large number of hospitals in a fairly narrow space. Services may be much more scattered. That is why the word “adjacent”, to which others have referred, is not particularly appropriate. Quite often people will find themselves going not only to one area but beyond that area for a very particular service. It is important that the amendment laid down by the Government today makes it absolutely clear about the extension of consultation with those affected trusts.
My Lords, the disease with the greatest economic impact on the NHS is the disease of inertia. As the Secretary of State, Jeremy Hunt, pointed out in the other place during the debates on this issue, we are now four years on from the very public exposure of the problems of Mid Staffs and we have not yet made a decision. The trust administration procedures are indeed invoked only as a very last resort, but they are a very necessary one. I am very worried because, although the noble Lord, Lord Hunt, thinks that this government amendment does not go far enough, I am afraid that I think that the government amendment as it is goes quite a long way. I was much happier with it before we all started meddling with it.
The real issue is that we must start to make decisions, and we are not making decisions. We are allowing services to carry on producing bad care. We are allowing them to get into debt, which means transferring money from good services. It is almost never possible to reconfigure a bad service out of one hospital, or indeed to shut one hospital or service, without a substantial reconfiguration of services in another hospital. Unfortunately, it will always impose on the wishes of commissioning groups in another adjacent location or a little further down the line in a rural area.
I will, with reluctance, accept the Government’s amendments, although they add a little more consultation to the process. Please, however, let us go no further than that, and please let us not support the amendment of the noble Lord, Lord Hunt, which in my view would take us even further away from where we want to be.
I support the view that we ought not to have too many impediments to effective action. When this matter was first raised in this House, when the Bill was being considered, the amendment dealing with a special administrator came in very late and there was a certain degree of feeling that it should have been dismissed. But I am glad to say that the House decided to continue with it, and of course the matter has been carefully and fully considered in the other place.
The procedure for special administration may be needed quite urgently in some places in the not-too-distant future. I hope not, but there is a risk of that. Therefore, it is extremely important that we have an acceptable, effective service and provision in position to deal with the special administrator and his powers as soon as possible. I thank my noble friend and his colleagues for advancing to this extent.
My Lords, this has been an extremely helpful debate. I first pick up a point emphasised by the noble Baroness, Lady Murphy. Trust special administration is indeed a last resort, which was why I took care to spell out the other steps that we might expect to have taken place before administration is even considered. But the previous Government realised, rightly, that we have to have a mechanism in statute designed to deal with long-standing and apparently intractable situations in provider trusts—and not just to have a mechanism of that sort, but one that provides a reasonably swift resolution to the problem of significant failure.
The previous Government provided for a defined statutory timetable for the TSA process and they were absolutely right to do that. Indeed, as the noble Baroness, Lady Finlay, generously acknowledged, her own amendment, had it been accepted, would allow other affected commissioners to consult the public further about the administrator’s final recommendations. Consultation would be through the usual NHS process, taking about 12 weeks. It would fall completely outside the timetable of the trust special administrator and the net effect of such a change would be to reverse the effect of Clause 118. The administration regime would not be creating a complete and timely solution to the problem. It would render the strict legal timetable for the regime ineffective and delay what would be an uncertain resolution very significantly. I hope that noble Lords will not wish to follow that part of the noble Baroness’s amendment. I was glad to hear her say that she would not be moving it.
The noble Baroness asked me whether the committee to be chaired by Paul Burstow on the guidance will continue. Yes, it will. The Government’s commitment in relation to a committee chaired by my honourable friend to review the guidance still stands. The guidance is still important for setting out in detail how the statute should operate. The Government believe that there is significant value in advice from the committee about the guidance. She was right to say that that process should give the public and patients confidence that this is not a set of guidelines dreamt up by Ministers and civil servants on their own.
The amendment of the noble Lord, Lord Hunt of Kings Heath, suggests that the guidance should be laid before Parliament. I need hardly say that that idea falls considerably outside what is usual practice. It is not usual practice to lay statutory guidance before Parliament in the way that the amendment envisages. However, in recognition of the keen interest of parliamentarians in both Houses, we invited my honourable friend Mr Burstow MP to chair a committee of MPs and Peers to consider the guidance. I hope that that mechanism will be sufficient for the kind of buy-in from patients and the public that I have referred to, and will command confidence.
The noble Lords, Lord Turnbull and Lord Hunt of Kings Heath, referred to the situation where commissioners or providers declined to accept the administrator’s recommendation. The noble Lord, Lord Hunt of Kings Heath, asked whether a clinical commissioning group has a veto. Each commissioner of services provided by the trust under administration and affected trusts has to give agreement for the draft and final TSA reports to go forward, but NHS England has a role—which is already in statute—in deciding whether to agree the TSA reports if not all the CCGs agree. I believe that that is right. We cannot expect or oblige every CCG to agree to the TSA proposals in every single case. There has to be a way of resolving any lack of unanimity and this is the mechanism that we believe is right.
My Lords, perhaps the noble Earl will clarify that. If we take the case of south-east London referred to earlier, the trust special administrator would have produced its report, which the Lewisham CCG would not have agreed to, and so the TSA would not have had an agreed report. I suppose the risk is that NHS England or its regional office or a combination of local area teams would none the less have said that they would process the report, even without that agreement. As the noble Lord, Lord Horam, said, the eventual outcome was actually much better than the original recommendation by the trust special administrator.
My Lords, that last statement is a matter of opinion. We will have to see how the situation pans out. I do not want to make any judgments here and now, but I think there is a difference of view about that.
However, if one or more commissioners does not support the administrator’s recommendations, under existing legislation NHS England can still agree them, if, in its view, the recommendations achieve the objective of the trust special administration. Under our amendments, NHS England has that same role, but its decision would also be in respect of whether the recommendations harm essential NHS services at other affected trusts, and would look at both the definition of essential service and the existence of any harm. NHS England can therefore take into account the views of the commissioner which did not provide support on the basis that it felt the recommendations damaged the essential services that it commissions, and it would then decide whether the argument is convincing.
The noble Lord, Lord Turnbull, took that situation to the extreme and asked what happens if complete stalemate ensues between CCGs. In what we believe would be the unlikely event that a CCG made a decision which amounted to a failure to discharge its duties to act consistently with wider NHS imperatives, there are powers of direction by NHS England to ensure that those duties are discharged properly—but I emphasise that that would be a drastic and unexpected situation.
This regime is about ensuring that the TSA works closely with and consults formally all affected commissioners and providers so that they can input into, agree, plan for and adapt to any recommended pattern of services. CCGs must act consistently with the duty of the Secretary of State and NHS England to promote a comprehensive health service. Given that duty, we would expect CCGs to work closely and constructively with a TSA to avoid what one might call parochial decision-making and to take into account broader considerations for the delivery of publicly funded services in the interests of patients and the taxpayer.
In the end, the NHS must do the greatest good for the greatest number of people. On occasion and in exceptional circumstances, where a TSA is appointed, commissioners and providers may need to see local service change as a means of improving NHS services in the local health economy. I hope that those remarks are helpful by way of explanation and background to these amendments.
My Lords, this group covers issues relating to health and care data. I will speak to Amendments 45, 49 and 50. The Government are fully committed to the principles of the care.data programme and to the core principles that underpin its use, namely: to promote transparency in the quality of health and care services while at the same time protecting privacy and confidentiality; to promote health and care research; and to better integrate health and care services.
The data collected across health and care in England are the envy of the world. The care.data programme offers the ability to link existing data securely and safely in order to produce information that can save lives, quickly find new treatments and cures, and support research to benefit all of us.
I say at the outset that, in my view, the care.data programme is very good news and offers a great deal to help improve our country’s health and care system. However, in order to realise its huge potential, patients and professionals must have absolute trust in the way that data will be protected and used together with an understanding of why collecting data on such a big scale is important.
My Lords, I am grateful to the Minister for that full and helpful description of the background to this whole area of the use of confidential information. There is little doubt that public confidence in the uses to which their confidential information may be put has been badly shaken. For example, a number of recent revelations that access has been gained by one means or another by commercial organisations, insurance companies and so on has made the public—and many general practitioners—very wary and anxious.
That is why I want to put my own amendment, Amendment 45C, into the context of Amendment 45F, proposed by the noble Lord, Lord Owen, which emphasises a much stronger oversight by a statutory body: similar to, but stronger than, the Confidentiality Advisory Group chaired by Dame Fiona Caldicott, who commands such public respect and confidence. That is why I intend to support it if he moves it.
It is only against that background—of strong oversight and carefully controlled and limited access to such sensitive data—that we can even consider the very specific circumstances in which we can allow their use: not only legitimate use, but those uses which are vital for the benefit of the public and their health.
My Lords, I will speak to my Amendment 45D, although I may speak to the other two amendments, in the names of the noble Lords, Lord Owen and Lord Turnberg, as well, because they are relevant to the whole debate.
There is no question that the NHS has a rich reservoir of patient information. If we can exploit it to the full, its use could enhance care, aid early diagnosis and be a rich source of data for the development of new medicines and treatments. There is no argument at all here between the Opposition and the Government on this. The noble Earl reminded me that I took through legislation in 2002 that set the foundations for what we are now debating. He will recall that I was then arguing for us to use the potential of NHS information to the full. The noble Earl then, supported memorably by the noble Baroness, Lady Cumberlege, was a mite worried, I recall, about patient confidentiality. I think, however, that we reached a broad consensus that this is information to be brought together and used, but alongside safeguards that have public confidence. This is simply the issue that is before us at the moment.
Under the extension of the scheme, the Health and Social Care Information Centre can require GPs to upload patient data in an identifiable form from every GP practice in England. This will be linked to the Hospital Episode Statistics and other data sets. The information centre is a body corporate that can require a health and social care body to provide information—including confidential information. That is all well and good. The problem is that the centre and NHS England have botched its implementation, so much so that the scheme had to be withdrawn, originally for six months until the autumn, but my understanding is that the chief executive of the NHS, in evidence to the Health Select Committee, said that that date no longer applied. Perhaps the noble Earl could, when he winds up, comment on that.
My own view is that this is a dead duck. The Government will not be in a position to enable the scheme to go ahead any time before the election because so much public confidence has been lost. This is not surprising. Clearly, the information centre and NHS England took an inadequate approach in their public communications effort and there was a lack of effectiveness and accountability. It is clear that there are concerns about whether such information can be kept confidential in practice, and there is a worry that pseudonymised data could, in certain circumstances, be manipulated to identify a particular patient. There have also been concerns, referred to by my noble friend, about inappropriate use for commercial reasons, such as by insurance companies. I make a big distinction here: I would want the pharmaceutical industry to be able to use that information in research and development. That is absolutely legitimate.
There is also concern about general practitioners and their approach. Before the decision was made to suspend the scheme, there were worrying signs that a number of GP practices would not co-operate or would advise their patients to opt out of the system. It is important to recognise that we will automatically be part of the system as patients unless we opt out. Again, I agree with that principle. It is the only way to operate it. However, I am not convinced about having to go to my GP, if I can get an appointment, which is quite arguable at the moment, and having to talk to my GP—or, even worse, the receptionist—to say that I want to opt out of the scheme. There are real concerns about this system. Unless the GP body as a whole is confident that it is going to run with this, it will be destroyed because so many people will be encouraged to opt out that it will not achieve what it is meant to achieve.
I agree with the Royal Statistical Society which argues that we need a robust response to restore public confidence. Of course, I welcome the changes that the Government have made as a result of debates in the other place and in your Lordships’ House. The question, however, is: do they go far enough to restore public confidence? In my view, they do not. The Government have to make the bold statement that the system cannot be allowed to run under the people who are running it at the moment. They have lost people’s confidence. I cannot put this across strongly enough to the Minister: if you talk to organisations that know about the subject, you find that they are clear that they now do not have confidence in the people who are running the system.
That is why the Motion of the noble Lord, Lord Owen, is so important. He is basically saying that we need an external body that is independent and can give total oversight to the scheme. I support my noble friend’s amendment as well. I agree that it would be better in primary legislation than secondary, but there is no harm in having some secondary legislation to back up what we may agree in your Lordships’ House today.
In the Commons, the Government introduced amendments regarding the use of the term “promotion of health” for the purposes of the dissemination of information. Of course, “the promotion of health” could be a very open-ended definition. There was some fear in the other place that commercial companies—say, food and drink companies—could argue that they needed information for a public health campaign. My Amendment 45D seeks to provide reassurance by asking for regulations to be laid that are explicit about the circumstances in which information concerning the promotion of health can be used.
In supporting my own amendment, I say again to the Minister that there is no disagreement whatever about the importance of care.data, about the need for it to be successful or about the huge benefit to our country if it becomes successful. Success, though, is not guaranteed, and at the moment I believe it is unlikely unless the Government make changes. I hope that the House and the Minister will be sympathetic to these amendments.
My Lords, I will speak very briefly. I will not repeat everything that has been said but I support what was said by the noble Lord, Lord Turnberg, particularly about the use of data for biomedical and other medical research. I have been involved on several occasions with perinatal epidemiological research, and such data are vital for that. There is no doubt that we need to be certain that core data will be available for research purposes.
I had not thought that “the promotion of health” might be construed as applying to the food industry; I had interpreted the phrase to mean epidemiological and public health research. However, if the interpretation includes the promotion of health by the food industry, then of course I support it absolutely.
I would be content to have this in secondary legislation at this stage, as the noble Lord, Lord Hunt, mentioned. However, there is no doubt that the way in which the issue has been handled by Public Health England has lost confidence. It could have been handled better, and I hope that Public Health England has learnt lessons from it.
NHS England, not Public Health England. My apologies; sometimes I do not focus well, for reasons that are not obvious to your Lordships. I have some problems that occur. I mean NHS England. I wondered why the Minister was looking at me so curiously. I was about to check whether I was dressed correctly.
I understand that NHS England got this information to the public by doing a mail shot to every household. Some people received it but most people I have asked, among friends and family, do not seem to have done so. On top of that, the mail shot was not clear about what it was asking patients and the public to do. It was actually asking them to decide whether or not they wanted to opt out of their information being collected. That is the kind of process that has brought about a lack of confidence in how this has been progressed.
My Lords, I speak to my Amendment 45E. A recent comment article in the Lancet starts off with the words:
“Trust in the protection of confidential patient data in England seems to be at an all-time low given recent breaches in releases of patient data and the finding that hospital data have been sold to companies with insufficient oversight”.
There is no question or doubt that the research base in this country—particularly the base in pharmaceuticals and medical bioscience—is now at a very high level. Of course, it is because of this that there is a very strong debate over whether AstraZeneca should be taken over by the very large American pharmaceutical company Pfizer.
However, we also have to recognise in this debate that without confidence and the free exchange of information in this world of science data, research will be very badly damaged. Already we know that very serious members of the medical profession want to institute not the present opt-out system but an opt-in system. Most of us know that that will make great inroads into the effectiveness of our data. There are also some GPs who, because of their concerns, now actively encourage patients to use their right to opt out. This is therefore very urgent, and I welcome that the Government, in recognition of the crisis of confidence, have instituted a six-month pause. I understand that the pause has now been extended and that there is no artificial deadline.
In that context, there is another root cause for concern. We have been making data available to the pharmaceutical industry and other areas of commercial science for some time. Perhaps I should declare an interest. For 16 years—I am now off the board—I was on the board of Abbott Laboratories in Chicago, one of the very big American healthcare companies. However, well before that I was a neuroscientist at St Thomas’s Hospital and worked in the early 1960s with ICI, using its remarkable pharmaceutical research product, beta-blocker drugs—one of the great discoveries which led to James Black winning a Nobel Prize. I therefore have no need to assure noble Lords of my belief that a thriving commercial sector in pharmaceutical and other research is an important addition to the research that goes on in universities and hospitals up and down the country.
However, it is a fact that when you embark on a new extension of data being available to commercial operations outside the public sector, people demand and expect much higher safeguards. Before moving my own amendment and shoring it up, I looked very carefully at whether it was possible to get agreement on a mechanism to keep data in the public sector unless commercial organisations have expressed consent. That was seen by many people as blocking commercial activity, and it was not possible to reach agreement on it. That makes it even more important that we should have a statutory form of oversight.
The amendment I placed on the Order Paper proposes a new clause that would place on a statutory footing the current non-statutory Independent Information Governance Oversight Panel, which was set up by the Secretary of State. The present chairman, Fiona Caldicott, has the support of many people in this area, both in this House and outside. However, its present non-statutory terms of reference need to be given the authority of a statutory imposition. The new clause would also require persons and bodies across the health and social care system to have regard to its advice. It defines the relevant information; I strongly agree with the two previous amendments tabled by the noble Lords, Lord Turnberg and Lord Hunt. It is absolutely necessary to make it crystal clear what “promotion” means. It has different meanings in many different contexts—some perfectly acceptable and some borderline objectionable. There are other detailed aspects of the amendment, but it is pretty clear in its intent.
The medical profession is not the only body that ought to be considered in this. The Royal Statistical Society has made it clear that oversight and public trust in enforcement could improve the situation. It says that a new statutory body is likely to be needed to fulfil this role. Statisticians are as worried about the loss of confidence that is developing over medical data as anyone in the medical profession—they are the actual people who handle this.
I am pleased, indeed proud, that the amendment is supported by the Wellcome Trust. There is no better trust in the world than the Wellcome Trust. It is also supported by the charities that are associated with medical research, which also know the importance of the Wellcome Trust’s money and expertise. I have talked to the Minister about this and I will leave my comments for when I formally press the amendment, as I do not want to traduce what he is going to say to the House. He explained his position with his usual courtesy, but I remain of the view that, if we are to hold, restore and, in the future, enlarge public confidence—because I believe a greater exchange of information has huge potential—we have to listen to these concerns.
Whether we like it or not, people expect answerability, not just from NHS England, which is a quango, but also from the Secretary of State. Parliament has a role in this, and the issue is every bit as sensitive as some of the others that we brought under statutory oversight, such as embryology, the whole question of DNA and research into all these areas. We thought that they were so sensitive that Parliament should have a say, at least, and should know whether Ministers are taking actions that have qualifications, or even objections, from a statutory body so that we can make a determination. It is in that spirit that I will later seek to press the amendment.
My Lords, when many members of the public, and patients in particular, feel that their data may be mis-sold to insurance companies or other bodies that may use them either to increase premiums or for their own personal benefit, then we have a problem. Earlier this afternoon we had assurances from the Minister that that would not be the case. This must be information that is used for non-commercial purposes, which has been made very clear. It is important, too, to remember that patients can opt out. I have heard these expressions about the difficulties that they may have with GPs who might prevent their doing so, but they have a choice. They may well opt out. I believe that if we go ahead with care.data and provide the information as needed, many patients, in time, will see the benefits of this and will choose to opt back in.
We have also talked about the need, again, to have anonymised data and to prevent it going anywhere other than the non-commercial areas. Patients also have a right to decide what to do with their data; it is enshrined in the NHS constitution that they have rights on the disclosure of their personal data. I personally feel that all patients should have their own information—they should have their own notes. They should have a memory stick with their records and have ownership of their records. They can then determine, in the circumstances, where that information goes.
Many people are horrified by the idea of patients having their own records. I had experience of this in 1973, when I was a surgeon working in Ghana. Patients would come with their own notes, moth-eaten and dog-eared. The reason was very simple: if their notes were in the hospital, a certain bribe had to be paid before those notes could be released. Patients have always been suspicious about what happens to their notes. Give them to them—that is what I would say.
The proposal from the noble Lord, Lord Owen, for yet another layer of scrutiny above what is being proposed, is something that we should consider very carefully. He referred to the fact that it would be for the Secretary of State and NHS England to make those decisions. However, noble Lords will recall that when we debated this matter not that long ago, the noble Lord, Lord Willis, and others put forward a proposal for the Health Research Authority. If this Bill goes through, the Health Research Authority will have the authority to decide how information is disclosed. Therefore, I speak very strongly in support of the care.data programme. It is important for patients to be reassured and that point has been well made from all sides of the House. They clearly have to have that reassurance. However, I see no need for an extra layer or an oversight panel. That would provide just one more barrier for researchers to climb.
My Lords, the question that we are debating at the moment as we approach the enactment of the Bill is whether any extra words in any of these amendments are needed to provide more safeguards and greater public trust and confidence. The bit of law which is paramount but which has not been mentioned so far is the Human Rights Act. This Act, in Section 3, requires that all legislation, including this Bill, must be read and given effect to, if it is possible to do so, compatibly with the convention rights. One convention right, in Article 8, is the right to personal privacy. The Human Rights Act also provides that if any public authority, which includes the Secretary of State and any body performing functions of a public nature, were to breach the right to privacy, it would be liable to obligations, damages and other remedies under the Act. We do not have a written constitution which guarantees privacy; instead, we have the data protection legislation, which is broad-ranging, and the Human Rights Act.
The right to privacy requires three things. One is reasonable legal certainty where there is to be any invasion of privacy—one must know what it is for. The second is a legitimate aim—it must be done for a proper purpose. The third thing is that any invasion must satisfy the principle of proportionality—it must not be excessive. There is a lot of case law on this. Indeed, I was involved in one of the cases years ago in the Court of Appeal—called, I think, Source Informatics —which dealt with the lawfulness of supplying anonymised patient data.
I do not think it is sensible to add further language or further mechanisms over and above those that the Minister has described this afternoon. The more specific we become and the more we go on adding, the more ambiguities we create over what the additional words mean and how they might be interpreted. My view is that it is much better to use the Human Rights Act, the data protection legislation and the specific safeguards that the Minister has adumbrated very clearly today. In my view, they completely satisfy the right to patients’ personal privacy and I cannot think that adding these other words will add to public confidence. It seems to me that public confidence depends more on leadership and public information based upon the framework that we have.
Therefore, I hope that we do not divide the House on this. I hope that we are all able to agree that confidentiality and privacy are vital, as is public confidence, but that we should not overlegislate and overprescribe. In particular, we should not do so when we are considering Commons amendments at the 11th and a half hour before midnight, and we may later come to regret anything that we now add which creates further problems and further ambiguities.
I agree with the last comments of the noble Lords, Lord Lester and Lord Ribeiro. One of the problems that your Lordships’ House has faced with this is the issue of data used for research versus data used for commercial purposes. That becomes a very grey area when some commercial firms are doing pure research. It may be worth your Lordships’ House remembering that even commercial research, whether it is carried out by research departments or within universities and other research bodies, is bound by the strongest ethical codes in which we should all have trust and assurance because they are respected around the world. I would be grateful if the Minister could confirm again—I know he has already done so—that commercial data will not be released so that, for example, an insurance company could raise premiums for a particular group of patients. That is the fear that the public have, rather than the issue of using research data, for which we already have many structures and for which the Health Research Authority is properly the correct authority to make sure that the codes are followed absolutely. There is a difficulty in that pseudonymised and anonymised data can sometimes be undone, but that issue already exists in other research areas and there are plenty of mechanisms to hold researchers to account should they use any of that information themselves. I support the point of the noble Lord, Lord Lester, that we should be content with the Government and that if we start to overprescribe, we will end up unravelling some of the complex but effective arrangements that already exist in the research world.
Secondly and very briefly, I have previously raised with the Minister one very specific point on this issue, and I have asked him this question in writing in advance. Has there been any progress on the timetable for inclusion of primary care musculoskeletal data into the care.data programme? I understand that it was an unintentional omission earlier in the process but, given the number of people in this country suffering from musculoskeletal problems, it would be quite extraordinary if they were not included at an early stage.
My Lords, I would just like to say a few words about this because I am very involved in the whole world of IT, personal data and identification and the issues around examining the data. One of the things that has become apparent to me is that if care.data is to be effective, public trust must be maintained in it—that is the core problem. It needs to be there so that we can do epidemiological studies, and to do those some information will have to be in the database—such as postcodes, so that you can look for clusters and so on—which will potentially allow people to be identified. Once you compare it and link it across to other databases, if you are looking for someone who is of a certain age, a certain health profile and in a certain area down to 100 yards, it is fairly easy to start working out who they are by cross-linking. However, it may be important to take that risk from time to time, as long as it is done properly. What we do not want if this is to work is for people to feel a need to opt out. You cannot do epidemiological studies if half the population decide they are going to opt out. It is essential that the public trust the database, trust that they will be protected as far as possible and trust that the information will not be misused against them. That is the core to getting this whole thing to work, and if you fail on that you have had it.
The noble Lord, Lord Lester, made a very good point about the human rights stuff being in there and that we have the Data Protection Act and all these things. The Minister also mentioned the Data Protection Act. However, there are some challenges with this. One of them is how you bring a case under the Human Rights Act when a department or the health service is acting incorrectly. It is quite tricky; it does not happen overnight and you would be lucky to stop it. There are wonderful protections in the Data Protection Act but there is a certain amount of vagueness about exactly where the limits are and, worse still, it will all be changed this autumn or winter when the new European Parliament assembles. The proposals nearly got through before the coming elections. Under the digital single market agenda, a new Data Protection Act regulation will almost certainly come out of Europe somewhere towards the end of the year. That will have direct action in this country. We have no control over it as it is a European law that is directly effective in this country, and the Information Commissioner over here will be the person who will enforce it. We will have no say in whether it relaxes things too far or becomes too prescriptive in what it does. We cannot rely on it for certainty in the future
The noble Earl may not be aware that nothing that comes from Brussels will be able to offend the European Convention on Human Rights or the charter of rights with regard to EU action.
I fully agree with the noble Lord. My challenge with it is how easy it will be to raise a human rights case if we find that the regulation does not comply with something on which we have legislated here and there is a conflict. I accept that it is theoretically possible. I would argue that maybe the way proposed by the noble Lord, Lord Owen, is another way of trying to make sure that we do not have to go to that step.
Briefly, there are some commercial issues with this. One of the changes is that the National Health Service may end up giving away data that are all good for research purposes but which would be very useful for pharmaceutical development and stuff like that. Companies will make a lot of money from information that they get from the data, but I would like to see the NHS benefit. I do not have a problem with it selling the correct data if it is properly controlled for the right research purposes. There will also be some businesses and companies that will make a business out of analysing such data and selling the analysis back to the NHS. It would be useful because the NHS does not have the time or the skill to do that work, but the NHS should benefit from the work and effectively charge for the data that it sells.
There are two reasons why I like the amendment of the noble Lord, Lord Owen. On the Minister’s interpretation of statistics, if we take the more general wording, “the promotion of health”, and it is possible for the food industry to use it to bolster some of their stuff, we have to look at some of the underlying assumptions of the statistics, which can be dangerous things. We need to see how that is done. Even if we go for the newer wording in Amendment 40C, there could be problems in this area. I do not think that anybody is capable of regulating themselves. We always have our own internal biases towards our own objectives and can be regulated only by someone who is looking at it from another point of view, from outside.
We have had the Caldicott guardians for a while. The system works as they are looking after the public interest. They give the public confidence that things are not being misused in their names. Therefore, why are we throwing away a few years of experience of something that works? It is not tampering with the wording of the Bill or playing around with a mish-mash of words; it is merely re-establishing something that already exists. It is a sensible balance. If you cannot check yourself, checks outside the organisation have to exist. Therefore, I suggest that we support the amendment.
My Lords, I hope that the Minister will comment on a fact mentioned by the noble Earl, Lord Erroll: namely, that on its imminent coming into force the European data protection regulation will indeed supersede our Data Protection Act, which implements the current European directive. I am sure that the debate in Brussels has been conducted with the highest aims for the protection of privacy but I also believe that it is based on considerable illusions. It aims to introduce reliance on specific and explicit consent for each and every reuse of lawfully held data. This is an illusory standard. In the commercial world it works as we can tick and click as giving consent to terms and conditions, but it does not provide an adequate model for the world of medical research. I fear that when this draft regulation comes through, which it is very likely to do, we will not have secured better standards for the protection of patient privacy in research, and nor will we have secured the future of medical research.
This seems to me to be a very poor moment at which to have to make decisions on protecting the privacy of patient data, because the ground rules are about to change. They will of course be compatible with an interpretation of the European Convention, but they will change a great deal. I declare an interest as chair of the ethics, regulation and public involvement committee of the Medical Research Council, and as chair of the Equality and Human Rights Commission.
My Lords, this has been a very fruitful and excellent debate. I thank all noble Lords for their contributions. Before I address the amendments in the names of the noble Lords, Lord Hunt, Lord Turnberg and Lord Owen, I hope it will be thought to be in order for me to cover some of the questions that have been raised by noble Lords.
I start with the issues raised by the noble Lord, Lord Patel, who asked me a series of questions. First, he asked about the “one strike and you’re out” intention to which I referred. We believe that this will be a criterion that the Confidentiality Advisory Group, the CAG, will take into account in its advice to the HSCIC on the dissemination of data that might be used to identify an individual, so there is already scope for flexibility and common sense within this provision. We anticipate that the transparency of the information centre’s decisions to release data, which is provided for in the 2012 Act, would provide further safeguards and reassurances that a “one strike and you’re out” rule was being used appropriately—so there is flexibility. This is one matter on which NHS England in particular will want assurance as the engagement exercise proceeds, as will Ministers.
The noble Lord asked about accredited safe havens. I can commit that the Government will consult on proposals to introduce regulations before bringing forward any new regulations that would enable greater access to data for commissioning purposes, for example through accredited safe havens. As affirmative regulations, any such changes would be subject to debate in both Houses. Will personal identifiers be excluded from the collection? The information centre will of course need identifiers in order to be able to link health and care data from different settings. That is vital if it is to become the source of linked data that all sides seem to desire. Of course, this would be with the protections set out in the 2012 Act, to ensure that the information centre could release information that could be used to identify individual patients and service users only where there is a legal basis for it to do so.
The noble Lord, Lord Patel, also asked about effective links to the patient records standards board, to define the content of patient records. Following the department’s recent review of informatics governance arrangements, it has proposed a committee that will focus specifically on information standards: the so-called SCCI. That committee has oversight of the operational framework and supporting infrastructure to enable the appraisal and approval of information standards and collection across health and care systems in England. The committee will be the mechanism by which the patient records standards board will be able to engage with the delivery community and the wider system, in order to define and gain approval for the content of patient records.
The noble Lord, Lord Patel, suggested that there should be straightforward mechanisms for the personal opt-out. NHS England’s extension period and engagement processes do allow space and time for fuller listening, engagement and debate on that vital programme. As part of the process, I understand that a wide range of stakeholders—including the BMA, medConfidential, Macmillan and indeed the noble Lord, Lord Turnberg—are invited to regular advisory group meetings with the NHS England team. Those processes will be key to helping work through how best to provide reassurance and trust in the care.data programme, not least on how best to ensure that the opt-out process will work in practice and can be clearly communicated and understood by both GPs and patients.
The noble Lord asked whether I would assure the House that no changes to the law would be made to provide for access by commissioners to this kind of data without consultation. I can give that assurance. I can commit that we will consult on proposals to introduce regulations, as I have already mentioned.
The noble Lord asked whether I could say anything about secure data labs or fume boxes for handling data. Yes, I can say a little. I understand that the information centre is working to see how best it can implement this kind of technology. It is tremendously encouraging and could offer real potential benefit from the wealth of information held by the information centre without putting people’s confidentiality at risk. That is the potential benefit.
My noble friend Lady Brinton asked about the extraction of musculoskeletal data from GP records. I understand that NHS England and the information centre are working to ensure that musculoskeletal data will be included in the GP extraction.
The noble Lord, Lord Hunt, suggested that patients should not have to go to their GP to opt out—a point that he has made to me on more than one occasion in the past. This is mostly a matter for NHS England, but GPs, as data controllers, have legal responsibilities under the Data Protection Act for ensuring that all patients are aware of how their information is being used and shared. That does not relate just to care.data but to any use of data for wider purposes. They also have professional and moral objectives to ensure that their patients are informed about the use of their data.
I do not want to delay the House and I am grateful to the noble Earl, but he will know that there is a widespread concern about the quality of GP practices in some parts of the country. The first report of the chief inspector of primary care within CQC contained some hair-raising concerns. The idea that one of those GPs will be responsible for protecting data in those circumstances fills me with gloom and despair. Clearly, something will go wrong. If this ever gets off the ground, which I doubt in current circumstances, something will go wrong and the whole thing will collapse again.
At the same time, if anyone is going to come up with a better solution, now is the time. I have not heard one. In all seriousness, however, all GPs are well aware of the duty of patient confidentiality. I have never met a GP who has not been aware of that and conscientious about it.
The noble Earl, Lord Erroll, took us to the subject of the proposed European general data protection regulation, which is of considerable concern to the Government. We believe that clinical research is already highly regulated in the UK, so that the interests of privacy are effectively balanced against the value to the public that the research will deliver. The data protection proposals will, as I am sure he is aware, be subject to the co-decision of the European Parliament, the Council of the European Union and the 28 member states. Officials from the Department of Health are working closely with the Ministry of Justice, which leads on the negotiations with the EU on the UK's behalf, ensuring that stakeholders are engaged on key issues such as consent, the use of pseudonymised data, and when the legitimate interests of data controllers can be applied in order to process personal data.
We have also flagged up our concerns with MEPs on specific issues, including the narrowing of the exemption from consent generally and in relation to a rigid reliance on consent or pseudonymous data in order to process data. We strongly agree that we need to take a very firm position on research within the Council and are resisting all changes that would make the use of health data for research more problematic.
I turn now to the amendments themselves. In doing so, I not only thank the noble Lords who spoke to them, but particularly thank my noble friends Lord Lester, Lord Ribeiro and Lady Brinton for their supportive comments about the Government’s amendments and the Government’s position generally.
Amendments 45E and 45F would place Dame Fiona Caldicott’s independent advisory panel on information governance on a statutory footing to provide advice on information governance across the health and care system. It would require the Secretary of State and NHS England to have regard to its advice when making directions to the Health and Social Care Information Centre under Section 254(1) of the 2012 Act. The Secretary of State would also be required to have regard to its advice when making regulations to establish an accreditation scheme for private sector information providers. The amendment would also revoke directions made to the information centre by NHS England in 2013 to implement the care.data programme and to establish data services for commissioners.
Let me say immediately that we are sympathetic to the desire to see the oversight panel placed on a statutory footing. In an area as complex and important as information governance, it is essential that we have a source of clear, authoritative advice, available to all parts of the health and care system, which creates the right conditions for informed judgments to be made on the use of information, and on decisions to share or not to share. When the Secretary of State asked Dame Fiona Caldicott to chair the Independent Information Governance Oversight Panel, it was in recognition of her extensive knowledge and experience in this area. I agree with the noble Lord, Lord Turnberg, that Dame Fiona is uniquely well placed to lead the panel in providing strong, visible leadership to the health and care sector. It is our clear intention that the panel be best supported to do this. My department continues to work closely with Dame Fiona to ensure that the panel is equipped to deliver the role it has been charged with performing.
There may well be merit in establishing the panel in law and giving legal force to its advice on data sharing. I strongly feel, however, that on this important matter, so crucial to people’s privacy and confidentiality, to the safe and efficient operation of the health and care system, and to the research agenda, it is vital that we ensure the system of oversight, scrutiny and advice is robust and coherent. I undertake that we will explore with Dame Fiona Caldicott and all interested parties how best to achieve this, which may include using existing legal powers to establish an independent committee able to advise on data-sharing matters. Dame Fiona Caldicott has confirmed that she would explore options on existing legal powers to establish an independent committee and has noted the importance of considering further and clarifying the functions of the panel before doing so. I hope that those statements, as far as they go—and they are intended to be helpful—will reassure the noble Lord, Lord Owen, and other noble Lords.
I turn now to the directions made to the HSCIC by NHS England in 2013, covering the establishment of data services for commissioners and the implementation of the care.data programme, which would be revoked by this amendment. These directions, inter alia, describe the intended operation of the patient opt-out processes in the event that a patient objects to his or her information being shared. A key focus of NHS England’s engagement activity is to ensure that the opt-out process is implemented in a way that reflects the outcome of the listening exercise, and this will need to be reflected in the new directions to the HSCIC. As there will be new directions, it is not necessary and would be inappropriate to use primary legislation to revoke the current directions.
With those assurances and with a commitment to ensure that the oversight panel is supported to deliver its objectives—including a commitment to explore using existing legal powers to establish an independent committee to advise on data sharing—I hope that the noble Lord will see fit to withdraw his amendment.
It may be helpful to address Amendments 45C and 45D together as they cover very similar ground and, I believe, have similar intent. Amendment 45C would narrow the purposes for which the information centre may disseminate anonymised and certain other information under its general dissemination power. Government Amendment 45 provides that the information centre may disseminate information under its general dissemination power only for the purposes of the provision of health care or adult social care, or for the promotion of health. This amendment would replace the latter of these purposes with “biomedical and health research”, with the effect of curtailing dissemination for any other health promotion purpose. Amendment 45D seeks to define the health promotion purposes for which the HSCIC may share anonymised and certain other information under its general dissemination power in regulations.
I understand the concerns raised by some noble Lords that government Amendment 45 would allow commercial companies—including fast food and tobacco companies, for example—to access information under this provision for commercial gain. I hope I can offer reassurance that the scope of this provision will enable us to tap the potential of the wealth of data available for research, while explicitly preventing the use of such data for purposes that will not promote health.
My Lords, I was rather encouraged by the noble Earl’s initial remarks about strengthening Dame Fiona Caldicott’s committee and making clearer what role it might be able to play.
The problem I wanted to address in Amendment 45C is the uncertainty in the ways in which the words “promotion of health” may be interpreted. I know that the noble Earl has said that they cover research, for example. What about research that does not immediately seem to promote health? It is this rather vague term that I wanted to clarify. It is not about trying to unravel the legislation, as someone has suggested. It is about making it absolutely clear. I am afraid I was not very convinced by the noble Earl, and I beg leave to ask for the opinion of the House.
My Lords, for those who have not been in the debate I will try to deal with the specific responses from the different speakers. First, perhaps I may deal with the response from the noble Lord, Lord Lester. I agree very much with what he said. I believe that the European Court of Human Rights and the human rights legislation, coupled with the privacy Act, do enough to safeguard confidentiality and privacy. With respect, however, that is not what this amendment is essentially about. This amendment is essentially about how you release those documents, what the procedures and mechanisms are, and what the criteria are for release. That is what is so very sensitive at the moment. That is why we need the reassurance of outside scrutiny not only over NHS England, which is effectively a quango, but also over a matter as sensitive as the regulations that might come from the Secretary of State.
In his speech, the noble Earl, Lord Erroll, reminded us of the complexity of this issue. In fact, the issue is geared into a lot of the technology and science of how one collects this information. As for the noble Baroness, Lady Campbell, she warned us seriously about what is likely to come out of Europe, which could have profound aspects. I believe that legislation is coming. However, the key issue is what the noble Earl, Lord Howe, said in his speech. With his characteristic courtesy, he had already given me an indication of how he was likely to reply. Those who were present earlier will remember that I did not try to summarise his views; I thought it was more important that the House should listen to them. I listened as carefully as I could, and I do not want to be churlish about this—what he said was important and will give some comfort to people outside. He said that he was sympathetic to the desire to put an oversight panel on a statutory basis and I very much welcome that. He also referred to how Dame Fiona Caldicott was uniquely well placed to be the chairman of this body and, by implication, a new statutory body. I think that all the contributions from both sides have agreed on that issue.
The noble Earl said that there may well be merit in establishing the existing panel and went on to say that in his conversations with Dame Fiona, she said that she would look first at the question of statutory underpinning and then at it in terms of the relationship. The problem, as I explained to the noble Earl this morning, is that I should like to have a letter from the Secretary of State committing himself to that. Those of us who have been in government know that the time of the legislative committee is very much fought over: everybody wants to legislate but time is short. An unequivocal commitment to legislate would be necessary for me to withdraw this amendment, but, with respect, we did not get one. We got a lot of sympathy, and I hope and believe that legislation will come. I even hoped that the noble Earl would say, “The Government will be neutral. We are not taking a position. Let it go to the Commons and let’s see what the Commons view is”. I think that that would be helpful and would give him more time to build a consensus around the pattern and form of legislation.
If the House does not mind, I would like to ask for its agreement to this amendment—in the spirit that I believe that it would do a lot to ease the current suspicion and distrust over the whole issue of medical data, patient data and hospital data. I say to those who did not hear the speeches that no one in this entire debate has questioned the absolute importance of these data: they could be crucial for this country’s future in the biological sciences and in pharmaceutical research. If the issue is handled properly and with confidence, I believe that we can ensure that the number of those opting out—which is a natural right—will be very small. As long as the number of those opting out remains small then the data will be statistically significant and extremely important. The danger is that the number of those opting out could become quite substantial. I hope and pray that that does not happen. In our vote tonight, we will at least be showing those who are concerned that we believe that there should be a statutory underpinning. I beg to move.