Health and Care Bill

Debate between Lord Mackay of Clashfern and Baroness Wheeler

Lords Hansard - Part 1 & Committee stage
Tuesday 18th January 2022 Lords Chamber

[Baroness Wheeler (Lab)]

My Lords, today’s debate has shown the strength and depth of feeling across your Lordships’ House that children and young people should be properly provided for within the scope of the Bill and not just as an afterthought, as many noble Lords have said.

Intervening in the early years of a child’s life is the most effective way of shoring up their good health and well-being as an adult. This group of amendments seeks to do just that, ensuring that our children are not sidelined in a healthcare infrastructure currently designed with adults, and just the NHS, in mind. This group also seeks to strengthen the Bill by including safeguarding, interagency working, service integration and data sharing, especially between government departments and the NHS and social care.

I thank noble Lords for putting forward these amendments, particularly the indefatigable noble Baroness, Lady Tyler, for her proposals across Clauses 20 and 21 to ensure the joining up of the roles and work of ICBs and ICPs in these crucial areas. Indeed, what is particularly striking about today’s debate is that the experience and contributions of noble Lords have joined up children’s needs across a whole range of service provision and support in a way that government structures currently fail to do. This is a major issue that needs to be addressed, particularly to address the needs of vulnerable children, as my noble friend Lord Hunt and other noble Lords have stressed.

If the Bill is to stand any chance of improving government health outcomes, it must start with the youngest among us all. Right now, in this, the fifth-biggest economy in the world, child health inequalities are widening, while 25% of children in the average reception class will be overweight. By the time those children are in year 6, it will be 40%. The all-cause mortality rate for under-14s in the UK is among the worst in Europe, and the World Health Organization tells us that 50% of lifetime mental illnesses start by the age of 14. Noble Lords will recall the debate last week about the need for robust mental health services, which include those around potential young suicides, self-harm and eating disorders. As the charity YoungMinds reminds us, after-care and follow-up are crucial although, sadly, ignored in current sustainability plans, as the noble Baroness, Lady Finlay, pointed out.

The Royal College of Paediatrics and Child Health has expressed particular concern that there is currently no duty in the Bill to include representation from children’s health and care services on integrated care boards. The noble Baroness, Lady Finlay, underlined in her Amendment 87 the importance of safe staffing levels and of this in driving forward improvements in child healthcare outcomes and ensuring that children and young people can access the care they need, when they need it and from the most appropriate person or team.

Barnardo’s is similarly worried about the absence of a child impact assessment, without which there will be no clear, objective idea of the impact of the changes in this Bill on young people. The right governance and rigorous evaluation, aimed at providing lessons learned for future service design and reform, can surely only be a good thing. We strongly support Amendment 142 on this issue, in the name of the noble Baroness, Lady Walmsley, which calls for the impact assessment to be undertaken within two years of the Bill’s implementation. It also emphasises the need for an annual report and debate in Parliament on the impact of changes, scrutinising, in the first year in particular, how the changeover from CCGs to ICBs is working in practice.

Following last week’s debate on the appalling backlog of waiting lists and the NHS’s duties under the mandate and constitution, I remind the Committee that last month’s National Audit Office report showed that more than 288,000 children and young people are waiting for NHS treatment, 86,000 of whom have been waiting for longer than the 18-week target I asked the Government to reaffirm.

Whether it is ensuring proper information sharing between care providers, safe staffing levels or clarifying how the Better Care Fund can specifically be used to better integrate children’s services, these amendments have compassion and common sense behind them. We have an opportunity in this Bill to give our children a healthier future. I hope that the Minister will agree.

[Lord Mackay of Clashfern (Con)]

My Lords, I am sorry to intervene at this stage but I cannot let the opportunity pass to say, in my view, how important it is that children be particularly referred to and their circumstances be properly taken into account. We have very powerful legislation on the care of children, but the same is not true with health, and it is extremely important that that be kept in view. Apart from anything else, special staff and treatments are required for children, and I therefore strongly support this amendment. I am sorry that I was not able to do so at a more appropriate time, but I arrived a little later than I would have liked.

European Union (Withdrawal) Bill

Debate between Lord Mackay of Clashfern and Baroness Wheeler

3rd reading (Hansard): House of Lords
Wednesday 16th May 2018 Lords Chamber

[Lord Mackay of Clashfern (Con)]

My Lords, your Lordships will know that I took part in the debate on the amendment tabled by the noble Lord, Lord Warner. A clear decision on this matter was made by the Court of Appeal long before Brexit; it exists in our law and is based on European law. I know of no better assurance than that. The principle is clearly set out in the Court of Appeal and the High Court judgment in the packaging case. I do not know the nature of the legal advice to which the noble Baroness referred, but there are legal advices and there are legal advices. My advice is certainly very clear: if you have a judgment of the Court of Appeal on European law, which was part of our law before Brexit, under the retained law arrangements it will be part of our law after Brexit. If I had any reason to suppose that this amendment had been proposed according to that legal advice, I would feel that the amendment that we had before was, if anything, rather better.

[Baroness Wheeler (Lab)]

My Lords, on behalf of my noble friend Lord Hunt, who is unable to be here today, I fully support the amendment of the noble Baroness, Lady Finlay. It was helpful to be reminded of the strong concerns expressed on Report; I also endorse the comments made by the noble Lord, Lord Warner. It is important to have clarification that the need to preserve Article 168 of the Lisbon treaty as part of retained EU law is recognised, and I look forward to hearing the Minister’s comments.

I commend the Minister’s willingness to work with noble Lords across the House on this important matter and his helpful role in facilitating this and working through the issues referred to by the noble and learned Lord, Lord Mackay. Article 168 places public health protection and health improvement at the epicentre of policy-making, and the Government’s assurances that our domestic law implementing EU public health requirements will continue to be interpreted by reference to relevant EU law, including Article 168, will be welcome.

The Minister’s assurance of the Government’s commitment to ensuring that the UK remains a world leader in public health following Brexit would also be welcome. I hope he will provide the House with this, to be noted for the record.

Finally, it is important once again to pay tribute to and place on record the work of the wide coalition of major public health bodies, medical colleges, charities and the wider health community in helping us, one hopes, reach a consensus on the way forward.

Medical Innovation Bill [HL]

Debate between Lord Mackay of Clashfern and Baroness Wheeler

Friday 12th December 2014 Lords Chamber

[Lord Mackay of Clashfern (Con)]

My Lords, as far as Amendment 1 is concerned, I think that the later amendment tabled by my noble friend Lord Saatchi has the same effect. Amendment 1 is very clear on the matter, and I think that it has been the law that emergency treatments are dealt with in a way that is suitable for the emergency. Accordingly, something of this sort in the Bill is an improvement.

I find Amendment 6 more difficult. As I said in Committee, “innovation” is an ordinary word in the English language, so to try to list all possible innovations seems to suggest a foreknowledge of what innovations may be introduced in the future. It requires unnecessary precision. As I said, “innovation” is a reasonably simple word and it is easy for a practitioner to carry it in their head. I venture to think that Amendment 6 would be somewhat more difficult to carry in your head. I have read it, of course, but I would find it quite difficult to repeat it now without reading it, so I will not attempt that test.

On the later amendments, it seems to me that emergency medicine is certainly not intended to be dealt with by the Bill. It is obviously intended to deal with a deliberate decision to administer a treatment into which has gone a degree of consultation and prior thought. I am therefore entirely of the view that innovation ought not to be covered by it. In so far as my noble friend Lord Saatchi’s amendment does not do that already, Amendment 1 is very acceptable so far as I am concerned.

[Baroness Wheeler (Lab)]

My Lords, as this is the first contribution from the Front Bench to the discussion of today’s amendments, perhaps I may again place on the record our support for the key principles and intent of the Bill. As we stress, Labour has always strongly supported efforts to bring innovative treatments to patients faster, and we underline the need for a major effort by government to address the barriers and bureaucracy that prevent progress being made and ensure that innovations are rapidly transcribed into practice. The noble Lord, Lord Kakkar, recently held a short debate in the Moses Room on the impact of innovation and research strategies on health improvement. It provided an excellent overview of the key issues, the progress being made, and the problems still to be addressed. We are keen to ensure that the Bill of the noble Lord, Lord Saatchi, is seen in the context of this wider, bigger picture. I know that the noble Lord accepts that his Bill will be one measure in the broader landscape of what needs to be done.

Along with my noble friend Lord Turnberg, I am also grateful to the noble Lord for the efforts he has made to address the issues and concerns raised by noble Lords across the House. In Committee we underlined our broad support for the changes—the “Sir Bruce Keogh amendments”, as they are now known—which have been made to ensure patient safety and safeguarding. We also found the round-table discussions for Peers that were organised by the noble Lord following our suggestions in Committee very valuable and useful. Again, we are broadly supportive of the new amendments he has brought forward today, which are the result of the discussions, on emergency care, on the recording of key information in the notes of the patient receiving the treatment, on excluding cosmetic surgery from the scope of the Bill, and on ensuring the preservation of the existing law about clinical trials and other forms of research.

My noble friend Lord Winston continues to express strong concerns about the Bill, and his amendments are designed to add further safeguards and limitations on the scope. He fully reflects the continuing concerns that have been voiced by a number of key stakeholders and doctors, including the BMA and the Medical Practitioners’ Union, which have issued further detailed briefs warning against the possible consequences of the Bill. At my noble friend’s instigation, I have read carefully Tuesday’s Adjournment debate in the House of Commons on patient safety and medical innovation, and in particular the contributions from Dr Sarah Wollaston MP, who expressed the strong criticisms we have heard from the noble Lord and the Bill’s critics, and the contribution from the Minister for Life Sciences, George Freeman. I thought that Dr Wollaston’s contribution well reflected the issues and concerns we have heard in this House—but also that the Minister presented a pretty balanced response as to where we are today in terms of the safeguards and workability of the Bill.

For our part, we have sought to work constructively with the noble Lord, Lord Saatchi, and other noble Lords to improve the Bill and to make it workable and safe for patients. The round-table discussions particularly focused on the outstanding areas of our concerns which we are discussing today. First, there is the issue of obtaining written consent from the appropriately qualified doctor in relation to the proposed treatment, which will come up in the next group. Secondly, we seek to ensure that the Bill does not impact on or affect the existing law on clinical trials and other forms of research. We are satisfied that Amendments 8 and 9, tabled by the noble Lord, Lord Saatchi, have the effect of reinforcing this in the Bill.

Thirdly, we desire to see a definition of “innovation” in the Bill and we have sympathy for the arguments that key areas need to be excluded from its scope, as again set out in the amendment retabled by my noble friend Lord Winston. The Department of Health has argued strongly that any definition of innovation would need to be the subject of a widespread, cross-government consultation that should include the devolved Governments. We have made a dignified retreat on our particular amendment and we accept the difficulties that would be involved at this stage in the progress of the Bill. However, my noble friend Lord Winston has made a strong case for defining innovation in respect of medical treatments and the use of drugs, and I look forward to the responses of the Minister and the noble Lord, Lord Saatchi. Like my noble friend Lord Turnberg, we think that a form of words based on that would provide a useful clarification.

On exclusions, the briefing on the amendment of the noble Lord, Lord Saatchi, states that he has considered attempting to define the extent and scope of the Bill, but has found it impossible to do so in a way that answers more questions than it raises. However, Amendment 10 does provide the important exclusion of cosmetic surgery that was sought by noble Lords across the House, and we welcome this. At the round table there was discussion about the possibility of the scope of the Bill referring to the regulated branches of medicine to distinguish the areas it covers. My noble friend Lord Winston makes this point in Amendment 12 in relation to excluding practitioners and health workers who are not registered with the General Medical Council or the General Dental Council.

Fourthly, I turn to the very important issue of emergency situations in the treatment of patients, which is a strong area of concern for noble Lords across the House, including my noble friends Lord Turnberg and Lord Winston, and the noble Lord, Lord Kakkar. Amendments 14 and 15 tabled by the noble Lord, Lord Saatchi, address this by providing a reference to emergencies as an example of a situation in which the existing common law Bolam test would apply and a doctor might not engage in the procedures of the Bill. But if there is further clarification in respect of the issues raised by my noble friend Lord Winston, we would be grateful for that. Amendment 1 raises other issues in respect of emergency care, and again I look forward to hearing from the noble Lord, Lord Saatchi, and the Minister in response.

As I have said, we have worked constructively with the noble Lord, Lord Saatchi, to make the Bill safe and workable, and we believe that the amendments that were made in Committee—and that we hope will be made today—will make it a better Bill. It has strong support, but we know that key stakeholders still have major concerns. There needs to be strong commitment from the noble Lord, Lord Saatchi, and the Government to address these issues and ensure that there is full consultation on the regulations, guidance and codes that will enforce its implementation. The registration of innovative treatments will be crucial, and this will be picked up by my noble friend Lord Hunt under our amendment later.

Finally, I remind the House of the four key tests of what the Bill will achieve, which were set out to the House of Commons by the Health Minister, Dr Daniel Poulter. He said that the Bill must,

“ensure it does not … put patients at risk … deter good and responsible innovation … place an undue bureaucratic burden on the National Health Service; or … expose doctors to a risk of additional liabilities”.—[Official Report, Commons, 21/7/14; col. 999W.]

Again, I would be pleased to hear from the noble Lord, Lord Saatchi, and the Minister as to whether they consider that the Bill in its amended form will achieve this.

--- Later in debate ---

[Lord Mackay of Clashfern]

My Lords, I think that we would all take the view that the last thing we want to do in any sort of legislation is endanger patient safety. However, I suggest that the honourable Honor Smith was not acting under my noble friend Lord Saatchi’s Bill; she was acting, I take it, under the law that existed at that time. Therefore, even in the best regulated circles, with no provision for innovation, something can happen. No doubt the lady thought that she was doing the right thing when she did it, but it turned out ultimately that that was not so.

With regard to the Bill, the ultimate test of the defence is whether it is in the best interests of the patient. In taking account of views from qualified people in the area, that is an important factor. It is necessary that a doctor who is going to use this treatment should be able to satisfy the court that, in the light of the available evidence at the time when the decision was taken, this decision was in the best interests of the patient. Therefore, endangering a patient strikes me as something that is already covered quite clearly by that requirement. The mention of danger must be an important aspect of the best interests of the patient, surely.

On Amendment 2 from the noble Lord, Lord Winston, he talks about the body of medical opinion. The cases that I know of talk about “a” body; lawyers certainly do not often agree one with another and I think that sometimes doctors do not agree either. Someone therefore has to make a choice from time to time.

It is perfectly clear that we all want to prevent patients from being put in danger. I have seen and listened to the programmes by the noble Lord, Lord Winston, about the injection of stem cells into people for money in different parts of the world without the promised success ensuing from that. I am sure that there is a danger in that area. Indeed, there are dangers in many areas. However, the problem for the doctor—and I am glad in a way that this responsibility is not the kind of responsibility that one has to carry generally in other professions—is that it is the life of the patient that may well be in question. Therefore, in taking an innovative step it is essential that the views which are available in relation to the matter and which are reasonably readily available to the doctor making the decision to use the treatment are taken fully into account. That is what this Bill is trying to do.

The Bill is set out as providing for responsible innovation. One of the fundamental elements of responsibility must be the patient’s safety. While I entirely agree with the view that that is an important issue, I believe that the Bill safeguards that so far as possible. The experience to which the noble Lord, Lord Walton, referred is an example of what can happen. On the other hand, you cannot make certain; nothing is infallible. I believe that from that point of view this is as good as we can achieve.

[Baroness Wheeler]

This is a very important group dealing with patient safety. I shall briefly intervene in support of my noble friend Lord Turnberg’s Amendment 3, which refers to seeking the support of the appropriately qualified doctor rather than his or her views, and to support Amendment 7 from the noble Lord, Lord Saatchi, on recording the treatment and consultation on the patient’s notes.

Our firm preference was for the Bill to specify the need for the written consent of the appropriately qualified doctor, but we have heard senior medical doctors’ concerns about giving formal written consent to another doctor’s proposed course of treatment for the patient without knowing their full history and other circumstances.

As my noble friend Lord Turnberg said, there is something of an irony in a Bill designed to address doctors’ fears of litigation running the risk of opening up the fear of litigation from the supporting doctor. We consider “support” to be preferable to the doctor’s “views” and I hope that the noble Lord, Lord Saatchi, can respond positively to this as a way of reassuring patients and their carers and relatives and enhancing patient safety.

My noble friend Lord Winston’s Amendment 2 seeks additional safeguards for patient safety by reference to excluding treatment where a,

“body of responsible medical opinion”,

considers that the treatment is likely seriously or unreasonably to compromise patient safety. He has raised some very important issues here, particularly in response to cancer treatment, and I look forward to hearing from the noble Lord, Lord Saatchi, or the Minister.

The clarification the noble Lord, Lord Saatchi, provides in Amendment 7 concerning the issues to be recorded in the patient’s notes provides welcome safeguards. It does not include the full range of issues, covered under Clause 1(3), which noble Lords have been concerned to see recorded in the patient’s notes, but it goes some way to providing the greater transparency and accountability that we all wish to see, particularly in recording the doctor’s decision to depart from the existing range of accepted medical treatments for the patient’s condition and the explanation of the proposed treatment.

Finally, we have considerable sympathy with Amendment 13 for the reasons ably put forward by my noble friends Lord Winston and Lord Turnberg, and I look forward to hearing from the noble Lord, Lord Saatchi, or the Minister on this issue.

Medical Innovation Bill [HL]

Debate between Lord Mackay of Clashfern and Baroness Wheeler

Friday 24th October 2014 Lords Chamber

[Lord Mackay of Clashfern (Con)]

My Lords, I had not intended to take much part this morning but, my name having been mentioned, I am stimulated to respond. The Bill is about innovation. Therefore, if a doctor is attacked for some failure in respect of innovation, the ordinary rules of defence that are presently available do not seem appropriate. Our colleagues who are excellent innovators have managed to avoid the necessity for litigation as a result of their innovations. However, if by any chance any of them were challenged, how would they go about their defence?

I make this basic point in answer to my colleague the noble Lord, Lord Pannick. He quoted what I said at Second Reading. It will not surprise your Lordships if I happen to hold still to what I said then. The point is that when there is an innovation, there is not much material on which to judge whether it is reasonable or proportionate. If there were in the existing practice, it would not be an innovation. The problem is therefore that the ordinary formulations of reasonable and proportionate with which lawyers are very familiar—I am enough of a lawyer to be familiar with them—are not really appropriate. I believe that the test which my noble friend Lord Saatchi’s Bill originally had, and which is preserved among all the innovations that have taken place since, is in Clause 1(4)(a):

“Nothing in this section … permits a doctor to administer treatment for the purposes of research or for any purpose other than the best interests of the patient”.

That is a simple test which the doctor must face at the time of innovation and, so far as I am concerned, elaboration with the familiar legal phrases that are very dear to lawyers is a mistake. I therefore adhere to what I said at Second Reading.

I should perhaps say that I am not entirely without experience in this area for when I was in practice in Scotland, which is now a long time ago, I did quite a lot of work in the Medical and Dental Defence Union of Scotland area. My very first appearance as a counsel in this House was in respect of a doctor’s negligence. My experience was over quite a long period; it may not have been very good but it was certainly extensive. I very much support the Bill and hope that we need not get around to voting on it today. There is plenty of scope for discussion about these matters and a good deal of substance in many of the amendments. We should discuss them further and, if necessary, have votes on Report.

[Baroness Wheeler (Lab)]

My Lords, on behalf of these Benches I welcome the commencement of the Committee stage of the Bill. At Second Reading we underlined the necessity for close scrutiny by this House, and we are pleased that the opportunity has been presented to us. In that debate there was both strong support for and strong reservations about the Bill, with many questions and issues to be addressed. We have moved on since then, but despite acknowledged progress made on safeguards for staff and patients contained in the amendments from the noble Lord, Lord Saatchi, there remain crucial reservations and concerns from key parts of the medical profession and from patients’ organisations, as we continue to discuss today.

We commend the work that the noble Lord has undertaken on the Bill, and feel that the changes on patient and staff safety signify improvements to it. It is reassuring that his proposed amendments have the backing of Sir Bruce Keogh, the NHS medical director, and the Government, and that the common-law Bolam test would remain unaffected by the Bill. The noble Lord, Lord Saatchi, knows that there is strong support for the principles and the intent of what he is trying to achieve. Labour has always strongly supported efforts to put innovation at the heart of the NHS and to bring innovative treatments to patients faster.

After Second Reading, the Minister for Health, Dr Daniel Poulter, responding to a Parliamentary Question in the Commons from Labour on the progress of the Bill, acknowledged the Government’s support for the principles of the Bill but emphasised that the amendments were necessary,

“to ensure it does not: put patients at risk; deter good and responsible innovation; place an undue bureaucratic burden on the National Health Service; or expose doctors to a risk of additional liabilities”.

These four key tests are what we should keep firmly in focus today, and I hope that the noble Lord, Lord Saatchi, and the Minister will address whether they consider that the tests have been met in the revised Bill in their responses to the issues that have been raised today.

I will limit myself to speaking on just some amendments in this group. Like other noble Lords, I look forward to hearing from the noble Lord, Lord Saatchi, and the Minister on the key issues raised by the many experts in this field who have spoken today. On patient safety, as I have stressed, we welcome the efforts made by the noble Lord, Lord Saatchi, in his amendments to address widespread concerns that the overall Bill would encourage reckless rather than responsible innovation and put patients at risk. We support the new emphasis on reasonable and responsible innovation contained in amendments in the next group, as well as the reference in Amendment 10 in this group from the noble Lord, Lord Pannick, and my noble friends Lord Turnberg and Lord Winston, to the doctor needing to act in a manner that is both reasonable and proportionate. The new provisions in Amendments 8 and 9 are important because we recognise that they are designed to provide that a doctor’s departure from the existing range of accepted medical treatment for a condition is not negligent where the decision to depart is taken responsibly.

We also welcome the deletion of the references in the previous Bill to the doctor’s responsible officer and appropriately qualified colleagues in respect of the staff to be consulted about the proposed treatment. These caused much confusion among both supporters and people with concerns about the Bill, and the new reference in Amendment 16 to the need to obtain the views of one or more appropriately qualified doctors in relation to the proposed treatment is clearer—although it is a critical area that will also need to be developed under guidelines, codes and/or regulations. It needs to be clear who is an appropriate qualified doctor. The new definition of a doctor being,

“appropriately qualified if he or she has appropriate expertise and experience in dealing with patients with the condition in question”,

is also an improvement to the Bill, although the question of the independence of the doctor whose opinion is being sought is a critical one.

My noble friend Lord Turnberg addressed this earlier with much force under Amendment 7. Key stakeholders have stressed that requiring the doctor to have regard to the opinions of other professionals responsible for patients’ care, together with the requirement for written consent to be sought from at least one other doctor who is independent of the responsible doctor, would be a welcome step in providing more clarity to the process.

There is an extremely worrying potential for conflict of interest here—for example, in the supporting doctor’s involvement in the development of the drug or treatment in question—and clear guidelines and rules of engagement will be essential. Sir Robert Francis QC points to the problem that arises from the choice of the appropriate qualified doctor to consult resting entirely with the doctor wanting to offer a new treatment. He or she is free to choose someone in his own partnership or laboratory, or someone with a commercial interest in promoting or selling the treatment. It is less than clear who is the final judge of whether the individual is appropriately qualified. There is also concern among a number of stakeholder groups that pharmaceutical companies could put undue pressure on doctors to try out potentially dangerous treatments, and this concern will also need to be addressed.

Concerns remain that the involvement and consent of patients to untested innovative treatments are not more explicitly in the Bill. Amendment 14 from the noble Baroness, Lady Masham, addresses this issue by specifying the need to obtain informed consent in light of the aims, processes and risks. I look forward to hearing further from the noble Lord, Lord Saatchi, on how he considers the Bill can address this, as this point has been raised by a number of noble Lords in the debate.

Care Bill [HL]

Debate between Lord Mackay of Clashfern and Baroness Wheeler

Monday 21st October 2013 Lords Chamber

[Lord Mackay of Clashfern]

I also agree with the view that these are important headings. The precise detail has been mentioned by the noble Lord. Regarding paragraph (c) of Amendment 167, I think that access to the data is quite important although it requires consideration. It is important that the experiment or trial can be repeated. One of the difficulties in the past has sometimes been the announcement of research findings. When those in the same area tried to find out exactly what the findings were based on, there was some difficulty in repeating the experiment and occasionally there was something seriously wrong with the research. Therefore, access to the data certainly has to be kept in view if one is going to have proper transparency. However, I accept that, like paragraph (c) of Amendment 167 and the other paragraphs, it requires an amount of restriction in certain cases.

[Baroness Wheeler]

My Lords, I welcome the Government’s decision in Amendment 167 to support the recommendation of the Joint Committee on promoting transparency in research and ensuring full publication of the results of research consistent with patient confidentiality. It is right that this should be a statutory objective of the Health Research Authority. The arguments in support of this at the Committee stage from noble Lords were very compelling and, since then, have been strongly reinforced by the House of Commons Science and Technology Committee report into clinical trials and, indeed, the strategy and ongoing work undertaken by HRA itself.

In particular, HRA’s September announcement requiring registration of clinical trials in a publicly accessible database as a condition of ethical acceptance—taking up a longstanding recommendation of the Association of Medical Research Charities—recognises the overwhelming support for this agenda. The HRA has much to do in the coming months to develop its guidance into practical measures, but the Bill now gives clear and explicit direction to its work. The HRA has stressed that it expects the vast majority of researchers, sponsors and funders to embrace the plans to realise greater openness, responsible data sharing and publication of all results, and this is very welcome news.

It is so important for patients and the public to have confidence that the research they have been involved in will be used in the best way to improve understanding and health outcomes for the groups involved. Improved transparency is vital if more patients are to be encouraged to become involved in clinical research—one of the key ambitions of AMRC’s excellent vision for research in the NHS. The noble Lord, Lord Willis, referred to reservations. I was going to raise them and I am glad he did. I look forward to the Minister’s response. He may need to write to us in detail about those reservations and his response to that, or there might be a need for some small rewording of the draft provisions before Third Reading.

Finally, we recognise that the HRA is strongly committed to working with other bodies to overcome the barriers to transparency and create a culture of openness. Changing culture is, however, a tough call in the NHS. We also know from the AMRC research survey covering both doctors and nurses that we have a long way to go to get NHS staff to take part in research in the first place, let alone sign up to the transparency agenda. GPs are an important gateway for getting patients involved in research. However, although a majority of GPs surveyed believed it very important for the NHS to support research and treatment for their patients, only 32% of those surveyed felt it was very important for them to be personally involved. Will the Government ensure that HRA and HEE work closely on this very important issue of buy-in to research and transparency by NHS staff? How will they ensure that the CCGs fully engage in this agenda?

Care Bill [HL]

Debate between Lord Mackay of Clashfern and Baroness Wheeler

Monday 14th October 2013 Lords Chamber

[Lord Mackay of Clashfern]

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

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

[Baroness Wheeler]

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

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

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

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

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

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

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

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