Health and Care Bill

(Limited Text - Ministerial Extracts only)

Lords Hansard - Part 1 & Committee stage
Wednesday 9th February 2022 Lords Chamber

Relevant documents: 15th, 16th and 19th Reports from the Delegated Powers Committee, 9th Report from the Constitution Committee

[The Parliamentary Under-Secretary of State, Department of Health and Social Care (Lord Kamall) (Con)]

My Lords, I should like to update the House on a matter that has generated significant concern. I have noted the strength of feeling in the House on the issue of, and draft guidance on, elected councillors being appointed to integrated care boards. I discussed this matter with NHS England and can confirm that it will revise its draft guidance to remove the proposed blanket exclusion of local authority members sitting on integrated care boards. I am informed that, although ICB members from local authorities are normally likely to be officials, local councillors will not be disqualified for selection and appointment to an integrated care board.

I welcome this development and hope that it demonstrates that the department and NHS England are actively listening and responding to scrutiny and debate in this House. I have also informed the noble Baroness, Lady Thornton, and asked for a meeting between the Labour Front Bench and NHS England on its preparations.

[Lord Kennedy of Southwark (Lab Co-op)]

I thank the noble Lord for that information. Before we continue with the Committee on the Bill, I wanted to raise my concerns on the Floor of the House as to the importance of always treating each other with respect and courtesy. It is not the fault of anyone in this House that despite a majority of 80 in the other place, the Government have taken longer than expected to present several Bills to this House for our consideration. Although backed by the other place—I fully accept that—the Bills are very controversial in nature and quite properly attract considerable attention.

On a few occasions when considering the Nationality and Borders Bill last night and into the early hours of the morning, our standards slipped. We have another long day ahead of us today and another tomorrow before we all have a well-deserved break in the Recess. I hope that Members on all sides of the House, no matter what position they hold, will respect and pay proper attention to the advice and guidance as set out in the Companion. Committee is a conversation, different from both Question Time and Report. Shouting “question, question, question” from a sedentary position is unacceptable in Committee. Chapter 4 on the conduct of the House and Chapter 8 on Public Bills in the Companion are helpful and informative. I respectfully suggest that all Members regard it as essential reading.

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[Baroness Jones of Moulsecoomb (GP)]

My Lords, the Green group would like to throw its considerable weight behind the two noble Lords who have just spoken. What we saw last night was disgraceful, and I hope we never see it again.

[Earl Howe (Con)]

My Lords, in the absence of my noble friends the Leader of the House and the Chief Whip, I will respond very briefly to the noble Lords who have spoken by saying that I shall ensure that the comments and questions do reach the Leader, and are treated with appropriate seriousness. We have all heard propositions from both noble Lords on the Front Benches opposite with which there would be wide agreement in the House as to the way we should conduct ourselves. In a spirit of sympathy with many of the comments made, I hope noble Lords will agree that it is appropriate that we discuss this in the usual channels.

Amendment 284

Moved by

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[Baroness Wheeler (Lab)]

My Lords, very briefly, we welcome the Government’s proposals on mandatory disclosure of payments, a companion piece to the previous debate that we had, as has been pointed out.

As noble Lords have always stressed, greater transparency is highly desirable and a very good thing. I am grateful to the Minister for listening to the voices of stakeholders and parliamentarians on this. Indeed, nine out of 10 medical professional bodies think that patients have a right to know if their doctor has financial or other links with pharmaceutical or medical device companies and they support stronger reporting arrangements, as contained in the amendments. I am grateful for the briefing I have received from the ABPI, which, as we have heard, also supports mandatory disclosure.

I also note that Amendment 312D refers specifically to the consultation with the devolved Administrations in Scotland, Wales and Northern Ireland and to obtaining the

“consent of the Scottish Ministers, the Welsh Ministers or the Department of Health in Northern Ireland … before making provision within devolved legislative competence in regulations relating to information about payments etc to persons in the health care sector.”

We would welcome the Minister reassuring us that full consultation is under way and setting out the timescales involved.

On Amendment 284, the non-government amendment leading this group, the intention of the amendment and the arguments put forward by noble Lords are extremely persuasive. The requirement for companies involved in the production, buying or selling of pharmaceutical products or medical devices to publish any payments made to teaching hospitals, research institutions or individual clinicians is a sensible measure that would complement the Government’s package, and I await the Minister’s thoughts on it, including on the one glitch underlined by the noble Baroness, Lady Cumberlege, on moving from “may” to “shall”.

[Lord Kamall (Con)]

My Lords, I thank all noble Lords who took part in this debate, especially my noble friend Lady Cumberlege for her work on the independent review of medicines and medical devices, and other noble Lords who were involved in that. I know that she worked tirelessly to make sure that patients and their families have been heard and I pay tribute to her and her team. I also thank her for her lobbying—or reminding—me of the pledge that I made when I first became a Minister on championing the patient.

I welcome my noble friend’s amendment to increase transparency and promote public confidence in the healthcare system. The Government fully support the intention behind the amendment. That is why I will be moving Amendments 312B, 312C, 312D, 313B, 313C and 314ZB in my name. Before I do so, let me answer some of the questions.

All these amendments relate to the transparency of payments made to the healthcare sector. The Independent Medicines and Medical Devices Safety Review led by my noble friend Lady Cumberlege listened to the brave testimony of over 700 people to understand where improvements needed to be made to make the healthcare system safer for all patients, especially women. The Government have given the review deep consideration and accepted the majority of its nine strategic recommendations and 50 actions for improvement.

To improve transparency, the review recommended that

“there should be mandatory reporting for pharmaceutical and medical device industries of payments made to teaching hospitals, research institutions and individual clinicians”.

The amendments deliver on this recommendation by enabling the Secretary of State to make regulations requiring companies to publish or report information about their payments to the healthcare sector. The clause covers any person performing healthcare as part of their duties, benefiting patients and building on initiatives by regulators and industry. I hope that partly answers the questions raised by the noble Lord, Lord Stevens.

The amendment also allows for the Secretary of State to make regulations requiring that the information be made public and make further provision about when and how the information must be published. This could include requiring self-publication or publication in a central database. That ensures that we can adapt the system to improve reporting as necessary. To ensure that companies fulfil the obligation, requirements introduced by the regulations can be enforced using civil penalties.

There are benefits to this duty applying UK-wide, aligning with the approach taken by the pharmaceutical industry with its Disclosure UK system. As the noble Baroness, Lady Wheeler, referred to, the clause contains a statutory consent requirement, so we will work closely with the devolved Governments to develop regulations following the passage of the Bill. We will also work with patients, industry and healthcare providers to create a system that enhances patient confidence while maintaining a collaborative, world-leading UK life sciences sector.

A question was raised about the issue of “shall” versus “may”. The Government have not tabled these amendments in bad faith; we would not have tabled these amendments if we did not intend to work with them. It is the intention of my right honourable friend the Secretary of State to bring forward regulations under the clause to make sure that there is transparency. If that is not reassuring enough, perhaps between this stage and Report there can be some conversations to make sure that noble Lords are assured. It is for these reasons that I ask your Lordships’ Committee to support these amendments.

[Lord Patel (CB)]

Can the Minister confirm what he just said: that it is the intention to bring regulations? How strong is that intention? The “may” creates a problem.

[Baroness Bennett of Manor Castle (GP)]

My Lords, can I add a question about timeframes to that? When can we expect the regulations?

[Lord Kamall (Con)]

I have two points to make to the noble Lord. First, I have been advised that this is standard wording. Secondly, I have made the assurance at the Dispatch Box. It is here; it is on public record that the Government intend to bring forward regulations. On the timeframe, I will either write to noble Lords or arrange a follow-up meeting. I will make sure that there is some communication to bridge that gap.

[Baroness Cumberlege (Con)]

My Lords, I thank everybody who has taken part in this debate, particularly my noble friend the Minister for the work he and his officials have done to bring this into the Government’s remit. That is so important, because I learned through the passage of the Medicines and Medical Devices Act that we could incorporate the patient safety commissioner and some of the other things we wanted to achieve only through government amendments. My heart leaped when I saw these amendments and I thank the Minister.

I still think these amendments could be improved and it is important that we get the word “shall” in, or “might” or whatever others have said, rather than “may”. I was looking at the Oxford English Dictionary. My father-in-law was the publisher to the Oxford University Press, so the dictionary is very close to my heart. The dictionary says that the verb “shall” relates to the right or sensible thing to do, whereas the verb “may” is defined as a possibility.

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[Baroness Wheeler (Lab)]

My Lords, I thank the noble Baroness, Lady Finlay, for this amendment and other noble Lords who have contributed to this highly emotional and compelling debate about the welfare, care and medical treatment of critically ill children. I also thank Emma Hardy MP for ensuring that this key issue was debated in the course of the Bill’s passage through the Commons and the work that she, other MPs and noble Lords have undertaken with parents and medical staff to help build and develop the framework that is set out in the amendment where care and treatment are disputed: Charlie’s law, in memory of Charlie Gard.

The amendment seeks to mitigate conflicts at the earliest stages, provide advice and support, and improve early access to independent mediation services to prevent the traumatic and bitter legal disputes that we have all seen all too often. Noble Lords have highlighted these, as well as the benefits that the step-by-step processes set out in the amendment would provide for parents and doctors, which are of course central to the consideration of the child’s welfare and best interests. In particular, providing families with access to legal aid if court action takes place would, as the noble Baroness, Lady Finlay, pointed out, ensure that they do not have to rely on raising funds themselves, or on the financial support of outside interests.

Today’s debate has been powerful but has also demonstrated the difficulties with trying to address and resolve such deeply complex issues within the context of an already overloaded and skeletal Bill. Like other noble Lords, I have received the excellent briefing from the Together for Short Lives charity, which does such remarkable work on children’s palliative care to support and empower families caring for terminally ill children. While supportive of much of the amendment, the charity has what it terms “significant reservations” about proposed new subsection (4) on the issue of amending the court’s powers in relation to parents pursuing proposals for disease-modifying treatment for their child after the final court decision.

So, while there is obviously considerable support for the measures set out in the amendment, as we have heard today, the reservations about this and other provisions in the amendment, from Together for Brief Lives and other organisations, emphasise the need for the continued dialogue and discussion that we are not able to have today but which noble Lords have made clear is needed. This has been an excellent debate and I hope the Minister will be able to find supportive ways of taking this vital issue forward.

[Earl Howe (Con)]

My Lords, the noble Baroness, Lady Finlay, has brought a vital and sensitive debate before the Committee, for which I for one am very grateful. At the heart of each of these difficult cases is, as she said, the well-being of a child, and that principle has to remain uppermost in everyone’s mind. While the views of parents and guardians are routinely considered in everyday care, occasionally difficult disputes will arise. When they do, we should carefully consider how best to protect the interests of the child. I will start by saying that I fully agree with the noble Baroness that any failure to listen to the concerns of parents or a guardian would be bad practice.

However, I have a concern about the practical impact of this amendment. In cases of the care of children with life-limiting illnesses, the amendment would place the views of parents and guardians above those of clinicians and—let us be clear—the courts, which have a statutory obligation to act in the best interests of the child. Establishing a default presumption in favour of the parents’ views would fundamentally change the current balance. It would move away from the impartial assessment of the individual child’s best interests being paramount based on all the evidence in each specific case.

I understand the view that parents know what is best for their child and their wishes should be paramount. Sadly, though, I am afraid that I cannot fully agree with the proposition advanced in the amendment. It is sometimes the case that desperate parents in these tremendously difficult circumstances are subject to the flattering voice of hope and, as a result, are not acting in a way that is necessarily in the best interests of their child.

To protect the child, it is right that when every effort at resolution has been unsuccessful there is recourse to a judicial process that can impartially assess all the evidence as to what treatment is best for the child. I also fear that it would be difficult for a clinician to determine, in the wording of the amendment, “anyone else” who has an interest in a child’s care. In considering the provisions of the amendment, I note that a child’s medical data can already be provided to parents following a subject access request, so we do not feel that legislation here is necessary. I absolutely agree that specialist palliative care teams should be part of the multidisciplinary team for any child or adult with a complex life-limiting illness; their involvement is an integral part of good practice, and I would expect referrals in such situations. However, I do not agree that it is necessary to put that into law.

Let me say something about mediation. I listened with care to my noble friend Lord Balfe. We know that mediation can and often does play a vital role in facilitating better communications and creating a space where voices on both sides of a dispute can be heard in a non-adversarial way. Unfortunately, that does not provide a solution in every dispute. The Government are supportive of the many excellent mediation schemes already available, including through charities and the private sector. We agree that parents and clinicians should be able to access such schemes where they wish to do so. However, we are not convinced that legislation is the answer to these thankfully rare but nevertheless tragic cases.

The current lack of statutory prescription means that mediation can be tailored specifically to meet the individual needs of families and their children, clinicians and hospitals, reflecting the unique circumstances of each case. There is currently a wide range of work and research into avoiding such protracted disputes and improving the approach to managing conflicts, with the aim of promoting good, collaborative relationships between parents and healthcare professionals to seek resolution without lengthy and costly legal battles. Furthermore, on those rare occasions where disputes are heard before a court, the amendment seeks to extend legal aid. Legal aid is already available for best interests cases, albeit subject to a means and merits test.

I understand the strong views on the amendment across the Committee. I understand that these issues are ethically charged and I take them seriously. However, I also believe that the current approach properly balances the views of parents and guardians with those of clinicians and, above all, with the paramount importance of the best interests of the child in question. The sensitivities around this subject are acute but I hope that what I have said has clarified why I do not feel able to accept what I know is a well-intentioned amendment.

[Baroness Finlay of Llandaff (CB)]

My Lords, I cannot hide my deep disappointment at the response from the Government, because I think this situation will only get worse unless we recognise the difficulty of decision-making when you are faced with a child whose prognosis is poor, who has a very rare condition, where nobody has a test to predict what will happen, and where the parents feel that they are not being listened to.

Currently in the NHS we have clinical teams that change rapidly. The one person—often—who has continuity and has seen the child day after day is the mother; sometimes it is the father who is with the child all the time. But you get different clinical teams, and you may have a gap of five days between one doctor visiting and coming back, and they may say: “Oh my goodness, what a change.” But when you have a handover, you do not get a complete picture.

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[Baroness Merron (Lab)]

My Lords, I thank my noble friend Lady Chakrabarti for raising the crucial matter of countries and peoples left behind in terms of the opportunity to have a necessary vaccination programme available to them. My noble friend Lord Campbell-Savours spoke of the importance of supporting innovation, which is one of the ways in which we can ensure that, while my noble friend Lord Howarth rightly said that the subject requires exploration outside of the Health and Care Bill—something also commented on by the noble Lord, Lord Crisp, who emphasised, as do I, the need for the political will to make progress.

There is no doubt, as we have heard today, about the gravity of the issues at stake and the need to resolve them. It is the case that where public funding is provided there must be conditionality, although of course that may be complex to refine into legislation. There are of course additional issues when funding is also coming from the private sector along with a need to ensure a balance of interests. It would certainly be helpful to have a stipulation that avoided placing undue bureaucracy and restraint on smaller developments and small-scale research. We do not want to see the pace of research slowed down with researchers tied up in lengthy proposal writing, contract negotiations and legal agreements.

As my noble friend Lady Lawrence has said, we know that the pandemic is not over until it is over everywhere, so the amendment raises the opportunity to explore whether the immediate waiver of intellectual property rights would mean an end to the pandemic everywhere. It is relevant to assess what contribution or otherwise intellectual property rights make to the promotion of technological innovation and the transfer and dissemination of technology. There is an advantage for producers and users of technological knowledge and the consideration of rights and obligations, and that needs to be considered in the round.

In respect of the response and actions to a pandemic declared by the World Health Organization, while I understand the intention behind the amendment, in order to be consistent I would comment with some caution about the Secretary of State being compelled to immediately take actions, particularly without any form of oversight—something that we will return to later in Committee.

However, I hope that today we can obtain some reassurances from the Minister about the Government’s intentions and plans in order that we can find a way forward so that low-income countries and their peoples have access to vaccines both now and in future.

[Lord Kamall (Con)]

I thank the noble Baroness, Lady Chakrabarti, for bringing this debate before the Committee today and for the heartfelt speech that she gave. The noble Baroness will be aware of the view of this Government following her recent Question in the House on the subject of patient waivers. As my noble friend Lord Grimstone set out, the Government remain open to all initiatives that would have a demonstrably positive impact on vaccine production and distribution. However, we believe that waiving intellectual property rights would have the opposite effect. Doing so would dismantle the very framework that helped to develop and produce Covid-19 vaccines at the pace and scale now seen. It would risk undermining the continued innovation in vaccines and technological health products that is required to tackle a virus, especially as it mutates and evolves, so we believe that doing so would be a mistake.

Instead, the success of the Covid-19 vaccine rollout vindicates the value of public and private co-operation. While university research departments are great at research, large-scale manufacturing and global distribution are not their function, so we recognise the importance of their working with partners with expertise in this area.

The intellectual property framework is key to those efforts. It has incentivised the research and development that has led to the development of Covid-19 vaccines. It has given innovators the confidence to form more than 300 partnerships, an unprecedented number, and has contributed to the production and dissemination of vaccines and other health products and technologies across the world, with global Covid vaccine production now at nearly 1.5 billion doses per month.

I share the noble Baroness’s intention that research funded through taxpayer finances should benefit the taxpayer, but we do not consider that that is best achieved through particular constraints in primary legislation. Research contracts afford greater flexibility and more powerful levers than the amendment, through provisions such as those requiring the dissemination of intellectual property for patient benefit, revenue sharing with the Government of commercialised intellectual property, and requirements around access to medicines in the developing world. Contractual protection mechanisms in funding arrangements can also ensure that intellectual property funded by taxpayers results in the creation of taxpayer benefit.

[The remainder of today’s proceedings will be published tomorrow.]