Health and Care Bill

Baroness Wheeler Excerpts

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

[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.

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[Baroness Walmsley (LD)]

My Lords, there is considerable merit in an independent dispute resolution service. I will be very brief, because I believe that at the heart of this is the following: for over two decades, this country has been a signatory to the UN Convention on the Rights of the Child, which recognises that a child has its own rights, independent of its parents. So I was very pleased to hear the noble Baroness, Lady Finlay, refer to the best interests of the child, which will be based on their rights under the convention.

[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.

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[Baroness Walmsley (LD)]

My Lords, I was going to speak for two minutes but now I am going to speak for only half a minute. I have one question for the Minister. I know that his department has a small team developing the National Dementia Strategy. Can he can tell us whether any additional capacity is being planned to add to that small team doing this important work? Frankly, without a national strategy, the new ICSs will not be able to measure their performance in their dementia care plans against a national standard. The matter is urgent, because the position of people living with dementia has worsened during the Covid-19 pandemic and, while we are trying to tackle the backlog of treatments for patients with physical health needs, we must not forget those with dementia.

[Baroness Wheeler (Lab)]

My Lords, I thank the noble Baroness, Lady Greengross, for tabling her amendments, which ensure that we consider dementia care in respect of this Bill and return to recognising the impact that the social prescribing of music and arts can make to dementia sufferers, particularly for patients at the onset of symptoms—although I also heard what my noble friend Lord Winston said about the research needed on this issue. Noble Lords have on many occasions stressed their strong support for Music for Dementia and Singing for the Brain, and it would be good to hear from the Minister what progress is being made. We have also had extensive debates on the importance of social prescribing, and of the arts across health and social care settings, so, again, I think we do not need to repeat what has been said.

On Amendment 291, the key thing is the call for the duty to be placed on each local authority and integrated care system to implement the National Dementia Strategy for their own areas. It is a timely reminder of the need for the promised National Dementia Strategy: can the Minister provide a publication date for it, and update the House on its progress and on the increased funding that the Government have promised will be provided for the implementation of the dementia care plan?

My noble friend Lord Hunt’s Amendment 297D is a stark reminder of the Joint Committee on Human Rights’ concerns over the visiting bans operated in some care homes before the pandemic, following relatives’ complaints about their loved ones’ treatment and standards of care. As the noble Baroness, Lady Brinton, stressed, we know that during the pandemic itself the ban on outside visits of relatives and friends caused huge anxiety and suffering among residents and their families alike, and it is very welcome that visiting rules have now been eased, although the need for maintaining PPE, testing and infection control routines and constant vigilance continues.