Health and Care Bill

Debate between Baroness Finlay of Llandaff and Earl Howe

Lords Hansard - Part 2 & Report stage
Wednesday 16th March 2022 Lords Chamber

[Earl Howe (Con)]

My Lords, I first thank the noble Baroness, Lady Finlay, for having brought forward this important issue for debate and for introducing it in her characteristically informed and professional way. I assure her that I understand the issues she has highlighted and why she has done so. There is no doubt in my mind that the kinds of case that she has cited are extremely distressing and stressful for all involved, and can, on occasions, be contentious.

The Government agree that mediation is often a good route to take when there is such contention. Parents and clinicians should have access to high-quality, independent mediation schemes where they wish to do so. There are many mediation schemes available and we are very supportive of them.

The NHS already ensures access to mediation in many cases, and we strongly encourage it to continue doing so. But, at the same time, we need to ensure that those schemes are effective in the different contexts in which they are needed. Currently, organisations have the flexibility to offer mediation services earlier in a dispute or to prevent such disputes arising. They have the flexibility to tailor services specifically to the unique circumstances in which they are needed.

I hope the noble Baroness would agree that each case is unique. It is essential that everyone is able to have their voice heard, that there is a good understanding of different perspectives and that there is appropriate involvement of parents in decisions about the care and treatment of their child. Naturally, in that process, differences of opinion can and do arise.

The key to progress in this area is something deeply nuanced—human relationships. That is why I believe that, rather than legislation, our efforts are better directed at working together to develop systemwide solutions about how disagreements can be avoided or recognised early and, most importantly, sensitively managed. We need to ensure that in these difficult situations NHS trusts and staff are well equipped, well prepared and well supported to make that sure parents’ feelings and concerns are fully considered and supported, and that the relationship remains positive and constructive. We know that there are already examples of best practice and guidance but we need to do more.

To improve the outcomes of these difficult cases, we need to look at the whole process. We need to look at how best practice can be shared across the system to ensure that parents’ voices are heard throughout the process, not just in mediation, and how we can prevent disputes arising in the first place. In the rare cases when a dispute does arise, we need to focus on the quality of mediation schemes and not just prescribe that mediation is offered by default.

To look at how best we can embed best practice, training and advice on shared decision-making and dispute resolution across the system, the Minister for Patient Safety and Primary Care has agreed to chair a round-table event facilitated by the Nuffield Council on Bioethics. This will build on the work already being done by bringing together key stakeholders to agree actions that support the creation of healthcare environments that foster good, collaborative relationships between parents and healthcare staff. I have also offered to meet Connie Yates and Chris Gard to hear their experiences and discuss how we can support better collaborative relationships between parents and healthcare staff. I hope this demonstrates that the Government understand the importance of this issue and that we are committed to addressing it.

It is the Government’s view—I say this with some regret—that putting this amendment or another in the Bill will not help improve the outcomes of the very difficult, rare situations in which an unresolvable dispute arises. This is because efforts need to be focused on a holistic approach to dispute resolution to improve the process as a whole. Merely allowing for mediation to be available at the end of a dispute will not do this; either party could refuse it and allowing mediation will not, we think, drive the careful, sympathetic and considered work with parents and carers that this topic so urgently demands.

I recognise that these are difficult matters, but I think progress will best be made through practical, down-to-earth work across the system and by bringing in a wide range of perspectives. This is what I am now offering and I therefore hope that, in reflecting on that offer, the noble Baroness, Lady Finlay, will feel able to withdraw this amendment.

[Baroness Finlay of Llandaff (CB)]

I am most grateful to everyone who has spoken. I realise that the time is late so I will try to be very brief in responding. I appreciate the offer of Nuffield to host another round-table event. I believe it held one recently and it had its previous inquiry. The sad reality, however, is that over recent decades of trying to teach communication skills, things have not improved as much as they should. One of the reasons is high staff turnover, which means you educate one group and it moves on. Yes, things have to be sensitively managed, but the role models come from the seniors. We are not talking about the vast majority, who are doing really well. The problem is that the people who are not doing well are the very ones who do not take up the education and do not want to change. I believe we have now got to the point where we need to send a very clear message and put this in the Bill. I beg leave to test the opinion of the House.

Health and Care Bill

Debate between Baroness Finlay of Llandaff and Earl Howe

Lords Hansard - Part 2 & Report stage
Thursday 3rd March 2022 Lords Chamber

[Baroness Finlay of Llandaff (CB)]

Before the noble Earl sits down, may I apologise to the House? I should have declared that I am the UK chair of Commonwealth Tribute to Life, which aims to establish a memorandum of understanding across the Commonwealth over ethical transplantation.

The Minister, in his reply, spoke of seven patients who are known to have travelled abroad for organs. Most of those were legally arranged, so the numbers are very small; yet the clinical services in the UK are not aware that it is illegal to arrange to purchase an organ abroad if most of that transaction happens in the UK, or to procure the travel to go. I wonder whether the Minister would be able to undertake to work with us in NHSBT to ensure that all the clinicians working in the field are aware of this and can brief patients appropriately at the time they sign up to be on the transplant list, so that they understand that, although they are eligible for a transplant, they should not be seeking transplants in other countries, even when tempted to do so. It can look quite alluring, and I am concerned that, within the profession itself, there might be some misunderstanding. I realise this is a difficult question and the Minister might prefer not to answer it now; it might be something we could discuss later.

[Earl Howe (Con)]

My Lords, that is a perfectly valid question from the noble Baroness, and I would be happy to take that back to those in the Department of Health and Social Care who have direct responsibility in this area.

Health and Care Bill

Debate between Baroness Finlay of Llandaff and Earl Howe

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

[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.

Health and Care Bill

Debate between Baroness Finlay of Llandaff and Earl Howe

Committee stage
Friday 4th February 2022 Lords Chamber

[Earl Howe (Con)]

The noble Lord makes a very good point and, if I may, I will investigate the feasibility of doing that and what systems are in place to capture that kind of data.

I am grateful to the noble Baroness, Lady Finlay, for her Amendment 297H, which covers the retention and use of tissues after coroner post-mortem examinations. I of course share the commitment to promoting education and research. However, I am afraid I do not believe that this amendment represents the right approach to supporting this aim. I appreciate that the noble Baroness emphasised that she was referring to blocks, slides and urine samples; the amendment refers to tissue samples. The advice I have received is that it is important that we remain committed to the principle that consent is fundamental to how we treat the remains of the deceased. I remember the passage of the Human Tissue Act; the noble Lord, Lord Alton, was absolutely right in what he said earlier about that. All of us should have a choice about what happens to our bodies after we die, and if we cannot exercise that choice, those close to us should be able to.

Post-mortems can already be distressing to the families of the deceased. Denying them a say as to what happens to the remains of their loved ones will compound that distress—often unnecessarily, as many of the retained tissues will never be put to use.

There are three other defects, as I see them, in the amendment; I am concerned that it would allow tissues to be stored indefinitely; it would allow for an overly broad interpretation of what constitutes a tissue sample —that is, in fact, my main concern; and it does not address the considerable challenge of how to effectively catalogue, audit or access the large amount of new material that would have to be retained.

Having said that, I believe that under the current consent-based model we can and should do more to encourage the active identification of tissues that could serve an important purpose, and to communicate the significance of retaining this tissue to the deceased’s family when seeking their consent. I understand the force of what the noble Baroness is trying to achieve and there may be different ways of doing that.

While I am grateful to noble Lords for their amendments in this area, I respectfully ask them to withdraw or not press them at this stage.

[Baroness Finlay of Llandaff (CB)]

Will the Minister undertake that the Government ask the Scottish Government about their experience of retaining tissue blocks and slides? Only tissue blocks and slides—not, I stress, organs—are being retained as part of the clinical record, so that we have some information about problems that have arisen. Also, given that the Government accepted the McCracken review, how do they then intend to implement that acceptance? If you accept the need to have consent, there has to be a process by which consent is obtained. You cannot ask for consent prior to the post-mortem because the post-mortem is a judicial process.

[Earl Howe (Con)]

I noted that the amendment tabled by the noble Baroness is closely modelled on the current law in Scotland. Because of that, it fails to account for the significant differences between how Scotland, and England, Wales and Northern Ireland, regulate the storage and use of human tissue. In England, Wales and Northern Ireland, that storage and use is regulated by the Human Tissue Authority. In Scotland, there is no equivalent body and the amendment is silent as to what impact it would have on the authority, especially given the challenges involved in managing the great quantity of tissue that would be retained.

I am aware that many Scots share my concerns about consent for retaining tissue. A recent petition to the Scottish Government highlighted the anguish faced by a grieving mother on learning that she did not have the choice to have some of her child’s remains returned to her. She was upset at how long it took for those remains even to be located, so although this amendment would apply only to adults the same kind of issues would apply.