Baroness Merron Portrait Baroness Merron (Lab)
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My Lords, this eminently sensible amendment sets out various considerations aimed at ensuring that there can be effective mediation when there is a dispute over children’s palliative care. There has been considerable discussion to bring this amendment to its current iteration and I pay tribute to the noble Baroness, Lady Finlay, for her efforts around this, having already secured a meaningful amendment to ensure that ICBs must commission the palliative care services they consider appropriate.

Your Lordships’ House is aware that this amendment and debate come out of the heartbreaking situation of Charlie Gard and multiple other cases like his. I therefore know that this issue has to be handled and considered incredibly delicately, taking into account the best interests of the patient receiving care above all others.

Balancing the views of clinicians and parents is intrinsically and incredibly difficult, and particularly challenging to codify in legislation. This amendment is a rational measure to move towards achieving a better balance and keeping matters out of the court, as the noble Baroness, Lady Finlay, referred to in her opening. We certainly support its intent and I therefore hope that the Minister’s response gives it due justice.

Earl Howe Portrait Earl Howe (Con)
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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 Portrait Baroness Finlay of Llandaff (CB)
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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.