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Access to Palliative Care and Treatment of Children Bill [HL] - Second Reading

Part of the debate – in the House of Lords at 3:40 pm on 7th February 2020.

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Photo of Baroness Finlay of Llandaff Baroness Finlay of Llandaff Deputy Chairman of Committees, Deputy Speaker (Lords) 3:40 pm, 7th February 2020

My Lords, I thank all noble Lords who stayed behind on a Friday to contribute and who have done so much research behind the speeches they gave in support of my Bill. I can confidently say that the first part of the Bill has full—from many, completely overwhelming—support. I am extremely grateful for that, as will be all those who are trying to provide excellence in end-of-life and palliative care. I single out the noble Lord, Lord Brownlow, for his amazingly warm maiden speech, in which he showed his understanding of vulnerability and of the fundamental principle of the duty of people in society to look after each other. All noble Lords gained a great deal from it.

I know that the hour is late and we all want to move on, but I will turn briefly to the concerns expressed over Clause 2(4). I am delighted that so many noble Lords want to discuss it. I am more than happy to do so, and to amend it. We have to get things right; this was my humble start. We have fantastic expertise. I reassure the noble Lord, Lord Hunt, that I am in conversation with Together for Short Lives. The noble Baroness, Lady Jolly, has been incredibly helpful to date and I am sure would join me when I say that we should expand the discussions to include the noble and learned Baroness, Lady Butler-Sloss, the noble Lord, Lord Hunt, the noble Baroness, Lady Brinton, and my noble friend Lady Hollins, all of whom have enormous experience. There is no conflict; the wording in the Bill is not right. However, we do need to rebalance the way that the voice of the parent who is genuinely concerned can be heard—probably in the pre-court time—and is then represented by barristers speaking on their behalf.

I take slight issue with the noble Baroness, Lady Meacher, over parents always wanting their child to stay alive. I have had in-depth conversations with parents who have said: “Enough is enough. Can we withdraw? Can we stop?”. I have been involved in extubating children and looking after them as they die peacefully and gently in their parents’ arms. I have helped parents lay out their child after death. It is such an anguishing time, but their overriding concern is to prevent the suffering of the child they love and to have their views and culture respected in the way that that is done.

I am grateful, too, to the noble Lord, Lord Berkeley of Knighton, for highlighting the need for open conversations. I declare an interest in Dying Matters; it is part of Hospice UK and I was part of the group that set it up. It has done an enormous amount to lift the lid off the taboo. People now talk openly about dying. If you go in to any out-patient department, people will sit and talk openly with clinicians about their death and dying. In the gap, the noble Lord, Lord Kerr of Kinlochard, rode into the debate like a shining knight to blow apart the reasons for not legislating for access to palliative care. I would welcome further advice from his vast experience on how we drive this forward. I am sure that that will be in conjunction with the noble Lord, Lord Ribeiro, who brought his experiences and salutary tales of how it used to be. He and I know how awful it was and how it does not need to be like that.

On mediation, the noble Lord, Lord Balfe, made a point about the great importance of listening. Nearly always, things go wrong when people have not listened early on—listened to what people say, listened to their expectations and tried to understand things from their point of view. How true that is. If only people spent 80% of their time listening instead of talking, we might have less misunderstanding.

The noble Lord, Lord Sheikh, brought his experiences of the hospice world and his wide support for it, and also his experience of mediation, to support this. I do think a pilot would be most welcome, as the noble Baroness, Lady Stroud, said in talking about the need for mediation. In fact, there is a Court of Protection pilot going on at the moment over mediation, run by a group of solicitors. There is something to be said for the complete independence of somebody coming in, rather than the clinical team that is already involved and can be perceived as having already taken some kind of stance. Certainly, any kind of pilot needs evaluating, so all those comments were very welcome.

Finally, the noble Baroness, Lady Brinton, highlighted that resources are not just money but also people, and the noble Baroness, Lady Thornton, pointed out that you need people to address the variations: money does not do it, you need trained people. She asked about the number of people in palliative medicine. I just sound a tiny note of warning because, as the shape of training changes, there will be fewer doctors for a time, unless we put the numbers up: they will be doing a lot more in acute medicine and supporting acute medical services, bringing their skills there—but we cannot think that, just because the numbers have gone up from the early days, we have got there yet.

I hope that I have adequately paid tribute to the fantastic contributions of everybody in the debate and I look forward to discussions with the Secretary of State and the Minister with responsibility for this area, because I feel we are at the point where sometimes it needs a jolt. I go back to the analogy with seat belts and tobacco control. Perhaps I have still got too much in the first part of my Bill; I am happy to take it down. But laws send messages, and the variation, as seen in the atlas, despite all the work that so many of us have done over decades, shows that it is now time for that jolt to happen. I beg to move.

Bill read a second time and committed to a Committee of the Whole House.

House adjourned at 3.48 pm.