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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My amendment aims to reset the balance and ensure that these parents are listened to, because at the moment they feel they are not adequately listened to and get labelled as “difficult”. I am grateful to my noble friend Lady Hollins for spelling that out, because I have seen it all too often: parents in anguish labelled as “difficult” or “angry”. They are trying desperately to explain a complex situation, to bring things to people’s attention and—sometimes—just to be seen by someone a little more senior that the clinicians who have been looking after their child. A child may go from one week to the next without even being seen by the consultant in the team in some places.
Also—I do not like to do this, but I want it on the record—I dispute the phrase “flattering voice of hope”, because without hope we might as well give up on everybody. It is because of hope that parents, such as those of Charlie Gard, find something that has an over 50% chance—nothing in medicine is 100% and there is no absolute—and want to try it. I too have had many conversations with Connie Yates and Chris Gard, and I am sure that if they had been told the chance was 5% they would not have pursued it. That contrasts with adults who will go after chemotherapy if there is even a 2% chance of success, because they are so desperate.
I am grateful to everyone who has spoken. The noble Baroness, Lady Masham, pointed out that this amendment aims to achieve agreement for everyone for the better. The noble Baroness, Lady Brinton, pointed out the costs not only in financial terms but in terms of long-term mental health. This lives on for the rest of the lives of these parents, who live with this, day in, day out, and wake in the night, remembering that they could not be heard. I am afraid to say the clinicians just move on to the next case—of course we do. I am a clinician, and I have seen hundreds of families who have been distressed and in dispute, because they want to be heard—that is all. This is about rebalancing the dialogue.
I am grateful to the noble Lord, Lord Moylan, and particularly to the noble Baroness, Lady Stowell, for giving us the most moving illustration of the background to this. Like her, I was sceptical before I met Connie Yates and Chris Gard in person and had in-depth conversations with them. I have been overwhelmingly impressed by them, and by other parents who have been in this situation and recognise the difficulties and
dilemmas. They are often faced with a clinical team far younger than them, do not have children and do not understand the emotional involvement of parent and child.
I would like to have a conversation with the noble Lord, Lord Balfe. He raised many points which I will not respond to now because of time in Committee, but I point out that this is not about arbitration or looking back. It is about finding the best way forward from where we are now: whether we carry on with attempting treatment or we move the child home, whether we allow the parents to take the child abroad or decide whether to take the child off the ventilator. That is usually the point at which these decisions are being made—of course, if you take the child off the ventilator, they will be dead within a few minutes because they become anoxic. This is not about opening up medical litigation.
I hope we have worded this amendment well. I have had a lot of legal advice over the wording of this amendment and in light of the comments made I will go back to the legal team that have helped draw it up.
It is very sad that we are prepared to accept the situation as it goes on. I also put on record my deep disappointment that Together for Short Lives did not discuss its concerns with me before that discussion, and before that document went out. I have done a lot of work with it; I have set up paediatric palliative care and supported many hospices, and I am deeply disappointed that I did not hear from it prior to this debate. I say to the Minister that I intend to go back to the legal team, and I would like a conversation with the noble Lord, Lord Balfe. I will bring this back on Report with, I hope, a better worded amendment that the House can then accept, because we are heading for danger if we do not allow peoples’ voices to be heard in a system where we know that there is no time and currently no place for them to express their views. In the meantime, I beg leave to withdraw the amendment.