Health and Care Bill

Lord Moylan Excerpts

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

[Baroness Hollins (CB)]

My Lords, I added my name to Amendment 287, and I thank my noble friend for tabling Charlie’s law. Charlie Gard’s case was painful for all involved, including his parents and the doctors at the hospital where he was receiving treatment. Protracted disagreements can have far-reaching effects, particularly when they are played out in public, as has happened in a small number of cases. For the child, it can mean a delay in a decision about their care and treatment. For the parents and family of the child, there can be enormous distress, feelings of loss of control, and financial strain. Healthcare staff can also experience stress and anxiety, and they might be subjected to intimidation.

The parents of Charlie Gard, Alta Fixler, Alfie Evans, Tafida Raqeeb, and many others, wanted to do what any parent would do to try to improve their child’s condition and alleviate their child’s suffering. However, it is evident that the parents in such cases do not feel adequately heard and listen to when discussing options about their child’s treatment. This results in the devastating conflicts that lead to litigation. With this amendment, parents would be given the chance to discuss their views openly with the clinicians and hear the views of those clinicians, too.

Too often in my career, I have heard distressed parents described as “difficult” and “impossible to work with—nobody can work with them”. These are grieving parents who are looking for someone they can trust to help them. Mediation can sometimes help parents, and professionals to acknowledge that the consequence of conflict has been to shift focus away from the needs and welfare of the child. An independent mediation process can help to facilitate less confrontational conversation while supporting both parties. Thus, it provides support for both. Mediation across England is inconsistent. It needs to be available in every NHS hospital where conflict emerges, and at an early stage, so that the lives of very sick children such as Charlie are less likely to escalate to court.

In the rare event that a child’s case escalates to court, the amendment seeks to provide access to legal aid to ensure that families are not burdened with the financial strain of legal representation. Currently, families in this position are effectively punished, both financially and emotionally, through litigation for simply doing what they strongly believe is in their child’s best interest. Although this amendment makes provision for legal aid, the main purpose is to keep cases such as Charlie’s out of court, rather than arming everyone to be prepared to enter into long-winded and expensive legal disputes. Parents would not automatically win the right for their children to be given novel treatment, but the amendment would rebalance the dialogue towards resolution, rather than towards costly and distressing legal battles that do nothing to help the parents’ grief.

I also strongly support the introduction of the significant harm test. This legal test would focus on whether an alternative credible medical treatment could cause a child “disproportionate risk of significant harm” when deciding whether a parent can seek that treatment for their child. A key point here is that no medical professional would ever be required to give care or treatment that they did not view as in the best interests of the child. The legal test is already widely used under the Children Act 1989 and should be applied to cases such as Charlie’s in the future. I am strongly in support of this amendment and commend it. It is a just and necessary package to support parents and doctors, and I hope the Minister will be in a position to welcome it.

[Lord Moylan (Con)]

My Lords, I have also put my name to this amendment. I congratulate the noble Baroness, Lady Finlay of Llandaff, on bringing it forward.

We need a broad debate on the balance of responsibility for children as between parents and the various arms of the state. Sadly, these have come to include the medical profession. Today is not the day for that debate, but this amendment does something to give a voice to parents who find themselves in dispute with doctors, often unaided, unsupported and dependent on voluntary contributions, so that they have at least a voice and a status in decisions about their sick child. I very much hope that the Government will be able to support this.

[Baroness Stowell of Beeston (Con)]

My Lords, I do not very often become involved in health matters, so I hope that your Lordships will indulge me on this occasion.

Five years ago, when Charlie Gard’s parents were doing everything they could to fight for his life, I, like everyone else, was moved by their determination. Even so, my instincts were to accept what the Great Ormond Street hospital doctors were advising and what the judge decided was in Charlie’s best interests. I fall into the camp which believes that, in such an unimaginable, heartbreaking situation, the objective and dispassionate professionals are best placed to make a decision that no parent would ever want to have to make for themselves. When Charlie sadly died, I was moved by his parents’ dignity in coping with their heartbreak in the midst of a legal battle and in the full glare of publicity. Probably like many others who felt so sorry for their loss, I soon moved on and thought little more about this tragic case.

Then, just over a year ago, during the Christmas lockdown, when I was out on my daily walk, I heard an interview that Charlie’s mother, Connie Yates, gave to Andy Coulson on his podcast, “Crisis What Crisis?” For well over an hour, I listened to Connie tell her story. She spoke clearly, intelligently and reasonably about their experience as a family during the year in which Charlie lived, and about all that she and her partner, Chris, went through in their fight to be heard and taken seriously by doctors and lawyers. From listening to Connie, I learned that their expectations were well-informed and reasonable but that as the dispute continued, the situation became increasingly fraught and distressing —to the point where their efforts to be heard as parents made them feel that others believed they were guilty of not wanting the best for their baby. Even so, she was at pains to praise all the medical staff who had cared for Charlie at Great Ormond Street.

Towards the end of the interview, Connie told Andy Coulson that a Private Member’s Bill was being sponsored by the noble Baroness, Lady Finlay, that would bring to life what she called “Charlie’s law”. The noble Baroness has described this law. When Connie talked about it, I was struck by how modest and reasonable it is to create a legal framework to allow for resolution, without the added stress and trauma that they had faced during the time when they were fighting for Charlie. It also struck me very powerfully that, in developing this framework, Connie had taken the time to contact and listen to the doctors who had opposed her, so that she could better understand them and their position. That is worth emphasising again: this young woman is so reasonable that she wanted to create a law that would work for the benefit of the medical profession, not just parents.

As I finished listening to Connie, I vowed that I would support that Bill whenever it appeared. But as we know, Amendment 287 is here in lieu of that Private Member’s Bill, and arguably is a better way to introduce this measure, rather than having to battle with the usual procedural risks that are associated with private Members’ legislation. I am delighted to lend my support to this amendment. I am sure there are technical matters within the amendment which might require discussion between the noble Baroness and the Minister, but I urge my noble friend to take this seriously.

Given the ordeal that Charlie’s family faced a few years ago, when no one in authority listened to them, I am sure it would bring them a huge amount of comfort to know that they are being heard now. That is my main point and motivation today. Of all the things we must do if we are to level up this country, listening and taking seriously people who feel ignored or misunderstood is the most important aspect of that agenda, and in this context it costs us nothing.

I also say to Connie Yates, should she be listening today or read the record subsequently, that she is one impressive woman. When I heard her speak, and listened to what she had to say, she changed my mind and made me realise I had been wrong not to listen more carefully a few years ago.