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.