Tina Stowell: The Government should accept ‘Charlie’s Law’ as part of the Health and Care Bill

28 Mar

Baroness Stowell of Beeston was Leader of the House of Lords from 2014 to 2016 and is a former Chair of the Charity Commission.

The House of Lords made an important ‘levelling-up’ amendment to the Health and Care Bill that hasn’t had much attention – which is odd when its genesis was a power struggle between an ordinary family and the medical and legal establishment; and it was front page news around the world for weeks.

Moreover, this correction to an unfair imbalance of power is at real risk of being removed in the Commons during ping-pong, so I think people need to know about it.

You must remember the case of Charlie Gard. He was the little baby diagnosed with a rare, terminal illness in 2017 whose parents – Connie and Chris – were at the centre of a huge legal battle with doctors about whether their son should be kept alive to receive treatment that might save his life.

The media attention it received was massive and the debate stretched from the High Court in London, to the Vatican, and the White House. It raised serious issues of medical ethics, the fundamental rights of parents – and it wasn’t just the Pope and Donald Trump who got involved. Everyone had a view.

My own was to accept what the Great Ormond Street hospital doctors were advising and what the judge decided was in Charlie’s best interests. I rationalised 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 full glare of publicity. But probably like many others who felt so sorry for their loss – whichever ‘side’ of the debate we’d been on – I soon moved on and thought little more about this tragic case.

Then, just over a year ago, I heard Charlie’s mother, Connie Yates, talk to Andy Coulson on his podcast, Crisis What Crisis?. For well over an hour, I listened to her tell her story.

She spoke clearly, intelligently and reasonably about their traumatic experience and all that she and Chris went through in their fight to be taken seriously by doctors and lawyers. I learned that their expectations were well-informed but that as the dispute continued and they found themselves in court, 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.

It’s worth listening to her, and if you do, you’ll also hear Connie praise the medical staff who had cared for Charlie at Great Ormond Street. She is incredibly fair – which makes her all the more compelling.

Connie and Chris’s is, of course, an extreme example of what it means not to be listened to or taken seriously by highly qualified professionals who, because they know more, believe they know best.

But it is all the more profound because they were parents and the matter on which they deserved a say and some respect was the treatment of their child. It struck me listening to Connie that, if our laws and regulations allow parents to feel powerless when their child is at risk of dying, something has gone badly wrong – and it’s no wonder many people feel the professional classes they rely on don’t understand the people they exist to serve.

I was therefore very interested when, towards the end of Connie’s interview, she mentioned a Private Member’s Bill being sponsored by the Cross-bench peer Baroness Finlay and Bambos Charalambous, the Labour MP, that would bring to life what she called “Charlie’s Law”. The aim of this modest Bill was to prevent other parents going through the same ordeal they had faced.

Put simply, it would create a legal framework to allow for mediation and resolution between parents and doctors when they disagree; the aim being to prevent doctors resorting to the law and families having to fight for and defend their position in the courts before there’s been an opportunity to find a reasonable way through.

In developing this framework, Connie had taken the time to contact and listen respectfully to the doctors who had opposed her whilst Charlie was alive, so that she could better understand their position and make sure that the new law would work for the benefit of the medical profession, not just parents.

No-one is suggesting this is a silver bullet, but this reasonable measure is a way for doctors and parents to share power and responsibility in the best interests of the child. It’s a solution from people who really understand what it’s like to feel powerless.

Since I first heard about all this, Baroness Finlay (who is a doctor and professor of palliative medicine) has worked closely with professionals, charities and lawyers and, instead of facing the usual procedural challenges and risks of introducing a Private Members Bill, seized an opportunity to amend the Health and Care Bill to introduce “Charlie’s Law”.

The Government is yet to be convinced, but thanks to widespread support from around the House, the amendment was passed… by just five votes. It’s that small margin which puts it at risk during ping-pong without Government support.

So I’m hoping that the Government will accept it when the Commons considers the Lords amendments to the Bill on Wednesday this week. It costs little, if any, public money. More to the point, Charlie’s Law supports an important and often ignored aspect of what ‘levelling-up’ means for many people: being listened to and respected as good citizens when trying to do the right thing.

For that, if for no other reason, it deserves to be taken seriously and passed on to the statute books.