Charlie’s Law: a landmark victory for palliative care, with cross-party support

Back in March 2020, I originally tabled Charlie’s Law as a private members’ bill because I knew that the current system of conflict resolution was failing both doctors and parents. So I was thrilled last week to see that Baroness Finlay won her vote on Charlie’s Law in the House of Lords with her amendment to the health and care bill, titled “Dispute resolution in children’s palliative care”. This is a landmark victory for palliative care and supporting parents and doctors with critically ill children.

The amendment aims to prevent disagreements between parents and doctors from escalating to court and recognises that parents should be able to pursue an alternative treatment for their child, if it is proposed by a credible doctor, and is in the best interests of the child. The vote in favour of the amendment by 112 votes to 107 showed the significant cross-party support to finally stop conflicts between parents and doctors from escalating to court. Such cases benefit neither parents nor doctors and can cost the NHS and the government millions in legal fees every year.

Charlie’s Law has come a long way since I, and more recently my colleague Emma Hardy MP in November 2021, tabled it in the House of Commons. After tireless engagement with the medical community and charities, I am extremely pleased to see their support for this amendment, too. This includes recent engagement with leading palliative care charity, Together for Short Lives, who expressed their support for the amendment at report stage in the Lords.

Addressing the previous concerns of the medical community, the amendment now clarifies that it has no impact on the legal basis of the existing ‘best interest principle’. On the contrary, the amendment leaves doctors’ autonomy intact, so they never have to pursue a treatment they felt wasn’t in the child’s best interest. The amendment only asks that if a reputable clinician is willing to provide treatment to a critically ill child, then they must be able to provide evidence during the mediation process of how it is likely to benefit the child. This is a significant evolution in palliative care, and a step in the right direction as we look to resolve disagreements as early as possible, before they escalate to courts.

When I met Connie and Chris, who created the Charlie Gard Foundation and Charlie’s Law, I was taken aback at how selfless they were in their pursuit for change. They wanted desperately to put mechanisms in place to help support both doctors and parents. After all the unimaginable hardship they experienced and the traumatic conflict with their clinicians, they only want to help prevent any future parents or doctors from going through the same ordeal.

In the coming weeks, the amendment arrives in the House of Commons, and the government and MPs have the chance to end this nightmare of parent-doctor disputes. We have the opportunity to build back better and deliver a system of early mediation, better communication and fair outcomes for parents and doctors. A system where doctors and parents are supported, and not pitted against each other. I hope we finally take this right step and move the amendment forward.