Nuffield Council’s review on disputes about the care of critically ill children

Our campaigning has led to a pivotal moment for the Charlie’s Law campaign.

The Nuffield Council on Bioethics has been undergoing its review into disputes about the care of critically ill children. We secured this review by working with Baroness Finlay to deliver the Charlie’s Law amendment to the Health and Care Act 2022. The amendment, No 172, and its debate, led to the Government announcing the Nuffield’s review.

The review has just completed its literature review, which will be used to help shape the outcome and recommendations of the report.

The Foundation strongly encourages any parents who have been involved in disputes about the care of critically ill children to come forward to be involved in the next stage of the review which includes interviews with parents.

We hope that the review comes out in favour for advocating for the changes set out in Charlie’s Law to finally fix a broken system that fails parents and doctors. We fear that without a change in the law, parents and clinicians may feel that the only choice to resolve disputes is to go through lengthy, expensive judicial proceedings, and are often stacked against the parents’ wishes for their child. These unnecessary proceedings cost the NHS millions, and, more importantly, mean that parents have less time to spend with their critically ill child.

If you’d like to participate in the review interviews, please get in touch with Nuffield at children@nuffieldbioethics.org. If you are aware of anyone who should participate, please forward this blog.