Families of sick children must be heard, says review

It came in the wake of high-profile court cases involving the families of Archie Battersbee and Charlie Gard which ended in legal disputes with the NHS trusts caring for the boys.

Archie died aged 12 in August 2022 after his life support was withdrawn at the Royal London hospital in the east of the capital.

His parents took their fight for ongoing treatment, and then for him to be moved to a hospice, to the Supreme Court and the European Court of Human Rights.

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Charlie died aged 11 months in July 2017 after his parents lost their battle to have him transferred from Great Ormond Street hospital for treatment elsewhere.

The Nuffield Council on Bioethics which did the review also wants to ensure parents’ views are taken into account to ease their distress.

The body hopes the recommendations can “make a positive difference to the families and healthcare professionals who find themselves in these nightmare situations”.

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The NCOB looked at rows about the care of under 16s, including babies, in England, and heard from parents of critically ill children and health professionals.

It said NHS trusts should inform families within three days of deciding to start court proceedings to give them time to get legal advice.

Steph Nimmo, whose 12-year-old daughter died from a rare and life-limiting disease, said: “Good communication and practical and emotional support for everyone involved is at the heart of making lasting change.”

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