Charlie died aged 11 months in July 2017 after his parents lost their fight to have him transferred from Great Ormond Street Hospital in central London for treatment elsewhere. The Charlie Gard Foundation, a charity set up after his death, was one of the contributors to the review’s call for evidence.
Currently, the parents of critically ill six-month-old Indi Gregory are engaged in a High Court life-support treatment fight.
The baby girl has mitochondrial disease, a genetic condition that saps energy from the body’s cells, and her parents want treatment to continue.
But a lawyer for bosses at Nottingham University Hospitals NHS Foundation Trust said they are asking the court to decide whether life-sustaining treatment should continue “because Indi’s parents and those treating her cannot agree”.
The NCOB said it had looked at disagreements in the care of children under 16, including babies, in England and heard from parents of critically ill children and healthcare professionals from hospitals across the country.
Among the recommendations, it said the Children and Family Courts Advisory Service should provide and promote information for parents about the role of the children’s guardian in court proceedings about medical treatment of children.
The review also said there should be guidance for clinical ethics committees (CEC) in England on how to ensure parents’ and, “where appropriate, children’s views are taken into account in CEC discussions and that parents are supported to provide input to CEC meetings”.
It said the Department of Health and Social Care should establish a taskforce “to oversee the implementation of the recommendations in this report to facilitate collaboration; promote the filling of current gaps in evidence and ensure mechanisms are in place to effect lasting change”.
Help families navigate system
The review also urged NHS England to put together resources to help families navigating healthcare systems, including how to seek second opinions and raise concerns.
Those behind the overall review said they hoped that if implemented properly, their recommendations could “make a real and positive difference to the families and healthcare professionals who find themselves in these nightmare situations”.
Steph Nimmo, whose 12-year-old daughter died, contributed to the review and said the recommendations could help “ensure that the parents and professionals caring for the most medically complex children in this country are both supported and heard”.
She said: “Parenting a critically ill child is an unparalleled journey through uncharted territory, where every decision feels like an impossible choice.
“When my newborn daughter was diagnosed with a rare and life-limiting disease, I found myself thrust into this world, learning to be her advocate, faced with unimaginable decisions.
“In the years since her death at the age of 12, I have dedicated my spare time to understanding the tipping points which can lead to disagreements and conflict between parents and their child’s medical team.
“As today’s report clearly demonstrates, good communication practices and practical and emotional support – for everyone involved – is at the heart of making lasting change.”