Parents Behind Hugh's Law Join Children's Hospital Pilot

The parents of a boy who died of cancer will work with the new Cambridge Children's Hospital (CCH) to shape how the NHS supports families of seriously ill children.

Ceri and Frances Menai-Davis, from Hertford, lost their son Hugh, 6, in 2021. They have since campaigned for Hugh's Law, which would give carers paid leave and guarantee job security. Their charity, It's Never You, is part of a pilot with the hospital, which is due to open in 2031.

Ceri Menai-Davis told BBC Look East he hoped it would lead to measures that support families. "So when the worst does happen, there's a blanket for them to be cushioned with," he said.

CCH will be the first specialist children's hospital in the East of England, the only region in the UK without one.

A plan for the parents too

Hugh was diagnosed with the rare cancer rhabdomyosarcoma in October 2020. His treatment had a clear plan, his father said, but nothing similar existed to help his parents cope. They promised to fight to change that.

"The system is set up at the moment where it's not preventive or proactive, it's more reactive," Menai-Davis said. "We need to look at what actually happens should that child die."

The couple secured a government report that bears Hugh's name, commissioned in August. Hugh's Report reviews the mental health impact of life-threatening child illness on families. A government consultation on new rights for parents and carers of seriously ill children mentions Hugh's Law as a possible approach, though it makes no detailed proposal.

The hospital says it will build the report's recommendations into its clinical models before opening. It hopes to make the wellbeing of parents, carers and siblings an integral part of care. CCH aims to bring physical and mental health care together with research.

Dr Rob Heushckel, the hospital's clinical director, said this matched "exactly what Hugh's Report is seeking to deliver". Children treated today often need more time in hospital, he said, which affects siblings and their education.

Health Secretary Yvette Cooper has said families of seriously ill children need more support. "I want to pay tribute to Hugh's family, who have been campaigning for us to launch this report," she said.

Source: BBC News