Hospital to pilot Hugh's Law after death of boy, 6

The parents of a boy who died of cancer and a new children's hospital will work together to shape how families of seriously ill children are supported by the NHS.

Ceri and Frances Menai-Davis, from Hertford, lost their son Hugh, 6, in 2021, and have since been campaigning for Hugh's Law, which would provide paid leave for carers and guarantee job security.

Their charity, It's Never You, is part of a pilot with the Cambridge Children's Hospital (CCH), due to open in 2031.

Ceri Menai-Davis told BBC Look East he hoped it would lead to measures to 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 currently without one.

Ceri Menai-Davis said his son had been "the most beautiful, courageous little boy you could ever want as a parent".

When Hugh was diagnosed with the rare cancer rhabdomyosarcoma in October 2020, there was a clear plan for his treatment, but no equivalent plan to help his parents cope.

Ceri Menai-Davis said they had promised "that we would fight to change that".

"When Hugh passed away, my wife and I wanted to do something where we felt like we could give back in his memory, as a legacy for Hugh," he explained.

"We wanted to change the way that parents as a whole were treated when their child was diagnosed with a serious illness.

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

The parents were able to get a government report commissioned in August bearing Hugh's name.

Hugh's Report is a review of the mental health impact of life-threatening child illness on families.

The government's consultation into new rights for parents and carers of seriously ill children specifically mentions Hugh's Law as a possible approach, although it does not make a detailed proposal.

CCH aims to bring physical and mental health care together with research.

A spokesperson said that by including the recommendations of Hugh's Report in its clinical models before it opens, it hoped to lead the way in making the wellbeing of parents, carers and siblings an integral part of children's hospital care.

Dr Rob Heushckel, clinical director for CCH, said it was aligned "with exactly what Hugh's Report is seeking to deliver".

"The types of children we look after now very often need more time in hospital and that has an impact on the family, siblings and their education.

"They require a different level of support than previously when you were perhaps in and out of hospital quickly without the treatments that are now available."

Health Secretary Yvette Cooper has previously said there needed to be more support for families of seriously ill children.

"I want to pay tribute to Hugh's family, who have been campaigning for us to launch this report," she said.

"This is the starting point to hear from parents and families who face the most difficult circumstances of all, so we can hear directly from them what more support they need."

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