Hugh Menai-Davis died of cancer and now his father, Ceri Menai-Davis, wants to see better support for parents

A close-up of father Ceri and young son Hugh Menai-Davis sitting on a sofa. Hugh is on the left and has lost most of his hair. Ceri has light brown hair and is wearing a black top. They are both smiling

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.

A close-up of Hugh Menai-Davis standing in a garden, holding up a hand with a large insect on it. He has blond hair in a fringe over his eyes and is wearing a grey T-shirt with insects on it.

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.

"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."

Yvette Cooper with Frances and Ceri Menai-Davis. Yvette has short fair hair and is wearing a maroon jacket over a white top; Frances has long blonde hair and is wearing a light brown roll neck jumper; Ceri has brown hair and is wearing a dark suit, blue shirt and maroon tie. Behind them is a window and beyond it a view of high rise buildings and blue sky.

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.

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 said the new Cambridge Children's Hospital was committed to embedding the recommendations of Hugh's Report into its care model

A man smiles at the camera. He has short dark hair and is wearing a dark blue shirt. He is standing in front of a background picture of a town.

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."

Dame Rachel de Souza, Children's Commissioner for England, wears a polka-dot blouse. She has auburn hair.

Frances and Ceri Menai-Davis standing side by side on a pavement directly in front of the black front door of a formal building. The door has a polished finish and features a brass letter slot and a lion-head door knocker at the centre. Above the door, the number “10” is clearly visible, indicating the entrance to 10 Downing Street in London. The doorway is framed by light stone columns,

Artist's impression of part of a new hospital, showing outdoor garden with seating, and glass-fronted buildings behind.