Hertford Family who lost six year old son to cancer team up with local MP in fight for cash

Frances Menai-Davis said parents with children getting long-term hospital care "can't escape the financial burden; you have to deal with it"

A couple whose six-year-old child died in hospital are fighting for better financial support for parents visiting long-term sick children.

Ceri Menai-Davis and wife Frances, from Hertfordshire, commuted daily to Addenbrooke's Hospital in Cambridge to see their son Hugh, who had cancer.

They said they saw other parents who had to sell their homes and give up work to care for ill children.

Sir Oliver Heald MP is behind a private members bill aiming to provide support.

In October 2020, Hugh, then aged five, was diagnosed with cancer of the abdomen and he died just weeks after his sixth birthday, following gruelling spells of chemotherapy and radiotherapy.

For his parents, the emotional stress of watching his health rapidly decline was combined with worries over whether they could afford to be at his bedside.

The Menai-Davis said that after the death of their son Hugh, they wanted to help other parents

Hugh endured 16 weeks of intense radiotherapy, meaning a 100-mile round trip from the Hertford area for his parents each morning.

"It was a struggle, but you'd go to the moon and back if you had to," said Mr Menai-Davis.

He said the couple were "financially stable throughout Hugh's treatment", but that was not the case for other parents.

"There was a mother looking after her teenage son opposite us on the ward. She had to take her other two children home by bus as she couldn't afford to drive or pay for parking," he said.

"The child was waiting for food, so I bought him a pizza and I gave her money to get home."

The couple set up a charity called It's Never You, which were the words Mrs Menai-Davis said to her husband when they got Hugh's diagnosis.

It aims to try to help other parents.

Mrs Menai-Davis said they had spoken to people having to sell their family homes, and dads giving up work to care for other children if mum was looking after a child in hospital.

"You can't escape the financial burden; you have to deal with it," she said.

"When we started a family we had time to make financial plans, but when your child is diagnosed with cancer, you don't have time."

"On top of dealing with your whole world being torn apart, you're having to deal with financial repercussions, but there's nothing there, and that's what we want to change."

Ceri and Frances have taken their campaign to Westminster and had backing from their MP Sir Oliver Heald

Ceri and Frances say the lack of financial support from government has led to them asking the MP for North East Hertfordshire for help.

Sir Oliver's Private Members Bill aims to give more financial support to families.

Speaking in the Commons during its first reading in June, Sir Oliver said he had spoken to the Department for Work & Pensions and the Department for Health & Social Care.

"Parents can use annual leave and bereavement leave, but [there is] no specific state support for parents spending so much time with their child in hospital," he said.

"This would not cost a great deal as there are so few cases, but it would mean that all parents could concentrate on helping their children rather than worrying about money."

The MP is hopeful the bill will get its second reading in 2024.

Sir Oliver Heald is hoping his private member's bill will get a second reading next year as it fights for parliamentary time

The two government departments have been approached for comment.