Father says Government’s support for Hugh’s Law has been ‘surreal’

A father said it is “surreal” after his petition for better financial support for parents of children requiring lengthy hospital care gained further support from the Government.

Ceri Menai-Davis, from Hertford, delivered a petition to Downing Street in October for Hugh’s Law, named in honour of his son who died aged six from a rare form of cancer.

The new law is designed to provide furlough-style payment for parents caring for their sick child in hospital for an extended period.

Mr Menai-Davis and his wife Frances met with East and North Hertfordshire MP Sir Oliver Heald and work and pensions minister Jo Churchill, who have shown support for the petition, at the Department for Work and Pensions on Tuesday.

The meeting came as a result of a private member’s Bill put forward by Sir Oliver on January 19.

Sir Oliver, who first took up their cause, raised the petition during Prime Minister’s Questions in December and it was recognised by Parliament.

Mr Menai-Davis admits feeling down after he believed his petition would not continue, but was pleased Sir Oliver raised it during PMQs and described the moment as “surreal”.

He told the PA news agency: “We were told (Sir Oliver) was going to ask a question to the Prime Minister.

“Then he said it and when Rishi Sunak mentioned us, it was… surreal.

“My wife and I just turned to each other and said, ‘Wow’.”

Mr Menai-Davis and his wife began campaigning for Hugh’s Law after their son died in September 2021 and have since founded the charity It’s Never You, offering support for families with children living with cancer.

The parents hope they can create a legacy for Hugh and support parents who experience similar hardships.

“I think (Hugh) would be so proud looking down. As he said to me all the time, ‘keep going, Daddy’,” said Mr Menai-Davis.

“I always said when Hugh passed away, I would make sure that everyone knows who Hugh Menai-Davis is and I have.”

He said he became emotional when Ms Churchill expressed her support during the second reading of Sir Oliver’s private member’s Bill on January 19.

He said: “The words (Ms Churchill) said at the end of her speech was ‘it’s time to create purpose from the pain’.

“I’ve kept my emotions together for three years since losing Hugh, but I did weep a bit when I was in the lobby.”

He added he is grateful his petition has gained interest within Parliament.

He said: “I think people aren’t just listening to the fact we see a hole in the system.

“I think they’re also realising there’s two parents that have been through an awful time that see such a hole in the system that needs to be changed that they give everything, and that’s what we do.”

“We literally live and breathe this.

“It means so much to us to be where we are now sitting around a table with the people that make the decisions and it’s just testament to our hard work.”

His proposed bill also calls for a mortgage holiday, which is a pause on mortgage payments, a council tax reduction and free travel for carers of terminally ill children.

He hopes Hugh’s Law will give parents of sick children financial stability for those requiring lengthy hospital care.

He explained: “These mortgage holidays and council tax reductions put the onus onto the company to show they’re willing to help these parents.

“Because it could be anyone and these things can happen at any time to anyone.

“To put these things into place, we just think it should be a holistic approach to it and everyone could join to make this transition to a better future for these parents.”

Mr Menai-Davis said he is determined to carry on Hugh’s legacy through his proposed bill and hopes his story will encourage others to pursue their passions.

“If you want it hard enough, just keep pursuing it and persevering because it does pay off,” he said.

“It’s a sad story, a little six-year-old boy losing his life, but it’s not.

“It’s a positive story because, in some way or another, my wife and I found some strength to carry on and we’ve picked ourselves off the floor.”