‘How do you carry on when your child dies? There must be better support for parents of sick children’

“How do you tell your children that their sibling is dead?” That was the devastating question Ed Mordaunt and his wife, Beth, typed into Google when their 10-year-old son, Raff, died of leukemia last year.

Heartbroken and desperate for answers, Mr Mordaunt, from Lichfield, reached out to various charities offering bereavement support but was told it would be several months before they could get any help.

“[After Raff died]”We left the hospital, I validated the parking ticket and took Beth home, that was it,” he said. Independent.

“The next day I Googled, ‘How do you tell your children that their sibling has died? How do you plan your child’s funeral? How do you proceed?’ We were investigating.

“I was reaching out to places for help, and they said ‘you have to wait three months,'” he said. “Most people in this situation will be gone within three months, whether it’s literally gone or mentally gone.”

During their son’s four-month battle with leukemia, Mr Mordaunt said he and his wife were “lucky” to be able to take time off from work to spend time at his bedside, but they had “no idea” how to cope as a single parent who can’t quit his job.

“You have a scared little child,” he said. “The most normality they can have minimizes the horror for the child.”

When Ceri Menai-Davis’ six-year-old son Hugh, from Hertfordshire, died of cancer in 2021, his doctor also told him it would be at least 12 weeks before he would receive any support.

She had just spent 10 months caring for Hugh, who had rhabdomyosarcoma, a rare cancer that develops in the muscles.

Both he and his wife were there to care for him, but Mr. Menai-Davis saw how other parents tried to balance work and caring for their sick children.

“I could see the stress on their faces… They have to leave their kids in bed while they go and get a phone call, they have no money, they can’t pay for a taxi or a bus ride home, and they’re wondering how they’re going to keep up the rent and pay their mortgage.”

The two fathers are now calling on the government to improve access to specialist support for parents whose children are seriously ill, as well as bereavement support for those whose children have died.

They are calling for the introduction of Hugh’s Law, which would guarantee paid leave for parents of seriously or terminally ill children and ensure they are not forced to make the impossible choice of keeping their jobs or being with their children.

Both Mr Menai-Davis and Mr Mordaunt say they want the government to address what they call a “critical gap” in how families are supported at the most difficult moments of their lives.

“There is no support system in place that would allow them to leave work, keep their jobs and get paid to stay in hospital with their children,” Mr. Menai-Davis said. “All Hugh wanted was for his mother and father to be at his bedside.”

Mr Menai-Davis said support was vital for parents taking on a job he described as “relentless”.

“Within a minute they tell you your child has cancer,” he said. “You become a caregiver, doctor and nurse at home.

“You’re not sleeping at all. If you’re not at home monitoring them and checking their temperatures during the day, you’re checking to see if they’re still breathing at night when they’re on the feeding line.”

Letizia Perna, director of services at Child Bereavement UK, said: “The loss of a child is truly devastating for any family. We support many grieving parents who share that the earth-shattering impact of their child’s death has been made worse by the lack of empathetic infrastructure built into employment laws.

“A parent who is suddenly bereaved or told that their child will die should also not worry about their job or financial security. We would like to see adjustments to policies to support bereaved parents when their world is turned upside down by grief.”

A government spokesman said: “Losing a child has a devastating impact on parents and families, and we recognize the importance of the Hugh Law campaign in highlighting the gaps in support for parents at one of the most difficult times imaginable.

“This government is working with a range of stakeholders, including Ceri Menai-Davis, on the Hugh Report, which will examine the mental health impact on families of children with a life-threatening illness.

“Support schemes worth hundreds of pounds a week are also available to help parents and families through difficult times, and we encourage them to check they are getting the support they deserve – including transport, prescription and council tax costs.”

If you are experiencing feelings of distress or finding it difficult to cope, you can speak to Samaritans confidentially on 116 123 (UK and ROI), email jo@samaritans.org or visit . Samaritans Website to find details of your nearest branch.