Two fathers who cared for their terminally ill children and endured the heartbreaking grief of watching them die are now calling for improved support for other parents, after being left with nowhere to turn.
Devastating Loss and Lack of Support
Ed Mordaunt, from Lichfield, and his wife Beth faced the unimaginable question of how to tell their other children that their 10-year-old son Raff had died from leukaemia last year. Desperate for guidance, Mr Mordaunt contacted several bereavement charities but was told there would be a wait of several months before any help could be provided.
“After Raff died, we left the hospital, I validated the car parking ticket, and drove Beth home, and that was it,” he said. “The next day, we were Googling ‘How do you tell your children their sibling has died? How do you plan your child's funeral? How do you carry on?’”
He added: “I was reaching out to places for help, and they said ‘you’ve got to wait three months.’ A lot of people in that situation, in three months, they're going to be gone, whether it's literally gone or mentally gone.”
The Financial and Emotional Toll
During Raff’s four-month battle with leukaemia, Mr Mordaunt acknowledged that he and his wife were fortunate to be able to take time off work to be at his bedside. However, he expressed concern for single parents who cannot afford to leave their jobs. “You've got a little child who is terrified,” he said. “The most normality they can have minimises the terror for the child.”
Ceri Menai-Davis, whose six-year-old son Hugh died from cancer in 2021, faced similar barriers. After spending 10 months caring for Hugh, who had rhabdomyosarcoma, a rare muscle cancer, he was told by his GP that it would be at least 12 weeks before he could access support. He witnessed other parents struggling to balance work and care, often leaving their sick child to take work calls, worrying about finances, and wondering how to pay for rent or mortgages.
Call for Hugh’s Law
Both fathers are now urging the government to improve access to specialist support for parents of seriously ill children, as well as bereavement support for those whose children die. They are advocating for the introduction of Hugh’s Law, which would guarantee paid leave for parents of seriously or terminally ill children, ensuring they are not forced to choose between keeping their jobs and being with their child.
“There's no current support system in place that will let them leave work, keep their job and receive payment to be in the hospital with their child,” Mr Menai-Davis said. “All Hugh wanted was his mummy and daddy at the bedside.”
He described the role of a parent caring for a sick child as “relentless”. “In the space of a minute, they’re telling you your child's got cancer,” he said. “You become a carer, a doctor, and a nurse at home. You're never sleeping. If you’re not at home watching them and checking their temperature during the daytime, you're checking if they're still breathing while they're on their feeding line at night.”
Expert and Government Response
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 world-shattering impact of the death of their child is exacerbated by a lack of empathetic infrastructure built into employment laws. A parent who has suddenly become bereaved or is told their child will die should not be also concerned about their job or financial security. We would be keen to see adjustments to policy to support bereaved parents when their world is turned upside down by grief.”
A government spokesperson said: “Losing a child has a devastating impact on parents and families, and we acknowledge the importance of the Hugh’s Law campaign in highlighting 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 Hugh’s Report, which will examine the mental health impact on the families of children with a life-threatening illness. There are also support programmes available worth hundreds of pounds a week to help parents and families during difficult times, and we would urge them to check they are getting the support they are entitled to – which can include help with transport, prescription, and council tax costs.”
If you are experiencing feelings of distress, or are struggling to cope, you can speak to the Samaritans, in confidence, on 116 123 (UK and ROI), email jo@samaritans.org, or visit the Samaritans website to find details of your nearest branch.
