After losing their son Hugh to a rare cancer, Ceri and Frances turned grief into action. Their work is now helping to change the support available to families caring for seriously ill children.
When Ceri and Frances’ five-year-old son Hugh was diagnosed with a rare cancer, Frances turned to Ceri and said: “You always think it’s someone else’s child, never you.”
Over the next 10 months, Hugh underwent intensive treatment, with hospital appointments, long journeys and uncertainty becoming part of everyday life. During that time, Ceri and Frances saw first-hand the emotional, physical and financial toll serious childhood illness can have on a family.
Sadly, Hugh died in September 2021, shortly after his sixth birthday. In his memory, Ceri and Frances founded It’s Never You, a charity supporting families caring for a child with a serious illness.
Their experience also highlighted a gap in support. Parents can find themselves caring for a seriously ill child while trying to protect their income, employment and the wellbeing of the rest of their family.
Campaigning for Hugh’s Law
Parents of babies receiving neonatal intensive care can access paid leave, but there is currently no equivalent statutory support for parents of older children diagnosed with a serious illness. Ceri and Frances are campaigning to change that.
Hugh’s Law, which is currently under consultation, proposes:
- Paid leave from diagnosis
- Employment protection while caring for a seriously ill child
- Financial support before disability-related benefits become available
- Ahead of the potential legislation, we’ve voluntarily adopted Hugh’s Law and are the first charity in the country to do so.
Nick Carroll, Chief Executive, Together for Short Lives, said: “Hugh’s story is a powerful reminder that when a child is diagnosed with a serious illness, the impact is felt by the whole family. Parents shouldn’t have to choose between being at their child’s bedside and protecting their income or job security.
“We’re proud to be the first charity in the UK to adopt Hugh’s Law and stand alongside Ceri and Frances in their campaign for change. Their determination to turn personal loss into meaningful action is already making a difference to families across the country.
“The Government now has an opportunity to ensure every family facing similar situations gets the support they need from day one. Until then, we encourage employers everywhere to adopt Hugh’s Law and show their employees they’re not alone when they need support most.”
Shining a light on the whole family
Ceri and Frances’ work has not stopped there. Earlier this month, the Government launched a major study into the impact of serious childhood illness on the mental health of parents, guardians and siblings. The research will explore the experiences of the whole family, from diagnosis onwards.
Families like Ceri and Frances' have helped highlight the reality of what families face every day, from emotional strain and financial pressures to the long-term impact on mental health and wellbeing.
The legacy they are creating in Hugh's name is helping drive real change. We hope this research leads to meaningful action, ensuring families receive the support they need, not just for their child, but for everyone around them too.
Nick Carroll, Chief Executive of Together for Short Lives
Stories like this show the difference that the right support can make during the most challenging times. For families facing similar circumstances, help is available. Together for Short Lives’ Family Support Hub brings together trusted information, practical guidance and emotional support to help families feel informed, connected and less alone.
