My name is Ceri Menai-Davis, and I am a father and the co-founder of the charity It’s Never You. In 2020, my eldest son Hugh was diagnosed with a rare soft tissue cancer. He endured 10 months of harsh and devastating treatments. On 30th August, he celebrated his sixth birthday surrounded by his family. Sadly, just 18 days later, out of nowhere, he relapsed and passed away.
In the wake of his passing, my wife and I chose to channel our grief into helping those who walk, and are yet to walk, in our shoes. We found that the system of support for parents of children with life-limiting diseases and chronic illness such as cancer was non-existent. So we decided to change it and created It’s Never You, inspired by the words my wife uttered to me when Hugh was diagnosed.
Our goal was to create a legacy for Hugh and to change the lives of parents of children with cancer—physically, emotionally and financially. We established and built The Children’s Cancer Platform, a free-to-use social media platform exclusively for parents navigating the journey with a child undergoing cancer treatment. Additionally, we provide financial and mental support to parents through grants and counselling services.
Every day in the UK, 10 children are diagnosed with cancer and, each year, 4,000 children are told they will need to spend two months or more in hospital. For those undergoing treatment for certain types of leukaemia, hospital stays can extend to over six months, often in isolation. For these families, life as they know it is put on hold while their child receives vital treatment. During this time, many parents face a drastic reduction in household income as one parent often becomes a full-time caregiver, unable to work and provide for their family.
The current support options are not only insufficient but also delayed. Parents must wait months to receive any financial assistance, leaving them in a precarious situation at a time when they are already facing incredible stress and uncertainty. Currently, there are only three options available for parents seeking financial support:
- Universal Credit, which is means-tested.
- Disability Living Allowance (DLA), which can only be applied for three months post-diagnosis and then takes an additional 20 weeks to arrive. DLA is required to claim a blue badge.
- 18 weeks of unpaid parental leave, taken in four-week blocks in a calendar year.
However, there is currently no financial support available from day one of a child’s diagnosis. This forces parents to make the heartbreaking choice between staying by their child’s side in hospital or working to maintain financial stability. We believe no parent should ever have to make that choice. There is an abundance of support when a child is born, but there is none when a child is diagnosed with a life-threatening or terminal illness.
The absence of immediate financial support from the government places an extraordinary burden on families already facing the hardship of caring for a critically ill child. Last week, my wife and I took a petition, which is still open, to Downing Street, asking the government to adopt a bill we worked on in 2023 with our former MP, Sir Oliver Heald. The bill, called Hugh’s Law, asked the Treasury to report on the merits of offering parents in this position financial help.
This time, we have gone further and asked the Chancellor that funds be set aside in the upcoming budget to prevent parents from plunging deeper into financial and mental difficulties while their child is in a hospital bed.
We estimate that the cost to the taxpayer to financially support these vulnerable parents from day 1 for a limited time would be around £6 million per year—a drop in the ocean compared to other national expenditures. This support would provide a parent whose child has been diagnosed with a chronic illness a monthly grant of approximately £750 while their child is in hospital receiving treatment, up to a maximum of three months. This will fill the financial gap between diagnosis and DLA.
If you would like to follow our journey in fighting for a better future for parents of sick children, you can follow us on Instagram @its.neveryoucharity or visit our website at www.itsneveryou.com.
If you want to sign our petition, please do so. The more voices we have, the louder it will resonate with the government: https://chng.it/MR5qmyKLLs