The Government is to study the hidden toll of serious childhood illness on families after a campaign by Hertfordshire parents Ceri and Frances Menai-Davis.

Their six-year-old son Hugh died from cancer, and they founded the charity It’s Never You so other relatives “do not have to reach breaking point before somebody notices them.”

When Hugh was diagnosed, life for his family changed in a single conversation. The months that followed became a world of hospital wards, treatment, fear and trying to keep family life going around a desperately ill little boy.

Frances Menai-Davis and her son Hugh. Picture from It's Never You website

After 10 months of treatment, Hugh died on September 18, 2021. His younger brother Raife was just three.

In the years since, Ceri and Frances have spoken openly about the trauma, grief and isolation experienced by families whose lives are turned upside down by a child’s diagnosis.

The new initiative, Hugh’s Report, honours their child and follows years of work to make parents and siblings visible.

Ceri and Frances Menai-Davis at 10 Downing Street. Picture from It's Never You website

The study has been commissioned by the Department of Health and Social Care and is being undertaken by the Centre for Strategy & Evaluation Services LLP (CSES).

It will examine the emotional and mental health impact on mothers, fathers, legal guardians and siblings from the moment of diagnosis, through treatment and remission or long-term management, and, for some families, end of life and bereavement.

Dad Ceri said: “Hugh was not a statistic or a case study. He was our six-year-old son. When he was diagnosed, Frances and I became parents trying to keep our little boy alive while somehow holding the rest of our family together. Every eye was rightly on Hugh, but there was no one responsible for asking what this was doing to us or to his little brother, Raife.

“The start of Hugh’s Report is an incredibly proud and painful moment. I would give anything not to understand why this work is needed. But Hugh’s name will now sit on research that could mean another father is asked if he is coping, another sibling is not forgotten, and another family is not simply left alone when treatment ends or the hospital calls stop.

“This report must do more than describe the pain. It must lead to support being offered from diagnosis, through treatment and into bereavement. Families should not have to reach breaking point before somebody notices them.”

The researchers will hear directly from families through interviews, focus groups and an online survey. They will also look at the evidence already available and at the support offered by GPs, hospitals, hospices, charities, community organisations, peer groups and online services.

The report will ask simple but important questions: What happens to parents and siblings when a child is diagnosed? Who notices when they are struggling? Where do they go for help? What mental health support genuinely makes a difference, and which families are still being missed? Fathers and siblings will be considered in their own right, rather than being hidden within a general description of the family. The study will also look at how income, ethnicity, location and access to services can change a family’s experience.

Although Hugh had cancer, the report will consider families of children and young people up to the age of 18 with a wide range of life-threatening or life-limiting illnesses, including those whose condition suddenly deteriorates.

Yvette Cooper

Secretary of State for Health and Social Care Yvette Cooper said: “We need to make sure that there is more support for families when a child gets very seriously ill, and, in the most distressing cases, when a child dies.

“I want to pay tribute to Hugh’s family, who have been campaigning for us to launch this report. This is the starting point to hear from parents and families who face the most difficult circumstances of all, so we can hear directly from them what more support they need.”

After a nine-month study, the final report will make recommendations to national and local decision-makers about how the mental health of affected families should be supported in future.

Chris Hinchliff and Ceri Menai-Davis. Picutre from Chris Hinchliff's Facebook

The work begins while the Government is also consulting on employment rights for parents of seriously ill children. That separate consultation includes the proposed Hugh’s Law, championed by North East Herts MP Chris Hinchliff.

It calls for protected leave and financial support for parents after a child’s serious diagnosis. Consultation closes on September 1, 2026. See Make Work Pay: employment rights for unpaid carers and parents of seriously ill children - GOV.UK

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