Hugh’s Law is a proposal for a new law to provide financial assistance to parents of children needing prolonged hospital treatment.
Having an ill child who needs to spend significant time in hospital can have an enormous impact on parents and families. Not only do they have to deal the emotional impact of the situation, but they also need to manage the financial burden of a significant reduction in income whilst caring for their child.
The necessity for a parent to become the primary caregiver often leads to a 50% reduction in household income, coupled with additional expenses related to the care of the sick child.
The law was initiated in 2023 by Ceri Menai-David and his partner Frances, following the death of their son Hugh from cancer at the age of six in 2021. The family also founded the charity It’s Never You, which offers support for families with children living with cancer.
Rockinghorse CEO Donna Holland attended a special Parliamentary drop-in event yesterday, hosted by Chris Hinchliff MP on behalf of the It’s Never You Charity, dedicated to reshaping the future of well-being and financial support for parents of sick children.
Donna said, “We know from our work supporting children and their families in the Royal Alexandra Children’s Hospital and the Trevor Mann Baby Unit in Brighton and children’s wards all over Sussex, that many parents and families struggle with a whole range of additional emotional, financial, and mental well-being difficulties when their child is diagnosed with a critical illness.
“They are not only dealing with an incredible difficult diagnosis, multiple hospital trips, treatments and overnight stays (often over months or years) but also trying to juggle the rest of their lives, work, money and family at the same time. It makes a tough situation, impossible for many families.”
During Hugh’s six-month intensive chemotherapy radiation treatment, Ceri and Frances regularly travelled from their home in Hertfordshire, commuted daily to Addenbrooke’s Hospital in Cambridge to be with their son. During this time Mr Menai-Davis felt there was a lack of support for parents with terminally ill children.
As a result, he wanted to create “a legacy” for Hugh, organising and delivering a petition to Parliament in October 2024 that would provide better financial support for parents of children requiring lengthy hospital care.
Around 4,000 children in the UK spend two months or more in hospital each year, and parents often face a significant reduction in their household income during this time. However, Hugh’s law includes proposals for support such as a mortgage holiday, council tax reduction and free travel for carers or terminally ill children.
Mr Menai-Davis highlighted the profound challenges faced by parents caring for sick children. He emphasised the critical need for financial support and said, “Looking after a sick child is one of the worst things as a parent that you can do. Speaking to parents in the hospital during Hugh’s treatment and after, it’s clear that a huge amount of anxiety and hardship can be removed by offering parents more help financially. Currently, there is nothing offered by the government that helps a parent in a situation like ours and like many others around the UK.”
Frances Menai-Davis, co-founder and Hugh’s mother added, “Not having to worry about finances would be life changing for those families affected and allow them to focus on caring for their sick child.”
Ceri hopes the work of his charity and the petition for Hugh’s Law will “make a change” for parents experiencing similar hardships.
Find out more about Hugh’s Law and sign the petition please visit It’s Never You
Image left to right: Dr Marc Abraham OBE, Donna Holland, Ceri Menai-Davis, Rosie Duffield MP for Canterbury, Ellie Thompson.
