The Children's Commissioner for England backs Hugh’s Law
Hugh’s Law has been backed by the Children’s Commissioner for England, Dame Rachel de Souza has recognised the urgent need for stronger financial and employment protection for parents when a child becomes seriously ill.
Her support reinforces a simple principle: no parent should be forced to choose between keeping their job and being beside their child.
IN BRITAIN TODAY, THERE IS NO FINANCIAL SUPPORT FOR PARENTS OF SERIOUSLY ILL CHILDREN.
PARENTS ARE EXPECTED TO CARRY THE BURDEN ALONE
THIS IS NOT COMPASSION
THIS IS NOT CARE
THIS IS FAILURE
PARENTS DESERVE BETTER
IT IS TIME FOR #HUGHSLAW
WHY?
In 2021, we lost our six-year-old son, Hugh, to a rare cancer after a 10-month fight.
During his treatment, we discovered a hidden crisis. Parents were forced to leave work, exhaust their savings and face financial hardship simply to remain by their child's bedside. Despite the life-changing impact of serious childhood illness, there is still no statutory right to paid leave or employment protection.
After Hugh's passing, we founded the charity It's Never You and launched Hugh's Law to change that.
We are campaigning for protected leave and pay for parents of seriously ill children because no family should have to choose between caring for their child and keeping their livelihood.
WHAT IS CURRENTLY AVAILABLE?
There is currently no statutory right to paid leave for parents whose child becomes seriously or terminally ill. Unlike parents of babies requiring neonatal care or those who lose a child, families facing serious childhood illness receive no dedicated employment protection.
Instead, parents are expected to rely on four weeks of unpaid parental leave each year, five days of unpaid carer's leave, annual leave, or the discretion of their employer.
Financial support is also delayed. Disability Living Allowance cannot usually be claimed until a child has met a qualifying period, and payments often take months to arrive. Universal Credit is means-tested and excludes many working families.
These measures were never designed for parents spending weeks or months at their child's bedside. They leave thousands of families facing an impossible choice between caring for their child and protecting their income.
Hugh's Law would close this gap by introducing statutory paid leave and employment protections, ensuring parents can be with their seriously ill child without facing financial hardship.
WHAT ARE WE DOING ABOUT IT?
We have spent years campaigning for change, and now the Government is listening.
Hugh’s Law was included in the Government’s consultation on employment rights for unpaid carers and parents of seriously ill children. It was a once-in-a-generation opportunity to shape policy that will protect families in crisis. The consultation closed on 1st September 2026.
OUR CAMPAIGN TIMELINE
2021
Hugh passes away. The campaign begins.
2023
Hugh’s Law introduced to Parliament.
2024
Government commits to further work.
2026
Hugh’s Law enters official Government consultation
Next Steps
Delivering change for families.
On 2nd September, we hosted an event in Parliament giving parents the chance to speak directly with lawmakers. We hope their voices were truly heard.
MAKE A DIFFERENCE, ADOPT HUGH’S LAW
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