UK Government:
PARENTS DESERVE BETTER
I have enough to worry about. Finances shouldn’t be one. It’s time for #HUGHSLAW
IN BRITAIN TODAY, THERE IS STILL NO FINANCIAL SUPPORT FOR
PARENTS OF SERIOUSLY ILL CHILDREN
WE’RE EXPECTED TO CARRY THE BURDEN ALONE
THIS IS NOT COMPASSION
THIS IS NOT CARE
THIS IS FAILURE
“I HAVE ENOUGH TO WORRY ABOUT. FINANCES SHOULDN’T BE ONE.”
PARENTS DESERVE BETTER
CHILDREN DESERVE THEIR PARENTS
IT’S TIME FOR #HUGHSLAW
THIS IS THE WHY
In 2021, we lost our 6-year-old son, Hugh, to a rare cancer after a 10-month fight.
After his death, we created “It’s Never You” to support parents of children with cancer offering mental, emotional, and financial help.
During Hugh’s treatment, we met parents pushed to breaking point, traumatised, exhausted, and forced to leave work just to stay by their child’s side.
Unlike neonatal care, there is no statutory right to leave or pay when a child is diagnosed. 70% of parents report depression or anxiety, while most families lose half their income. We are campaigning for Hugh’s Law: protected leave and pay for parents in crisis because being present shouldn’t cost everything.
WHAT IS CURRENTLY AVAILABLE?
There is financial support when a baby is born sick but nothing if your child becomes seriously ill after 29 days.
Right now, parents are expected to rely on:
Unpaid parental leave – just 4 weeks a year
5 days of unpaid carer’s leave
Disability Living Allowance – only after 3 months, with a 20-week delay
Universal Credit – means-tested, slow, and excludes many
That leaves a devastating gap from day 1, just when parents are hit hardest, mentally, emotionally, and financially.
We are fighting to change that.
Hugh’s Law would guarantee paid leave from day 1 for parents of seriously or terminally ill children extending the same employment protections already given to neonatal and bereavement situations.
This is exactly what the welfare state was built for to support people in their moment of greatest need, not abandon them.
Parents shouldn’t have to sell their homes or sacrifice their jobs to be by their sick child’s bedside. But today, thousands do while facing trauma and financial collapse.
Parents deserve better. Children need their parents. And the state must not look away
WHAT ARE WE DOING ABOUT IT?
We want to close a cruel and unjust gap in the current system.
Right now, there is no legal right to paid leave for parents when their child is diagnosed with a serious or life-limiting illness.
Hugh’s Law calls for the introduction of Serious Childhood Illness Leave and Pay a new statutory right to take paid, protected leave from day one of diagnosis, so parents can be present for their child without falling into financial ruin. It would extend the same employment protections already offered to parents of newborns in neonatal care, ensuring fairness, consistency, and compassion across all stages of childhood.
Hugh’s Law is about recognising that when a child becomes seriously ill, their parents need urgent support not red tape, delays, or poverty.
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