HUGH’S
LAW
Hugh's Law
In 2021, we lost my 6-year-old son, Hugh, to a rare form of cancer after a 10-month battle. After Hugh’s passing, we started “It’s Never You,” which supports the parents of children with cancer by providing emotional, financial, and mental well-being assistance. During Hugh’s treatment, we encountered many parents who were struggling—not just mentally, due to the extreme trauma of caring for a sick child, but also financially, as they often had to leave work to care for their seriously ill child. The state offers no financial support for parents who must leave work immediately to care for a sick child in the hospital during intensive treatment. In the majority of cases, the primary caregiver has to give up work to look after the child, resulting in a 50% reduction in household income.
What support is currently available?
There is an abundance of financial and emotional support available when you bring a child into the world, but sadly, nothing is in place to support those who have a seriously ill or terminally ill child. We have witnessed parents being forced to sell their homes, clothes, and cars to afford staying with their child during the first few months of treatment, with some having to make the heartbreaking decision between working and caring for their child.
Currently, there are only three options available for parents seeking financial support:
- Universal Credit, which is means-tested and not easily accessible.
- Disability Living Allowance (DLA), which can only be applied for three months after a diagnosis and then takes an additional 20 weeks to process. DLA is required to claim a Blue Badge.
- 18 weeks of unpaid parental leave, taken in 4-week blocks within a calendar year.
There is a gap from Day 1 to Day 90 before a parent can apply for financial help. This is the most critical and stressful time for a parent. We ask that funds be set aside in the next budget to offer a Day 1 grant to parents of a chronically sick child. This grant would be limited to the first 1-3 months and approved quickly by the consultant, with a renewal every month. According to data from the Treasury, approximately 4,000 children each year are expected to have a hospital stay of 2 months or more. For these parents, receiving financial support in the first few months to maintain stability and avoid additional burdens would mean the world. The costs of caring for a chronically ill child are estimated to be £750 per month.
If the government were to provide that level of support to the 4000 parents whose children are diagnosed with a chronic illness each year for a 2 month period to support them with the costs before they are eligible for DLA, it would cost the Government £6million. This very small amount of money from the Government would make an enormous difference to the parents who suffer the hardship of having a chronically ill child in hospital.
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What are we doing about it?
We want Parliament to introduce Hugh’s Law, which would offer financial assistance when children undergo prolonged hospital treatment.
We are calling on the Chancellor to commit to providing immediate financial support for parents of sick children who find themselves financially vulnerable following their child’s diagnosis.
Every day, 10 children are diagnosed with conditions that require them to spend over two months in the hospital. We are asking the Chancellor to provide support from Day 1, alleviating a significant burden during an already difficult time. This is a low-cost measure that offers essential protection and support for all parents. As the Prime Minister said on July 5th from the steps of Downing Street, “For too long now, we have turned a blind eye as millions slid into greater insecurity… I want to say very clearly to those people – not this time.” We urge the government to ensure that parents of sick children are no longer ignored nor left behind.
More information on the work we've been doing
To read more about our campaign to have Hugh’s Law passed, head over to our ‘News’ page.
WHAT WILL
YOU DO?
WHAT WILL
YOU DO?
WHAT WILL
YOU DO?
WHAT WILL
YOU DO?
Whether it’s making a donation, sparing your time or organising a fundraising event, there are lots of ways that you can show your support for parents of children with cancer.
