A seriously ill child gets a treatment plan. Their family should get one too

The launch comes at the start of Childhood Cancer Awareness Month, 24 hours after the consultation closed for Hugh’s Law, and as we approach the fifth anniversary of Hugh’s death on the 18th September.

The title is deliberately uncomfortable. Britain does not have a generation of weak or incapable parents, quite the opposite, over the last 4 years campaigning I have met some of the bravest and courageous parents you could meet. What it has is a fragmented system that allows ordinary, resilient parents to reach breaking point before any meaningful help arrives.

I know this because I lived it. When our six-year-old son Hugh was diagnosed with cancer, he was given a treatment plan. Our family was given nothing comparable. Overnight, we became carers, advocates and decision-makers while trying to protect Hugh’s younger brother, keep working, pay the mortgage and survive the psychological impact of what was happening. Sadly, Hugh died in September 2021.

Our experience is not an isolated failure. Across the country, families facing serious childhood illness are expected to navigate employers, benefits, schools, hospitals, councils and mental-health services separately. Support too often depends on where they live, what they earn, whether their employer is compassionate and whether they have the time and strength to fight for help. Sadly, some do not. That is the central failure our white paper seeks to address: support must be offered, not searched for.

Fix Britain’s Broken Parents proposes a National Family Support Pathway, triggered at diagnosis. Every family should have a named family coordinator, an early whole-family assessment and one joined-up support plan covering healthcare, work, finances, mental health, education, siblings and, where necessary, bereavement.

This is not about creating another layer of bureaucracy. It is about joining up systems that already exist and ensuring somebody is accountable for making them work together. To ultimately remove the vast amount of indignity and paperwork attached to having a sick child. The repetition of the situation, triggering PTSD every time you have to relive the awful time, the arduous form filling and any lack of signposting beats parents up mentally and physically.

At its heart is Hugh’s Law: a statutory right to protected, paid leave when a child becomes seriously ill. The Government’s consultation on this issue has just closed. It now has a once-in-a-generation opportunity to ensure parents are not forced to choose between their child’s bedside and their job, income or home. On Monday, the Children’s Commissioner for England backed the calls for Hugh’s Law.

But employment protection alone is not enough. The paper calls for proactive, opt-out mental-health support from diagnosis, with an initial offer within seven days, not months, after a parent reaches crisis. It also proposes a Sibling Guarantee so brothers and sisters are identified, supported by schools and health services, and no longer treated as invisible bystanders.

We also need urgent reform of disability benefits. Families should not wait 90 days before a seriously ill child can qualify for Disability Living Allowance. The additional costs begin on day one, and the state’s response should begin then too.

These reforms are morally right, but they are economically responsible as well. When parents are pushed out of employment, employers lose experienced staff, household incomes collapse and pressure moves elsewhere to the NHS, welfare system, schools and local authorities. Earlier support costs less than repairing families after they have broken down.

This white paper has been shaped by families, lived experience, charities and employers through our national charity, It’s Never You. It is not asking government to solve grief or remove the reality of serious illness. It is asking government to stop making an already devastating situation harder. We are asking that parents have space to breathe and room to grieve. We could not change what happened to Hugh. But we can change what happens to the families who come after us.

The question for ministers is no longer whether the system is failing. The evidence is clear. The question is whether they now have the courage to fix it.

____________________

Ceri Menai-Davis is the co-founder of It’s Never You.

LBC Opinion provides a platform for diverse opinions on current affairs and matters of public interest.

The views expressed are those of the authors and do not necessarily reflect the official LBC position.

To contact us email opinion@lbc.co.uk