‘When our six-year-old son died of cancer, there was no support whatsoever’

Hugh made it to his sixth birthday on August 30. But he couldn’t stomach his cake, and two weeks later, on the day he was due to return to school, he relapsed. He died on September 18.

That day, just as had been the case since his diagnosis, we were completely alone. There was no support whatsoever available; nor financial help for the 10 months I had spent out of work. My family’s golf business put our staff on furlough during Covid, and there is no way I could have earned a living while being a full-time carer – a thought that led us to set up a charity, It’s Never You, to support parents in that same situation. That was what my wife said to me on the day Hugh was diagnosed – that you always think awful things like this would never happen to you – and it’s one we’ve heard many times over from families in the same terrible position.

There is no dedicated financial safety net (the UK, unlike Denmark, Spain, Germany, France, Sweden, Portugal, Greece and Belgium, offers no help for parents in this position), and trying to navigate the limited allowances you’re entitled to as a carer is incredibly complicated. There are no mental health services provided when you’re told your child is about to die; there wasn’t even food available, often, just the empty shelves of the hospital shop. It left us with so many questions: where was someone to help us? Where was the cushion for the blow? How do we tell our youngest boy that his brother is never coming home? We never received any answers.

Figures show that it costs an average of £730 per month to look after a child in treatment, and on the ward, we had watched other parents making decisions about whether they could afford to eat that day, so heavy is the financial burden. The transport costs, having to buy food out each day, having to pull out of work: the list goes on. One single mother we met had to leave her 13-year-old at home alone overnight, so she could remain in hospital for her youngest’s treatment; another had to sell her home, as she couldn’t maintain her mortgage repayments with spiralling medical costs. One father who came to our charity lost his £75,000pa IT job when his firm refused to allow him the leave he needed.

This pressure being piled on parents at the worst time in their lives makes an unbearable situation more devastating. After Hugh died, my mental health was in pieces – I needed counselling straightaway for PTSD, having seen and heard things that a parent should never have to. After being told the NHS waiting list for treatment was 12 weeks, I again paid out of pocket for the treatment as I was in such a bad way. Without that, I wouldn’t be here now – but spending another £2,000 when we had already lost so much felt seriously wrong.

What parents like us are being put through financially is almost inhumane. That’s why we’re fighting to get Hugh’s Law – which will provide furlough-type payments for parents unable to work during their child’s treatment – through parliament. With the help of our local MP, Sir Oliver Heald, who raised it as a private members’ bill, it will have its second reading on January 19.