Hugh celebrated his 6th birthday on August 30th. However, she could not eat the cake and relapsed two weeks later on the day she was scheduled to return to school. He passed away on September 18th.
We were completely alone that day, as we had been since his diagnosis. There was absolutely no support available. I spent 10 months without a job and no financial support. My family's golf business furloughed staff due to COVID-19. It is not possible to make a living while providing care full-time. That's why I founded the charity It's Never You to support parents. Same situation. This was what Hugh's wife said to me the day he was diagnosed. She said, “You always think something like this can't happen to you,'' and it's something we hear over and over again from families in the same terrible situation.
There is no dedicated financial safety net (unlike Denmark, Spain, Germany, France, Sweden, Portugal, Greece and Belgium, the UK does not offer support for parents in this position) and only a limited number of eligible He is trying to survive on the allowance he has received. The job of a caregiver is incredibly complex. There are no mental health services provided when a child is declared about to die. In many cases, even food was not available, only empty shelves in hospital kiosks. It left us with so many questions: Where was the person who could help us? Where was the cushion for the blow? How could I tell my youngest son that his brother wasn't coming home? I couldn't get any answers.
Figures show that caring for a child in treatment costs an average of £730 a month, with families on the ward watching other parents decide whether they can afford to eat that day. The burden is very heavy. Transportation costs, having to go buy food every day, having to take time off from work, the list goes on. One single mother we met had to leave her 13-year-old son alone at home overnight in order to keep her youngest child hospitalized for treatment. Some people have had to sell their homes because they are unable to continue paying their mortgages due to rising medical costs. One father who came to our charity lost his £75,000-a-year IT job because his company refused to grant him the time off he needed.
Having this pressure on parents at the worst time in their lives makes an unbearable situation even more dire. After Hugh passed away, my mental health was in shambles. I needed immediate counseling for my PTSD because I had seen and heard things that my parents should never have received. After being told he had 12 weeks on the NHS waiting list for treatment, his condition was so bad that I again paid for the treatment out of pocket. Without it, I wouldn't be here now – but I felt it was a serious mistake to spend another £2,000 when I had already lost so much.
It is almost inhumane that parents like us are suffering financially. That's why we're fighting to pass Hugh's Law in Congress, which would provide furlough-like benefits to parents who can't work while their children receive treatment. A second reading will be held on January 19th, with the help of local MP Sir Oliver Heald, who introduced the bill as a private member's bill.
