I read a deeply disturbing article last night. I should have been asleep, but instead I scrolled through The Guardian’s web site and accidentally landed on a story that resonated all too closely to my own life.
“A 22-year-old woman with relapsed acute myeloid leukaemia died after being denied a second allogeneic stem cell transplant,” the article in The Guardian on NHS rationing read. “Her doctor said her late relapse and good response to salvage chemotherapy meant there was a 50% chance that a further transplant would have cured the disease. However, the local GP-led clinical commissioning group refused to fund the procedure, which would have used healthy stem cells to try to help her bone marrow, and she received palliative care instead.”
I tried to sleep, but I couldn’t. Over and over in my head rolled the conversation I had with my consultant where she said the only hope for me was a second bone marrow transplant and that the only thing standing in my way was NHS England.
There has been a seismic shift in how treatments on the NHS are funded. Not only cancer treatments, but things like restricting botox to help children with cerebral palsy and old wheelchairs not being replaced. It is destructive and favours short-term savings over long-term gains. It takes lives like mine, and yours, and your children, and it weighs up their financial worth.
Sadly, I think I’m one of the few who know it is happening. When will other people? Will it take a mother being denied life-saving treatment or a son? Will it be when they hear their neighbour never left the hospital or they watch a family across the road fruitlessly try to squeeze their 13-year old into a wheelchair for a seven-year old?
For me, that moment has already happened. A thousand-times over it has happened for the last six years, ever since my daughter was born severely-disabled and I sat in a hospital room full of doctors, nurses and representatives of Lambeth council discussing May’s release from hospital after her birth. It was then that one women from Lambeth said, completely over our heads and to the hospital administrator, “So, are you absolutely certain this child is a resident of Lambeth?”
Right then, I knew. She wasn’t asking because she wanted to make sure every box was ticked. She was asking because sick, disabled people are expensive. No doubt, she is doubly anxious now whenever a child like May is born in Lambeth. Where will the money come from? When a government cuts 40% off local councils budgets, you better believe that some of that money will be shaved from equipment like wheelchairs.
When my life was hanging in the balance, when I had been waiting 6-weeks for NHS England to decide whether I’d live or die, a surge of support lifted my story onto the pages of The Guardian and virally across Facebook and Twitter.
You would have thought I’d have felt triumphant as plea spread far and wide. My computer and phone beeped at me non-stop for 48-hours as people sent me messages of support and offers to help. To be frank, it made me feel sick. I had to turn off everything for hours at a time. It was so overwhelming. I found it doubly disturbing that people felt I was a lone, extreme case whereas I suspected there were many more like me dying because decisions were being taken out of their doctors’ hands.
I knew this first hand. I received an email in the middle of this from a man desperate to save his wife’s life. She was in the exact circumstance I was: young, a failed, first bone marrow but a willingness to undergo the horrendous, destructive treatment again to save her life. There was a good chance it would work too, but a reluctance to treat her.
I think about her frequently. “She is a mum, only 37,” he wrote me, “and we have three girls aged 13, 10 and 4 so like you we are desperate to save her not prolong her life.” My advice to him must have sounded so weak.
People probably assume my second transplant was approved because of public pressure. I’ll never know for certain, and I’m not so certain. I know my second transplant was initially denied and the reason I’m alive is not because it was finally approved, which it was, but because my own body suddenly kicked into gear months after treatment.
How has his wife done? I’m afraid to ask. But, I think I know. When I read that article, I knew. And, I am devastated. To him I’ll say this, I am sorry. Publicly, I am sorry I couldn’t do more. I could barely fight myself. But, since then I’ve grown stronger and I’m fighting now. No one should have to die unnecessarily to save the ideological face of a government bent on destroying the NHS.
