The sad case of Ashya King, the five year old with a brain tumour who was taken from hospital by his parents, has generated huge amounts of publicity in the UK and has focused attention on the issue of cancer treatments available abroad that are not easily accessed or available in the UK. I write as someone who has faced this problem with my own child, George, and as someone who has helped other parents access treatment abroad. In this country it’s extremely difficult to criticise the NHS, it’s seen as a betrayal somehow, yet there are serious problems which have to be discussed. I’ve written before about the abysmal figures for osteosarcoma in this country, figures which lag behind some of the other countries in Europe. It’s a similar story with some other cancers, particularly some of the rarer cancers.
In the case of Ashya King, the family wanted their child treated with proton beam therapy, but it’s not the only instance of treatments which are available abroad but not in the UK. There are numerous kinds of ablation treatments in use in other parts of the world which are not often used in the UK – cryoablation, radiofrequency or microwave ablation and so on. In some cases there is treatment in the UK at one or two centres and only for one or two cancer types, whereas in the other countries they treat a wide range of cancers and at more centres.
The hard part comes for parents who’ve identified a treatment and then try to get approval and funding to get that treatment. This is incredibly hard to do. Socially we are not used to demanding things from doctors – we are brought up to be respectful and not to question. It takes a lot of guts to actually disagree and make a demand. If you are lucky you’ll get a hearing, but more often than not you’ll be turned down, fobbed off or made to feel stupid. Persuading your doctors is one thing, assuming that you get through that hurdle – and many people don’t – the next step is to get funding. Again there are some fantastic cases where everything works and people are referred abroad for treatment. In many more cases there’s no funding. In which case people have to fall back on savings, on family and friends, even on taking out loans and new mortgages. Not only is this hard on families financially, it takes time and energy that should be focused on the child not fighting the system.
So, never let anyone tell you that everything is wonderful in children’s oncology in the UK. Especially now, with this case in the news and at the start of Childhood Cancer Awareness month. There are some fantastic people there, some great doctors and nurses, but also a system that is monolithic, moves at a snail’s pace and is resistant to change. And don’t underestimate the bravery and courage required to be a parent of a child with cancer who has to fight that system.