Last week I came across Adam Wishart for the first time – he had produced a documentary about the cost of cancer drugs, you can view the film and read my blogpost about it here. Adam recommended the book he wrote about the history of cancer and his family’s experience of it, you can get the book, 1 in 3 on Amazon here. I devoured it this weekend – not quite finished but have learnt a lot about the history of the disease – alongside an affirmation of my own experience with my Dad’s cancer. Will blog about it once have finished the book and taken some time to reflect.
…then yesterday I turned on the TV to watch Andrew Marr and before turning it off caught sight of the billing for Nicky Campbell’s BBC Big Questions, you can catch it on iplayer here. The programme was debating, amongst other things, the cost of care (immediate and throughout life – medical and social) for babies born at 23 weeks. Today I found the trailer for the programme that you can view here:
I’ll be watching BBC2 at 9pm on Wednesday to see the film. This is an area that is close to my heart – my PhD looked at educational curriculum and provision for profoundly disabled children back in the late 90s – focusing on education in England, Wales and Ireland. Not all babies born at 23 weeks will have a profound disability, but lots of them will and the level of support that these babies will require if they live into childhood or adulthood, is in my opinion, far beyond what most people can comprehend without any prior knowledge or information. These personal challenges sit within a context of increasing demand on services, new challenges in the provision of support, more babies surviving and some with greater disabilities, alongside increased life expectancy for all groups – including people with disabilities. You can read more about the changing demands on adult social care in the Dartington Review on the Future of Adult Social Care published by research in practice for adults.
Watching the BBC Big Questions programme yesterday I was struck by how difficult and emotive a topic this is – there was a consultant of public health representing one side of the debate, and two parents of a baby born at 23 weeks presenting the other, at least that was how it was set up to appear; in actual fact the consultant was making an eloquent argument about the ongoing care and support needs that the NHS does not have resource (or remit) to provide, and the parents were sharing their experience and pride in their daughter’s survival and development. Their apparent frustration at the consultant’s view masked what I think was the connection between them, as I understood it they were all presenting the same argument, if babies born at 23 weeks survive, they are likely to require care and support throughout their lives, and currently this support is not readily available.
The parents believe that the decision about the level of support available to their baby was their’s to make with the medical staff; my sense is that few parents when presented with this discussion would have the emotional or physical reserves to engage with it fully so soon after childbirth, or that few could really understand the potential implications of their choice without impartial information and advice available to them. I’m sure this will be picked up and I’m looking forward to watching on Wednesday and to the inevitable ongoing discussion about how we make decisions about the price of life.