You know those NICE biscuits – the plainish ones somewhere between rich tea and malted milk on the boring spectrum? When I was about eight I accidently called them nice biscuits and my nanna explained that they are pronounced neece, which is French. This is because if you walked into a shop and asked the shopkeeper for nice biscuits he’d bring you every biscuit in the shop before you could stop him which would be a big inconvenience for all concerned. It was an important lesson which I’ve always remembered.
At about the same time though, shops changed overnight from being places where you asked a man in brown overalls for what you wanted, “May I have a Fray Bentos pie, two pounds of potatoes, a quarter of Army and Navy sweets, half a pound of faggots and some neece biscuits please?”, to places where you got to pick stuff off shelves for yourself; so I never actually got to use that lesson.
Anyway, you know that NICE Guidance on End of Life Care for Children, Infants and Young People? A draft version of it has just been out for consultation and we’re expecting a final version in December this year. NICE stands for the National Institute for Health and Care Excellence (I know it doesn’t really, because that would be NIHCE, but how that came about is a very dull story indeed). It’s the quasi-governmental body which produces guidance on how the NHS and everyone else should deliver health services.
We’ve never had guidance before on how to deliver any aspect of palliative care for children and young people. This is a problem – not necessarily because we might be doing it wrong, or even because what care you get might depend on where you live. It’s a problem because without properly put together guidance, care might not be as connected as it should be to the evidence base. The process of producing guidance, in short, is to look at what works best, and say that what works best is what should be done.
The draft version of the guidance, which covers hospital and community NHS care as well as hospice care, states amongst other things that access to emotional and psychological support should be available for all; that bereavement support should be offered to all; and that everyone should be supported to have choice about place of death, including at home. This is far more than many children, young people and families get at present. It would be extraordinary and marvellous, and the impact would be transformational. It would require better and more joined together systems. And it would require a lot more money.
I don’t know if that last point might be a problem. But either way, we might either be getting much more and better support for children and young people with life-limiting conditions and their families; or at least we might have verification of the evidence-base so that we can campaign better for it.