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The UK was once ranked the best country in the world for end-of-life care – but that’s not the case anymore. And according to experts, the problem runs far deeper than money.
The people closest to Terry Leader remember him as a man who was always laughing. He emigrated to the UK from the Caribbean island of St Kitts as a child, and was sporty, representing the junior Great Britain martial arts team in the 1970s.
Later he became a father of three and worked as a metal spinner and enjoyed spending time with friends and family. Then in 2021, shortly after he retired, everything changed. Terry discovered he had terminal stomach cancer.
His final wish was to die at home, surrounded by family. But despite being referred for specialist end-of-life care support, Terry and Gillian, his partner of 27 years, were left to navigate his final months largely alone.
Apart from medication from Terry’s GP and a couple of visits from district nurses, “there was nothing”, says Gillian.
I couldn’t understand why – there are the right drugs, she says.
Terry was admitted to hospital as his health declined. “It was not how he wanted to spend his last days,” says his partner.
We will come into work and find patients really suffering – in pain, breathless, agitated or with nausea and vomiting. It is hard to overstate how lamentably badly-resourced palliative care services are.
Money would help – but it won’t fix everything.
Earlier this year the Health Economics Unit and Nuffield Trust think-tank found that plenty was being spent on people in the final year of their life. Nearly £12bn was going on their healthcare, the report found – that works out at in excess of £18,000 per person for everyone who dies.
So what is the solution? More money would help, but it wouldn’t fix everything.
Earlier this year, the Health Economics Unit and Nuffield Trust think-tank found that plenty was being spent on people in the final year of their life. Nearly £12bn was going on their healthcare, the report found – that works out at in excess of £18,000 per person for everyone who dies.
Dr Sam Royston, executive director of research at the charity, says these findings go a long way to explaining why “too many people are dying in places where they don’t want or need to be”.
There must be a clear long-term ambition for all UK governments to shift health expenditure on people at the end of life from hospital to community.
According to Dr Royston, just shifting 20% of the money spent caring for dying people in hospital would be transformative for community services as it would double current spending.
A service like this can make a huge difference, providing equipment, responsive visits as well as telephone advice and signposting to other services.
And better training for non-specialist staff is also essential.
My utopia would be that you don’t actually need lots of specialist palliative care services because everybody is so good at supporting patients at the end of life.
If we were able to support people in the community properly, it would be better for them and would actually cost the NHS less. We need to prioritise this – you only die once.
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