With end-of-life care charities growing in number and strength, Dr Stephen Kirkham asks whether this is a result of the NHS' failings.
‘This isn’t a honeymoon job, you know’, glared Dr (later Dame) Cicely Saunders as she interviewed me in 1979 for a post at St Christopher’s Hospice. She had asked me about my personal life and I had explained that I had recently become engaged. The punchline was that, 8 months later, Cicely’s wedding took place 3 days before mine.
‘The Dame’ had the potential to be a scary lady, but her achievement was truly impressive: with no existing model to show to her potential donors, she managed to raise half a million pounds to build St Christopher’s. Not much? The site in south London where the hospice was built in 1967 was bought for £27,000. Allowing for inflation, you try raising tens of millions in today’s money for a system of care that only exists in your head.
She founded St Christopher’s Hospice because she saw great deficits in the care that the NHS gave to those at the end of their lives. Local communities were so inspired by what was being done that most have set up their own charities to deliver something similar. Unfortunately, this has not solved the problem.
The strength of the charities is a symptom of the continuing failure of the NHS to provide appropriate end-of-life care, because if NHS services were adequate then the charities would not be needed
The strength of the charities is a symptom of the continuing failure of the NHS to provide appropriate end-of-life care, because if NHS services were adequate then the charities would not be needed. Perversely, it is also a cause of the NHS not providing that care, because the charities provide at least some of the services that are required, and do it very well. Many managers at various levels within the NHS also consider that end-of-life care can be, should be, and is provided by charities. But the NHS looks after us from before we are born, and with tiny exceptions is there to help us throughout our lives – until we inevitably come towards the end of those lives. Then, the care we get is a lottery, whether by postcode, by diagnosis, or simply by goodwill.
Hospice UK lists 194 independent charitable hospices in the UK, as well as two national charities which run their own services. These charities had a combined income of £1.4 billion in 2017. A quarter of this came from government funding, while the charities had to raise the other £1 billion. Expenditure on care was £954 million, with costs of raising funds £476 million. Pause and think on that: it’s 476 piles of cash, each of one million pounds, donated for hospice care but spent on fundraising.
What a great waste of money all of this is. If the care currently provided by all those 196 charities were embedded within the NHS, the total clinical expenditure would be reduced by at least a third; if the total financial envelope remained the same, the services could be almost doubled. They would also be situated where all the prospective patients are: in the NHS. End-of-life care services would be more comprehensive, more responsive, and more accessible.
It’s about who is there to help you with complex needs of pain, sickness, or a whole host of possible physical, emotional and social problems
And they need to be accessible. Sorry to break the bad news, but you are going to die. As that time approaches, you will want the best possible care for yourself and those close to you, easily available and provided routinely. This isn’t an argument about who delivers personal care and whether it’s through local government or the NHS, whether it’s means tested or taxpayer funded. It’s about who is there to help you with complex needs of pain, sickness, or a whole host of possible physical, emotional and social problems. When you are dying, there’s no second chance of getting those things right.
Cicely Saunders was born in 1918. One hundred years later, it is time that we campaign for excellence in end-of-life care to be available to us, and to those close to us, and to everyone in the country, because the NHS provides it. And the NHS can provide it, because the cost to the exchequer would not be so much more than it is now, after the great waste of money has come to an end.
Dr Stephen Kirkham worked as consultant in palliative medicine for 30 years, 10 of which in a charitable hospice and 20 in an NHS palliative care unit. He was editor-in-chief of the journal Palliative Medicine, and is chair of trustees of Forest Holme Hospice Charity.