MORE than 10,000 terminally ill patients die in Scotland every year without getting the palliative care they need, a leading academic who has compiled a report for MSPs has estimated.
Professor David Clark, a researcher in the field at Glasgow University, highlighted the figure of 10,600 in a report which he will discuss today at Holyrood’s health and sport committee which is investigating the provision of end-of-life care.
Clark’s study explained that as there was no current, reliable study on the number of people requiring palliative care in Scotland he had to extrapolate from other research data looking at the issue in England to come up with figures for Scotland.
“Reliable studies estimating the need for palliative care at a population level have been produced in Australia, Spain and England. These give an upper estimate that in rich countries around 82 per cent of all people who die would benefit from palliative care,” he said.
“This would equate to circa 40,000 in Scotland. In England, slightly less robust estimates have been produced which indicate the numbers that might currently be receiving palliative care.
“These have been used to form estimates of those who might benefit from but are currently not receiving palliative care – giving an estimate for Scotland of 10,600 people who die each year without receiving palliative care.”
His findings pointed to “a serious lack of information” being collated about the quality and availability of health support for those with life-limiting illnesses and said there was little data available about the number of doctors and nurses working in the field. MSPs launched an inquiry into palliative care in July following the defeat of Patrick Harvie’s assisted suicide bill.
During their examination of Harvie’s proposals they heard concerns from medics and patients that there were shortcomings over the standard of provision offered and that it was not “not available on an equal basis” throughout the country.
“Palliative care is both a public health and a human rights issue,” said Clark in his report.
“The first perspective assumes the insertion of palliative care into the public health system, thereby positioning it in the world of policy making, government priorities, need, supply, and resource allocation. The second perspective derives from the assumption that the development of palliative care can gain benefit from a rights-based approach.”
MSPs hope that their findings will help shape a framework on palliative and end-of-life care which ministers are currently drawing up.
Yesterday committee convener Duncan McNeil said Clark’s research raised questions about whether patients were getting the support they needed.
“We all know that people are more important than statistics. But if we can’t gather basic information about who is receiving palliative care then this leaves serious questions open about who is not getting the care that they need,” he said.
“The committee has already heard during the course of its work into the assisted suicide bill that anecdotally there are serious deficits in the quality of palliative care being provided for in Scotland.
“From the evidence we have received already during the course of our inquiry, there have been individual cases which tell a story of the difficulties experienced by people at the end of their life in accessing and receiving the palliative care they need.”
Deputy convener of the committee Bob Doris MSP added: “The provision of end-of-life care is not one that is going to go away as our population ages and more and more people need care at the end of life.
“Part of the issue is one of identification of who might need end-of-life care. There is good quality palliative care being provided for across Scotland. However, that work often goes unidentified. We have to change that and ensure greater support is given when needed.”
Last year the World Health Assembly passed a resolution requiring all governments to make provision for palliative care.
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