More research needed on quality and availability of palliative care in Scotland

Scotland has a strong record of success in delivering high quality palliative care services, but there is a serious lack of information being collected about the quality and availability of palliative care in Scotland according to a report produced by a leading end of life care researcher.

Currently there is little effective measurement of inputs into palliative care and most importantly no measure of outcome or quality. In his report, Professor David Clark of Glasgow university calls for more data on inputs and resources that are invested in palliative care. While the UK has been ranked highly in the provision of palliative care, the data can’t be separated out for Scotland.

The report was prepared for the Scottish Parliament’s Health and Sport Committee’s inquiry into palliative care. The committee’s convener Duncan McNeil MSP said: “From the evidence we have received already during the course of our inquiry, there have been individual cases that tell a story of the difficulties experienced by people at the end of their life in accessing and receiving the palliative care they need.

“The research identifies a major issue and that is a serious lack of information on the provision of palliative care in Scotland. 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.”

Deputy convener 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. The Scottish Government is already looking into this area as they prepare to publish their Framework for Action on Palliative and end of life care. We hope that this research and our inquiry findings will provide some helpful insight to this.

“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.”

Using projections based on English data, the report also states that approximately 10,600 people in Scotland may not be receiving the palliative care they need.

Only 20 countries in the world to date have achieved a significant degree of palliative care development as demonstrated by levels of service provision, education, drug availability, research, financing and policy recognition. Palliative medicine is recognised as a specialist field of activity in only 26 countries worldwide, the first of which was the United Kingdom back in 1987.

Globally, good access to pain management is the exception not the rule: 5.5 billion people (83 per cent of the world's population) live in countries with low to non-existent access to pain relief, 250 million (4 per cent) have moderate access, and only 460 million people (7 per cent) have adequate access. Insufficient data are available for 430 million (7 per cent).