Report calls for improved end-of-life care data collection in Scotland

Scotland has a strong record of success in delivering high quality palliative care services however there is a serious lack of information being collected about the quality and availability of palliative care in Scotland according to a report by Professor David Clark, 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. The report for the Scottish Parliament by Professor David Clark calls for more data on inputs and resources that are invested in palliative care.

The report informs the Health and Sport Committee’s inquiry into palliative care and Convener of the Committee Duncan McNeil MSP 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.

“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 of the Committee Bob Doris MSP said: “This research will play a key role in informing the Committee’s inquiry into the quality and availability of palliative care in Scotland. MSPs will question Professor Clark on his findings later on this morning.

“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 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 in 1987.

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

Professor David Clark said: “Scotland has a very strong record of success in developing palliative care services and contributing to the wider development of this type of care. We need to build on this to get better measures of the reach of palliative care, the outcomes it is achieving and where improvements can be made.”

The Committee launched their inquiry into palliative care on 2 July 2015. Since then they have received 56 submissions.