Usher Institute

Usher research changes government legislation

Members of the Primary Palliative Care Research Group have received a Marie Curie award.

Members of the Primary Palliative Care Research Group have received the Marie Curie award for the research team which had published a practice changing research study in the NIHR portfolio.  It was presented at the NIHR and Charities Consortium annual meeting on 6th June 2019 at BMA House London.

PPCRG receive Marie Curie Award

Photo:   Baroness Julia Neuberger presenting the award to Emma Carduff, Scott Murray and Richard Meade of Marie Curie who had been central to influencing legislation.

Barriers and new approaches

The research team, who also included Marilyn Kendall and Anne Finucane from our group, had reviewed barriers to identifying people with advanced illness in primary care. 

Understanding the barriers to identifying carers of people with advanced illness in primary care: triangulating three data sources - BMC Family Practice

They had then piloted a new approach in primary care to identify, assess and support carers of people with various life-threatening illnesses, funded by Marie Curie and Dimbleby Cancer Care.

Changes to policy

Following effective advocacy with the Scottish Parliament and the national media spearheaded by Marie Curie, the Scottish Government amended the Carers (Scotland Act 2016) so that support plans for carers of people with any terminal illness would be fast-tracked from April 2020. Thus thousands of unpaid carers will receive essential support more quickly than previously, as well as family practices being sensitised and enabled to identify such carers earlier and for all diseases, not just cancer.

The research team has also influenced the Social Security (Scotland) Act 2018). Scottish patients with any advanced progressive illness can now access financial benefits earlier and regardless of diagnosis through legislation influenced directly by the Group’s research highlighting the inequities created by the previous specific six-month prognosis demanded for such eligibility. Through highlighting the heavy burden of need that many patients with non-malignant diseases have, and developing and evaluating a tool, SPICT, to enable GPs to assess eligibility, the group has helped patients receive benefits and care according to need, not diagnosis or even prognosis.

SPICT evaluation tool

Palliative care from diagnosis to death - BMJ


Author: Scott A Murray, Emeritus Professor of Primary Palliative Care, Usher Institute