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SIP 2017 - Key Statement

Louise Skelly – Patient & Client Council, United Kingdom

"People with chronic pain want a coordinated, holistic service, providing ongoing medical, physical and emotional support by compassionate, understanding health professionals.

Health care decision making can only be if decision makers understand the lived experience of chronic pain sufferers."


Louise Skelly
Head of Operations
Patient & Client Council

Louise has worked in Health and Social Care for some 37 Years working in community care, acute hospital settings, as well as at Government Departmental level. Since 2009, Louise has been employed as Head of Operations for the Patient and Client Council which is a statutory body established to provide an independent voice for patients, clients, carers and communities in health and social care across Northern Ireland. Louise also works as a Lay Magistrate for the Northern Ireland Courts and Tribunal Service. Louise is married with one grown up daughter and her interests include farming, theology and Irish Sport Horse Breeding.

In 2013 she established a small working group of patients and professionals, and worked collaboratively with the Pain Alliance of Northern Ireland (PANI) to develop a specific project.

Based on the lived experience of 2,500 people who experience chronic pain we produced the Painful Truth report. The key findings included:
Pain affects three of the most central areas of people’s everyday life – ability to work, home life and leisure activities. Many people also commented on the ‘invisibility’ of pain.

Getting a diagnosis can be difficult and, often, a lack of understanding by some health professionals contributed to a delay in their diagnosis.

Health professionals should spend more time working with their patients to find more effective treatments, other than medication, to manage their pain.

People with chronic pain want a coordinated, holistic service, providing ongoing medical, physical and emotional support by compassionate, understanding health professionals in the future.

The Painful Truth made 10 key recommendations that were endorsed by the Minister for Health. Following the publication of findings, the Department of Health acknowledged that chronic pain is a condition in its own right. Eight of the 10 recommendations are all in the process of being implemented. The report has also been acknowledged by other regions/ organisations in the UK as setting the context for their work.

This presentation will provide an overview of the report and will more especially focus on our journey in Northern Ireland and the UK to advocate on behalf of people who live with chronic pain and will provide an update on progress made to date and difficulties/ challenges we still need to address.