Pain Management Panel consultations: report

Conclusions

A diverse panel of individuals with lived experience of chronic pain has engaged with the Scottish Government in implementing the Framework for Pain Management Service Delivery.

The panel shared their experiences of accessing support and services, the challenges and barriers they face, and the treatments and aspects of care which make them feel more in control of their pain. These spanned positive and negative experiences and each person’s story was unique; there is a diversity of needs and experiences within the community of people living with chronic pain.

Some panel members feel their pain is largely under control, and have received effective treatment and support; for others, their search for effective treatment and support is ongoing. Across their contributions, panel members shared many moving stories of times when they endured great difficulties, including pain, loneliness, anxiety, distress and frustration. They welcomed the opportunity to share their feedback with the SG and inform future work on the Framework.

Results from the Delphi process provide the SG with an insight on the aspects of care that are of greatest priority to the panel and the most prominent challenges they face. Primary care services were viewed as the most useful and important source of support for the panel (although not unanimously), while the biggest barrier to accessing support was the focus on painkillers over other pain management methods.

The panel needed to be relatively small and diverse to be an effective working group that could provide feedback based on their own experiences and expertise. It included people who experience different levels of pain, with a range of demographic characteristics. The iterative nature of engagement and detailed group work necessitated engagement with a limited number of individuals. However, the relatively small sample size means that the qualitative evidence from this group cannot be interpreted as statistically significant, nor can we draw conclusions about the wider population of people living with chronic pain; rather it has provided rich insights into the lived experience to complement the findings of quantitative studies in this area.

Some of the experiences shared by panel members pose questions that provide scope for further research. For example:

• The role of technology:
• How to support people who may:
• Potential inequalities linked to:

While the experiences and insights shared by the panel have generated a useful evidence base for the Scottish Government to draw upon, research with a larger number of participants is required to further understand the needs and experiences of people with specific characteristics. As set out in the Implementation Plan, the Scottish Government have committed to delivering such an approach of wider engagement in partnership with Healthcare Improvement Scotland. In future, work to explore the needs and experiences of people living with chronic pain, offering in-person opportunities to participate may be worthwhile, if budget and timescales enable this, for a fully inclusive approach.

Next steps

All panel members have agreed to remain engaged with the project. During conversations, some remarked that they found participating in the research enjoyable, thought-provoking and rewarding, expressing appreciation for having the opportunity to feed into the formation of the chronic pain framework and implementation plan.

I think it's great that they're doing this. Hopefully, some good will come out of it. [Female, 75, Stirling, C1, low impact]

Thank you for caring to ask. [Female, 73, Inverness, C2, no impact]

As we learned in the first phase of engagement with the chronic pain panel, a few participants faced difficulties using technology in a group work setting, so they engaged by telephone. This choice in participation methods will also be offered in future engagement activity.

The Panel has been commissioned to help inform and support development of a further Action set out in the Implementation Plan, aligned to delivery of Aim A – Person centred care which will be reported on in future.