Pain Management Panel - engagement: phase 2 report

Executive Summary

In August 2022, the Scottish Government commissioned The Lines Between to recruit, support and engage with a cross-section of people with chronic pain across Scotland to inform the development of the Pain Management Framework and Implementation Plan. With support from a research recruitment partner, a diverse panel of 16 individuals was assembled.

Two phases of engagement with the panel were undertaken between August and November 2022. The first phase explored experiences of accessing chronic pain support and services, the challenges and barriers panel members have faced, and the treatments and aspects of care which make them feel more in control of their pain. A report on the first phase of consultation with the panel was published in November 2022.

This report presents findings from the second phase of engagement with the panel which focused on chronic pain information needs and resources. Through focus groups and one to one interviews, the panel shared their experiences of searching for information about chronic pain, including the reasons why information is sought, sources of information, and their preferences.

The panel described various information needs; for example learning new ways to manage their pain, finding out about potential side effects of new medication, and researching how their condition will affect their long time health. For some panel members, seeking information about chronic pain has become a regular part of their life.

Various information sources are used by the panel. Some prefer the convenience and breadth of information that online searches offer, having been disappointed with the level of information available through GPs and other health services. Others felt that in-person contact with a health care professional is the most reliable source of information, expressing some scepticism over the veracity of online information sources.

The panel also participated in an exercise to provide feedback on two official NHS Inform resources: the webpage on chronic pain, and the chronic pain self-help guide. Responses were mixed; there was agreement that both the chronic pain webpage and self-help guide are well-designed and easy to use, and both offer relevant information that would be helpful for those in the early stages of their chronic pain condition.

However, the panel felt that the information was quite basic, and few were able to point to any information that they had not seen before. The need for information in offline formats was stressed; one panel member was unable to provide feedback on the NHS Inform resources as she did not feel comfortable or skilled enough to access them on the internet. There were also calls for lived experience to be better reflected in the resources.