Recommendations

Staff understanding and attitudes

It is clear from the findings that people who suffer with chronic pain believe there is a limited understanding of what it is like to live with the condition in all areas of health and social care across Scotland. Participants also highlighted the importance of being believed and not being judged, and that they would like to see a holistic and person-centred approach to their care.

Recommendation:

• Scottish Government to develop clinical guidance and training for staff to support the diagnosis, treatment and support of chronic pain. This could be developed with the support from charities, third sector organisations who provide advice and support for people living with chronic pain as well as specialist nurses and clinicians. People living with chronic pain and their families/carers must also be involved to bring real life experience to the guidance.

Access to support services

It was apparent from the findings that the availability and range of local NHS support services varies across Scotland, as did the participants’ experiences. Participants highlighted challenges in getting access to support, for example obtaining a diagnosis or finding information. They also noted the need for equitable access to support, independently of age, sex, location or background. Further particular barriers that were discussed were transport issues and language barriers. Participants also highlighted the importance of joined up care and early diagnosis and intervention. The need to provide access both to online and offline resources and support was noted as well.

Recommendation:

• Health and social care services to carry out an Equality Impact Assessment (EQIA) for service provision to ensure that people living with chronic pain have equitable access to relevant professionals and support services to enable them to have their needs met. Tailored and proactive signposting for support whilst being mindful of barriers around technology, language, transport and finance were highlighted by most of the participants.

Different types of support

Participants discussed access to medication, which for some was very important. However, many also discussed the need to move beyond just offering medication, and needing to have access to a variety of support, whether further clinical support by physiotherapists, for example, or alternative therapies and exercise or creative activities. The need for access to mental health support was also discussed.

Recommendation:

• Health and social care services to provide information, guidance and signposting to people living with chronic pain.

Self-management

Participants discussed how they need to be empowered and supported to self-manage their chronic pain, which has become more prominent due to their experience of limited or lacking support. As part of this, they highlighted the need for support to develop further understanding and knowledge around chronic pain and how to self-manage this.

Recommendation:

• Health and social care providers should consider how they ensure appropriate links with services such as mental health and befriending can be provided to those living with chronic pain and their families.

Patient feedback

It is apparent from the findings that most participants had not been asked to provide feedback or discuss their experience and views. Furthermore, from the small number who had, most had not heard back around what came of their feedback, which left them feeling negative about their experience, angry and disillusioned. Participants highlighted the importance of providing different ways to feed back and varying methods of engagement, as different people are more likely to engage in different ways. They also discussed an array of perceived benefits when supported to provide feedback, as well as potential improvements to current feedback processes. Specific challenges were also noted, such as access and language barriers.

Recommendations:

• The wider benefits of listening to and acting upon patient feedback is considered by health and social care providers with improvements needed to responses numbers. Health and social care providers to proactively promote the importance of sharing experiences with patients. Measures are taken to provide platforms for engagement which provides equitable access for all.
• Scottish Government and health and social care services, working with people living with chronic pain, to develop a person-centred holistic approach to the provision of care for people living with chronic pain. This would include input from informal carers.