Gathering views on chronic pain
The Scottish Government has developed a draft Framework for Pain Management Service Delivery in partnership with people with chronic pain, clinical, research, third sector communities and other key stakeholders.
We were commissioned to undertake a Gathering Views exercise in May 2022 to support the ongoing development of the Framework for Pain Management Service Delivery by gathering information from people in Scotland living with chronic pain. It is intended that the recommendations from this exercise will be used to inform future delivery and resourcing of the Framework, as well as provide an evidence base for improvement opportunities for local pain services across Scotland.
The Gathering Views exercise was undertaken during August and September 2022 in all 14 territorial NHS board areas in Scotland with individual interviews taking place via phone calls, video calls or in face-to-face settings. The work involved gathering lived experience from individuals living with chronic pain by asking questions about the care and support they had experienced through health and social care services and local support groups. This report sets out a range of themes that matter most to the people we spoke to regarding their care.
A total of 92 people across Scotland took part in this exercise over a 5-week period. Interviews were organised through engagement offices using links through local contacts, NHS services and third sector organisations. A mix of participants from all demographics were sought including those areas of multi-deprivation, the seldom heard and people who have not previously spoken about their chronic pain. Representation was achieved from all the territorial health boards reflecting a mix of urban, rural and island communities.
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Publication date: February 2023
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.
- 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.
- 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.
- Health and social care services to provide information, guidance and signposting to people living with chronic pain.
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.
- 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.
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.
- 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.
In November 2023, the Scottish Government published an update to its Pain management service delivery framework: implementation plan and a progress report against its initial 18 actions. These provide an update on the recommendations contained in our report.
A new pain informed care toolkit is being developed for health and care professionals, which will increase their understanding of living with chronic pain and how it can be managed.
Information for patients and carers on the NHS inform website chronic pain has been updated and improved. This work was directly informed by people with experience of living with chronic pain.
The findings from our report will be reflected in an equality impact assessment to inform how the Scottish Government develops chronic pain policy.
A new digital approach to improve the choice of how people with chronic pain engage with services has been piloted in NHS Highland and will be tested further with 2 other NHS boards.
New questions about living with chronic pain will be added to the national Scottish Health Survey. These will build a picture of the prevalence and impact of chronic pain in Scotland over time.