A survey of people living with chronic pain, commissioned to inform the Scottish government’s plans for pain management services, is suggesting people in pain are not being fully listened to or believed – sometimes related to their gender, age, ethnicity or disability.  

Following a Scottish government funded investigation of the lived experiences of Scots with chronic pain, Healthcare Improvement Scotland today publishes a report calling which highlights the importance of being understood.

People responding expressed a desire for staff across health and care services in Scotland to listen to their experiences and understand the impact chronic pain has on their lives.

Areas covered by the report include staff attitudes, access to pain services and different types of support available from nutritional and exercise advice to self-management and the role of patient feedback.

Clare Morrison, Director of Community Engagement at Healthcare Improvement Scotland, said:

“This is an important report, showing just how much chronic pain affects people across the country.

“Listening to the voices of people who live with chronic pain is a vital part of improving pain management services.”

At the request of the government, Healthcare Improvement Scotland (HIS) asked people living with chronic pain questions about their care, the help received through health and social care services and the role of support groups.

This ‘Gathering Views’ exercise was initially commissioned in May of 2022 and undertaken throughout August and September, reaching 92 people across all of Scotland’s 14 territorial NHS boards. A mix of participants from all demographics were sought, including areas of multi-deprivation, where people may have not previously spoken about their chronic pain.

HIS says the findings will inform the ongoing development and implementation of the Scottish government’s Framework for Pain Management Service Delivery Implementation Plan.

Respondents came from across health boards, from a mix of urban, rural and island community perspectives.

From the responses, a series of seven recommendations have been made to government.

What participants reported

Most of the people who were involved in the HIS work feel that there is a limited understanding across all areas of health and social care in Scotland of what it is like living with chronic pain.

Many detailed difficulties of feeling judged or not believed. People responded that they would like to see a more holistic, person-centred approach to care which acknowledges that different people have different needs, experiences and preferences.

Some female participants felt that women’s health issues can still be considered taboo, and a lack of understanding could lead to chronic pain in women not being taken seriously. They shared examples of poorly understood conditions including endometriosis, menopause and pregnancy-related hypermobility, as well as the associated lack of understanding around the link with chronic pain.

Additionally, some of the male respondents felt it was difficult to be believed regarding their chronic pain, and they felt less confident or inclined to become involved in groups and seek support.

Younger participants also said they found it difficult to be believed and understood, reporting clinicians seem to judge without listening, and assume that the pain can’t be that bad due to their age. 

Both recognition and feeling believed were also important to participants from minority ethnic backgrounds, who explained they want to be valued, but can be treated with less dignity due to their ethnicity, and felt they need to prove they are not “trying to abuse the system”.

One participant who has learning difficulties shared how clinicians asked them if they are imagining it, not believing that their pain was a real issue.

Access to support services was raised as a core issue as the availability and range of local NHS support services varies across Scotland. People outlined challenges in accessing support for even obtaining a diagnosis, and particular barriers such as transport and language challenges were discussed.  

Participants also highlighted the need for joined-up care and early diagnosis and intervention – both online and offline – with 82% of participants stating that ‘chronic pain limits their life or work activities a lot’.

Some shared that the digital-first approach prompted by the COVID-19 pandemic was helpful, as many services and support groups can be accessed online. Many participants said that having information about chronic pain support available through NHS websites, including NHS Inform, made life easier.

A number of people responding shared how feeding back to help make a different and improve services, as well as discussing experiences and knowledge with others to help, was important to them. One recommendation calls for proactive promotion of the importance of patient feedback and ensuring feedback processes themselves are widely accessible and fit for purpose.

Another key recommendation made by HIS is to create national training and guidance for staff – specifically involving charities, third sector organisations and people with life experience of chronic pain – in its development.

“Everyone in Scotland should benefit from healthcare services that are safe, accessible, effective and put people at the centre of their care.”

Read more: Scots ‘completely unaware' they can inform policy; Cost of living ‘catastrophic' for disabled people; Inside Scotland's widening health inequalities; Mental health: including men at the margins

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