One year on: how can working in partnership with people living with chronic (persistent) pain improve care?

February 12, 2024

One year on from the launch of our Chronic Pain Experience-Based Co-Design (EBCD) project, Natasha Callender, Senior Project Manager at the Health Innovation Network South London (HIN), and Natasha Curran, HIN Medical Director and Consultant in Pain Medicine share reflections on their learnings from working with people living with chronic pain. The EBCD project provided an opportunity to gather views about participants’ lived and learnt experience. From getting a diagnosis to practical daily challenges which informed the approach to co-designing improvements for chronic pain management.

In modern healthcare we conceptualise treatment as a linear pathway, starting from diagnosis to treatment. In our EBCD project we found that some patients waited more than 10 years to have a diagnosis for their chronic pain. However, chronic primary pain may be the diagnosis - pain lasting more than 12 weeks with no clear underlying cause, or pain (or its impact) that is out of proportion to any observable injury or disease (NICE 2021). Thus, pain management should not be dictated by needing another diagnosis, as chronic pain is a diagnosis itself. In the NHS only a small proportion of the 15.5 million people living with chronic pain will see a specialist about their pain.

Patients often present to their GP when they initially experience pain and, in some instances, acute pain transitions to chronic pain. After ruling out sinister causes of pain, the same principles of good-supported self-management apply whether patients are managed in primary or secondary care (see below). As clinicians, it is important to acknowledge the impact that living with chronic pain has on every aspect of wellbeing. Clinicians should be aware of the range of services available in the locality (often in the voluntary, community, or social enterprise (VCSE) sectors) and how to refer patients. A learning point from the EBCD project was that patients and staff felt that bringing people together was the best solution for improving chronic pain management in south London.

“For me personally, feeling that things may change to assist others has been a big mental boost for me. I have since signed up to become a volunteer with Mind and am seeking more support for my own mental health. Having the opportunity to be part of this project meant I have more knowledge in my volunteer roles.” Project participant living with chronic pain.

Secondly, systems partners recognised the need to leverage existing services to establish peer support and group education alongside input from health and social care teams to support people living with chronic pain. With our project participants, the following recommendations for peer support and group education were developed:

Co-designed recommendations for peer support and group education 

  • Support every aspect of wellbeing

    Focus on treating people as a whole person including chronic pain and on all aspects of wellbeing.

  • Multidisciplinary

    Involve a variety of health and care staff.

  • Accessible

    Hold sessions online or in locations that are easily accessible by public transport and held at times that avoid peak travel.

  • Guided

    Sessions should be facilitated by health and care professionals who have experience supporting people living with chronic pain.

  • Funded

    Peer support and group education for people living with chronic pain should be funded.

Many participants in the project said they benefited from hearing the experiences of others who live with chronic pain as well as from healthcare staff involved in managing chronic pain:

“During the course of the past year we have learnt what is important to people living with pain and begun to understand the array of different services available in south London. We look forward to continually working with those in pain and those in different sectors so that people do more of the things which are important to them and live with less interference from pain.”Natasha Curran, the HIN Medical Director and Consultant in Pain Medicine

Chronic pain supported self-management resources

For further information about the HIN chronic pain EBCD project, please click here.

Listen to the national Health Innovation Network podcast on engaging patients as partners in patient safety on the HIN chronic pain EBCD project here.

Read a pan London blog on reducing harm for people with chronic pain by reducing harm from opioids here.

Read More

View the resource pack on Reducing harm from opioids by reducing prescribing in chronic pain