Patient-led Peer Support Groups

What’s the value of self organised peer support groups for people with chronic pain? How to set up and run such a group – a Camden experience.

The importance of peer support in managing chronic pain is increasingly recognised. This session explores the experience of one patient-led, peer-to-peer support group – CamPain, based in the London Borough of Camden.

This session looks at:

1.      The value of peer support

2.      Our group’s journey

3.      The nuts and bolts of setting up and running such a group

Mutual Support

People who attend NHS pain management programmes often report that one of the most beneficial elements is sharing peer support with fellow pain patients. But such programmes have a lot of ground to cover and are time-limited, so peer support is often not readily accessible.

This is a shame because it can be so beneficial. We feel the benefits in our group and they include:

• emotional and social support;
• sharing a common experience;
• reducing isolation;
• a chance to talk in a safe space without being judged;
• building relationships with peers.

Shared Project

So, in coproducing this session, we decided to emphasise the importance of peer support. Therefore our presentation will feature testimony from members of the group explaining how they have benefited from being part of an active, supportive patient network. This won’t be surprising to people with pain but could help to inform pain professionals.

Making it Happen

We will share some of the story about the creation of our group with you, including:

• Identifying a need and developing concept
• Working with pain professionals to get the ball rolling
• Going independent to get even more support
• Getting help from the charity sector and NHS allies
• Building up the network – let’s have a party!
• Keeping going through the pandemic, making lemonade out of the lockdown – and getting plaudits
• Thriving online but keeping it real by reviving our face-to-face roots
• Embracing social networks to keep the connections
• Sharing news and info – from newsletters to websites

Running a Group, Priorities and Pitfalls

Over the last 3 years, our group has had a lot of relevant experience and we’ve gleaned some insights into the do’s and don’ts of running a patient-led group. You might find it useful to discover what we’ve found out, including:

• How do patients self organise?
• How much work should peer volunteers take on?
• How can you bring new people in to help organise activities?
• What works best, democracy or benign ‘dictatorship’?
• What activities to focus on to keep people engaged?
• How do you maintain momentum?
• Does digital include or exclude?
• Do you expand or stay small – is there a sweet spot?
• What are the benefits and dangers of cooperating with NHS services?

We will also look at additional activities that such groups can take on, including:

• Patient advocacy
• Discussion groups on pain treatment and science
• Coproduction with pain and MSK services

Q&A

We wanted to address any issues that attendees might want to bring up so there was plenty of time at the end for questions.

About CamPain

The group was founded in October 2018 by group of patients who had undertaken a pain management programme with Camden NHS pain services. After starting with face-to-face meetings in a space provided by local charity, the group has evolved and diversified. As well as having a lively WhatsApp group we also utilise Zoom to have weekly social get-togethers as well as periodic group discussions on pain management, science and public policy. Now three years old we are still going strong and attracting new members, with the prospect of more joining us through social prescribing.

CamPain Website

© Mark Agathangelou

© Mark Agathangelou

© Mark Agathangelou