Running a Group, 
Our Experience

The organisers and whole group have learnt a lot about the best ways to run a peer-to-peer, chronic pain support group. We would like to share our experiences with you.

Our Experience of Running a Peer-to-Peer Pain Support Group

After three years of our organiser team working together to run this group, we feel we have learned a few lessons about how to do this well and what to avoid. Obviously this is still our unique experience and does not necessarily translate to other groups in other circumstances. Nevertheless, for what it’s worth, here is what we’ve learnt…

Working with other volunteer organisers

• Nucleus of people needed to act as organisers.

  • Need a small group of people who have time, capacity and commitment.

  • However, people will drop out from organising roles so do need replacements - therefore try to bring new people to share in the responsibility.

• Need to have a common purpose and vision.

  • Necessary because new people will join who won’t automatically understand how you work.

  • Formulate an agreed approach to working together - we decided to draw up some terms of reference.

• Utilise the skills available within this group.

  • Learn what you and your colleagues do best but be prepared to be versatile and learn new skills.

• Prepare for and share the admin.

  • A certain amount of admin/organising is unavoidable - try not to let this all fall on one or two people to avoid burnout.

• Don’t overdo it!

  • Add regular commitments like weekly meetings/ monthly newsletters gradually and be careful not to overcommit yourselves

  • Important to remember that organisers are still peers and patients.

  • Don’t overburden or take on too much.

Benefits of being organiser 

Getting involved in organising pain group can be a useful opportunity to exercise skills or learn new ones. It can also boost your confidence and self-esteem. There is a lot of satisfaction in knowing that you are helping fellow pain sufferers and making a positive contribution to your community.

One of our organisers, Stephen Lee, shares his experience.

I found it really rewarding to go through the process of trying to create a space for those with similar experiences with pain as myself. It’s very important for me that we have somewhere without strict rules or protocols to follow, somewhere people could just be together with pain and with the struggles of living it. With others who get the difficulties of trying to hold down a job or be part of a family who don’t understand our pain. To help make somewhere for us where we all recognise each other’s pain and struggles.

Another positive aspect is the opportunities that can arise to do Patient and Public Voice (PPV) or Lived Experience Partner work with the NHS.

• Several of the group organisers were invited to become members of Camden MSK’s Patient Advisory Group, based on their involvement with CamPain.

• One has gone on to have PPV roles in Borough, CCG (North Central London) and NHS England & Improvement.

• One has built on the boost in confidence and networking gained as an organiser to go on and train to become a Mental Health Peer Coach with Camden & Islington MH Foundation Trust.

• Another has gained useful experience which assisted with gaining a professional role as a patient and public engagement officer with a prestigious scientific body.

Group Activity 

As you’ll know if you’ve read our group journey article, it took us a while to understand which activities would work best for a peer-to-peer, pain support group. These were our conclusions:

• Learn what group members want by constantly communicating. 

  • Don’t assume what people want or need - discover through experience.

• Keep group activities manageable, interesting and relevant.

  • If it’s too taxing or distant from everyday experience, many will switch off.

• Maintain momentum by having regular meetings/events.

  • Our group started as an antidote to the infrequent meetings provided by the local pain management services-.

  • It’s all too easy for pain patients to get frustrated or lose interest if something doesn’t seem to be working properly.

• Don’t try to replicate PMP environment

  • We found it best to keep it light and fun much of the time.

  • Too much focus on pain management techniques can feel 'preachy' and inappropriate from a non-clinical peer.

  • We don’t have the expertise to train others in pain management, that’s not

our strength.

• Peer support is what a patient-led group does best. According to Patient Voice:

  • Peer support involves people sharing knowledge, experience or practical help with each other.

  • There is evidence that peer support can help people feel more knowledgeable, confident and happy and less isolated and alone.  

  • Peer support may also encourage people to take more care of their health which, in the longer term, could lead to better health outcomes.

• Peer support in practice.

  • At its simplest, this is social interaction with fellow pain patients and the informal exchange of useful ideas and advice. 

  • Sometimes just sharing time with other people with pain and feeling understood can be a comfort in itself.

  • Group members value not having to explain themselves and not being judged as they would be amongst people without this condition, however well-meaning or supportive.

• Organised activity such as discussions about particular themes is great but can be an effort for members to engage with so we try not to overdo this.

  • We consult with the wider group to find out which pain management topics they want to talk about.

  • We try to keep it accessible and non-technical.

  • We allow plenty of time for discussion and ensure everyone who wants to be heard gets the chance to speak.

Going digital

Our group was quite cautious about embracing digital initially. It was quite intimidating and felt like a lot of work to get started. Now it’s become embedded in the way we operate and it would be unthinkable not to be online.

• Can increase engagement

  • Many pain sufferers struggle with travel, walking and sitting. Digital bypasses these problems.

  • It’s much more convenient to find a time when people can meet digitally.

• Cheaper and more regular engagement.

  • Not having to find a free room or pay for a room.

  • By making it easier to organise meetings, you may be able to hold them more often.

• However, online meetings need to be managed carefully.

  • Online meetings require careful facilitation to ensure everyone is heard.

  • Be aware that different group dynamics may emerge in online settings.

  • We recently co-produced a set of guidelines for Zoom meetings to ensure that they remain fully inclusive and safe, particularly for members who may join in the future.

• Not digital by default.

  • Digital doesn’t work for everyone - some people may disengage if it’s the only option.

  • We resumed our face-to-face meetings as soon as possible, keeping them going even though few people are currently ready to return.

  • It feels important to keep the opportunity for physical meetings open, so everyone can participate.

  • We have been able to combine the benefits of both digital and in-person meetings by holding meetings in a hybrid format, so that participants can join either virtually or face-to-face to give us the best of both worlds.

Coproduction and Democracy 

We try to be as democratic and inclusive as possible - initially because it’s just the right thing to do but also because it increases everyone's sense of ownership of our collective enterprise. We want as many people as possible to be involved in decision-making and organising our group and believe that that’s the way to build a group that remains sustainable in the long-term.

• We encourage everybody to come forward to act as organisers if they want to, and to do as much or as little as they are able - it’s not an exclusive group.

• We try to involve as many people as possible in every decision about the group through…

  • Our newsletter

  • Our WhatsApp groups

  • Our regular group meetings

• We now have a planning group, which includes some of our most committed and active group members alongside the core group  organisers.

  • This group now discusses and decides group policy and helps us to plan for the future.

• Digital to the rescue.

  • Regular interaction through WhatsApp and Zoom (plus good old email) makes organising and convening this group much easier.

​

Conclusion

The key lessons we have learned are:

• The importance and value of peer support.

• That holding regular activities helps maintain momentum and engagement within the group.

• The benefits of embracing digital whilst retaining face-to-face elements.

• To be as inclusive and democratic as possible.

• Don’t try to do too much – be kind to yourself.

​

Group Co-organisers

​

Rachel Bonnington
Mark Agathangelou
Stephen Lee