Rethinking Our Health: Supporting people living with long-term pain

As part of Rethinking Our Health, we have been sharing a series of reflections from the people involved in the programme, exploring new ways of supporting people to live well with long-term conditions. 

In this instalment, Jo Crease reflects on a recent community event in Hangleton & Knoll, where conversations with people living with persistent pain highlighted the importance of connection, understanding and peer support. 

When people who live with pain meet, something powerful happens 

“Oh, I’m surprised you’ve heard of my condition.”

 

“My friend has it. We both have pain, and it helps to talk to each other.” 

These were just two of the conversations that stayed with us after spending time at a community wellbeing event in Hove. They capture something simple but important: when people living with long-term pain meet others who understand, it can make a real difference. 

Supporting mental health and wellbeing in the community

The Rethinking Our Health team recently attended Healthy Mind, Being Well in the Winter, an event organised by the Hangleton & Knoll Project at their community centre in West Hove.

The day brought together local organisations offering support for mental health and wellbeing. People were invited to attend short sessions, meet services working in the community, enjoy some tasty treats and spend time socialising.

We were surrounded by wonderful local initiatives, including:

• Plot 22 Community Garden
• Oasis Community Shop (Brighton & Hove Food Partnership)
• The Carers Centre for Brighton & Hove
• Marie Curie
• HAKIT (Hangleton & Knoll’s digital inclusion project)

There were many more fantastic projects there too.

Seeing them all in one place was a reminder of just how many different factors can affect our mental health, and how many forms of support exist when we look at the whole person, not just a single condition.

Creating a space for people living with persistent pain

I brought along some yarn and pom-pom makers and created a small cosy corner where people living with persistent pain could sit, relax and chat.

People were welcome to share their experiences if they wanted to, or simply take part in some simple, calming, communal making.

Throughout the morning, people came and sat down to talk.

Some shared how helpful it can be to speak to others who genuinely understand what living with pain is like. Two people compared the ways they manage exercise and were encouraged to discover they used similar strategies.

One woman told us she was managing her condition but still felt exhausted at the end of each day.

Another person mentioned that, as a younger person living with pain, they sometimes didn’t feel believed.

Again and again, the same theme came through: being heard by people who understand matters.

A new community group for people living with long-term pain

As part of Rethinking Our Health, we are starting a fortnightly group for people living with long-term pain.

The group will offer:

• Guidance on self-management, pacing and medication
• Peer support from others with lived experience
• Opportunities to share practical coping strategies
• A space for emotional support and social connection
• Signposting to other support, where helpful

Community-led, clinically backed support

Our touchstone of “community-led, clinically-backed” means the group will initially be led by a pain clinician.

Over time, our aim is that the group will become peer-run or community-run, depending on what participants want, while maintaining a connection with a clinician for light-touch oversight if needed.

The group is open to people in our test site areas who:

• live with long-term pain
• have stable symptoms
• are already engaged in self-management

It will complement the existing Sussex MSK Health pain service, offering a community space alongside clinical support.

to find out more or chat to the team drop Jo a line at collab@hereweare.org.uk

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