Brenda and pain management peer support

Brenda is an 83-year-old retired sales manager. Shortly after retirement Brenda had 3 car accidents, each no fault of her own, which left her semidisabled with a chronic condition. As a result, she lives with constant pain. Once her treatment was complete Doctors invited Brenda to join a group to talk about pain. Brenda found that talking about pain really helped her. The physiotherapist at the group suggested Brenda and another person from the group should set up their own group.

Brenda and pain management peer support

Brenda founded of two pain management peer support groups aimed at people who live with chronic pain: ‘Friends through Pain’ in Fareham and ‘Partners through Pain’ in Gosport.

The groups are purely social, not medical. They have a criteria of chronic pain for joining

The original Fareham group started with 3 members and used to meet in Brenda’s house. When numbers rose, they found new premises in a local hall. A GP in Gosport heard about the Fareham group and contacted Brenda to ask if she would set up a similar group in Gosport.

Each member pays an annual subscription to cover the costs of the hall and there is a cap of 30 people in each group to make sure it’s manageable. The groups meet once a month and often invite speakers. Once a month each group will also go out for lunch or a coffee. During the warm months Brenda also arranges group outings. The Gosport group have been to London to watch a show and stay over in a hotel. Members of the groups also do things for other members outside the meetings.

There is no magic cure for chronic pain. We are self-supporting of our illnesses. We all go through good times and bad. We’ve got to help ourselves as there’s no money to help us [through the NHS/government]

Brenda is also part of a local group who reviews NHS research papers around older and disabled people and provides feedback.

What helped?

Brenda and the groups are supported, but not funded, by the Rheumatology Department at the Queen Alexander Hospital in Portsmouth. The groups often have speakers from the health sector including Colin, a matron from the Rheumatology Department. Colin sometimes invites Brenda to health roadshows which allows Brenda to raise awareness of the peer support groups and attract new members. Brenda and the groups also get support from a pain management professor at Southampton Hospital and from local GPs.

Challenges

One of the greatest challenges for Brenda is getting people to join the groups. She attends seminars and lectures and speaks on the radio. Often people are enthusiastic at the venues but don’t end up joining the group, even when Brenda has had a follow up call with them. Brenda has also been on Radio Solent to promote the groups.

It is very, very difficult to recruit. They don’t realise what they can get out of [joining]

When planning trips Brenda faces the challenge of making the arrangements, researching every part of the journey to make sure it’s disabled friendly.

Raising money to cover the cost of running the groups can also be a challenge. Brenda tries to keep member contributions to a minimum so fundraises for the group. The groups have a raffle and hold cake sales. Brenda also applies for grants.

[Applying for grants] is very tough work

Achievements and impact

The fundraising and events have been a success and there has been increased awareness of the groups locally.

Brenda received a nomination to go to Buckingham Palace for the work she’s done which gave her a ‘tremendous lift’. The groups have a huge impact on their members.

Once people get one illness, they often get two, three and four. If you have chronic pain you are likely to be isolated and this can lead to depression. Families and friends don’t see a bandage so often think the person is better but everyone in the group understands and what it’s like. One member told me we had given her a reason to live

And personally, Brenda also enjoys running the groups and has support for herself.

It has made my retirement more interesting!

The future

Brenda has relinquished her duty as chair and as she gets older, she is thinking about other people picking things up. She has recently asked one of the members to sit with her when she applies for funding, so they know how to do it.