People who are HIV positive are now receiving peer support – thanks to a new patient-led group.
The Talking Together group was set up after people using HIV services at Kent Community Health NHS Foundation Trust (KCHFT) were asked through virtual patient focus groups and phone interviews, if there was anything they would like to change or improve.
When the feedback was analysed, there was a common thread in the responses, with many clients saying staff at the sexual health clinics were the only people who knew about their HIV status.
Clients said they often felt alone and isolated and unable to talk to anyone else about their condition. Those involved in the co-design group decided that the solution was for them to work with the Sexual Health Service to set up a patient-led peer support group.
Juliette Wales, a project manager in public health at KCHFT, said: “Our sexual health service is always looking at what it does and seeing if things could be done in better or different ways.
“From the feedback we received, it was apparent that people who are HIV positive wanted some emotional support. They said that while our services looked after their physical health very well, there was not so much to help them emotionally.
“Most said that despite changing attitudes, they still feel stigmatised by society and some said staff at our clinics were the only people who knew they were HIV positive; they hadn’t felt able to tell anyone else.
“I spoke on the phone with people who use our HIV services and as we chatted, we thought it might be helpful to set up a peer support group. KCHFT facilitates this, but we don’t run it, the members do this. They decide how it goes.
“The virtual meetings are a space where they can talk openly about issues. They talk about how HIV has affected their lives, dating, self-esteem and share experiences that they’ve had post diagnosis.
“It’s important for them to know they are not alone.”
Some people, however, do not feel comfortable in a group setting and for this reason members of the group are also setting up one-to-one peer support.
Juliette said: “The group is very new. Most people are willing to share their names and have their cameras on, but not all – and that is fine. It’s a big step and we know it won’t be for everyone, so we are looking at setting up one-to-one peer support too. We also need to think about people who could be digitally excluded.”
KCHFT’s Sexual Health Service refers people to the group, if they think they might benefit. The group sessions have been running since September last year.
Before COVID-19, Juliette had completed the first two days of a five-day course run by KCHFT, to become a quality, service improvement and redesign (QSIR) practitioner. The course is for clinical and non-clinical staff interested in looking at how services are run and how things could be done better. Juliette is planning to use some of the skills she learned to help make a success of the new group.
Juliette is to work with one of the trust’s quality improvement (QI) advisors, for advice on the project following an improvement framework. She has already been using some of the tried and tested QI tools, including plan, do, study, act (PDSA).
The peer support group provides a safe place for people who are HIV positive, to discuss concerns and the different aspects of living with HIV. Steve Bamford, 47, (pictured) joined the group in February.
Steve said: “There is nothing else like this in Kent, where I can sit down and talk with people with HIV. I talk about it openly anyway, but for others, it’s the first time they’ve been able to do so.
“We share concerns, thoughts and ideas and can offer each other practical and emotional support. For example, about doing something better, leading a healthier lifestyle, or we might talk about medication."
With support from KCHFT and Positively UK, Steve is now training to be a peer mentor, to offer one-to-one support for those who are not keen to meet in a group.