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.
Doing things better
Juliette, 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.”
Group and one-to-one peer support
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.
Quality improvement (QI) approach
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, a network engineer from Chatham, joined the group in February, eager to talk openly with others, to share his experience and benefit from advice. Steve, a keen cyclist, is pictured.
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. At the last meeting we spoke about the It’s a Sin series on television and whether we thought this had opened up conversations about HIV or reinforced old stigmas.
“There is still a stigma about the virus and some people don’t tell anyone, including their family and friends. There are pros and cons about telling people or not telling people. One thing about keeping it to yourself though, is that you don’t then have a support network.
“The group has helped me to discuss some of my concerns.”
Steve told his colleagues about his diagnosis soon after returning to work, as they asked where he had been. He felt he needed to explain why he would have to take additional time off, to attend medical appointments. Telling his family was harder and he only felt able to, six months after his diagnosis.
He said: “When I first got my diagnosis my first thought was, am I going to die? I then spent the next four weeks reading from trusted sources, to build my knowledge and to get up-to-date. I wondered, what would my life would be like.
“Since 2018, I have learned a lot and over the years things have developed and changed. For instance, HIV treatment and drugs can result in an undetectable viral load, which also stops HIV transmission. Undetectable = untransmittable, U=U. This is a message that we need to spread, so that people know the facts.
“The good thing about the group is we can share what we have learned and be completely open. This helps those who have just been diagnosed, in particular.”
People can attend the group anonymously if they want to. They can keep their cameras off and log in with a nickname or their initials, if they prefer. They are still able to ask questions and join in the discussion.
Keen to help others, Steve recently volunteered to do a peer mentoring training programme with Positively UK. Once complete, he will be able to offer one-to-one peer support for those who are not keen on meeting or talking in a group setting.
Several people from the group signed up for the course, with support from KCHFT. The trust hopes to launch one-to-one peer support for those with HIV, later in the spring.
Steve said: “The group and the one-to-one peer mentoring are both good ways to help other people.”