By being involved I can make a difference

This is the experience of John, a man living with HIV in Scotland, told in his own words. John talks about his experiences being involved in services for people with HIV – as a peer supporter and as part of a patient forum for the HIV clinic he uses.

This story is only one of many that has been shared with us and it does not represent the experiences of all people living with HIV. If you have a different story, we'd like to hear it - please do get in touch.

-

Peer support helped – I knew I wasn’t alone

“I decided I wanted to give peer support after the first time I got peer support myself. He was the first person I’d knowingly met who had HIV, and it was about a month after I was diagnosed. Even though I’d already been told it, having someone who’d been living with HIV long-term tell you that no, you were not going to die, and aye, you could have a functioning life, it was immense.

“Speaking to a peer supporter helps you actually believe what the clinicians are saying, and explains things they don’t go into properly because doctors just talk about clinical this, that and the next thing.

“I remember the first time I met my peer supporter – that it was a stranger didn’t matter, I was really nervous but it gave me a sort of hope. It was just so reassuring to know you weren’t alone. I listened to his story about what he had been through and found myself feeling quite fortunate that I wasn’t diagnosed 20 years earlier like he had been, before there was treatment.

“It restored my faith in humanity. I was struck by the kindness that this stranger had shown me. I thought it was a very altruistic thing to do. That's why I decided there and then that it would be something I would want to do in the future when I was ready. It took a very long time, about six years, before I felt I was ready, strong enough, and able to give properly to this vital service. It’s not something, I think, that should be entered into lightly.

Setting up the patient forum: we wanted to change things

“A while later some likeminded patients from the HIV clinic I use decided to set up a patient forum – we were interested in what was happening to us and how the service was delivered. We wanted to have an influence on it. So I’ve been part of it since 2013 when it was started. Previously, I was always in the union and became a shop steward, so involvement was ideal for me. We want to change things, we want to have an influence in what is happening.

“It has empowered me more, making me feel that I am still able to contribute, make my voice heard, and make a difference for people. You are involved with people as well, people in the same boat as yourself, which makes a big difference because you are comfortable there and you know you are all the same. I am very guarded, nobody knows about me, and I prefer to keep it that way, so it is a safe environment. We do have a laugh, it is quite fun, but I think we achieve quite a lot as well. I just wish more would get involved.

“To me it is vital, I am shocked that other areas don’t have anything like it. People have no influence on their clinic, or how services are delivered, without one.

Together, we are achieving things

“We are achieving things. The staff have come to us with information sheets they want to give to patients – on integrated care pathways and other things. The jargon wasn’t patient friendly at all, and you needed to be a doctor to be able to understand it. So we sent them away and they rewrote it in layman’s terms. So that was something we did that we know made a difference.

“I think our biggest success was forcing the health board to tackle stigma in their staff. It was the idea of one of our forum members. It’s soul destroying when you come across stigma from a health worker. So we demanded it and it happened – they did a survey of staff attitudes that confirmed there was a problem. They agreed they needed to provide training, and a member of our group said ‘you need to do training differently then’ because people just go in and they sit and get half a day’s training and it goes in one ear and out of another - you tick a box and nothing changes. That’s where we came up with drama as a mode of training. It grew from there. About 20 patients went and spoke to actors, directors, and the writer, and we shared our experiences. They took notes from that and came up with four drama pieces, based on actual events. The board are sharing these pieces now with staff, and doing a big poster campaign.

“The health board listened to us on this and took action. I don’t often praise them but they deserve it. And now there’s this campaign on the back of it.

“Now we want to do a patient induction and advocacy service too – helping people with things like their first visit to the consultant, which can be terrifying. Doctors don’t often explain things, and ask you loads of questions instead of answering yours. We want to help people prepare.

The ultimate goal is to improve things for everybody

"I enjoy being involved, I get a lot out of it. It's good for my soul, it makes me happy, because I like bettering things for people. We don’t always agree as a group, far from it – but we always come to a consensus in the end.

“We can all see it's changing things. There’s got to be achievable goals. The main thing is to get the health board to listen to patients, which they’re not always that keen on, funnily enough, given that’s who they work for. But aye, it’s good for my soul. I’d really recommend this to other people.

"The ultimate goal is to achieve a better lot for patients. To improve things for everybody, so we’ve all got a better experience, a better say in what happens to us and control over our lives. Getting involved does give you control. It’s a win-win situation, it’s got to be. I think other patients throughout Scotland are really missing out through not having something like this, where they can have a say in services that are delivered."

-

HIV Scotland is collecting the experiences and stories - like this one - of people living with and at risk of HIV from across Scotland, to inform our work and to raise awareness about the reality of life with HIV.

We take confidentiality seriously and do not share any information without express permission from the individuals we talk to.

If you would like to share your story, or if you have questions about living with HIV, please do contact us.