When I was first approached by my SAMH support worker about putting my name forward for the Pilotlight project, I was surprised, scared and a little bit honoured. Me?? Put my name forward, to be part of a co-design team looking at SDS for people with mental health problems?? Wow!! Could I do it? SHOULD I do it? And how would I cope, working with a room full of strangers - highly qualified professionals and people like me? I took a deep breath and went for it. This is my story...
I was first diagnosed with depression and anxiety when I was in my late teens, though I suspect I had been suffering for a few years prior to that. My depressive episodes seem to roughly follow an 18-month cycle, so when Pilotlight came round, I had nearly 20 years under my belt. At that time, I was a single Mum to 3 girls, having recently separated from my husband, and was working my way through my toughest and longest depressive episode - daily self harm, anxiety, suicidal ideation and a stay in the psychiatric ward of the local hospital. But I was getting better, thanks to excellent support from psychiatric professionals; SAMH and my wonderful parents.
My first meeting with Kate and Judith was all the inspiration and boost that I needed to see that Pilotlight was a great project to be involved in. I couldn't wait to get started though the first workshop was terrifying! Walking into a room full of people I'd never met, and aiming to take part in something that I had no knowledge of was almost enough to make me turn on my heel and flee. But I didn't. Kate and Judith are great facilitators and have a wonderful knack of putting everyone at ease. It was enlightening to meet people from different backgrounds, with different histories and different mental health issues, but all with a common goal and, quite often, very similar experiences.
We also had time to meet the service providers involved in the project and took the opportunity to try and put everyone on the same level. Co-design is all about equality - every person is as valuable as the next; ALL opinions are valid and no-one is better than anyone else. It was hard to get this across initially, but with time, effort and patience, we got there.
Some of the group struggled to get their heads round what SDS is, and what it means for those with mental health issues. Through discussion we found that it seemed straightforward enough for people with physical disabilities, but mental health was a whole different ball game. Could SDS actually work for those of us suffering from a myriad of mental health problems? Mental health is so complex, and has so many different faces. But working as a co-design team allowed us to explore these complexities. The service providers were able to explain to everyone how their services were so vital to the care and well being of clients. And we were able to express openly and honestly what it's like living with mental health.
I was in awe of our little group. Hearing the experiences of those around me reinforced the feeling of 'you're not alone'. It was the first opportunity I'd had to share my thoughts of my own issues within a group setting with others who'd gone though similar difficulties. And it was enlightening to hear about those issues and difficulties from 'the other side' - from those professionals who provide the care that is so invaluable to us. We supported each other. We listened and talked. We laughed - a lot!! - and sometimes we felt like crying. We were able to empathise with each other and showed that, service provider and service user COULD work alongside one another, with a common purpose. We're all aiming for the same outcome. We're all on the same side. Co-design does that!
Having the opportunity to be part of a co-design team has opened my eyes to a new way of thinking. I wish more co-design existed, in so many areas of daily life. It's so important, I think, to allow service users the opportunity to have their say in what works for them and what doesn't. Big business could learn vital knowledge by tapping into co-design as a way forward.
And me? I'm so glad I've had the opportunity to be part of Pilotlight. My mental health issues have gradually decreased as time has gone on and I'm feeling more confident about my future than I have in a long time. I hope that SDS for those with mental health issues becomes reality. To have been part of something so important, so inspiring and so potentially helpful is something I'll always be proud of.