Niamh Carroll (Engagement Coordinator) and Anthony O’Connor (Expert by Experience) share their experiences about the development of the IAPT (Improving Access to Phycological Therapies) Expert by Experience group from the first meeting to now. Within this blog, they take it in turn to describe their journey as either a member of staff (Niamh) and as a IMHN representative (Anthony).
When I first attended an Expert by Experience meeting, I had never used zoom before or been on camera before so the very first thing I did was set up a zoom meeting with a friend who I normally only ever talk to on the telephone. He at least had some experience of zoom, but I have to say I was very uncomfortable with the whole thing and not looking forward to a group meeting at all. I needn’t have worried as I shall explain before the end of this piece.
When I came into post getting the Expert By Experience groups back up and running was one of my first tasks. My overall aim and ambition was to create a space in which people felt comfortable to share their experiences, always bearing in mind that (despite how easy people make it look) this is a really difficult thing to do. I was really keen to not put pressure on people and allow them to share as much or as little as they wanted, making sure I listened, responded and valued people’s stories without making things patronising or tokenistic.
My own personal worries about my first meeting were twofold; how much should I say about myself and how long should I talk for. I dropped lucky as the Chair askes each of us for a brief introduction and to say something about ourselves and I didn’t have to go first. As I said, I needn’t have worried because it became apparent immediately that everyone at this meeting was in the same boat as me. Everyone was a little nervous but, equally, everyone was open and honest about who they were and what they had been through. I don’t know if anyone had rehearsed what they had planned to say, I hadn’t, but it all came out as naturally as a normal conversation between people does.
Setting up my first IAPT Expert By Experience was nerve-wracking! Would people like me? Would they trust me to do such important work, and handle these incredibly sensitive experiences? As soon as the meeting started I was put at ease, everyone was receptive, open and honest. I felt immediately welcomed to the group and so impressed by people’s abilities to use their experiences of dealing with their own mental health issues and navigating services into positive ideas about how we can change services going forward. It was evident from that first meeting that the members of the group were keen to work in a really collaborative way, championing each other’s ideas and get a really wide variety of experiences fed back to service providers.
The people I’ve met and subsequently spent some time with (albeit on zoom) are a real cross-section of society and we all come to the meetings with our own experiences and our own ideas. The one common goal we have is to improve the system and we get into some in-depth discussions about how best to go about this. We don’t just come up with solutions, but we also realise that we must have a strategy to get our ideas accepted. One of the problems that face all the Expert by Experience groups is the size and structure of the NHS and its concomitant bureaucracy but our (not so) secret weapon is that each one of us has been through this system and we know the pitfalls. Shared experience is key in this and between us we can agree on ways and means of moving our agenda forward.
One of my main aims when thinking about the organising and running of the IAPT (or any) EBE meeting is wanting to empower people to not only share their experiences but use those to come up with ideas that can be taken to services and applied. I want to move as far away as possible from the use of people with lived experience as a tokenistic act that provides a tick in a box and make professionals feel good. I want to show people that Experts by Experience are experts and can offer ideas and solutions that sit outside of the clinical frameworks and will, if listened to as equals, can eventually make services better for the people who use them. All these ideas and aims have only been backed up and brought to life by the brilliant members of the group who are bursting with so many ideas about how services can work better to meet the needs of people who require mental health support.
One of the things that I’ve been asked to do which I wasn’t expecting was to take part in conferences (on-line because of covid) and, although time-consuming, I’ve enjoyed this part of the brief very much. I’ve attended one held by the Greater Manchester Mental Health Trust and another held by the Psychology Professionals North. Again, I was wary and worried that I would be out of my depth but there proved to be no need for this apprehension. Both these events were by turns illuminating and frustrating as you begin to realise the size and the scope of the issues that so many of us are grappling with. And in fairness to the organiser’s there were opportunities for the Lived Experience voice to be heard and for us to interact with the professionals who provide the mental health services.
So, what have we achieved since I first started? Well, we’ve become a coherent, well-organised unit that has agendas, sticks to them, and takes the issues to the next level. Already we have time and space being allocated to us on committees further up the hierarchy and we are genuinely beginning to be heard. In addition, several of us now take part in other groups that facilitates shared learning and targeting of experience and expertise. For me personally a whole new world has opened up where I feel included, involved and influential. Becoming an Expert by Experience has improved my life for the better helped by the knowledge that what I’m doing will improve the lives of others in the future.
In the four months I have been in post I have seen the group flourish. We have built up a clear set of areas to focus on which include holistic approaches to mental health support, social prescribing, access to technology and innovative ideas around how services can best support people when they are in and waiting for therapy. I am proud of how the group has worked together and been so willing to support each other. Through facilitating this group I have learnt so much and would be keen to welcome new members to our small but effective team!
If this sounds like something you would be interested in get in touch!
Published on November 19, 2021 at 3:59 pm