4Q4: Lived experience review project assistant

In this edition of 4Q4 (Four Questions For), we speak with Peg Digitalis, who worked as a Lived Experience Project Assistant at NdC during the delivery of the recent lived experience review of services provided by Avon and Wiltshire Mental Health Partnership Trust.

01 Why is this project important?

Avon Wiltshire Partnership Trust (AWP) commissioned Neurodiverse Connection to lead a lived experience-led review of their services and to identify actions to improve equity and access within services.

A team of lived experience practitioners from NdC spoke with people from “seldom asked groups” (individuals whose intersecting identities affect how they are represented within health services), as well as with “out-of-area” patients placed in wards far from their home communities. We wanted to find out what affects them, what’s working and what could be made better.

This project matters because many people face similar barriers when trying to access services, and documenting these patterns can help services see what’s going wrong and how to improve. These challenges often disproportionately affect people with intersectional identities, including those in seldom-asked groups. Since out-of-area admissions are used within AWP, it’s also crucial to explore whether experiences differ, for example, whether patients placed out of area have fewer visitors and less contact with their home networks.

02 Why does involvement matter and how has it shaped your work?

“Starting from the beginning and having to explain needs, already puts walls up.”

– A workshop participant

This work wouldn’t exist without involvement. Involvement tells us how to best speak to people and how to present our findings. Feedback was gathered through facilitated peer-led conversations, creative workshops and reflective storytelling, inviting participants to speak openly about their experiences of care and flexing depending on what felt most comfortable.

Like all NdC projects, this work is lived experience led. I know from my experience that it’s much more comfortable talking about my mental health issues with others who have had issues with their mental health too, in the same way that it’s easier for me to talk about Autism with other people who are Autistic.

I have worked as a lived experience practitioner my entire adult life. I started out facilitating groups of frustrated people who wanted to make a difference, and together we created solutions to the problems we kept coming up against. These problems from 13 years ago are often repeated today – issues like falling through the gaps by being deemed too ill for one service and not ill enough for another, crisis lines not responding to crises, and services who aren’t able to listen to people as a whole person. Throughout my work, and within our report, the value of peer support has been very clear.

There is nobody who is better equipped to speak to people who’ve used mental health services than other people who have used services too. Participants repeatedly told us how important it was for them to be able to speak about their experiences, especially to a team of people who “get it” – and even how valuable this peer led approach would be within mental health services themselves. Speaking to someone with similar experiences – as well as similar intersections – builds trust and rapport. This highlights our report theme, “the power of peer support”.

Attendees at the workshops commented that they felt less alone and that they were reassured that it wasn’t just them being rejected from services. Attendees often left having picked up tips from each other on how to look after themselves or ask for support in a more directed way. Our report theme “community groups as lifelines” highlights how important individual community groups are for people who don’t feel seen in services.

03 How might your findings be useful and help shape services?

Given that this piece of work was commissioned by the service provider, AWP, we are reassured that they have the intention of listening to what we have to say. We split our findings into categories, given multiple recommendations, and held an event to look at action planning as a result of our work – all to help solidify the learning.

We hope our findings show services how it feels to try to seek support, such as the frustration experienced retelling your story multiple times, being in a service that doesn’t see your whole identity, and being rejected from services.

Through reading the report and experiences shared, along with the recommendations, we hope that services will look to make changes that humanise and recognise these experiences – making services more accessible, individualised and supportive.

One theme that stands out to me in shaping services is “see me as a unique person” – it highlights the need for services to be flexible and allow space for an individual’s whole identity, resulting in recommendations around offering different forms of intervention and helping people feel held.

04 Where can we find these resources?

We’ve developed a few different outputs – there’s a full report, an accessible summary, and an animation describing what we did. It’s important to us that everyone who participated in the workshops and conversations gets to hear and understand our outcomes.

Click on the button below to find out more: