Co-Production Week 2023: Designing a community listening project alongside service users

To celebrate Co-Production Week 2023, today we’re shining a light on how our first community listening project was co-produced earlier this year (story provided by Natalie Campbell, Senior Co-Production & Innovation Manager at Rethink Mental Illness for the Alliance).

For the development of our community listening project, the Alliance worked with five people with lived experience of mental health problems — ‘experts by experience’ — from the start. They guided the project to test a new approach on gathering lived experience information to influence mental health services in Devon.

The idea was that lived experience information and insights can be included in solutions for ‘knotty issues’, particularly about inequalities of access, experience, and outcomes. The five experts by experience were equal partners in the project team and were involved across all stages of the project. They will continue to be involved as we and NHS partners respond to the insights that came out of the project, about opportunities for lived experience to influence going forward.

The co-produced stages of the project were as follows:

1. Developing a lived experience steering group to co-produce the project

2. Developing ways of collecting information and stories from people in the community with lived experience, considering aspects such as equality, diversity, and practicalities of sharing information safely

3. Developing an information session/workshop regarding the project for community groups

4. Building relationships with those groups, including developing a data safety Terms of Use document

5. Supporting community listening activity

6. A co-analysis process of the themes emerging from the information gathered

7. Co-producing insights, potential considerations, and clarification questions as needed

Here is the co-produced process for listening and understanding people’s experience-based views and ideas:

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We had 180 people input to the pilot by sharing their views and ideas based on their lived experiences. The team of different stakeholders, which included experts by experience, Alliance partners and some of the community listeners, came together to make sense of the themes emerging from the information gathered, and work on writing some insights based on the themes. Below is a list of the key insights they co-analysed:

Wider overarching insights:

• People would like more choice and more holistic options

• People would like a more person-centred approach

• Supervised, meaningful, earlier interventions are needed — waiting lists are too long

• Greater VCSE integration with statutory and strategic functions is needed

• Shared assessment process in the community

• Need for greater understanding of micro-community and place-based offers

Specific insights:

• Gaps in services between mental health and community

• People would like more peer support options

• People don’t think there’s enough counselling available as an option

• People would like group-facilitated support for both pre- and post-intervention services

• Trauma, suicide prevention, and self-harm support is not easily available

There has been a lot of learning from the pilot — a huge thank you to everyone who has been involved so far. We are increasing the understanding about need and issues for attention, from both people with lived and caring experience, and community connectors. Other benefits have included developing relationships with grassroots community organisations and increased understanding about community mental health plans, with a starting point for ongoing sharing and understanding.