Kathy Roberts, CEO, Association of Mental Health Providers
With over 8 million people being supported in the community by a mental health charity providing services, it is essential that people who draw on services and their families and carers are central to everything we, as the national voice for the sector, do through the sharing of their experiences. When mental health services are co-produced, those services are more effective for the people using them, as well as their carers. It is premised on the understanding that the people who use services have valuable knowledge, expertise, and insight and rather than “doing to”, we should be “doing with”.
Recognising the importance of lived experience involvement and meaningful coproduction, last year, Association of Mental Health Providers established a Lived Experience Advisory Group (LEAG). The Group is co-chaired by two experts of mental health services in their capacity as a “user of services” and a “carer”, bringing two different perspectives of access, delivery, and receipt of services. The LEAG as a whole brings together people from across the country, from different backgrounds, facing different challenges, as we aim to be inclusive of varying perspectives and experiences and ensure we can be as representative as possible.
The Group is representative of people who share protected characteristics and/or that experience health inequalities, whilst also considering the role of wider social and economic determinants on their differing experiences. These individuals are passionate about and have the capacity to effect change and have an impact on mental health policy and practice.
True and meaningful coproduction is crucial for The Association and the LEAG supports the direction in planning, guiding, and informing our work. At the same time, ensuring their voices are heard validates the experiences people have had and enables them to contribute to effecting change where it is needed.
The Association aims to be open, inclusive, and responsible with all members and ensures that the work of the LEAG informs the work of the organisation and experiences of members are included and represented effectively, and is committed to supporting the LEAG as a collective and its members individually where necessary and as appropriate. We all know the immense benefits of coproduction and engaging with people with lived experience, but we must also consider the potential negative aspects, such as impact on mental health and wellbeing of participation, and what our roles as organisations can be to support or mitigate any risks can be.
As part of this, through a focused project on coproduction over the next year which aims to improve understanding of what true and meaningful coproduction means for people and services, we are keen to explore the potential burdens of co-production and how best to prevent/ protect against these. We know this is an area of coproduction that is rarely discussed, and we want to change that to ensure the mental health and wellbeing of those contributing to research, policy, and service design and delivery, perhaps disproportionately, is considered throughout and not negatively impacted.
Whilst it is of vital importance that people with lived experience continue to engage with our and other organisations’ work, this shouldn’t be at the expense of their own mental health and wellbeing. We believe there is a lot of scope for learning that can be implemented, not just in the mental health but the wider health and social care sectors.
People with lived experience of poor mental health and illness, and of using services provided by mental health charities, can subscribe to The Association’s Lived Experience Network and engage with and contribute to this and other projects. Link here: https://bit.ly/40R82xY https://bit.ly/40R82xY