Welcome back to our blog series for Coproduction Week 2024! This year, the topic is ‘coproduction – what is missing?’. Is it equity of involvement, funding, the will to pursue it, joined-up working or some of the myriad other issues that effect our community. This week we hope to explore these issues and more.
On Monday, Wednesday and Friday we are going to post a blog from one of the MEAM Expert Panel looking at what coproduction has meant to them. On the days between I will post a question for discussion with MEAM Approach network members in our Mighty Networks platform.
Have a great coproduced week,
Ant Pickup (MEAM Involvement and Inclusion Manager)
Effects of engaging as a Lived Experience expert
A blog by Eleanor Hedley, Expert by Experience with MEAM
I started to engage with health and care services to provide my lived experience because I was dissatisfied with the services received by clients in a succession of the services where I worked – criminal justice, homelessness, and community mental health. My professional experience was that services were not adjusted towards people with multiple conditions and adverse experiences in their lives. This resulted in receiving insufficient attention in referral and assessment, care planning, care coordination with multiple agencies, and the models of care were not apt for purpose, producing worse than average outcomes and causing a negative cycle of repeated presentations to multiple services.
That was 10 years ago, when I was becoming ill myself. My background included adverse childhood events and disabilities that were diagnosed later. My sexual orientation and gender identity were fluid, and I became vulnerable to predatory behaviour and addiction. Despite these difficulties I was reasonably successful in my first career, especially after attending rehab in the mid-eighties, and maintaining recovery since then. I re-trained as a counsellor in the nineties, and worked in prison, during which time I began my life test and transition as a trans woman. During the next decade, my career progressed to senior management, while I sustained an increasing burden of care for successive family members.
The pressures on services and my responsibilities grew more onerous, while adjustments for my hearing loss unravelled, and multi-site working across the London region became more difficult. These contributed to exacerbate underlying mental health problems and I left work. However, I sustained my engagement as a volunteer in a public members’ group with access to training opportunities. I chaired the group for two successive terms and participated in a local HealthWatch, leading its community care focus group, and continuing my interest in mental health. These experiences and training opportunities resulted in being able to make a substantial contribution to the development of an Independent Mental Health Network of services users and carers locally in Surrey, which I chaired or co-chaired for several terms. I am still engaged as a representative. These roles opened door to participation in projects and to further training in Quality Improvement Leadership and facilitation.
These commitments and the projects that I engaged in provided me with structure, purpose and meaning. I did not fully appreciate how ill I was until my savings ran out while I was still seeking effective treatment and my partner voiced her concerns about my mental health. Listening to others’ experiences of problems with access to appropriate treatment and how they coped gave me some hope and determination to succeed. I do not intend to provide a detailed account of the difficulties and the deficiencies in health and welfare services that I experienced, but eventually I succeeded in obtaining the treatment I needed and diagnosis of my underlying conditions, which was useful in correcting the welfare system’s maladministration of my claims.
The psychological treatments I received were effective, but I would have been unable to sustain my participation without the community organisations who provided support. I was asked to join their advisory group.
As my understanding of national, regional, and local health and care strategy and practice grew, and as I started to be able to manage my conditions better, I was able to participate in more projects, some as a volunteer and others rewarded.
I now participate in several organisations and projects at various levels. Further training and professional development opportunities support my continued professional and personal development. I continue to maintain my registration as an advanced practitioner in addiction treatment, and as a Chartered Manager. I have also trained as a peer supervisor and peer researcher, which complements my existing professional supervision training.
My lived experience roles have enriched my personal development, enabling me to reflect and grow, become more skilful. My quality of life has improved materially.
I think that from this basis, I have been able to make a substantial contribution to service development, for example locally in Changing Futures, where we are co-producing a strategy to address multiple disadvantage in its wider sense, which has built on interactions with various services and representation on the multi-agency group that coordinates CF services.
I have also made training videos and participated in regional boards. Some of this has been voluntary, and some rewarded, but it has all helped me to be a competent public advisor and engage vigorously to inform services with lived experience, especially to give some support to the charities that helped me while I was ill. I have joined Mary Frances Trust as a member, contribute my time to its advisory group and share with some pride its achievements and ambitions for coproduction.
My hearing loss is now profound but my participation in these activities has grown with the spread of online meetings, and I hope this will continue for so long as I am capable. A bigger hope is that systems that encourage engagement will also see that succession is important in engaging lived experience and developing engagers towards the development of longer-term relationships, in which we receive feedback and contribute to further improvements. There must also be some progression and training in lived experience roles so that for those with the aptitudes there will be avenues to progress as peer supporters, peer workers and peer leaders. In my view we can all contribute, but need to find the right roles, for which some structure is necessary. The resources to achieve this are rarely set off against the longer-term system and social costs of poorer outcomes, untoward incidents, complaints, erosion of quality of life and staff morale.