Louise, Chair of the Early Intervention in Psychosis Lived Experience Reference Group discusses findings from recent engagement report.
The impact of psychosis is experienced by individuals and families, as well as societally. Intervening early is evidenced to improve outcomes, however to date early intervention has only been systematically available at service level within NHS Greater Glasgow and Clyde.
In 2014, I experienced a first episode of psychosis while completing my PhD studies. As a resident of Glasgow, this led to my referral to the local early intervention in psychosis service (“ESTEEM”). I was unpleasantly surprised to discover that such services are not available nationally, and I believe that my recovery was significantly benefited by this service.
This discrepancy began to change a few years ago, when the Scottish Government included Action 26 in its ten-year Mental Health Strategy, 2017 – 2027 (this link will take you away from our website).
Since the inception of the Early Intervention in Psychosis Lived Experience Reference Group, we have been contributing lived experience perspectives to Healthcare Improvement Scotland during their commission relevant to Action 26. This has culminated in our consultation engagement events and associated report Early Intervention in Psychosis- engagement project report (this link will take you away from our website).
This week, the report created by our group and led by Hamish Kidd, of Support in Mind Scotland, is published. We are grateful to everyone who contributed to this, over a difficult winter period in the midst of a pandemic.
From what contributors told us, four key recommendations are made:
- Public awareness of psychosis needs to be raised and the associated stigma addressed. We found a lack of awareness as to psychosis could hinder early intervention, including by healthcare professionals who were seen as gatekeepers.
- Family members, partners and supporters of people with first-episode psychosis need to be identified quickly and worked with pro-actively by services. Family members reported difficulties accessing support when concerns were apparent.
- People who experience first episode psychosis need person-centred care delivered by a well-coordinated partnership of statutory and third sector organisations. Person-centred care included consideration of individual contexts, as well as how recovery is defined by individuals.
- A human rights-based approach should be at the heart of the design, implementation and delivery of services for people with first-episode psychosis. Human rights considerations were also raised, including regarding the use of medication and life choices.
Further details can be found within our report, as well as the report of Healthcare Improvement Scotland (this link will take you away from our website).
At this juncture, we are at a crossroads regarding the direction and appearance of early intervention in psychosis in Scotland.
We are calling on those who are employed to design, develop, and deliver services to centre these recommendations – and by doing so, recognising accrued lived experiences and learning – and place them at the heart of modes of working going forwards.
By working together and engaging with lived experience perspectives, we hope better outcomes can be achieved for individuals and families with experience of psychosis.
This Opinion is commissioned by the ALLIANCE’s Academy programme which explores key themes related to the Five Provocations for the Future of Health and Social Care. The Academy participated in this group and was involved in the design and delivery of the engagement activities and drafting of the final recommendations.