Service user and Carer perspective on Treatment for Co-Occurring Mental Health and Substance Use Problems (RECO Study)

Background

People with severe mental illness and co-occurring substance use experience poor outcome including suicide, violence, relapses and use of crisis services due to a lack of an integrated and coordinated approach. Despite these concerns, there is limited evidence as to what works for this population. The aim of the RECO study was to undertake a realist evaluation of service models using case studies in order to identify programme theories of what works under what contexts for this population. There is limited evidence from the lived experience about accessing services when someone experiences both severe mental illness and substance use issues, therefore this presentation will focus specifically on the data from service users and carers.

Methods

The RECO study was undertaken in 6 case study sites comprising of Mental health, substance use and related services in the UK. The participants recruited consisted of people with severe mental illness and co-occurring substance use, and carers. The data was collected by individual interviews using online video-calls due to the COVID 19 restrictions at the time. Some of the data was collected face to face once restrictions were relaxed. The transcripts were coded and analysed into themes using the Warwick Patient Experience Framework.

Results

A total of 24 service users and 14 carers were recruited from 5 case study areas in UK (the RECO study). Participants reported that they required integrated care for both substance use and mental health, but often found that their care was fragmented. The presence of a substance use problem was reported to be a significant barrier to accessing mental health care (and vice versa) leading to accessing emergency services at times of crisis. Participants described having a “safety net” when health professionals were able to demonstrate empathy and compassionte care as well as regularly and proactively communicating with them and other service providers to prevent them reaching crisis point. Many participants struggled to feel psychologically safe enough to talk about their needs to health professionals and this was due to a combination of factors including their mental state at the time, history of trauma, prior negative experiences of care. Carers and service users felt they were stigmatised particularly around the co-occurring substance use. Participants described positive practice they had experienced which mirrored the principles of "trauma informed care".

Conclusions 

People with COSMHAD desired integrated and trauma informed care, and implementation of integrated mental health care in the UK should be directly informed by their experiences. People with COSMHAD experience stigma at the individual, health provider and health system levels and this barrier must be urgently addressed at the political level through policy development and service design.