Collaboration across Primary Care and Early Intervention in Psychosis services – supporting the health of service users and carers: a qualitative study

Problem

Early Intervention in Psychosis (EIP) services offer up to 3 years’ treatment in the community to people with a first episode of psychosis. Service users (SUs) are then discharged to primary care or Community Mental Health Teams. There is limited research on SU and carer experiences of EIP services, planning discharge and their relationships with primary care.

Approach

Longitudinal qualitative study. Ethics and HRA approvals gained. Semi-structured interviews conducted with SUs (x13 at point of discharge or shortly after discharge from EIP; x9 second interviews after 6months) and carers (x11). Interviews conducted online or by telephone, digitally-recorded and transcribed with consent. Thematic analysis conducted using principles of constant comparison. Patient and public involvement key at all stages, including contributing to data analysis.

Findings

All SUs expressed the desire to take part in decision-making and planning around discharge from EIP services and felt more supported and confident if they were involved in this process. They described feelings of abandonment if they were discharged before they felt ready, particularly when discharged to primary care. SUs and carers expressed concerns about the loss of the relationships formed in EIP services with little or no relationship with primary care. They expressed concern about being discharged to GPs they didn’t know and having to retell their story and felt that support for the transition to primary care was needed. They expressed a wish for continuity of care in general practice following discharge. Carers expressed concern that they may not be able to re-access specialist support for their loved ones if needed, and that SUs may not engage with an unfamiliar primary care professional. They raised concerns about ongoing physical health needs and how these might be managed post-discharge. Carers described taking on a ‘case manager’ role during the discharge process, due to their knowledge of SUs and gaps in support. However, some carers felt that they were not listened to. They felt that a closer relationship with primary care would improve the discharge experience for them and their loved ones.

Consequences

This study highlights the importance of involving SUs and carers in EIP decision-making and planning about discharge from EIP services to primary care, and of listening to and valuing carer expertise. We suggest that collaboration is needed between SUs, carers and primary care while SUs are under EIP services, to support discharge. Primary care should maintain contact with, and offer support to, carers. We suggest that primary care should conduct regular health checks with SUs while they are under EIP so that discharge can be a well-managed transition. Our longitudinal approach has enabled us to explore SU and carer experiences during and after discharge, as well as highlight gaps in care.