Over 6 million people provide informal care in the UK, rising to 9 million by 2037. For schizophrenia alone, informal carers save the public purse £1.24bn per year. Involvement of carers in the treatment of patients with psychosis has been shown as effective by research and recommended by policies but it is not systematically implemented in routine practice. Improved carers’ involvement in treatment is expected to strengthen and mobilise resources in the patients’ networks, improve communication between carers and health professionals, and lead to long term clinical and social gains. Acute inpatient treatment represents a crisis which may facilitate carers’ involvement and the establishment of a strong working alliance between mental health staff, patients and carers.
We reviewed the available evidence on barriers and facilitators for carers’ involvement in mental health care. Based on this research evidence, we developed a provisional intervention to: 1) ensure an early involvement of carers in routine hospital treatment (starting immediately after hospital admission); 2) provide carers and patients with information on treatment and on procedures for confidentiality; 3) develop a shared understanding between patients, carers and professionals about the psychiatric crisis; 4) establish a shared treatment planning. The draft intervention was developed in collaboration with academic experts, clinicians and carers and users representatives. A focus group study gathered the perspectives of patients, carers, frontline clinicians and senior service managers on carers’ involvement in inpatient care. The intervention has been refined based on these findings, and the intervention is now being piloted.
Principal investigators: Professor Stefan Priebe, Queen Mary University of London; Dr Domenico Giacco, Queen Mary University of London; East London NHS Foundation Trust
Start date and duration: January 2014, five years
Partners and collaborators involved: Queen Mary University of London; East London NHS Foundation Trust; Camden and Islington NHS Foundation Trust
Click on the image below to watch a short film introducing this research featuring one of the projects Principal Investigators Dr Domenico Giacco