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Best practice when service users do not consent to sharing information with carers

National multimethod study

Health Services Research Department, Institute of Psychiatry, King’s College London

VANESSA PINFOLD, PhD

Rethink severe mental illness, Kingston-upon-Thames

JOAN RAPAPORT, PhD

Social Care Workforce Research Unit, King’s College London

SOPHIE BELLRINGER, BSc and SUBE BANERJEE, PhD

Health Services Research Department

ELIZABETH KUIPERS, PhD

Department of Psychology

PETER HUXLEY, PhD

Health Services Research Department, Institute of Psychiatry, King’s College London, London, UK

Correspondence: Dr Mike Slade, Health Services Research Department, Box PO29, Institute of Psychiatry, King’s College London, London SE5 8AF, UK. Tel: +44 (0)20 7848 0795; fax: +44 (0)20 7277 1462; email: m.slade{at}iop.kcl.ac.uk

Declaration of interest None.

Background Service users with psychosis may notconsentto sharing information with carers. However, carers require access to relevant information to support them in their role.

Aims To inform clinical practice when service users withhold consent to share information with their carer.

Method Study data were derived from a synthesis of policy review (n=91), national survey (n=595) and individual interviews (n=24). Results Key principles to guide information-sharing practices were identified. Service users highlighted confidentiality being guaranteed by consent processes. Carers suggested a ‘culture shift’ was required, with professionals trained to work with carers. Professionals emphasised mental capacity, professional judgement and the context of care. A best practice framework is proposed.

Conclusions An important distinction is between general information, which can always be shared without consent, and personal information, which is new to the carer and where consent needs to be considered. Clinical judgement is central to balancing conflicting ethical imperatives in this area.

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