Positive and Inclusive? Effective ways for professionals to involve carers in information sharing Report to the National Co-ordinating Centre for NHS Service Delivery and Organisation R & D (NCCSDO) Autumn 2004 prepared by Vanessa Pinfold, Paul Farmer Rethink severe mental illness Joan Rapaport, Sophie Bellringer, Peter Huxley, Joanna Murray, Sube Banerjee, Mike Slade, Elizabeth Kuipers, Dinesh Bhugra, Samantha Waitere Institute of Psychiatry Address for correspondence Dr Vanessa Pinfold Rethink severe mental illness 28 Castle Street Kingston-Upon-Thames Surrey KT1 1SS E-mail:
[email protected] Telephone: 020 8547 9217 © NCCSDO 2005 1 Positive and Inclusive? Effective ways for professionals to involve carers in information sharing Contents Acknowledgements 4 Preface 5 Executive Summary Introduction 8 Literature and policy review 8 Methods 9 Results 9 Recommendations 11 The Report Section 1 Introduction 12 1.1 Contemporary developments 13 1.2 Carer context 14 1.3 Summary 15 Section 2 Policy and literature review 16 2.1 Frameworks governing confidentiality and information sharing 16 2.2 Legislation and policy 19 2.3 International policy and law 24 2.4 Good practice approaches 25 2.5 Summary 31 Section 3 Method 33 3.1 Aims 33 3.2 Study management 33 3.3 Data collection and analysis 34 3.4 Summary 47 Section 4 Policy analysis 48 4.1 Policies received 49 4.2 Supplemental information 49 4.3 Meeting carer needs: policy statements 51 4.4 Good policy models 54 4.5 Summary 58 Section 5 Survey 60 5.1 Introduction 60 5.2 Good practice views