School for Social Care Research Improving the evidence base for adult social care practice Involving Carers in Personalised Adult Social Care Practice Wendy Mitchell, Jenni Brooks and Caroline Glendinning SSCR Personalisation Workshop, 12 June 2013

School for Social Care Research Study Aim Explore how English adult social care practice balances the interests of older and disabled people and their carers in personal budget processes. 2

School for Social Care Research Study Structure  Stage 1:  Survey of LA policy and practice in two English regions  Stage 2:  Three LAs  Interviews - carers and personalisation lead officers  Focus groups - frontline staff in older people’s and learning disability teams  Stage 3:  Interviews with pairs of service users (with cognitive or communication impairments) and carers 3

School for Social Care Research Department of Health Guidance (2010)  Service user assessment: covers ‘willingness and ability’ to continue providing support  Separate carer assessment: important, co-ordinated with service user assessment  Resource allocation: care provided by carer taken into account after separate carer assessment 4

School for Social Care Research Department of Health Guidance (2010)  Service user support planning: carer needs taken into account  Managing personal budgets: avoid assumptions about what carer will do  Reviews: consider carer needs during service user review 5

School for Social Care Research Assessment  Carers often present  Carers and service users happy with this  Important role to play (explain needs, remember things)  Asked about willingness and ability to provide support  A ‘mini carers assessment’?  Not all carers remember being asked  Many carers do not recall being asked about own needs 6

School for Social Care Research Carers Assessment Staff:  Carers informed of right to own assessment  Some refused  Unclear how service user and carer assessments linked 7 Carers:  Experiences varied  Many not had carer assessment  Some had refused  Small number could not remember being offered assessment  Confirmed inconsistent practice

School for Social Care Research Allocating Resources: Staff Reports  Help given by carers reduces service user budget  Funding for carers’ breaks included in service user budget  Carers infrequently received other support 8

School for Social Care Research Support Planning: Staff Views  Guidance brief and unclear  Led by staff as part of service user assessment  Before budget is calculated  Carers involved in planning service user support  But carers assessments often after support planning  Unclear how carers’ needs incorporated into support plan  Inconsistent practice and provision of carer support 9

School for Social Care Research Support Planning: Carer and Service User Views  Support planning staff led  Carers involved but happy for staff to lead  Carers had little knowledge of process  Most service users happy with how decisions made  Carers role valued  Limited support for carers themselves in support plans  Few carers had own support plans 10

School for Social Care Research Ongoing Management  Most service users had direct payments  Mainly managed by carers with some support  Carers mostly happy with their role  Carers can access direct payment support service  But no carer-specific advice  Assumption that carer will manage direct payment if service user cannot 11

School for Social Care Research Reviews  Carers usually present in service user reviews, but format inconsistent  Confusion around reviews of carers’ own needs  Managers said service user reviews should include review of carer needs  Few carers had reviews of own needs 12

School for Social Care Research Issues Raised by Research  Is carer inclusion in service user assessments enough?  Are questions about ‘willingness and ability’ adequate to assess carer needs?  Is it appropriate to expect LAs to do separate carer assessments?  What happens if carer needs change independently?  Are carers really treated equally?  The future? Care and Support Bill (2013) 13

School for Social Care Research Further Information SPRU website: bit.ly/perCare This presentation presents independent research commissioned by the NIHR SSCR. The views expressed are those of the authors and not necessarily those of the NIHR SSCR or the DH, NIHR or NHS. 14