Wendy Mitchell, Jenni Brooks and Caroline Glendinning

1. Balancing Service User and Carer Needs and Interests in Personalisation: Policy, Practice and Experiences Wendy Mitchell, Jenni Brooks and Caroline Glendinning ESRC Carers Workshop - York University (11 February 2013)

2. Study Aims • Describe local policy/practices in English adult social care - carers role in assessment, support planning and ongoing management • Examine how far policies/practice balance needs of disabled people and carers - especially those with cognitive/communication impairments (CCIs) • Explore views of disabled people and carers on role they want carers to play

3. Study Structure • Stage 1: • Survey of LAs policy/practice in two English regions • Stage 2: • Three LAs selected • Interviews - carers and personalisation lead officers • Focus groups - frontline staff in older people’s and learning disability teams • Stage 3: • Interviews with disabled people with CCIs and carers

4. Department of Health Guidance (2010) • SU Assessment: carers ‘willingness and ability’ to continue providing support • Carer Assessment: carer assessment important, co-ordinated with SU assessment • Resource Allocation: care provided by carer taken into account but after carer assessment • SU Support Planning: carer needs taken into account • Managing Personal Budgets: avoid carer assumptions • Reviews: consider carer needs during SU review

5. Results: Staff Overview • Practice differed across authorities, between teams and within teams • Authority guidance on carers’ involvement in SU assessments - stage where carers most involved • SU with CCIs - recognised more reliant on carers for information • Practice differences between OP and LD teams

6. Results: Carer and Service User Overview • Carers commonly involved in SU assessment • Carers rarely had separate assessment of own • Majority of SUs happy with support carers provide during personalisation processes • Very little conflict between carers and SUs • Carer and SU talking about support helped

7. Assessment – Staff Accounts • SU Assessments: carers present common practice • Duty to ask carers about ‘willingness and ability’ to provide support confirmed by staff • Is this ‘mini-carers assessment’? • Carer Assessments: carers informed of right to carer assessments • Inconsistent practice around how and when carer assessments conducted • Unclear how SU and carer assessments linked

8. Carers Involvement in Service User Assessments • Carers present during assessment and wanted to be involved • Carers felt had important role to play • Most asked if ‘willing and able’ to continue caring • Many could not remember being asked about own needs

9. Service User Views on Carers Role in Assessments • SUs wanted carers involved in their assessment • SUs happy talking to social worker with carer present • SUs felt carers did most of talking - happy with this

10. Carer Assessments: Carer Reports • Carer experiences of carer assessments varied • Some carers had had carer assessments • Some had refused carer assessment • Small number could not remember being offered assessment • Confirmed inconsistent staff practice

11. Allocating Resources: Staff Reports • SU budget reduced for help given by carers • Carer funding for break from caring included in SU budget • Short-breaks for SU • Carers infrequently received other resources

12. Support Planning and Carer Support: Staff Views • Authority support planning guidance brief and unclear • Support planning part of SU assessment and staff led • Done before SUs indicative budget calculated • Carers consulted about SUs support • But carers assessments often after support planning • Staff accounts unclear how carers’ needs incorporated into support plan • Unclear what extra support could be offered to carers

13. Support Planning and Carer Support: Carer and Service User Views • Little carer knowledge of SU support planning process or written plans • Confirmed support planning staff led • But carers felt involved in SU support discussions and happy staff led • Most SUs happy how decisions made as carer role valued • Limited carer support - focused on SU short breaks, carers wider needs infrequently discussed

14. Ongoing Management: Staff, Carer and Service User Views • Staff reported authority provided direct payment support to carers • Some staff assumptions - carers managing SU direct payment if SU unable • Most SU had direct payments • Mainly managed by carers with some support • Limited carer dissatisfaction with managing role

15. Reviews: Staff, Carer and Service User Views • Managers - SU review should include review of carer needs • Staff confirmed but format inconsistent • Staff confusion/inconsistency around separate reviews of carer needs • Carer confusion over assessment/review differences

16. Key Findings • Carers, SU and staff value carer involvement • SU Assessment - carers present, asked about caring • Separate carer assessments infrequently conducted • Carers help reduces SU budget • But unclear how carers wishes included • Carers involved in SU support discussions • But information about carers own needs not integrated • Carer support unclear, provision carers received limited • Confusion and inconsistent practice around reviews

17. Issues Raised by Research • Practice lacks clarity and consistency, raises issues: • Is carer inclusion in SU assessments enough? • Are questions about carers ‘willingness and ability’ adequate to assess carer needs? • Is it appropriate to expect local authorities to do separate carer assessments? • If carer needs only assessed in SU assessments, what happens when carer needs change independently to SU? • Are carers really treated equally?

18. Further Information • SPRU website: • http://php.york.ac.uk/inst/spru/research/summs/personalisationC.php 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.