Personal budgets for older people: a summary of progress and issues John Woolham

1. Personal budgets for older people: a summary of progress and issues John Woolham

2. Structure • Objectives and methods • Progress to date • Issues • Emerging findings (focusing on early postal survey results)

3. 1. Objectives • Are personal budgets always the best way of delivering personalised social care services to older people (75+) and if not, might alternative ways of delivering care & support work better for some? • Are problems in use of personal budgets by older people recognised by CASSRs • How CASSRs are addressing identified problems / obstacles to addressing these • What criteria do CASSRs use to assess success in achieving personalised care for older people • Explore with older people, unpaid carers and CASSR staff • Experiences of personal budgets and personalisation • Views of pros and cons of personal budget ownership • Perceptions as to whether personal budgets have led to more personalisation/better outcomes

4. 1. Methods Mixed method approach • Single telephone interview with head of personalisation or equivalent in 36 CASSRs (extended subsequently to 76) Postal survey questionnaires to • 250 Direct Payment users and 250 ‘managed personal budget’ users in three host CASSRs (1500 in total) • 250 Carers of DP user and 250 ‘managed personal budget’ users in same three CASSRs (1500 total) • Self selected follow up interviews with 8 DP users and 8 carers of DP users in each of the three sites • Interviews with 8 operational staff responsible for implementing DP/PB in the three host sites.

5. 2. Where we’ve got to • Interviews with senior managers now completed and transcribed • Quantitative data collection underway in three host sites • 7 service user interviews, 8 carer interviews and 8 staff interviews completed • Aim is for data collection to be completed by mid August.

6. 3. Issues (a) approvals • University • Precursor to SCREC • SCREC • Straightforward though time consuming • ADASS • Approval sought after SCREC favourable opinion. Approval not obtained, then obtained. • CASSR • Many CASSRs wanted their REC paperwork completed • Host authorities were mostly content to accept the currency of the SCREC review.

7. 3. Issues (b) finding host sites • Most CASSRs happy to agree to the single interview (a handful were not as ADASS approval not obtained until later) • Subsequently 20+ CASSRs were approached formally by letter and invited to host the study • Many did not bother to reply • One Director agreed but a member of his SMT had other ideas... • One site insisted on a further ethics application but then senior managers rejected the request • A number of CASSRs felt they weren’t appropriate sites: self funding. • Resource issues a key problem

8. 3. Issues (c) working with local authorities • Telephone interviews with senior staff: • Not always easy to identify the right person • Not always easy to get them to the ‘phone • Operational issues sometimes intrude (interviews a & b)! • Postal surveys • Accurate identification of eligible people (e.g. capacity to take part) • Accuracy of local authority dataset (deaths, in care, in hospital) • Control over the response (one CASSR) • Ability to sort data for mail merge (one CASSR) • Time pressures (all CASSRs) • Other surveys (DH user experience, statutory returns, in house customer evaluations etc) • Size of samples for the different groups • Less than 250 DP users • Low numbers of carers identifiable

9. 3. Issues (c) working with local authorities Poor response rates to postal surveys • Overall response rate 33% in one local authority following 1 mail shot and 2 reminders. Response rates in other authorities to date not encouraging. Reasons? • Many with a ‘managed budget’ did not know that this was the arrangement • Most respondents needed help (from a carer) to give their answers: this may or may not affect response rates to carers survey (data coming in at the time of this presentation) • Consultation fatigue may be becoming an increasing issue: fewer service users nationally, much more research (and research like) activity, locally and nationally. • Wanted to seek additional sites to increase overall size of the dataset: approached three additional CASSRs who were initially interested - now have no time left.

10. 4. Emerging findings Most quantitative data from 2 host sites now entered into SPSS. • Emerging findings suggest Direct Payment users have better outcomes than Managed Personal Budget users on range of variables. Findings reported below are statistically significant. • Compared with managed budget users, DP users • Were more likely to say they had enough information to enable them to choose care and support that was right for them • Were much more likely to say they felt in control of what paid carers did • Were more likely to feel paid carers listened and learned from what they said to them • Were more likely to feel they had enough choice about services and support to buy • Found it easier to make changes to the timing of services, and tasks carried out • Were more likely to feel they could choose when they ate and went to bed

11. 4. Emerging findings Some findings to date have been more ambiguous. For example, compared to managed budget users, DP users: • Were a little less likely to feel the support plan was based on their ideas and wishes. (Isn’t a DP supposed to confer more control?) • Were much more likely to say it was difficult to get information about local services to put into the support plan (could be that the MB group had less need for information?) • Were more likely to say it had been easy to contact the right person to sort out any problems with the budget (but managed budget users were more likely to feel they’d not had any problems) • Were more likely to feel it was easy to keep up to date with paperwork (but were more likely to say there was someone to help them with this) There were also still quite a few DP users who said they couldn’t exercise full control over when basic self care activities happened. (If people can’t bathe, eat and got to bed what might this mean for other areas of the person’s life?)

12. 4. Emerging findings Cautions • Many managed budget users didn’t know their budget was being managed • A third of DP users didn’t know how much money was in their budget • Most people taking part in the survey had help from others in completing the survey: in 30% of cases (both groups) someone else entirely answered the questions. • Some evidence that the ‘managed budget’ group are more frail and dependent • DP users were more likely to decide to have a DP because they weren’t happy with previous services or support • Many from both groups felt they didn’t have a choice about not having a PB • Not all data is in yet • Data presented above are subjective responses to individual self-report questions: scales: (ASCOT, Perceived Stress and EQ5D) not yet analysed and may be a better guide to outcomes for the two groups.