Impact of Personalisation on Unpaid Carers: Are Unpaid Carers of Older People Who Use Direct Payments Benefiting from Mo

1. The impact of personalisation on unpaid carers: are unpaid carers of older people who use direct payments benefiting from more personalised services? John Woolham, Guy Daly, Nicole Steils & Katrina Ritters

2. Background • The Indispensability of unpaid carers to adult social care • 6.5 m. carers • £199b. saving • 1.4 m provide 50+ hrs p.w. • Recognition in the Care Act • Studies have shown an association between care giving and exhaustion, anxiety and stress • Fewer studies have explored the impact of PB/DP on carers and findings are mixed • Less attention still paid to carers of older people • Largest group of ASC users • Older people don’t do as well with PBs/DPs

3. Objectives and methods Objectives • To explore the impact of PBs/DPs on the lives of unpaid carers of older people • To find out if carers of older DP users are more or less likely to be experiencing high levels of stress compared to those with a managed personal budget (MPB) Methods Mixed method design • Postal survey of 1500 unpaid carers of older people • Three local authority sites • 31 follow-up interviews with carers

4. Methods • Data collection was not straightforward. • Not all ASCDs were able to identify the requested sample numbers • No demographic data could be obtained from two sites to assess response bias • The relatively high proportion of exclusions reflected problems of reliability of ASCD databases

5. Findings (a) composition of the two samples Carers of DP users were: • younger, • more likely to be female, • Less likely to be the cared for person’s spouse or partner, • less likely to live with the person they cared for.

6. Findings (b) Initial feelings about personal budgets • Carers from both groups were keen for the person they cared for to have a PB, but highest amongst DP users • Many carers of MPB users said they didn’t know about PBs until being invited to take part in the research, or weren’t given any information about them. • A range of other views were expressed Table 3. Which of the following best describes your feelings when you were told about PBs? (n=258, χ2=13.14, df=3, p=0.004). ‘It started to get quite complex because we did actually have a carer we wanted to employ but you have the difficulty of managing that …it’s a difficulty for people because you’ve got employment issues, you got holidays, you’ve got sickness, you’ve got training. They’ve got all sorts of different things that even me, running the organisation that I do…wouldn’t have the time to do that’ ‘I didn’t know anything about personal budgets. Social Services did and assessment and carers to assist in getting my wife showered and dressed at 7.00am and ready for bed at 19.00pm. They pay for those carers, We don’t know how much that costs. It has never been mentioned’ ‘I felt social services were more qualified to handle the budget and steer me in the right direction’

7. Findings (c) Needs for information I: ‘So when you started making enquiries was the information that you got fairly easy to understand? P: I think so, for me, yes, but again elderly people and bearing in mind my mum’s 88, they wouldn’t have a chance. I: So the information you got wasn’t really designed for older people? P: There’s too much of it and too many forms and that’. They’ve got an emergency number and you ring that and nobody answers it. So, I am a little bit unhappy with the way they work. Well, they do answer it sometimes - it depends who’s on call. But then I’ve been told, “it’s for staff only that number,” and then I’ve been told, “no, it’s not,” then I’ve been told, “don’t ring it after 11 o’clock,” and “what can we do anyway?” Well, if something bad is happening, I need to know there’s somebody there - even if you just talk to me’. ‘They were very circumspect about it….they can’t actually say it out loud but the social work assistant that came to do the assessment, she said something like ‘Oh, right, OK (namec cvare agency) are like Marks and Spencer whereas these other care agencies are like Sainsbury’s or something’ • Carers expressed concern about the quality of information offered about PBs/DPs • It was too complex to be understood by those they cared for • There was sometimes a lack of transparency in what information was provided which restricted choice • In other cases care professionals were almost certainly exercising discretion about what information was shared based on the capacity of the older person and the circumstances of the carer • Sometimes the failure to exercise discretion created anomalies • Getting information about the best care agency to meet the needs of the person cared for was frequently very difficult • Some information was unreliable. P: There were two people that came to see us, two people together who came to talk to us and they actually said, ‘oh no you wouldn’t want to be doing this yourself because it would be too difficult.’ Since she’s been here nobody has ever said we could have direct payment organised, no one has actually ever said that. I: That’s interesting; I guess there are pros and cons. P: Yes. I: You probably know - direct payments can give more flexibility and freedom but there’s also more responsibility entailed. P: Yeah, I feel totally overwhelmed. I have a 14 year old granddaughter who lives with me and was 10 when [name] moved in, my husband had radio-chemotherapy last year, so I’ve got a lot of responsibilities and I couldn’t actually face any more.

8. Findings (d) Involvement in support planning ‘You’ve got to keep on top of it all the time, and then when you come to pay the carers at the end of the month you ring through the hours and then they send you timesheets; the tax is paid by somebody else and that comes through, so you’ve got to keep on top of it’. ‘No, it never worked smoothly. It still doesn’t work smoothly. There’s always problems with it because the amount of care she needed changed and the type of care she needed changed over time anway. The care agency we use – it’s quite difficult…you’re always having to change things. She can’t have her tea at five o’clock. It has to be half past four. They were doing pop- ins at night which was at half past eight at night which was way too early, but they didn’t have anyone who could do later. There’s always teething problems – well, it’s not teething problems. There’s always problems with it to be honest’. ‘I think I’m more worried, now, with a personal budget things that when her care needs do go up, I’m always worried her budget won’t cover it now. And, they have to financially re-assess her all the time and I don’t like that’. • Most carers were involved in the assessment and support planning stages of setting up the budget • Despite this, only a small minority recalled being offered a carer assessment. • Troubleshooting was fairly common • Employing carers • Keeping on top of paperwork • Getting support packages adjusted • Anxiety about funding amounts and on what it could be spent. Table 4. Unpaid carer involvement in assessment (n=281 χ2= 3.68, df=1 p=0.055), support plan writing (n=282, χ2= 483, df=1 p=0.487), and separate assessment of their needs as a carer (n=284, χ2= 2.74, df=2 p=0.254).

9. Findings (e) Carer involvement after support plan operationalization ‘In doing things for yourself, managing things for yourself, you’ve lost some of the contact with the social services assessment people from a care point of view becuae you were much more in control of things yourself. As a consequence of that, when you did need a connection with them, it was harder to get things going again…I suspect that had we been more in touch with social services on the various assessment teams…they would have appreciated that a 93 year old that was falling a lot needed more care and it would be part of the budget. Whereas, we tended to be speaking to somebody who didn’t know here, who didn’t know me’. • Despite the budget being formally ‘owned’ by the older person, only 6 dealt with their own paperwork • 80% of those who cared for DP users helped or did all the paperwork Table 6. Who sorts out any paperwork associated with the personal budget? (n=272, χ2= 8.38, df=3 p=0.039). • Self-management of budgets = less personalisation by Social Services

10. Findings (f) Impact on carer • The budget made little difference to the amount of support most carers gave, but carers of DP users said they gave more • Though not statistically significant, there were noticeable differences in the distribution of stress scale scores Table 7. Has the Personal Budget of the person you care for made any difference to how much care and support you provide? (n=263, χ2= 8.87, df=3 p=0.031). Table 8. Zarit Care-Giver Burden Score profiles (n=254, χ2= 2.49, df=3 p=0.476).

11. Discussion • Most carers of DP users were initially enthusiastic about better opportunities to tailor services • Others were concerned about paperwork, ability to choose the right care workers, about budget amounts and feeling detached from ASCDs • These may have contributed to higher levels of stress for carers of DP users • Stress amongst carers of MPB users were more likely to arise from difficulties in co-ordination of care & poor care quality. • Despite considerable involvement most carers had not had a carers assessment. • ASCDs may be starting from a low base line in responding to the requirements of the Care Act • Social work professionals have been criticised for patronising attitudes and wanting to hold on to power • Our findings suggest a more complex picture in which professional judgements were sometimes wrong but often correctly took into account the capacity of the older person and the circumstances of the carer. • Carers wanted to know what care providers would provide the best/most appropriate care & support but could not be given this due to ‘commercial sensitivity’ • Case closure and poor information recording meant carers felt they had to go back to ‘square one’ if needs changed. • Who actually manages the DP and what does it tell us? • Carer assessments • The exercise of professional judgement by practitioners • Information sharing and personalisation • Non-financial costs and benefits to carers • Where the DP was owned by the older person it was overwhelmingly managed by an unpaid carer. • Only about 19% of adults of all ages have a DP – the % of older people is even lower though this is the government’s preference • ASCDs continue to be assessed on the % of people who have a DP • Do many older people actually want DPs or are they designed principally with younger adults in mind?

12. Conclusions • Policy drive to increase use of DPs – esp. for older people = transfer of responsibility for organising and managing care away from the state and on to unpaid carers • Consistent with views of others who are critical of the redefinition of citizenship (responsibilities emphasised, whilst high quality person centred care become contingent on the entrepreneurial skills of unpaid carers). • Many carers happy to accept additional responsibilities and there is evidence of benefit to carer and cared for person • Many carers also seemed inadequately supported to take on these new responsibilities • No re-balancing of rights and responsibilities imminent so research needed to explore factors that cause greatest stress for carers so ASCDs can offer targeted support.

13. References Woolham, J., Daly, G., Steils, N., and Ritters, K. (2015). The Evolution of Person-Centred Care to Personalised Care, Personal Budgets and Direct Payments in England: Some Implications for Older Users of Social Care Services. Sociologia e politichesociali ,18 (1), 145–162 Woolham, J., Daly, G., Sparks, T., Ritters, K., and Steils, N. Do direct payments improve outcomes for older people who receive social care? Differences in outcome between people aged 75+ who have a managed personal budget or a direct payment. Submitted to Ageing and Society October 2014. Woolham, J., Daly, G., Steils, N., and Ritters, K. (2014). Are personal budgets always the best way of delivering personalised social care to older people? http://sscr.nihr.ac.uk/PDF/Findings/RF19.pdf Woolham, J. and Benton, C. (2012). The Costs and Benefits of Personal Budgets for Older People: Evidence from a Single Local Authority . British Journal of Social Work, 43(8), pp.1472–1491.