Family members’ experiences of personal budgets for severe mental illness

Family members’ experiences of personal budgets for severe mental illness Findings from the PEOPLE study Involving families in supporting mental health recovery, 7th November, 2013

Personalisation and recovery Alakeson & Perkins, 20111 • Transformation of services to redress power imbalance • Individual focus – move away from one-size-fits-all • Holistic view, beyond the condition – personal and social strengths and resources • Independence and self-management – increased control over goals and mechanisms 1Alakeson, V., & Perkins, R. (2012). Recovery, Personalisation and Personal Budgets. Centre for Mental Health.

Implications for family • Holistic support consideration of home life, relationships, existing support and barriers • Focus on resources consideration of resources available through social and family connections • More independence shifting demands on carers, ‘picking up the slack’ • Transforming identity required reflected shift in family carers – invalid to agent, carer to enabler

Personal Budgets • One mechanism for providing personalised social care • Allocates an amount of money for the person’s care. • Service user controls the budget and decides (subject to approval) how it will be used • Direct payment – service user holds and spends the budget • Managed budget – local authority holds and spends a nominal budget on their behalf • Social care support • Eligibility criteria based on needs assessment • In mental health, use of personal budgets is behind other disability areas (LD=75.3%; Physical=58%; MHP=21.9%)

About the study • Funded by Big Lottery • 3 year project • People receiving, have received or trying to receive Personal Budgets for SMI • Local authority 1 • Local authority 2 • Local authority 3 • Local authority 4 • SUs x 3 • Carers • MHPs • SUs x 3 • Carers • MHPs • SUs x 3 • Carers • MHPs • SUs x 3 • Carers • MHPs

About the study • People receiving, have received or trying to receive Personal Budgets for SMI • Local authority 1 • Local authority 2 • Local authority 3 • Networks • for carers only • SUs x 3 • Carers • MHPs • SUs x 3 • Carers • MHPs • SUs x 2 • MHPs

About the study • How are family carers involved in personal budgets? • How does this involvement affect the provision of support to the individual? • How does this link to aims and principles of Recovery?

Participants • 54 service users – total of 112 interviews • 30 mental health professionals • 18 carers – 11 from LAs / 7 from networks

Analysis • Started with the carer experiences • Draw out key themes and contrasts • Types and experiences of involvement • Describing impact of involvement • Analysed service user and MH professional accounts only where they discuss carer involvement (service user interviews - 12/54; MH prof - 3/30)

Carers as ‘defenders’ Family carer role to protect their relative – in conflict with mental health services “I had a very bad interview with my CPN […] It made me feel very unbalanced, very agitated […] This was on my second appointment with him, and the outcome was that on the next occasion I brought my brother along.” – SU “Even if there was somebody else to do that [supporting her son with the budget], and I wasn’t here, I think what they’d do is trample all over him, and make him agree that he didn’t need all of these things [they’re] trying to do that now.” – Parent

Carers as ‘defenders’ • Carers’ accounts are characterised by ‘combat’ terms • Complaints are common • Carers became experts in policy and legislation • Carers and service users both said that without carers to take on this fight, the service user would not have manage it. “I don’t know whether there’ll be a bit of resistance there [in relation to a new needs assessment], but I’ve got a very good lawyer if there is. They won’t win on this, because I know exactly what the law says they have to do.” - Parent

Accessing Personal Budgets • In half the carers’ accounts, they introduced the idea of Personal Budgets • Mostly, service users rely on care co-ordinators – hit-and-miss • Carers draw on other networks and ‘learn the system’ to access maximum support “Some folks are coming up to us and saying I’ve heard about the direct payment scheme […] typically those people have got carers who are in the know, maybe involved with the [third sector org] carers’ group, or just really savvy really as to what’s happening in the services.” – KW

Accessing Personal Budgets • Carers also played a role in persuading service users to access to Personal Budgets • MH practitioners found using Personal Budgets easier where a family member was supportive • BUT, some felt that if there was family support, a Personal Budget wasn’t needed “There are two groups of clients… clients with carers who are quite articulate and intelligent. They understand the principles and the process. They also know what they need. Now, the other group is much more difficult.” – KW

Applying for Personal Budgets • Paperwork is long, complicated and ‘not service user-friendly’ • Carers support service users through the process – especially when the person was unwell • Sometimes, carers also took over the role of care co-ordinators, just to get it done “It took quite a good level of education to fill it in, and you had to know how to play the game really and so I used all my kind of educational nous” – Parent “The last [support plan] I asked them to produce […] I had to write it basically. I had to tell him what to put in it in order to get the funding.” – Parent

Applying for Personal Budgets • Carers’ ability to get involved varied widely • MH practitioner attitude was a key factor • Identified differences in approach towards to parent carers and partner carers • Expectations of ‘normal’ family life seem to play a factor here • BUT – small numbers, and some exceptions • Parent carers… • More likely to be seen as dominating or interfering • More likely to be aiming for independence from carer • More likely to be excluded from discussions or experience lack of engagement from MHPs • Partner carers… • More likely to be seen as supportive • More likely to be aiming for independence with carer • Needs more likely to be considered • More likely to include joint activities as part of PB

Impact of carers on needs assessment “It says, ‘are you prepared to do this?’, ‘are you prepared to do that?’ So as a carer you’ve got to be quite good at actually saying ‘no, sod that, I’m not doing that.’ And it makes you sound like a real villain.” – Parent • Carer roles are sometimes assumed in the assessment • Carers had to play down their support to access help. • MHPs expressed the view that if a carer was around, some types of personal budget support would not be appropriate “They put ‘my wife supports me around the home […] but with cooking or staying safe […] everybody else could help in that way; it didn’t necessarily have to be me.” - wife

Carers & budget management “He can’t manage money, so we do all the budgeting, so that’s a big problem for us.” – Parent • For people with SMI, there was often a belief (from all groups) that managing money would be impossible. • Where carers were prepared to do this, direct payments were more likely to be available. • Placed considerable burden on some carers, particularly where employment issues arose “I get really stressed. So with paperwork I do it between my mum and dad and myself […] I need to have that support.” – SU “I was providing the supervision […] I was training them as best as I could.” – Parent

Carers & budget management • As a result, some budget recipients knew almost nothing about the personal budget • However, through supporting budget management, families helped service users to develop skills and confidence. • It is difficult to see how this could happen for service users without family. “In the beginning, I did drive it, but as he’s become more empowered by his support workers, he drives it now. Yes, I mean, I did it all at the beginning, but he does the interviews now and he’s very intuitive. He’ll sort of say straight away ‘that person is not right for me.’” – Parent

Conclusions • Clements (2009) – “[it] may be difficult for disabled people without carers to use personal budgets” • Some support for this from our study, particularly for service users who are very unwell at the time of assessment and planning • Carers may increase likelihood of getting a PB by: • knowing about and accessing PBs • pursuing & ‘fighting for’ service • leading, or supporting the application process • making a direct payment feasible by reducing concerns about budget management

Conclusions • Expectations about carers and caring roles are commonplace and affect the extent to which involvement is encouraged or taken into account: • What is reasonable to expect from carers? • What is a ‘normal’ or ‘healthy’ family relationship? • What do service users want? • When are carers seen as ‘difficult’ and ‘demanding’? • As a result, carers can reduce the likelihood of accessing support through personal budgets.

Personal budgets & recovery • Plenty of instances of service users without family carers who manage each of these aspects themselves • Active involvement of carers tends to be among the most unwell (though not everyone has access to supportive family carers). • Family engagement may undermine personalisation: • Several service users who know little about the Personal Budget • Involvement in decisions may be reduced • Managing and controlling spend may be reduced • Equally, carers may provide a bridge for those unable to take the immediate step to increased control – • Growth in confidence and skills • Access to additional independent support (e.g. PAs)

Conclusions www.rethink.org/personalbudgets Sarah Hamilton, Research Manager at The McPin Foundation sarahhamilton@mcpin.org www.mcpin.org www.twitter.com/mcpinfoundation

Family members’ experiences of personal budgets for severe mental illness