Personalisation: A Journey of Discovery

1. Personalisation: A Journey of Discovery Direct payments/Individual Budgets/in Control Personal Budgets�its all about people self-directing their own support Volition Annual Away Day The Carriageworks, Leeds. 3rd February 2009. Robin Murray-Neill, DH Personalisation/NSIP � mental health and personalisation

2. SEU report 2004 �Our vision is of a future where people with mental health problems have the same opportunities to work and participate in the community as any other citizen�� Social Exclusion Unit (2004) Mental Health and Social Exclusion: Social Exclusion Unit Report June 2004. London: Office of the Deputy Prime Minister Our vision is of a future where people with mental health problems have the same opportunities to work and participate in the community as any other citizen. Our vision is of a future where people with mental health problems have the same opportunities to work and participate in the community as any other citizen.

3. Where have we come from and where are we going to? [A personal view of changes in prevailing themes!]

7. Independent Living �Independent Living is about the Empowerment of disabled people and their ability to control their own lives. It is not the name of a particular service or provision but should be the objective of services and provisions and the furtherance of Disabled People�s human and civil rights and inclusion in mainstream society� (Coventry Independent Living Group in Barnes et. al., 1996:10)

8. Recovery What does �recovery� mean for an individual? �a process of changing one�s orientation and behaviour from a negative focus on a troubling event, condition or circumstance to the positive restoration, rebuilding, reclaiming or taking control of one�s life.� NIMHE Guiding Statement on Recovery (January 2005)

9. Recovery What does recovery mean for a system designed to provide support to people? Focus on people rather than services. Monitoring outcomes rather than performance. Emphasising what people can do rather than what they can�t do. Educating people who provide services, schools, employers, the media and the public to combat stigma. Collaboration between those who need support and those who support them as an alternative to coercion. Enabling and supporting self-management, promoting autonomy and, as a result, decreasing the need for people to rely on formal services and professional supports. NIMHE Guiding Statement on Recovery (January 2005)

11. What are we trying to achieve? ��a new direction for care services� A new relationship between citizens and their public servants A shift from crisis intervention towards enablement and early intervention to promote independence Support and services built around the specific needs and aspirations of individuals: to fit into their lives

12. A clear goal! �This landmark protocol seeks to set out and support the Government�s commitment to independent living for all adults.� HM Government (2007) Putting People First: A shared vision and commitment to the transformation of Adult Social Care.

13. A basic principle �Everyone, irrespective of their illness or disability has the right to self determination and maximum control over their own lives." Alan Johnson, Health Secretary, December 10th, 2007

14. �Outcomes� rather than �Activity�: concerning ourselves more with the right result than with the �right� way of getting to it! �As a general principle, local councils should aim to leave choice in the hands of the individual by allowing people to address their own needs as they consider best, whilst satisfying themselves that the agreed outcomes are being achieved.� Direct Payments Guidance: Community Care, Services for Carers and Children�s Services (Direct Payments) Guidance England 2003 Department of Health

15. Direct payments have shown how differently people might do things Buying a dog Purchase of a mobile phone Driving lessons Playing in a violin group Joining a fishing club Hiring an art teacher (four people together) Employing someone to manage a small enterprise (six people together) Participating and running an independent leisure, sport and social group (twenty people together) Paying for travelling to stay with relative for a break

16.  Personalisation Self-directed support Individual budgets Personal budget Provided Services Direct payments

17. Self directed support � key steps� Direct payments dp up 2007 1997 www.directpayments.csip.org.uk www.ncil.org.uk in Control www.in-control.org.uk 2003 www.Individualbudgets.csip.org.uk Individual Budget pilots 2006 www.personalisation.org.uk

18. 7 steps to being in control7 steps to being in control

20. What did the pilots find out? IBs were typically used to purchase personal care, assistance with domestic chores, and social, leisure and educational activities; People receiving an IB were more likely to feel in control of their daily lives, compared with those receiving conventional social care support; satisfaction was highest among mental health service users and physically disabled people and lowest among older people; Little difference was found between the average cost of an IB and the costs of conventional social care support, although there were variations between user groups

21. Specific issues for mental health Mental health service users reported the poorest overall quality of life, poorer psychological wellbeing, and not surprisingly were more likely to fall into the at-risk category for psychological ill health. In both the IB and comparison groups, people with mental health problems had greater current social care needs than other groups The alleged paternalistic and protective attitudes of front-line staff and difficulties in working with NHS partners in what were often jointly funded and managed services Some staff felt they were not clear about what was going on A low availability of appropriate support for IB users with mental health problems Glendenning et.al. (2008) Evaluation of the Individual Budgets Pilot Programme: Final Report. York: IBSEN c/o Social Policy Research Unit, University of York

22. �better outcomes at roughly an equivalent cost� Other things being equal, mental health service users appeared to receive lower levels of support to manage their IB Cost-effectiveness evidence in support of IBs is strongest for mental health service users, on both the outcome measures examined here (Social care and psychological wellbeing). Actual costs were very similar (�149pw IB; �152pw comparison group) A number of sites had experience of older people, and people with mental health problems in particular, under-assessing their own needs the costs of care management of people with mental health problems and learning disabilities from earlier research are very similar to the reported costs of the IB group

23. A different way of managing resources� people with a mental health problem (71 per cent) or a physical disability (69 per cent) were significantly more likely to opt for the choice of having their IBs transferred into their personal bank account Among people with a mental health problem, 26 per cent of services were commissioned by the local authority

24. System barriers When you take the support plans to the managers they can tend to make sort of value judgements on, �Well I don�t think this�ll suit them� and at one point �cos we wanted to do a befriender, the manager said, �Well you know we�ve got a befriending service at the moment, why can�t they use that?� (Care co-ordinator, mental health) We had such a palaver about how to word it. On the plan we put down �befriender� and when we tried to get it signed off higher up it got rejected because of that. So we all got back together and changed the word to �companion�. All that added an extra 4-5 days of our time. (Mental health service user)

25. The challenge of culture change� We�re having to undo many years of people�s rigid thinking in terms of service users about, �I know what�s best for you�. And I think that has existed in psychiatry for a long time. And I've heard psychiatrists say, �But I know what�s best for you. I know what you need�. But they don�t. It�s an arrogant statement. We actually need to point out to service users, �Maybe the reason we don�t want you to do that is because you could get hurt, and we can see it�. But again, it�s about risk learning. You know, it�s positive risk taking. And we�re not good at that. And so that�s fear for us. (Care co-ordinator, mental health)

26. Mental health specific findings� the IB pilots encouraged resources to be used in new and creative ways that focus on goals, outcomes and inclusion�As many as two-thirds of mental health service users used IBs for leisure and recreation activities, such as gym membership and cinema trips. Such practices could challenge both professional and public perceptions of what constitutes the legitimate use of public resources. Thus care managers reported considerable uncertainty about their roles in relation to some of the choices made by IB holders IB holders�reported that greater transparency about the resources available to them was only of value if it was accompanied by clear guidance for what they could (and could not) use those resources.

27. Non-statutory organisations can play a key role in helping to make personal budgets work Information about personal budgets Support to think about how to use a personal budget Support with self-assessment Advocacy Providing support to plan and/or manage a personal budget Acting as an agency employer of staff Offering services for people to buy with their personal budgets

28. Self directed support � more key steps� Personal Budgets www.personalisation.org.uk 2007 Staying in Control www.in-control.org.uk 2008 Personal Health Budget pilots personalhealthbudgets@dh.gsi.gov.uk 2009

29. Staying �The challenge is to develop a coherent model of Self Direction that works across health and social care, respecting difference in legislation and character of interventions and expertise.� At home - with no significant use of community or social care services. In hospital - receiving planned or unplanned health care, including mental health care. Using intermediate care - receiving therapies or support to help a return to home. At home with support - at home but needing on-going support to maximise health and well-being.

30. Personal Health Budgets ��in 2009, we will start piloting personal health budgets, as a way of giving patients greater control over the services they receive and the providers from which they receive services.� �those with long term conditions, those receiving NHS Continuing Healthcare and users of mental health services might be well placed to benefit.� DH (2008) Personal Health Budgets Initial information sheet

32. Some useful resources Heslop, P., (2001/2007) Direct Payments for Mental Health Service Users/Survivors: A guide to some key issues London: National Centre for Independent Living Available from: www.ncil.org.uk Breaking Barriers (Video/DVD, 2003) Equalities: The National Council for Disabled People and Carers from Black and Minority Ethnic Communities equalities@equalitiesnational.org.uk Available from: kevin.whiteley@csip.org.uk Brewis, R. (2007) A Voice and A Choice: self-directed support by people with mental health needs, a discussion paper in Control www.in-control.org.uk Direct payments and mental health (DVD, 2007) CSIP NEYH Development Centre/Rotherham Metropolitan Borough Council Available from: kevin.whiteley@csip.org.uk