Personalisation: A Journey of Discovery

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Personalisation A Journey of Discovery

• Direct payments/Individual Budgets/in Control
• Personal Budgetsits 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

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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

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Where have we come from and where are we going
to? A personal view of changes in prevailing
themes!
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The Traditional Approach 'medical model'
disability
care society person      
 


 
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The Social Approach 'social model of
disability' society disabling
barriers
person      
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Independent Living - appropriate assistance
to remove disabling
barriers   society person
assistance      
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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 Peoples human and civil
  rights and inclusion in mainstream society
• (Coventry Independent Living Group in Barnes et.
  al., 199610)

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Recovery

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

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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 cant 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)

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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

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A clear goal!

• This landmark protocol seeks to set out and
  support the Governments 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.

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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

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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 Childrens Services
  (Direct Payments) Guidance England 2003
  Department of Health

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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

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Personalisation Self-directed
support Individual budgets Personal
budget Provided Services Direct payments
Understanding the different terms used
Independent living
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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

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Self-directed support
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About the Individual Budget Pilot Programme

• 13 Local Authorities
• Ran for 2 years finished December 2007
• Was fully evaluated report anticipated later in
  2008
• All adults
• Drew heavily on learning from In Control, and
  from direct payments implementation

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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

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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

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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

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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

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System barriers

• When you take the support plans to the managers
  they can tend to make sort of value judgements
  on, Well I dont think thisll suit them and at
  one point cos we wanted to do a befriender, the
  manager said, Well you know weve got a
  befriending service at the moment, why cant 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)

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The challenge of culture change

• Were having to undo many years of peoples rigid
  thinking in terms of service users about, I know
  whats best for you. And I think that has
  existed in psychiatry for a long time. And I've
  heard psychiatrists say, But I know whats best
  for you. I know what you need. But they dont.
  Its an arrogant statement. We actually need to
  point out to service users, Maybe the reason we
  dont want you to do that is because you could
  get hurt, and we can see it. But again, its
  about risk learning. You know, its positive risk
  taking. And were not good at that. And so thats
  fear for us. (Care co-ordinator, mental health)

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Mental health specific findings

• the IB pilots encouraged resources to be used in
  new and creative ways that focus on goals,
  outcomes and inclusionAs 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 holdersreported 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.

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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

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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_at_dh.gsi.gov.uk 2009

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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.

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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

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Changing AttitudesThe way to social inclusion

• Individual
• Dependent and Vulnerable Choice and Control
• Service
• Providing and Protecting Facilitation and
  Support
• Community
• Segregation and Stigma Engagement and
  Participation

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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_at_equalitiesnational.org.uk
• Available from kevin.whiteley_at_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_at_csip.org.uk

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DH Social Care/National Social Inclusion
Programmes mental health and personalisation

• Robin Murray-Neill
• Eastern Development Centre, 654 The Crescent,
  Colchester Business Park, COLCHESTER, Essex. CO4
  9YQ
• 01206 287588
• 07747 536067
• robin.murray-neill_at_dhsocialcareprogrammes.org.uk