Personalisation: A Journey of Discovery
Direct payments/Individual Budgets/in Control
Personal Budgets…its all about people self-directing their own
support
East Midlands Action Learning Set
GO EM Nottingham, 1st September 2009.
Robin Murray-Neill, DH Putting People First – mental health and personalisation
Paths to Personalisation 1
• A whole system, whole life framework for personalisation
in mental health
• Written by Anita Cameron from the National
Development Team for Inclusion, in collaboration with an
expert group of people who use mental health services,
carers and others working on personalisation, inclusion
and risk in mental health services
• Meeting with National Mental Health Development Unit
shortly to discuss hosting of Paths to Personalisation
and mh-personalisation group
Paths to Personalisation 2
• 10 sections (initially), derived from literature search and
collaboration with expert group, looking at different aspects of what
will make personalisation happen in mental health services
• Each section starts with a statement from the perspective of a
person using mental health services to “help focus attention on what
needs to be in place to achieve the right outcomes for people, and
on people’s real experiences of systems and services.”
• These statements also provide a whole system quality checklist for
personalisation
• Each section provides links to relevant resources such as practical
examples and published documents
Paths to Personalisation 3
• “Personalisation? I know this is happening when I am
treated with warmth, respect and honesty - when people
listen to me, treat me as an equal, and support me – and
when I don’t have to fight all the time to get what I want
to help me recover and live my life the way I choose to”
Mental health expert by experience.
• A fundamental re-think of the relationship between
citizens and public services runs through, for example,
Improving the Life Chances of Disabled People, Our
Health, Our Care, Our Say, Putting People First, and
NHS Next Stage Review.
Paths to Personalisation 4
• The main messages are very clear. We should expect a
personalised approach, which means a relationship with
public services which ensures that:
– We are empowered to have more say and control in all aspects
of public life and participate as active and equal citizens
– We have maximum control of our own lives, including control of
our own health and health care
– We are supported to live independently, stay healthy and recover
quickly
– We have choice and control so that any support we may need
fits the way we wish to live our lives
Paths to Personalisation 5
• Helpful, person-centred systems and approaches
– The systems I use support me to make my own decisions.
People listen to me and treat me with respect
• Information and advice, personal motivation and selfhelp
– I have opportunities for self-help and taking control. I have the
information and advice I need to feel empowered and make
choices
• Support for managing personal budgets
– All the things are in place that can help me comfortably manage
the resources allocated to me, in a way that suits me
Paths to Personalisation 6
• Support for carers
– I get the support I need to carry out my caring role, stay well and live my
own life
• Fair access and equality
– Opportunities are available to me without discrimination or unfairness
• Creative commissioning
– There is opportunity, choice and innovation in what is available to
support me and give me a good quality of life
• Partnership for inclusion
– My needs are met in a way that is easy for me. I get the support I need
to participate as a citizen and take advantage of the things available to
all
Paths to Personalisation 7
• Prevention and early intervention
– I get help and advice about how to stay well. Support and help
are available to me and my family at an early stage if I begin to
feel unwell or things go wrong
• Good Leadership for all
– I can have a leadership role and there is good leadership
wherever it is needed
• Workforce and organization development
– The people who are paid to provide me with support and
treatment have the right skills and approach and are available
when I need them
Paths to Personalisation 8
• I have a good experience when I first seek
information, help or support.I am treated in a
respectful way that leads to the right outcomes for
me
• People I come into contact with have the right
approach and skills to treat me respectfully, help me
recover and live my life the way I choose to
• There is a planned and balanced approach to crisis
and risk that I feel confident in and that does not
undermine my sense of being in control of my life
and recovery
Paths to Personalisation 9
•
Care Programme Approach and Assessment
–
–
–
–
•
1. Wellness Recovery and Action Plan (add details)
2. 3 Keys to a Shared Approach in mental health assessment, CSIP/NIMHE, 2008
http://www.3keys.org.uk/
3. Re-focusing the Care Programme Approach: Policy and Positive Practice Guidance , DH,
March 2008 www.dh.gov.uk/publications
4. Effective Care Co-ordination in Mental Health services: Modernising the CPA: A policy
booklet (DH, 2000) www.dh.gov.uk/publications
Positive Risk Taking
–
–
–
–
5. DH, Independence, Choice and risk: a guide to best practice in supported decision
making DOH, 2007 Best practice guide, learning and development materials, supported
decision making tool, leaflet for people using services
http://socialcare.csip.org.uk/index.cfm?pid=6
6. Person centred risk A course for senior managers, first line managers, family members
and carers and support workers. http://www.helensandersonassociates.co.uk
7. Risk enablement and personalisation project. DH Social Inclusion Programme
info@tonyryan.org
8. Positive Risk Taking Policy: Gateshead Council’s Community Based Services
Paths to Personalisation 10
•
Person-centred approaches
– 10. Person-centred thinking with people who use mental health services, Helen
Sanderson Associates with David Coyle, University of Chester (2005)
www.helensandersonassociates.co.uk/PDFs/MHminibookweb.pdf
– 11. Our choices in mental health, CSIP A framework for providers to extend
choices andpractical support http://www.mhchoice.csip.org.uk
– 12. Supporting People with Long Term Conditions (Re: Statement of values and
principles of care planning. P12)
http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicy
AndGuidance/DH_4100252
– 13. Co-production: an emerging evidence base for adult social care
transformation: SCIE Research Briefing 31,2009
http://www.scie.org.uk/publications/briefings/briefing31/index.asp
– 14. Website with support planning resources
http://www.supportplanning.org/MentalHealth/
– 15. What are we learning about support planning? In development for the DH.
Simon Stockton leading. (contact?)
– 16. Person Centred Reviews and CPA, David Coyle
Personalisation – some key characteristics
• A new relationship between citizens and the publicly funded services
they use
• Public services working together around the individual rather than
individuals navigating their way through a maze of publicly-funded
services
• People using resources in new ways so support fits into their life
rather than their life being shaped by the support available
• Focussing far more on what the person finds valuable and
meaningful in life rather than on professionally defined objectives
• It is about equality and social justice not pity
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
“…This will mean:
•
•
•
•
•
•
communities accepting that people with mental health
problems are equal
people receiving the support they need before they reach crisis point
people having genuine choices and a real say about what they do and the support
they receive in order to fulfil their potential
people keeping their jobs longer and returning to employment faster, with real
opportunities for career progression
recognition of the fundamental importance of people’s relationships, family and caring
responsibilities, a decent home, and participation in social and leisure activities; and
health and social care services working in close partnership with employment and
community services, with fair access regardless of ethnicity, gender, age or sexuality”
Social Exclusion Unit (2004) Mental Health and Social Exclusion: Social Exclusion Unit Report June 2004. London: Office of the Deputy Prime
Minister
Where have we come from and where are
we going to? [A personal view of changes in prevailing themes!]
Segregated
institutional
care
Community
based care
and support
Medically
based
approach
Duality of
‘health’
and
‘social’
care
Individualised/ Socially
personalised based
support
approach
Lunatics,
cripples,
idiots
Clients and
service
users
Cure
Doctor
knows best
Care
Professional
intervention
Citizens with
equal rights
and
opportunities
Independent
Living
Recovery
SDS
Individual
knows best:
Coproduction
Vivien Lindow
• “The idea that those who oppose current methods of
psychiatric “treatment” do not acknowledge the need for
services is strange and fantastic to most of us whose
experiences have led us to traditional psychiatry. What is
different is the existence of choice and freedom in
meeting our needs.”
Lindow, V. (1994) Self-help alternatives to mental health services. London: MIND
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)
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)
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 which can be available to
people when they need them, not when they
have fulfilled service criteria
Personalisation – 4 elements
Community facilities
and services that we
all use, e.g. transport,
leisure, health,
education, housing
and access to
information and
advice
People as
participants in their
communities,
friendships and
family relationships.
Individuals with lives
and relationships.
Support that’s
available for people
to stay independent
for as long as
possible,
people choosing
who provides their
support and what
form that support
takes, and
controllling when
and where those
services are
provided, rather than
being expected to fit
in with what’s
already on offer.
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.
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... a
concept that is relevant to all disabled people,
whatever their impairment/s…the whole range
of practical solutions to disabled peoples’
inclusion in mainstream society”
(Coventry Independent Living Group in Barnes et. al., 1996:10)
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
‘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
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
Renting a workshop (two people together)
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
Understanding the different
terms used
Independent living [The Purpose/Goal]
Personalisation [The Policy Direction/Approach]
Self-directed support/Right to Control [The System]
Individual budgets [combining funding sources]
Personal budget [single
funding source]
Provided Services
(ISF/Spot/Block
contracting)
Direct payments
Independent Living/Recovery
(Citizenship/Inclusion)
Self-directed support/Right to Control: a
new system to make Individual/Personal
Budgets work
Cash (direct payments)
Support requested from a provider
Direct Payments
• The mechanism that enables public authorities to pay
money to people as a means of them accessing the
support they require
– A duty on local councils in most cases where a person is eligible
to receive social care support
– It is intended that a permission will be established for PCTs in
respect of people involved in the piloting of Personal Health
Budgets
– The piloting of the right to control for disabled people from 2010
will introduce direct payments for Acces to Work; Independent
Living Funds; Specialist Employment Programmes; and
other areas to be determined by consultation
Individual Budgets
• “Helping disabled people to achieve
independent living by moving progressively to
individual budgets for disabled people,
drawing together the services to which they
are entitled and giving them greater choice
over the mix of support they receive in the
form of cash and/or direct provision of services.”
Prime Minister’s Strategy Unit, DWP, DH, DfES, ODPM (2005) Improving the Life Chances of
Disabled People – January London: Cabinet Office
Personal Budget
• The amount of money that a person is entitled to use to
meet their needs for social care support
• This may be one element in a larger Individual Budget
• For most people it may be:
– taken entirely as a direct payment,
– spent entirely on the person’s behalf by the local authority or
other nominated body, or
– any mixture of the two.
Individual/Personal Budgets
• Require a system which promotes the flexibility intended
by the introduction of direct payments irrespective of
whether a person chooses to receive a direct payment or
not:
– People are clear how much money they have to spend
– The focus shifts from what services should be provided towards
enabling people to utilise their resources to achieve the best
result for them in a way that suits them
– The system is based on equal rights and equality of access to
opportunities and activities rather than traditional notions of
‘caring for those less fortunate’ and ‘helping people make the
best of their lot in life’, etc……
Self directed support – key steps…
Direct payments
1997
dp up 2007
www.directpayments.csip.org.uk
www.ncil.org.uk
www.in-control.org.uk
in Control
2003
www.Individualbudgets.csip.org.uk
www.personalisation.org.uk
Individual Budget pilots
2006
Self-directed support
7.
Seeing
how
it’s
worke
d
1. My
money
Finding out
how much
6. Living my
life
2. Making
my plan
5.
Organising
my support
3. Getting
my plan
agreed
4.
Organising
my money
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
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
Specific issues for mental health
• Mental health service users reported:
– the poorest overall quality of life,
– poorer psychological wellbeing,
– were more likely to fall into the at-risk category for psychological ill
health.
– greater current social care needs than other groups
• A low availability of appropriate support for IB users with mental
health problems
• Some staff felt they were not clear about what was going on, some
were reported to have paternalistic and protective attitudes
•
A number of sites had experience of people with mental health problems
under-assessing their own needs
•
Glendenning et.al. (2008) Evaluation of the Individual Budgets Pilot Programme: Final
Report. York: IBSEN c/o Social Policy Research Unit, University of York
“better outcomes at roughly an equivalent cost”
• Cost-effectiveness evidence in support of IBs is strongest for mental
health service users, on both Social care and psychological
wellbeing outcome measures. 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
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
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
Self directed support – more key steps…
Personal Budgets
2007
www.in-control.org.uk
www.personalisation.org.uk
Staying in Control
2008
Personal Health Budget pilots
personalhealthbudgets@dh.gsi.gov.uk
2009
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.
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
Changing Attitudes:
The 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
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
DH Putting People First – 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@dhsocialcareprogrammes.org.uk