Transcript Developing Self Direction in Health Together

Growing Self Direction in Health
Together
Welcome!
Self Direction in Health and social careshifting control for better lives-our story
so far......
Overview
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Snapshot background.
What is self directed support and what is its purpose.
Cherishing as well as changing.
Citizenship and Health
Whole people in our whole context- Real “wealth”
Important “to” as well as important “for”:-working
together.
• How we can together make useful change happen.
From institution to citizenship
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In Control’s purpose
 In Control’s system of Self Directed Support is based on a clear set
of values.
 The purpose of our work is to support improved decision making
and a better relationship between people and the Welfare State, so
that people get better lives. We know that people’s lives don’t split
into health and social care. Our support needs to focus on whole
people in their whole context with contributions to make as well as
needs to be met.
This means:
 Influencing policy
 Focusing on practical solutions
 Being a source of mutual support and
 An exercise in citizenship
Connecting Innovation by people with Government
policy.
Professional gift model
• The underlying system of
power: ‘we know best’.
• Professionals and
commissioners work out what
they think we need.
• They buy things they think will
help.
• We have to slot in.
• We feel we should be grateful
and stay as passive recipients.
• We have not rethought power
Citizenship Model
• Citizen at the centre
• Services negotiated
• Entitlements defined
• Community fully engaged
• Outcomes improved
Times are changing....
“Ensuring older people, people with chronic
conditions, disabled people and people with
mental health problems have the best possible quality of life
and the equality of independent living is fundamental to a
socially just society...
“The time has now come to build on best practice and replace
paternalistic, reactive care of variable quality with a
mainstream system focused on prevention, early
intervention, enablement and high quality personally tailored
services. In the future we want people to have
maximum choice, control and power over the
support services they receive”
(“Putting people First DH 2007)
Cherishing as well as changing
The creation of the NHS was one of the great
achievements in the development of the welfare
state and we are rightly proud of it.
In Control supports the NHS providing:
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Highest quality care
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Universal and equal access
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Being free to those who need it.
These are important principles and any reform
should seek to improve them.
In Control’s approach to personal health
budgets:–innovation not imposition
Self Directed Support is a complex welldeveloped approach specifically designed to
reform social care- it works well since it leads to
better decision making.
The nature of decision making in health care is
different, as is the history, legislative context
and number of professionals involved-and we
all use
health care.
An emerging consensus
 The ideas underpinning Self Directed Support are increasingly
originating within the NHS, perhaps using slightly different words but
following the same themes of shifting power and control closer to
people
 For example the work on “Rethinking long term conditions” by the
Centre for Clinical Management Development at Durham University,
the “Co-creating Health” three year demonstration programme by
the Health Foundation, the “Expert Patient Programme” and the
Department of Health “Personal Health Budget pilot programme”.
 There is an emerging consensus that it is possible to successfully
apply the principles of Self-Directed Support to some parts of the
current health care system as well as to social care.
Personal health budget-what is it?
The person must:
 Know how much money they have in their personal budget
 Be able to spend the money in ways and at times that make
sense to them
 Agree the outcomes that must be achieved with the money
Personal health budget-ways to “hold” the
money
Personal Budgets can be held in a range of
different ways: including a real budget
held by a third party, or (when legislation is
in place) healthcare direct payments. (As
outlined in section 3.6. pages 32 to 35 of “Personal health Budgets First
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What is important is that the person knows
how much money is available with which
to plan and that they can decide flexibly
how to meet agreed outcomes.
Steps” document- DH 2009
Budgets alone won’t work
Our experience suggests that while personal health
budgets may be very useful- they will only work if
there are also:
 Opportunities to meaningfully plan and shape
treatment and support- flexibly
 Effective systems of support, information and
advice
 A range of effective options
 Appropriate systems for professional input and
monitoring.
 A shift in the power between an individual and the
NHS
How does citizenship impact on Health?
Citizenship in Health
Our health is influenced by many more things than
good health care. It is impacted by:
Poverty
Isolation
Unemployment
Poor housing etc..
A society that excludes people from
citizenship guarantees poor health e.g.-look at
the early death rates of people with mental health
problems...
Purpose: active citizenship and healthy
communities-not simply consumerism.
 The purpose of Self Directed Support is to enable improved
decision making and a better relationship between people
and the Welfare State, so that people get better lives, as
active and included citizens, part of healthy communities.
 It is not simply about giving people money; sometimes people
are most impoverished when they are using their own money
since they have no information, no connections, no
confidence, no knowledge of other possibilities and no one to
help them plan.
 We know that people’s lives don’t split into health and social
care. Our support needs to focus on whole people in their
whole context with contributions to make as well as needs to
be met.
Real “Wealth”
For people to have control of the
necessary resources for active
citizenship we need to see
people as whole people in their
whole context- their “real
wealth”-not only their illness
and finances.
This includes increasing people’s
understanding of risks,
options and good strategies
Strengthening people’s skills and
confidence
Helping people to stay connected
to each other.
Times are changing
Power with clinicians
 Traditional interactions
 Belief that knowledge
creates behaviour change
 Goals are set by the
clinician and success is
measured by compliance
with them
 Decisions are made by
the clinician.
Co-production-power shared
 Collaborative interactions
 Belief that one’s confidence
in the ability to change,
together with knowledge,
leads to behaviour change
 Person is supported in
defining their own goals.
Success is measured by
attaining those goals
 Decisions are made as a
patient-clinician partnership
Tilting the balance of power
 Its about shifting power and creating an
improved relationship
 Central focus is improving the dialogue
between the citizen and the professional to
create:
Greater mutual respect & understanding
Better quality decision-making
Better outcomes
 This should produce a Personal Plan which is
co-signed by the citizen and professional
Cherishing as well as changing
Whilst we shift our focus towards outcomes and
keeping processes around personal health
budgets as simple as possible, we must also
sustain current good practice. Thus we must
ensure we have:
A clear process for authorising plans,
Expert clinical input alongside an individual’s
own views and ideas,
Continuous appropriate monitoring and review of
some-one’s health condition over time.
Next steps-Staying in Control Phase Two
• In Control’s second phase of work focussing on how self
directed support can work best in Health currently has
26 members who will be working collaboratively
throughout 2010.
• Our work will complement the Department of Health’s
personal health budget pilot research.
• Our approach is to learn by doing- with small steps with
real people in real life.
• Finding creative solutions together , sharing those and
evaluating differences from person, family and
professionals’ perspectives.
• Optimistic and pragmatic, enthusiastic and grounded
Our Health members 2010
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Lincolnshire
Stoke on Trent
Norfolk
Nottingham City
Hull
Stockton on tees
Hartlepool
Eastern and Coastal Kent
Nottinghamshire
Bassetlaw
Redcar and Cleveland
Warwickshire
Northamptonshire
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Northumberland
Shropshire
Blackburn with Darwen
Central and Eastern Cheshire
Halton and St Helen’s
Warrington
Western Cheshire
Cumbria
Ashton, Leigh and Wigan and
North West Strategic Health
Authority
West Midlands SHA
Solihull
Heart of Birmingham
Department of Health Personal Health Budget
Pilot Research Sites
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Hartlepool PCT with Stockton PCT
Doncaster PCT
Hull Teaching PCT
Manchester PCT
Merseyside (joint bid)
Stoke on Trent PCT
Health and Wellbeing Partnership
(Birmingham)
Barking and Dagenham PCT
Havering PCT
West London (joint bid)
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Norfolk PCT
Oxfordshire PCT
Nottingham City PCT
Northamptonshire Teaching PCT
Avon, Gloucestershire, Wiltshire
and Somerset Cardiac and Stroke
Network
Bedfordshire PCT
Eastern and Coastal Kent PCT
Medway PCT
Torbay Care Trust
Dorset PCT
Some Key issues: People themselves have the highest vested interest in getting
best value for money.
 Self Directed Support and personal health budgets are not a
universal panacea- they will not be appropriate across the
whole of the NHS, nor will they resolve the financial
constraints of a limited budget.
 What self directed support can do is enable an open debate
about health priorities and how to connect provision of
resources to need, in the most efficient and effective ways.
 Self directed support can be seen to transform lives.
 It will be essential to evaluate changes in people’s lives, from
the perspective of individuals, family carers and professionals.
Whole people changing whole systems...
It’s early days and there’s much to be
considered but people’s lives can’t wait...
Self Direction in Health-working together to
create useful change.
www.in-control.org.uk
[email protected]
07811 176708
How?
Thinking about how a personal health
budget can be held and managed
Figure 6: Approaches to holding a personal health budget. (Source, Dawn Stobbs, DH)
Continuum of Control:
Third party ‘mechanisms’ and their locus of control
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An Independent User Trust
A community Interest Company
User-led Organisation
Voluntary Organisation
Private Sector
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An Independent User Trust
(also known as an Independent Living Trust)
Puts the individual at the heart of decisionmaking
Friends, family members, advocates or others
can be trustees
The trust follows the rules set out in the trust
deed and can employ staff
However, not everyone has an established
circle of support and trustees may see the
responsibility as too onerous
A community interest company
(a type of social enterprise)
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They are quite easy to arrange and are not-forprofit
Families could join together to set up their own
CIC
However, a CIC that operates as an ‘agency’
for more than one person may need to be CQC
registered and the individual focus will be lost.
User-led Organisation
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All local authorities are required to support the
development of a user-led organisation in their
area.
The locus of control lies with citizens
However, they may have a wide remit and lots
of clients
Voluntary Organisation
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Good source of advice, information and
support
Good networks and more community-based
Not-for-profit
However, the budget holders voice may be
weaker than with other arrangements i.e.
independent user trust
The organisation may have a wide remit with
many clients and may be quite bureaucratic
Private Sector
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Commercial drive
Service development
CQC registration
However, the budget holders voice may be
weakened.
There is a profit motive
“Managing the money: Resource Development
Options for Personal Budgets” (CSIP)
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Self-determination: Decision-making
should be as close to the individual as
possible remembering that involving
people is not the same as sharing power
Transparency: Not only should the
individual know the resources available to
them for planning, they should have easy
access to detailed income and expenditure
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Choice and control: Third party
arrangements should promote citizenship.
They should be flexible and should focus
on outcomes.