I spent the last 2 days thinking about how people with Long Term Conditions can be empowered to manage their own care. The evidence is striking - people who are confident enough to speak up, ask questions, voice opinions are half as likely to be victims of a medical error, and twice as likely to have a well coordinated health team around them.
This struck me as an amazing statistic. Far more influential than any
organisational changes by health services on the quality of support a person
gets from the NHS is the approach that person (and their allies) takes to the
people who provide their care.
Conversely people who simply accept what they're told by health
professionals, don't question, don't speak up, accept the 'victim and rescuer'
paradigm, have much worse prognoses - the figure quoted was 7 years difference
in life expectancy: The evidence base shows that it pays to be 'bolshie' (though
the professionals who use 'evidence based practice' never mention this!).
So the next question I'd ask is "how do we enable more people who might have
a long term condition to be confident, knowledgeable and skilled enough to take
back some power and control over the management of their own condition, and
their own life?"
I think that serious work to overcome disempowering depressing and
demotivating isolation and loneliness is one key to this: intentional relationship building is a fundamental step that seems
almost always to be overlooked by services, even though isolation and
loneliness, lack or loss of relationships is a common factor in the lives of
almost everyone experiencing long term health or social care.
Coupling intentional relationship building with the powerful questions and
tools that Person Centred Thinking has to offer provides an agenda that a circle
could use to grow itself and to help a person think about their life.
If this could also be coupled with personal health budgets, in addition to
personal social care budgets, (or combined with them for extra simplicity and
flexibility), then the person can begin to assemble the allies, the information
and the resources they need to win back choice and control in their lives.
This may well require the assistance of someone to help with the donkey work of assembling, administering and facilitating a circle and it's meetings. We call this person a 'circle facilitator', but they could equally be called a 'community connector', or a 'community champion'.
I don't think we should be doctrinaire about whether a circle facilitator is
paid or not.
If we make too many rules around circles, we stifle how they might develop,
and circles will develop in different ways with different people.
Some people will feel that being able to employ a circle facilitator from
their own personal budget, who they can then hold to account (and if necessary
replace), is preferable to being beholden and grateful to someone who provides
their time free, and also very preferable to a facilitator provided by and paid
by the social/healthcare system, whose loyalties might be torn.
The great pioneer of Disability Studies and the social model of disablity,
Vic Finklestein did some really interesting work about the need for 'Professions
Allied to the Community'. http://www.leeds.ac.uk/disability-studies/archiveuk/finkelstein/PAC%20Trade%20Union.pdf
These are people who work directly for the disabled person, allowing that person
to work out their own definition of what constitutes a 'normal' form of
assistance, and who have the ability to freely challenge controlling and
excluding approaches from traditional services based on 'cure' and 'care'. By
doing this they become an engine for change in health and social care, and in
Early work on circles created a small number of excellent circles and relied
so much on personal goodwill. The people who got those circles got them largely
out of luck, because (and I know this is a huge generalisation) they or their
families had personal connections to people with the skill and the will
to facilitate them. To build circles at scale, so that many many people are
benefitting from what circles could offer requires us to think again about the
'rules' of circles, and be prepared not to rule anything out.
The growing uptake of personal budgets is shifting the environment in which
circles could develop. Establishing that a circles facilitator helps a person
unlock extra social connections, extra fun, contribute their gifts and skills,
and find a wider range of supports will provide evidence that paying for a
circles facilitation is a good use of a bit of that budget, at least with those
many people who would never get that facilitation any other way.
Here's a link to a previous blog I wrote on circles of support and personalisation