Shared Walk

There are hundreds of ways of helping people overcome social isolation. Here's one very easy way to keep people in touch with the outside world, to connect and take notice.

Shirley Ayres wrote the original article, that you can find on her blog "Connecting Social Care and Social Media" 

Being solated and housebound can have a serious impact on a person’s health, well-being and quality of life. A new internet and smartphone service is helping housebound individuals to explore the outside world with a friend, relative, carer, or volunteer. The aim of Shared Walk is to help people stay in touch through sharing access to photographs and short videos that can be easily and spontaneously transmitted from a customised mobile phone app.
In particular, it allows anyone with a smartphone to capture and send narrated videos to a housebound partner with access to personal space on the Shared Walk website. It is hoped that this service will be particularly valuable for relatively isolated individuals with access to the website. It will enable them to keep in touch with any contact  (or group of contacts) who can use a smartphone app. It is secure, accessible and user friendly to the novice – and it’s free to use.

The mobile member of this partnership typically captures brief video episodes of their daily lives with the  phone app and instantly transmits them to ‘domestic’ partners to view and, if they like. comment upon through a simple webpage. The video might be outward looking views of a “walk” (although it might even be the view from a “journey” rather than a walk – say the view from a bicycle or car). Housebound participants can also subscribe to “stories” in which a mobile individual posts intermittent video clips that capture something of their everyday lives –  this could range from a student,someone in business, a member of the clergy or a teacher.

“We were motivated by the idea that vivid and personal visual material was a powerful resource to animate and sustain relationships, particularly among those increasingly disconnected from an active social world.”  Professor Charles Crook leading the team developing Shared Walk

The research team at the University of Nottingham (with funding from the Nominet Trust) have been looking at how everyday technology can help those who are socially and physically isolated feel more connected with their families, friends and community.

Shared Walk are partnering with charities working with housebound individuals to promote the service and encourage people to sign up. Have a look at the introductory video and do email  Professor Crook charles.crook@nottingham.ac.uk or contact Charles  via Twitter if you would like to be involved in this innovative project.

Neighbourliness: A Potential Life Saver

I was saddened to read this: http://t.co/awySlsKB about Gloria Foster: an elderly woman from Surrey, who basically starved alone in her house for 9 days, after the agency providing her care was shut down after a UK Border Agency raid. Tragically, support did not get to her in time, and she died two weeks ago in hospital.

It's not clear what went wrong, but somehow she was left without any care whatsoever.

I can imagine how her neighbours feel. They probably wish they'd done more, but they probably assumed social care had it all covered.
 
Imagine the difference if she'd been able to use a circle facilitator/community connector - if a couple of neighbours had been invited to bob in once a week, been given permission to nip in for a chat put her bins out for her or take her cat to the vets. The kind of things neighbours used to do for each other.

This informal 'circle of support' might have noticed that suddenly nobody was turning up. That Gloria was in desperate need of help, made that crucial phone call to social services.

Neighbourliness Doesn't Have To Be A Thing Of the Past

Organising an informal circle wouldn't have cost a lot of money, compared to the cost of homecare 4X a day, but it could have helped her be less lonely and isolated from her local community.
Would it have saved her life? I don't know, but I do think her life would have been less lonely, and loneliness is our 21st Century plague.

There are definitely many questions to be answered here, I'm assuming this provider was chosen on cost grounds, but nobody seems to have checked how the provider could manage to be so cheap, it appears they were exploiting the cheap labour of illegal immigrants in order to do this.

I don't think a circle could 'replace' formal care. You can only ask so much of your neighbours. However without a circle, a person's vulnerability increases due to the one dimensional nature of their support. Circles might not save money initially, though in the long term they could act as a form of prevention. Lonely socially isolated people tend to die 7 years earlier than average. Being lonely and unconnected is as lethal as smoking.

 A circle of support might not replace formal care, but it can keep those carers in their place, enabling the person to get the best out of their supports and hold their professional carers to account.

If Gloria had be 8, instead of in her 80s, this story would have got far more publicity. The tabloids would be calling for senior heads to roll, whether or not they had anything to  do with the mistakes that were made. Instead, because Gloria was an elderly woman, her story is relegated to a small paragraph, another sad footnote about the failings of the formal care system.

The inquiry, by Surrey Safeguarding Adults board is not believed to be a serious case review...












   

Long Term Conditions and Circles

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 wider society.

I'm not sure whether or not a circles facilitator will meet Finklestein's description or not. I think they can certainly get close, but we all know that lifting something off the page and into real life leads to all kinds of surprises. It's something we need to experiment with, and see what emerges.

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