The Pictures We Paint

I've been thinking further about the issues I raised in 'The Poet Doesn't Invent, He Listens"

In that post I tried to explain the importance of listening well, and of being accurate and respectful in how we reflect that listening.

I illustrated that post with this picture by Jean Cocteau: "Beauty and the Beast", and promised to talk further about some of the questions it evokes in me.

It's a powerful and quite disturbing picture. Many people violently dislike it, others find it intriguing. I think part of Cocteau's intention behind the image was an attempt to illustrate his maxim that "artists make beautiful things ugly".

What I'm getting to, is the point that people who work in health and social care services routinely paint pictures of the people we support too. These pictures are given all kinds of names like "assessments", "pen pictures", "incident reports" "support plans" and "care plans". The brushstrokes such pictures use tend to be devaluing labels and diagnoses, and while art is about capturing both light and shade, such pictures all too often focus entirely on the negative aspects of people's lives. Their weaknesses, their inabilities, their needs, their challenging behaviours. They fail to capture key aspects of who the person actually is to the people that love and care about that person. It's as if the artist instructed by Cromwell to paint him 'warts and all' had just painted the warts. They thus make beautiful things ugly with all the routine banality of bureaucratic paperwork.

The language we use about people reflects deep assumptions. We brand people as 'service users', a term that reflects their role as consumers of services and resources, but ignores their role as potential and actual contributors to society.

There's a theory that what we inquire into expands. The harder we search for faults and inadequacies in ourselves and each other, the more we find. The reverse of this is to inquire into people's gifts, strengths and virtues,  what people like and admire about that person. By mindfully searching for these, we can also help other people find them, and see the person in ways that they might not have managed to before.

I think it's interesting that Cocteau places himself in his picture, engaged in the act of painting, as well as the sitter, and even the person viewing the picture. I think he's arguing that every picture reflects the artist as much as it does the subject - the portrait is something that has been co-produced by the painter and the painted, and also by the person who is viewing the portrait because of the interpretation they bring to the image.



John O'Brien made a similar point in one of the trainings I was privileged to attend. He mentioned the tendency for person centred plans to reflect aspects of the person facilitating them, plans facilitated by a particular person might focus much more tightly on getting a person into paid employment, reflecting the importance that that particular facilitator attaches to employment, without any conscious direction by the facilitator. 'What do you think of that?' John asked. It's hard to give an answer, it seems like just something that happens, but it must be welcomed if a passion to find some of the potential and capacity that exists in a person helps overcome a little of the underestimation that has been built into every previous picture we've painted of that person.



Cromwell demanded that he be painted 'Warts and All'
What if the artist had only painted the warts?







People who aspire to person-centredness in their practice therefore need to think about the pictures we are painting of people with our own words, and the techniques we are using to create those pictures. We need to ask, "Who is this picture for?", "What aspects of the person do we wish to discover?", "can we discover this person's gifts and strengths and lay them out for others to find?" It does not mean ignoring people's support needs, it means searching for what makes the best support, support that enhances people's gifts, that matches up with what is important to them, that reflects the direction they aspire to in their lives.



When we go back to the reports that were written about people 20, 30 or 40 years ago we wince at the language and the devaluing assumptions that riddle these outdated portraits and dread to imagine the grey and restricted institutional lives these descriptions condemned people to. We pass judgement on the people that wrote them, forgetting that they were simply reflecting the training they received and the values that motivated services at that time.  How do the words we use impact on the lives of people we support today? How will the plans and descriptions we're writing with people now reflect on us in years to come?

7 Billion Hearts

According to some statisticians, the world's human population will reach 7billion on October 31st 2011. Others suggest it will be March 2012, but both are really the boldest estimates based on the flimsiest of guesswork.

It's been suggested that the rise in the human population is a big problem, a whole host of neo-Malthusians are lining up to suggest that this many people inhabiting our globe can only be a bad thing, to demand programmes of 'humane population control' and to suppress this human urge to procreate ourselves.

We must not confuse a wish to get rid of poverty with a wish to get rid of the poor. We need to reject a fearful view of our own species. Trying to artificially supress reproduction is deeply damaging to society, as the experience of India and it's transistor radios, or China and it's one child programme shows anyone who cares to look.

Despite the scaremongering, there are ample world resources, if we're prepared to think together of ways to use them less wastefully and more efficiently and fairly, and in tune with our environment.

Every human being is another set of hands ready to work productively for our world community, and our productivity has gone up at least 11 fold in the last 200 years - there's no reason why this increase cannot continue, because as well as our capacity to labour, we also all have a tremendous capacity to think, to use our brains to solve the problems that living together on our planet present to us.7 billion people means 7 billion minds that could be applied to solving the problems that collectively face our species.

The resources are there, if we have the wit and the will to release them. Just cutting the amount that the world spends on arms by 25% would mean we could feed, house, clothe, educate and provide healthcare to every single individual on this planet to the highest standards. The problem really is not too many humans, the problem is too little humanity.

Two of the key skills we'll need to cultivate if we are to find ways to generate creativity, accelerate our productivity, redistribute our resources fairly, is firstly the capacity we have to listen well to each other, and secondly the capacity to think respectfully together, across the boundaries of language, culture and traditional enmities. The UN campaign '7 billion actions' gives us the tiniest taste of the kind of things we could achieve through such consistent mindful dialogue.

What will motivate us toward such change? As well as our 7 billion minds and our 14 billion hands, we have 7 billion hearts. Human beings have evolved as social animals, that have cared for each other and held our communities together through bonds of love and duty to each other, let's also cultivate our hearts, our compassion for each other and our will to achieve dialogue, justice and peace among our 7 billion strong family.

Hardest Hit Protests

People with disabilities were protesting all over the country today at the range of cuts in benefits and social care provision affecting them.

According to the press association, the numbers nationally came to over 5000.

Here are some of the best places to get reports and information about what went on:

Youtube of a speech from Bristol:



A blog by ddom on the Bristol demo.

The text of Susie Jones speech at Manchester hardest hit rally.

Granada reports on the Manchester rally

Photos from Manchester by Christine Burns

Graeme Lamb Media on the Manchester protest

Report from Edinburgh by 'Acronymphomania'

Hardest Hit demo Leeds
Photo by Lucia

Photoset from Edinburgh by Chris O'Sullivan

The Edinburgh Reporter's Account

Marching past the Grainger Market in Newcastle

Photos from Newcastle by CarerWatch blog
Police estimates put the attendance at Newcastle at over 1000

ITV Anglia report from Norwich

Great photo from Norwich by sas astro

Pseudo Living Blog from Birmingham

BBC Report from Birmingham

BBC Report from Cardiff

Here's the official page of the Hardest Hit October Action.

Serendipity (Lucia) sent me these photos from Leeds

There were also marches in Sunderland, Brighton, Nottingham, and Belfast, not to mention London.

People are just arriving home now and starting to write their blogs and upload their photos, if you want your material included in this list, just send it to me: maxlorraine AT coolgoose DOT com, or tweet me.

The BBC report of the protests

The Guardian report of the protests

Finally here's a great chant from Wigan and Leigh People First:

Carnival of Personalisation (In Health and Social Care): #1 Love Life and Work

A blog carnival is a regular roundup of what the best bloggers in a particular field have been talking about over the previous few weeks. It's a way of grabbing a snapshot of the online conversations that are going on, catching up with news, building up precious linkage (which every blogger craves), finding fresh and new ideas from the freshest and newest blogs and perhaps creating a community of those bloggers who write about a common topic.

Freud said that love and work are the cornerstones of our humanity, so I'm starting this blog carnival with a great blogpost about love and the things doctors say:

Love

Dave Hingsberger's writing has interested and inspired me for a long time. His work on communication with people with profound disabilities is so warm, human and clear. His talent as a storyteller makes his ideas so powerful. I was really pleased to find that Dave now has a blog, and that he is continuing to write with the same power. Today he is writing about his own experience as a person with a 'late onset disability'. This post in particular is so touching The Doctor Thankfully Got It Wrong:

He'd taken my pulse, which he did ever single time he came to see me. It was as if he had to be reassured that I had indeed lived and that I was indeed going out into a future. As he was noting the rate of my heart, he opened my mouth and broke it. "You need to prepare yourself for what comes next. Most couples do not survive late onset disability." And then he was gone.


As his words found there way into my heart and mind, I lay there completely traumatized. It was like I'd had my breath punched out of me. My aloneness, something always present in every life, took hold of me. The doctor was gone so I couldn't protest. I couldn't shout out that we'd been together for nearly forty years. That I was sure, really sure, that it was not, would not be, over. Instead of shouting out, I shouted in. Like I wanted to shout down the specter of a Joe-less life, a Joe-less future.


I don't know if what the doctor said was true. I do know that what the doctor said was cruel. I now know that what the doctor had said, about 'us' was simply wrong. I had no cause to fear. But I did not know that then.

Picture by Alistair Muir
Unicorn Theatre's 'Something in the Air' show

Theatre

Saba Salman writing in 'The Social Issue' talks about the hard campaigning work that led to a major event at London's Unicorn Theatre around 'Autism Friendly Theatre', and the possibilities of opening theatre up to many more people:

While the mind boggles as to why this kind of large-scale theatre industry event hasn’t happened before and why it took pressure from a parent campaigner to mount, it’s better late than never. The great practice and partnership that exists needs to be widely shared, so the work of the most accessible and inclusive venues trickles down regionally and locally, reaching beyond the big towns and cities that boast the biggest venues.
If the theatre sector debate translates into visible action, people with learning disabilities and their families can see shows they love without paying through the nose for a half empty box, going out of their way to attend midweek matinees which tend to be less busy and therefore often less stressful or – worst of all – having to leave before the end, either by request or because they feel unwelcome.

Personal Budgets

Ermintrude2 is a social worker with great experience in implementing personal budgets. In her recent blogpost Personalisation, personal budgets and Demos she uses thinking from her own experience to wholeheartedly back Demos author Claudia Wood's opposition to a 'one size fits all' approach to personal budgets, and recommends much more diverse and inclusive approaches, pointing out that there are at least 6 different ways of managing personal budgets:

If Claudia Wood were in the same room as me, I would applaud her... I want to deliver more personalised services but the only tools I have been given within my local authority are direct payments (or indirect payments) or care managed fund. All these other options have been theoretical and none have developed any flexibility.

She concludes her piece with a useful glossary of the confusing set of acronyms that have grown up around personalisation. I think this is really good practice in blogging in this field, which is acronym-heavy and light on clarity.

Engagement with Policymaking

Another example of good practice is the video blog. Video is such a direct means of communication and we need more of it. David Behan uses it to good effect in introducing the six main themes of the governments 'Caring for our future' engagement exercise http://davidbehan.dh.gov.uk/caring-for-our-future/ These are:

1. Increasing quality and supporting the workforce
2. Increased personalisation and choice
3. Ensuring services are better integrated around people’s needs
4. Supporting greater prevention and early intervention
5. Creating a more diverse and responsive care market
6. The role of the financial services sector in supporting users, carers and their families


It's important that people with a stake in health and social care services and particularly the people who use those services make their views known to the government on all these points.

In 'This is my truth' Danny Eggar calls on the government to listen before they make the struggle even harder:

I have claimed Disability Living Allowance (DLA) since I lost my sight in 2004, and it has been a major help to me. Recently, I was moved on to the higher rate of DLA. It helps me a lot as I use my DLA for public transport, help towards living such as rent, Council Tax and other bills. My concern, if the proposed welfare reforms are brought in, is that if I was still unemployed and taken off DLA, I would struggle to afford to live independently as I would not be able to run my flat on my own. I would also find it hard to use the train service as it would cost too much money.
I think the Hardest Hit campaign is vital, as it is demonstrating to the Government the concerns that people have about the loss of Disability Living Allowance. It would not only affect me, but thousands of other people in theUK, struggling to find employment and to live as independently as possible. If these cuts were made, it would mean a backward step for each individual currently on DLA.
I would urge everyone to support the marches and rallies happening across the UK on 22 October; as it is important we get as many people as possible to voice their concerns to the Government, and show how their everyday lives would be affected by the changes that may take place.

Individual Service Funds

Frances Brown and Simon Duffy from the Centre for Welfare Reform have brought us a practical example of how Using an Individual Service Fund has helped a family live and overcome some major challenges for the last 14 years.

The Individual Service fund allows the family to determine when they get support how much support they get and they manage all of this on a day to day basis. They have continued to plan around Roberts needs sharing dreams and hopes for the future and using the Individual Service Fund creatively to achieve these:

This very individual arrangement gives the family the control they need and want over who supports their son, how they spend the budget and allows them to balance their son’s needs with their own needs. They have all the control, flexibility and choice they want without some of the anxieties and stresses of managing the money directly and being an employer. Robert has thrived and continues to live a full life at the centre of his loving family.

Life in a Group

One of the problems for people living in supported living, is that they usually have little or no choice about who they live with. Too often their homes are seen as 'schemes'. Jill Faber writes in HSA Canada's blog about how she is designing a person centred strategic planning approach for group living:

Many of my co-workers were skeptical when I proposed person centred strategic planning for the group liiving program. It would gives us an indication of how and where people actually want to live, by which we could make plans accordingly. "Would it really be person centred?" "You are going to get people's hopes and dreams up"

Others claimed, "Nothing can be done, this is the way it has always been". I was told that the people living in the group homes were basically prisoners of their own circumstance.

I believed the only circumstance that people were imprisoned by was that which we had created. I knew we could do better...

Oversight of the Social Care Market

The Centre for Better management in health and social care look deeper into a topic that I covered myself a couple of days ago: Oversight of the Social Care Market. They're concerned that the government discussion document only considers oversight important in the case of organisations like Southern Cross that are almost 'too big to fail', while maybe ignoring those 'too small to matter'. Like my own article, they call for more power to be given to the end user and for co-productive approaches to oversight: 

I wonder if there are already some of the solutions before us. Models that are based on co-ownership, stake-holder capital and personal budgets may provide ways in which the huge expenditure on care by residents and the state buys more than a temporary presence in a transitory enterprise. Ways in which long-term rights and a genuine pooling of risk between citizens, providers and the state need to be created. This will provide the long term stability and quality that frail elderly deserve.

One Page Profiles

'Think About Your Life' is a blog about how people with cancer, and similar conditions, can use person centred thinking tools to think about their life and supports. Their latest post explores how one page profiles can be used to hold key information in one place, to share with the myriad of professionals and carers that people encounter:

The one page profile pulls together a lot of information that is really helpful for everyone to have that is with you on the cancer journey: family, friends, nurses, doctors, and possibly co-workers. It may also help to have copies of this to email out, post on your blog or hand to people as an update of your journey without you having to retell your story over and over.

Work

I started with love, so it fits Freud's maxim if I end with 'work'.

Helen Sanderson blogs about a new book she has co-written with Nicola Gitsham, Linda Jordan, Jaimee Lewis and Freya Elbaz, which explores not just why only 6.4% of people with learning disabilities have paid work, but also investigates the success stories, trying to discover exactly what has enabled those people who have managed to thrust themselves into work ('finding a job' sounds much too passive) and prove that people with learning disabilities can contribute as part of the workforce:

We are learning through the push for personalisation and the continued implementation of person-centred approaches in children's' and adult social services that unless employment is very high up on the agenda, young disabled people just don't get jobs. Our experience of working with young disabled people and their families across England is that they can and do want to work. We hope this book will inspire and motivate the people that support young disabled people and families that it is positive and possible to get - and keep - a job.

Can there be more carnivals like this?

The idea of a blog carnival is that a number of different blogs take turns to host the carnival, so that each different blogger can give their own take on the best of what's going on on the web, so if you are a blogger that wishes to host a future carnival, let me know, and if you know of a great example of blogging that would be interesting to other readers, let me know too!

There are hundreds of blog carnivals going on out there, but a big gap when it comes to some of the most exciting developments in personalising Health and social Care. I thought that I would grab the initiative, and begin something that might fill that gap - hence this first blogpost of the carnival of personalisation. If this is something you think should continue, then please consider taking up the baton, and bringing this carnival to your own blog. If you don't want to go to all the bother of hosting the carnival, one very helpful thing you can do is to post a link from your blog back to this one, or share it on your favourite social network.

The Wisdom of Communities

Here is a video to watch, then a story to listen to, where John McKnight talks about what community means. After you've read them, think about how you might help people connect within your own community.

I found them both at the Inclusion Network, which is a community full of it's own strange wisdom, and a warm way of welcoming.


John McKnight; about community

Click here to listen to John McKnight: Sufi Story

Oversight of the social care market

How do we ensure that the social care 'market'
responds to people's needs without leaving them
high and dry when things go wrong?

Picture of Preston covered market is
  © Copyright Andrew Gritt and licensed for
 reuse under this Creative Commons Licence

The Department of Health has issued a discussion paper raising issues about who should have oversight of the social care market, and how. It's in response to the recent disruption caused by the financial crisis at Southern Cross, and to reports by the National Audit Office

The paper rightly raises the role of local authorities, the CQC, and the Office of Fair Trading, and their responsibilities to monitor and steer the market in a way that reflects the needs of the population.

It does however seem to lean too much on 'top down' approaches to oversight, missing the key point that much of social care provision is generally coordinated by large organisations that are still weak in the area of listening well to the people that use those services or involving them in their direction.

There's plenty of room for more 'bottom up' and co-productive approaches to market oversight.

For example, giving people much more access to advocacy, directly through their personal budgets would enable more control by individuals. People could use relatively small amounts of money to ensure that they had full choice over who advocates on their behalf, or to employ people to facilitate the formation of circles of support, or to help them create and review their support plans, and ensure that the services they receive match up with their desired outcomes and what's been identified as good support in their person centred plans.

Deconstructing block contracts and their replacement with Individual Service Funds, and personal budgets, along with contracts between the person and the provider, so that the service is at least as accountable to the person themselves as they are to the local authority would also increase the power of individuals in the direction of their own services.

Finally using coproduction processes like 'working together for change' would bring people that use services, their family carers, commissioners and provider services together to think openly and honestly together about what's working and not working about their services in their own area. Using processes that encourage direct communication between different elements of the system would encourage the adaptability, flexibility and responsiveness to economic, cultural and demographic changes that are right at the root of robustness in modern care and support service provision.

My response to this consultation has therefore been to applaud the extra effort being suggested to ensure oversight of the market from above, but to point out that the key to genuine oversight of the social care market is to shift the levers of power into the hands of the people that use it, working in partnership with local authorities and providers to ensure a social care market that can meet the challenges of the twentyfirst century. Co-production of services also means co-oversight of services.

The poet doesn't invent, he listens

Jean Cocteau's quotation can be found on this page full of poetry about person centredness.

How do poets see and hear the world? I'd suggest they do so very much like everyone else, but they are ready to describe their experience of the world with an honesty, precision and economy that we find beautiful.

Person-centred approaches also require us to listen well, then to endeavour to sum up what we have heard with as much precision and respect for the person as we can. We can't invent, we can't speak for the person, where the person doesn't use words to speak, we're obliged to honestly and carefully make our best guess about what the person is telling us, as we observe their responses to the experiences that they share with us during our time beside them.

This information pack by Nicola Grove and Barbara MacIntosh gives us insightful guidance about how to listen well.

Besides listening, person centred approaches require us to think. Rather than waiting for some 'expert' to bring down an opinion from on high, the person and the people closest to the person are the ones who are called to think together.

Here's a very short and autumnal poem by 'Anteus' that I think gives a taste of some of the experience of people thinking together, sometimes achieving progress, sometimes maybe even transformation.

Strangers

Strangers gather

Seeking fruit among brambles

Leaving together


Cocteau's picture 'Beauty and The Beast' (above) asks all kinds of searching questions about the role of the artist. It also suggests to me all kinds of questions about our own role and responsibilities when we're creating person centred descriptions with the people we support. I'll return to this topic soon, so watch this space.

The power of stories

Robert McKee says that stories are the most powerful way to put ideas into the world today. When Michael Smull visited Central Lancashire, he too talked about the power of '5 minute stories' as an educational tool, encouraging us to reveal how important the issues we are talking about are by relating them to the real experiences of real people.

In my work promoting person centred thinking and planning, I've found that to be a fundamental truth about how to get your message across. What really helps people understand an issue, is when it's attached to a human being, with a personality and a back story.

That's why Mencap's campaign 'Death By Indifference' was so strong. The harrowing tales of 8 people who encountered a wall of indifference when they had to use British hospitals, indifference that resulted in their tragic and unneccessary deaths. The statistics had always been there for everyone to see, but it took personal stories to bring what was known by people with learning disabilities and their carers to the attention of the wider community.

I used the 'Death by Indifference' stories in a recent lecture I gave to some social work students at UCLAN last week. They were genuinely shocked that this could even happen in our NHS. They each looked at an individual case study, thinking about what went wrong, and why, then thinking about what actions might have prevented the tragedies. Relating the issues in this way meant we were able to have a wide ranging discussion about the work of learning disability teams, hospital champions, hospital passports, health action plans and communication charts and guides.

I felt however that it would be unbalanced simply to regale the students simply with negative and perhaps discouraging stories without offering them some alternative. I know academia is all about analysis and criticism, but it should also be a place where creativity and constructiveness are nurtured. So I searched out this story about Maureen on Helen Sanderson Associates website, a simple story about how with a little bit of persistence and determination, a person's supporter was able to persuade a nursing team on a hospital ward to use a communication chart to listen much better to Maureen and her needs, and to explain the care they were giving her better. This simple breakthrough in communication enabled Maureen to trust them and finally start to benefit from the care they were giving, possibly even saving her life.

I could almost sense the sigh of relief as the students read her case study.

In their feedback, the students told me that they felt much more motivated by their encounter with these stories to continue with their course, that it was encouraging that sometimes quite small and simple changes can make an enormous difference in the outcomes that people experience.

Given yesterday's report from the Care Quality Commission about the way acute hospital care is failing so many elderly patients, perhaps there is a lot that can be learned by many people in health and social care from stories like Maureens and applied in our hospitals. Sometimes I feel with the NHS that the politicians are focussing on the wrong issues. The really big task in our NHS is to find ways to change entrenched attitudes to disempowered people, like people with learning disabilities and the elderly, helping everyone involved remember that these people are the experts on their own lives, and enabling these people and their family carers to have a direct say and involvement in how their care will work.

So that's my story about the power of stories.

Welcome to Human Thinking Together

Welcome to Human Thinking Together.

The purpose of this blog is to record and share thinking, actions and learning around the everyday work of overcoming the forces of exclusion and devaluation that affect so many human beings.

It seems like a daunting task, but this work is occuring in the everyday lives of every excluded human being,  and among the people whose lives they touch, because the very act of existing presents a continuing challenge to structures that exclude and ignore. Around the world, over the last few decades, a movement has been growing that is consciously aiming to support this work by acting for change in the structures and attitudes that lead to the devaluation and segregation of human beings.

This movement is bound together by a shared commitment to people's rights as human beings, to inclusion, to valuing people, to appreciating what people have to offer and to learning the support that people need to express these gifts, so that they can achieve their full potential, and take their rightful place in the community as a contributing citizen and a valued friend. We sum up these ideas and values with the term 'person-centredness'.

Achieving the change implied by these values requires different kinds of work.

We will need to change the way human services work. Current efforts at 'personalisation' are the beginnings of redesigning the way services are delivered so that they meet people's needs by putting the person much more in control of their own support, but if these changes are confined simply to how services are paid for, they will not deliver the much more fundamental change that is needed, we also need to change how services think, and challenge  limited expectations and underestimation of the potential lives and contribution of people who use such supports, as well as limited expectations and underestimation of the potential that exists within communities to welcome and benefit from the presence and participation of previously segregated people.

One of the key aspects of this work lies in changing the ways we meet and think together. This is why the blog is called 'Human Thinking Together'. We have learned that the deepest changes happen when people who provide and commission services, and people who use those services and their allies climb outside the socially demarcated roles that trammel their thinking, and meet together at a human level, to think, act and learn together. We call the means that help people meet together and think in this way person-centred thinking skills and tools.

Over the next few months and years, I'll be using this blog to share my own thoughts on the work of this movement, along with news and ideas, particularly on what's happening in my own area, Central Lancashire, as part of a wider movement across the UK and across the world. The emphasis will be on the word 'together'. Your feedback as a reader will be really valued, so please use the 'comments' button liberally, to share your responses to blogposts, suggestions for links and improvements, ideas for further postings. Together we can build a good blog, and together we can build great lives in a welcoming community.