Creating a groundswell

This is a guest blog from my colleague Anna McEwen:

At a Transforming Care conference organised by NHS England BILD in Sheffield,  I was delighted to deliver a workshop along with Shared Lives Ambassador James Rossborough and his Shared Lives carer Andy Cooke who are now a seasoned duo and brilliant advocates for Shared Lives.

As an ex-learning disability commissioner, I’m saddened by the lack of progress that has been made around the country since the atrocity of Winterbourne View.  Many of the challenges we heard about today are the same that we were talking about six or seven years ago in local authorities.  But what we did see and hear today was that, for some people, life has changed dramatically and that there are some really positive stories about areas doing things differently and empowering people to leave hospitals and institutions and live in the community.

I was heartened to see an agenda that started with people, not professionals; two of the three keynote speakers being people with learning disabilities or parents.  The conference was also co-chaired by the brilliant self-advocate Karen Flood, who made a great double act with Fiona Ritchie of Turning Point.

No one in the room could have failed to be moved when Carrie Grant (yes, the Carrie Grant off the tv!) spoke. Carrie is a mum to four children with special needs including two autistic daughters and one who has ADHD.  All have differing needs and have slipped under the radar, as is so common in autistic girls who very often turn to self-harm and even attempt suicide in too many cases.  How she leaves the house every day is nothing short of a miracle, let alone work, support other parents locally, deal with ‘professionals’ and school all on top of supporting her own children in four very unique and different ways.  Remarkable, as are all those families out there who are the real experts along with their children or family members and are best placed to work out how best to support them.

A couple of Carrie’s reflections were really powerful. Firstly – why are we sweating the small stuff? Why is our system trying to make young autistic people conform or ‘fit’, and excluding them if they don’t?  Do the small things (e.g. wearing school uniform) really matter that much that they are worth excluding young people and denying them the ability to learn with their peers? When we know what the implications can mean for those young people why do we continue to squeeze them all into the same mould?

The second, when asked what her priority would be for the next year in Transforming Care, Carrie said ‘creating a groundswell’ – creating a voice and movement that really starts to see parents and families as leaders and equal partners with the “professionals”, because until we really do then coproduction is just another tokenistic word and nothing will really change.

I was left thinking that while there are good things that exist out there, the damage done by letting young people down at an early age is irreparable and we must do better.

In our workshop we introduced people to Shared Lives, some for the first time, and shared stories of how people have moved out of hospital and institutional health settings into Shared Lives, changing their lives, physical and mental health for the better. Maybe if we were able to start this process earlier, to introduce young people and their families to Shared Lives carers, we’d be able to support them to develop relationships and stay in the communities they know rather than ship them off miles away and avoid that damage being done in the first place.  One mum in our workshop said Shared Lives is exactly what she wants for her 18 year old daughter, the alternative being hospital because there is nothing else – and what parent wants that for their child?

Anna McEwen is Executive Director of Support and Development for Shared Lives Plus: anna@sharedlivesplus.org.uk

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Still time to escape the invisible asylum

The launch discount for my book A new health and care system: escaping the invisible asylum has been extended until the end of April. To buy a copy for £10, enter the code POANHCS18 in the Policy Press website. The northern launch is at Manchester Metropolitan University’s MetroPolis think tank on 20 March 2018 with  Jon Rouse, Liz Kendall MP & Prof Sue Baines.

Blank sheets or spreadsheets?

This is my blog for the Social Care Future event, which also features here on the In Control website.

The people with learning disabilities who work at human rights organisation CHANGE pointed out to me once that people who have a learning disability are the only group of oppressed people who are routinely excluded from what should be their own civil rights movement.

I am keeping this in mind while thinking about what I and Shared Lives Plus can contribute to Social Care Future, which will run in parallel to the annual National Children and Adult Services Conference in Manchester this year.

Fully coproduced events start with a blank sheet of paper. That’s the best way to produce something like a neighbourhood plan, where the resources to be used are largely those that the participants bring themselves. It can be problematic, though, for making plans to change services and systems, because there can be a disconnect between what emerges on the blank sheet of paper, and what is already written in seemingly indelible ink on the spreadsheets produced by those systems. Conversely, if you start with the services and try to rethink them, it’s hard to get further than a few tweaks, because those pre-existing conditions seem so restrictive.

The Total Transformation model published by SCIE, PPL, Nesta and Shared Lives Plus includes an approach to local change which attempts to find a middle way between pure coproduction and narrow service redesign. The tool identifies five areas in which support and health services impact upon people’s lives and for each, identifies at least one innovative model which can demonstrate good outcomes and lower costs. The five areas of work are:

  • Support in your own home
  • Support with accommodation
  • Day activities and employment related-support
  • Support with leaving hospital
  • Whole-community work

The model suggests having a conversation with citizens about each of the five, which starts with ‘What does a good life look like for people using support of this kind?’, which is honest about the state money currently being used and what those budgets are expected to be in coming years, and which looks at what people like and don’t like about current local approaches, as well drawing no the models with a national evidence base. To be useful, any conversation of this kind needs to arrive at decisions about what share of resources (state money, other kinds of funding, people’s time and energy, community resources) will be put into which kinds of model. This will usually include agreement about reducing time and money spend on some things, to increase it in others.

Think Local, Act Personal’s ‘Asset Based Area’ approach broadens things even further: looking well beyond social care or even services in general, to suggest ten changes that local areas would need to pursue to become ‘asset-focused’ in everything they do.

We need, I think, to have those kinds of conversations at national level too. Could those areas which have started to use the Total Transformation or Asset-Based Area approaches, or other change approaches which have similar goals, share their experiences and their decisions at Social Care Future? Could we identify the features of future support services and systems which we want and don’t want?

In my new book, A new health and care system: escaping the invisible asylum, I argue that we spend so much time tinkering with the big organisations we already have, that we ignore what I see as the most pressing question about the services they provide: what kind of relationship should people who access support and people who offer support have with each other? At present, I think it’s the wrong relationship: starting with proving one party’s needs and dependency, whilst often assuming the other party can do more than any paid professional really can. Not really a relationship at all: a series of brief transactions between a stream of strangers. That can be ok if you have a very specific problem which is quickly and easily fixed, but most people approaching services don’t: they are trying to live well with one or often more long term support needs. They are looking for mutually-respectful and trusting supportive relationships with a small group of people who are in it for the long haul. They want those support relationships to fit with the long-term relationships they already have with family and friends. Models like Shared Lives and Homeshare, which we support and develop at Shared Lives Plus, work in that way by enabling people to choose and build long-term relationships as part of building family and community life. Other models share that approach and I believe that nearly all parts of the health and social care system could try to work in that way.

So perhaps Social Care Future could help us identify not just ‘good’ models to grow (and perhaps some failing models we would like to see less of), but also the behaviours and relationships we expect of every kind of support service. In turn, we would have to identify what we (citizens, families, communities and community organisations) are willing to invest in making that social care future a reality.

Escaping the invisible asylum

The video of the launch event at Nesta is here. NHS CEO Simon Stevens begins the event by talking about his early experiences of being an NHS trainee, when his new boss thought it would be a good learning experience to admit him to a psychiatric ward so he could experience what that was like first-hand….

Huge thanks to Nesta for generously hosting the event, and Halima Khan who chaired it wonderfully, to everyone who braved the snow to attend and to the Policy Press team who believed in the book and made it possible.

There is a northern launch event with Jon Rouse and Liz Kendall MP at Manchester Met University’s MetroPolis think tank on March 20th – see link in the post at the top of the page.

Launch day

After four years of writing, editing and re-editing, my book is finally published today, and launches in London thanks to the generosity of Nesta who are hosting the event, at which NHS CEO Simon Stevens is also speaking. We’re going to lose some out of town attendees to the snow, but so far London’s transport system seems to be holding up fine and we’re going ahead. If you are not able to be there, there will be a live stream from just before 6pm on this page of the Nesta website. The stream will then stay on that page. Here is the beginning of my blog on the Policy Press website about the book:

The NHS was designed in the 1940s for brief encounters: healing us or fixing us up. It often does that astonishingly well. But now 15 million of us (most of us at some point during our lives) live with long-term conditions; three million with multiple long-term conditions. We cannot be healed or fixed, we can only live well, drawing on state support relatively little, or live badly, drawing on state support heavily and falling repeatedly into crisis. That long term, increasing reliance on intensive support services is not only likely to feel miserable to us as individuals and families, it drives long term financial meltdown which will bankrupt our service economies, even if they survive the current period of austerity.

So we need a different relationship between people with long term conditions, their families and the services they turn to for help. But health and care leaders continue to talk and plan as if the health and care system was fixable by streamlining what we currently do, integrating various kinds of organisation, or making better use of tech. This is because, whether we use public services, work in them, or lead them, we remain locked into seeing people who need support as illnesses, impairments, problems, risks, not as people who can and must share at least some of the responsibility for their own wellbeing. We do not recognise that people who live for years or decades can become more expert in what works for their wellbeing than many of the professionals who necessarily dip in and out of their lives. Family carers provide more care than the state, but even they are not recognised as vital members of a wider caring team, who might need knowledge, training, equipment and emergency back up just as much as their paid colleagues.

To unpick this [carry on reading the blog and also Edward’s Shared Lives story here].

Poacher, gamekeeper – or partner?

Following recommendations made by the Joint VCSE Review, The Kings Fund has produced an important report on the different ways that NHS and council commissioners view not-for-profits (VCSE organisations) and the impact of those views. To caricature the report a little, there is a spectrum, from commissioners who see VCSE organisations as fairly disposable support providers, to be funded with spare cash when they can, to commissioners who want to co-design health and support services with local people, and recognise that they need to see their local charities and community organisations as the way to engage people in doing that. The consequences of those different approaches are profound. They also have ramifications for the new Integrated Care Systems which are planned as the latest ways to join up health and care and which follow on from recent health planning processes (‘STPs’) that rarely involved local people (and were labelled ‘secret cuts plans’ as a result). The report says,

“Changes to commissioning may raise more challenges for successful co-production. As integrated care organisations develop, it is unclear who bears responsibility for supporting and developing community assets. There is a risk that more transactional approaches could
develop in the absence of clear incentives to involve VCSE organisations in co-producing commissioning intentions.”

If we want a genuinely transformed health and care system that not only fits together itself, but also fits with people’s lives, we need health and care planners to see their local civil society organisations as co-designers, and to challenge those organisations to reach and engage groups and communities that have historically been excluded and poorly served.

Dressing up

Steve Scown, the thoughtful and  reflective CEO of progressive not-for-profit care and support provider Dimensions, wrote today about the thorny issue of supporting people to make choices, when the choices they make might seem to be harmful to them. Steve contrasts his own life, in which his wife would vocally object if he tried to make the unwise choice to live off a diet of chips, with a support scenario from one of his services, where an adult who has a learning disability wanted to wear his batman costume every day, but hated the ridicule he got when he went out in it. He was becoming afraid to leave the house. The man had the mental capacity to make his own choices, so the staff supporting him “had concluded they had no option other than to support George to wear his favoured outfit.” Their role was to support him to choose not to make choices for him. The staff later found ways to help the man re-frame his choices and to focus more on his goal of not being ridiculed, than his desire to wear his unusual costume.

Steve’s point is that ‘choice and control’, applied blanket-fashion, is not likely to lead to great support. I think his point is well made and his conclusion reasonable: that care providers should learn to live with ‘complexity and ambiguity’, bringing a thoughtful and nuanced approach to “inform our risk assessments and …. best interests meetings”.

So I don’t disagree with anything Steve said, but I would like to delve a little deeper into what I would see as the underlying issue. For me, the challenge with supporting the Batman fan, and the difference between his situation and Steve’s, is perhaps the kinds of relationships in their lives. In other words, not a challenge with the quality of support, but with what we mean by support. I don’t know the man in question, but what he appeared to lack was a circle of friends to help him make choices. Dimensions is a great provider and I’ve no doubt that the workers supporting him did their job well, but their roles can never be a replacement for the friend or partner, who is a position to say, ‘You’re making the wrong choice’, because the person they are talking to is equally in a position to say, “I’m doing it anyway’. A Community Circle could help with this.

If the man was living with his family, they would have something to say about his choice of outfit, but would likely talk quite a different language to that of a service. In turn, any professionals in contact with the family would take a different view of that family’s choices to those made by fellow professionals. If the family had said ‘no’ to batman, some professionals would wonder if they were ‘controlling’. If they did not object to it, or they had learned to live with it, those same professionals might accuse them of infantilising the man, or blocking his development to independence. I mention those possibilities, because we have a tendency in service-land to bring our ‘professional’ lens to people’s lives, whereas for me there is a strong argument for services to try out the perspective of family life in considering this support challenge.

In a Shared Lives household, the relationships are somewhere in between those of a family, and those of a support service, which means that a Shared Lives scheme would probably find that situation just as complex and ambiguous as Steve’s organisation, but it would also offer a different way to look at it. When someone has chosen to live with a family as one of the household, particularly for many years, members of that household tend to approach offering advice more as they would for another family member, than as a professional working a shift. The man might need to make a choice between wearing his outfit and, say, going with the Shared Lives carer’s son to the football, just as any of us have to consider the extent to which we are prepared to moderate our particular choices to fit with those of our friends. A really great Shared Lives carer might also help the man build a circle a friends who were into comic conventions and cosplay: seen through that lens the man’s outfit choices are no longer age-inappropriate per se, it’s just a matter of the right time and place…

I’m not suggesting that Shared Lives has all the answers to these complex situations, but it does seem to me that Shared Lives, and the norms of family life more generally, offer a way to approach differently situations which in service-land we frame as being about risk assessment, mental capacity and independence. We could instead recognise that our main challenge is to help every individual to form and then navigate the personal relationships which we all need to live well. Services can never offer or replace those kinds of relationships: when we try to imitate them, we are just dressing up.

Thanks to Steve Scown (@SScown) for his thought-provoking blog and for inviting debate on this important subject.