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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Safe, shared lives

This is a guest blog from one of our newest colleagues:

I’m Natalie and I currently work for a national domestic abuse charity called SafeLives; having worked in the domestic abuse sector for over ten years, I’ve just been seconded to Shared Lives Plus to work on a new domestic abuse project. Funded by the ‘tampon tax’, we’re going to be working in partnership over the next two years to provide an alternative accommodation option to victims and survivors of domestic abuse. We know that housing issues can place a massive barrier in the way of victims, either when trying to leave an abusive relationship or when trying to move on from previous abuse.

Unfortunately, domestic abuse is prevalent; one in four women

Read the rest of this blog at www.sharedlivesplus.org.uk

New ways to share your home

The Guardian featured Shared Lives and Homeshare as part of a story about ways to share your home. This is an extract from the full article:

Before he moved in with Alison Cooper, her husband Gary and their 21-year-old son William two years ago, Jonathan, 43, who has autism, would spend his days roaming Taunton. He was living with his elderly parents; living with peers hadn’t worked out, and he had unsuccessfully lived alone for a while – cooking is beyond his ability, and he was living off ready meals and takeaways, which was affecting his health.

Alison, 52, who works with people with learning disabilities, heard about Shared Lives; she and her family had hosted international students for years, but this seemed like the chance to live with someone more permanently.

Now, Alison says, Jonathan is happy and settled, spends two days a week at a day centre and works two days a week in another one. “His confidence has grown. Before, if he had to have a meeting with a social worker, he would write things down rather than talk to them, but now you can’t stop him talking.” This year he says he wants to go on holiday, which he’s never said before.

It has been a rewarding experience, Alison says. Did she worry it would change the dynamic at home? “I did. It has to be something the whole family wants. But now there’s no changing it – Jonathan is part of the family.” He visits his parents at weekends, but also spends a lot of time with the Coopers. “He knows we’re not just caring for him, he’s living his own life.”

Andy Marsland lives with George Oprișanu in Heywood, Greater Manchester

Andy, 67, had lived alone for 14 years before George moved in last August; he had become ever more isolated following his divorce 20 years ago, and particularly after he retired as an overhead line supervisor. “I sat in front of the box all day,” he says. Social workers from a local social enterprise called PossAbilities suggested Andy take part in Homeshare, which links up lonely older people with young folk who want cheap rent, and which is funded by Lloyds Bank Foundation and the Big Lottery Fund.

George, 30, chanced upon Homeshare online back home in Romania looking for digs in Heywood, where he had got a job working in the Argos depot. After he was cleared for Homeshare, he and George had a brief Skype chat and agreed to give it a go. He pays Andy £18 a week towards utilities, plus £150 a month to Homeshare, making it a much cheaper option than private rental. “My colleagues at Argos are jealous at how little I pay,” he says.

Under the Homeshare agreement, George promises to spend 10 hours a week with Andy and is to sleep at home at least five nights a week. Sometimes they go out bowling, “though he won’t come any more because I keep beating him”, Andy says. They don’t like each other’s food, so cook separately. But George is learning more English, or at least Lancastrian, such as “Al si thi”, Andy’s preferred form of saying goodbye.

See https://www.theguardian.com/money/2018/mar/10/part-family-strangers-sharing-home

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].

For the Valentines I never knew – reblog

I loved this blog from Rob Mitchell and Elaine James’ Last Quango in Halifax. With author Rob’s permission, here is how it begins:

There’s a song by a band called the Wedding Present which like so many other songs is about falling in love.  It’s called A Million Miles.  It’s about that moment when you meet someone for the first time. The moment when your stomach spins. You can’t eat, you can’t sleep and yet despite this, as the song goes, you ‘can’t even remember the colour of her eyes’. The song connects with that first fleeting moment when a returned smile and a burst of shared laughter on the walk home together means everything. When your world is filled with subsequent endless telephone calls to each other (it was written in the mid 80s before text). It’s about that mad bit. The bit where the massive risk has paid off, even if it’s only momentarily.

I know it’s different for everybody but that song has always resonated with me because that’s how it feels when it happens. It’s a kind of prolonged Christmas Eve of anticipation. It’s mystifying, scary and the most exhilarating experience that you can have. Its the 1000-1 off-chance of a new human relationship that may lead to love and will involve lust and desire alongside, hopefully, some happiness on the journey. The risk you’ve taken was huge. The smile that might be unrequited, the humiliation of a misread signal, the shocking discomfort of a blind date from hell, the deeply personal hurt that comes from rejection if, as may be likely, a rejection is just around the corner. Yet despite that, despite all of that, we felt it was risk worth taking.

Love and falling in love. Seeing people fall in and out of love. Beginning and endings to relationships plays a huge part of our lives. I’ve completed two three year courses on issues around humanity and social care and I’ve completed countless additional training courses but I genuinely cannot recall ever being asked to write about love in any assignment that I competed. I have definitely never written the word love in an exam. I can’t remember a single lecture on love or certainly not one that didn’t medicalise it, or quickly move towards framing love in terms of ‘attachment’ or ‘obsession’. But love and relationships appear to be one clear thing that drives us. We don’t get to choose who we love or we can not prevent unrequited love. It is part of who we are, and can at times lead to terrible sadness. It is the essence of humanity. And yet, it is something that health and social care isn’t comfortable with.

As social workers you would think that our profession would be there when people needed help and support with love – it’s sort of in our job title. But in my career, I have found the most significant block in terms of our thinking about supporting people to experience the love, with all the risk it brings.  I can recall on one hand the number of conversations I have had with people where there has been a positive approach to helping someone with any aspect of having that ‘Wedding Present song’ feeling.

It is particularly stark when it comes to people with a learning disability. Instead of love, I hear about sex a lot.  Read the rest of the blog here.

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.

Ministering to loneliness

This is reblogged from the Department of Health blog:

Doreen, 79, offers one of her spare rooms to a younger person who needs somewhere affordable to live as part of Rochdale Possibilities’ Homeshare scheme.She was interviewed about how this tackles loneliness for older people – and often for their younger housemates too – by news agencies from as far away as Canada.

Doreen said: “I was on my own, I did not like it, and now that I have got Lucile I have someone to talk to, share meals with and someone to go out with. We go shopping, to the cinema, to a pantomime at Christmas and to the market.”

A Minister to tackle loneliness seemed strange to some: loneliness is such a private, personal problem; how could a government department help?

The Minister has committed to adopting the Jo Cox Commission’s recommendations, building on the work of the Campaign to End Loneliness, the Red Cross and others. These include a national strategy, new ways to measure loneliness and the impact of interventions upon it, and an innovation fund.

But it is true that while befriending schemes can alleviate loneliness, there can be no service to cure it: only friends can do that.

This makes loneliness a test case for the biggest challenges facing the NHS, social care and other public services. While our services have never been better at fixing what is fixable, what millions of us now need from them is not to be fixed, but to be able to live well with long term challenges which are as much social as medical.

The World Health Organisation, Marmot and others made the case for the social determinants of health to be tackled nearly 15 years ago, but as budgets stretch, our focus has arguably become more medicalised, large scale and short term, with some local systems seeking to merge or realign big health organisations and systems and hoping to see the results of ‘efficiencies’ in hospital usage and discharge statistics as soon as possible.

Certainly the NHS’s challenges have never been more urgent or bigger in scale, but whilst the large injection of cash which many are arguing for would surely alleviate many immediate problems in the system, loneliness, unhealthy lifestyles, and deep societal inequalities such as the Inverse Care Law, would remain and in fact, may be growing.

The challenge for the Minister and the rest of government then, is to find the space and time to nurture approaches like Homeshare which are small-scale today, but which may be the beginnings of the changes in relationships and ways of living which both people and the service systems they rely upon may need to become the norm in the rapidly approaching future.