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

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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.

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

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.

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.