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.

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

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].

New speaker: Simon Stevens

I’m delighted (and a little daunted) to announce that Simon Stevens is to speak at the launch of my book, A new health and care system: escaping the invisible asylum. The registration details are above and here. We have also now opened registration for the Northern launch event at Manchester Metropolitan University with Jon Rouse (Greater Manchester Chief Officer), former shadow Care Minister, Liz Kendall MP and Prof Sue Baines. Simon says of the book,

This is a profound and timely call for a different relationship between people and the services and institutions of the welfare state. It’s a radical and necessary call to arms for a more human, personal and connected society.