I’ve been on adventures and made new friends

Meg who spent five years in a mental health hospital, told an audience of MPs, Ministers and people involved in Shared Lives that we need to see people with mental ill health as “people with a future”, not as a risk or a case to be managed. Shared Lives was her route to feeling human again, “With the support of my clinician, I moved in with my Shared Lives carer in a new town. I was so scared, I didn’t know how to live in the community, but she taught me and she stood by my side. It’s been 22 months since I left hospital and I have achieved so much. I work three days a week, I run a self-harm support group in my town, I’ve been on adventures and made new friends. In January this year, I moved into my own house and my Shared Lives carer still supports me a few days a week.”

Meg’s journey from not being confident crossing a road to speaking in parliament was dramatic. Ali told us that she reads “all the inspirational stories about the amazing things that people in Shared Lives have achieved. And every time I think to myself ‘well me and Chris haven’t done anything like that’ and I feel like a bit of a fraud.” But Chris’ journey to living somewhere he could just be himself, after 19 years in residential care, is inspiring: “It was an excellent home. But there were staff. And there were residents. And there were lots of boundaries, and when Chris wanted to go for a drink in the pub he had to complete a risk assessment.”

“Well I’m not staff. I’m not even sure I am particularly a carer – I’m just me. And Chris is not a resident or a client or a service user, he’s just Chris. And we live together and learn from each other and drive each other mad and maybe, just maybe – though we’d both be far too embarrassed to admit it- we even love each other a tiny little bit.” Chris and Ali’s full speech is here. 

Meg asked us to think about all the most embarrassing things we’d ever done; the things we really regretted. And then to imagine they were all written down in a record we carried with us and had to show to every new person we met, with none of the good things we’d done included. That was what it was like to be within the system for her: never being able to grow beyond her past. Darren told us that he couldn’t remember much about his many years in nursing care: mainly just watching TV. Now he has a busy life with less medication, more exercise and activities, and most importantly, friends, in a household where he felt he fitted in.

We need services which care for people, but which think hard about all the impacts of that care, good and bad. As Ali put it, “I am learning all the time. In particular about how to tread that very fine line between ‘support’ and ‘control’ and how to just let Chris be himself.”

Our thanks to Liz Kendall MP for hosting our event, with speakers Norman Lamb MP and Kit Malthouse MP, all of whom pledged to help make sure our members are valued and celebrated as we try to bring Shared Lives to many more people.

 

It’s hard to know what good is when you have not had it

We held our first ever parliamentary event this week. Our host was Liz Kendall MP, the Shadow Care Minister, who made the Shared Lives carers and people using Shared Lives feel at home and spoke passionately about her support for Shared Lives carers in Leicester and nationally. Liz said, ‘I urge all MPs to investigate Shared Lives in your area and make a difference locally. This is about love, chance, family and choices. The things we all want.’ Care Minister Norman Lamb also spoke passionately about how Shared Lives can change lives and talked about how struck he was when he came into office by the ‘stark contrast’ between the Shared Lives he saw in action and institutional approaches, which had gone so terribly wrong at the Winterbourne View special hospital shortly before he took up his post. Nick Hurd MP, a previous Minister for Civil Society at the Cabinet Office, kicked off the event and introduced our new Shared Lives film, which was originally commissioned by the Cabinet Office and charity, Nesta, for their Centre for Social Action. You can watch it here: http://vimeo.com/108993357

16 MPs came to support us and meet their constituents who were involved in Shared Lives, which was great to see, but the highlight for everyone was hearing from Joanne, Ayeesha and Clare, three talented young women who live with Shared Lives carers Graham and Lorna in a household featured in the film. Clare kindly let us take pictures of the text of her speech which you can see below. Here is what she said:

Hello my name is Clare and I want to tell you about my life with Joanne + Ayeesha + Lorna + Graham + J.J. He’s our dog. It’s a good life.

My life did not used to be a good life.

My life was a disaster before I moved in.

I’m not going to tell you why, that is personal.

It got better when I moved in to Shared Lives.

It got better when I met Lorna and Graham. I was a bit shy at first. It was hard sometimes because I got a bit homesick.

I did not know what Shared Lives was. Not everyone does.

It’s hard to know what good is when you have not had it.

More people need to know about Shared Lives.

They need to know it is not about being stuck in a flat on your own.

It is not about being lonely.

It is about family.

It is about having choices.

It is just lovely.

It is a good life.

My message to you is that everyone should be able to have a good life.

Everyone should have the choice.

Lots of people like me are just told about living in flats.

They be told about Shared Lives.

They should be able to see it.

They should be able to try it.

They should be able to live it.

Everyone should have the chance to have a good life.

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Shared Lives Week 2: this time it’s personal

This week has been our second Shared Lives week. It’s a way for us to spread the word about Shared Lives and dozens of schemes this year have organised local events. At our UK conference this week, Shared Lives carers told us how frustrating it could be to be willing and able to share their family home, and yet to find that, in some cases, they waited years rather than months to be matched with someone who needed support, because front line social workers still don’t understand the model, or even know it exists.

We can’t afford to waste the talents and enthusiasm of people who have gone through the in-depth Shared Lives approval process and are willing to offer so much. It was humbling to talk to Shared Lives carers Stuart and Bobby from Brighton, both former nurses who decided to make the change to Shared Lives because they felt it was better to ‘offer a lot to a small group of people, rather than a tiny bit to lots of people’. They share their family life with people who other services have considered ‘challenging’ but who are living happily with them.

Graham and Lorna draw on their combined expertise of having been a hotelier and a care business manager to offer life-changing support to people who again have been labelled ‘challenging’. They explained how they start every day sitting down with the people they support to discuss the day before and plan the day ahead. They keep animals and grow produce, even supporting one of the people who lives with them to start up her own micro-business raising chickens. 

To spread the word about what its Shared Lives folk are achieving, the Shropshire Shared Lives scheme enlisted the local town crier. As you can see, we have some great pictures of people who use Shared Lives shouting out the message with him. (Frustratingly, the local press photographer was shropshire town criermore interested in the photos he took of a young woman who briefly joined in the town crying. My colleagues explained that, photogenic as she was, she had nothing to do with the Shared Lives story. But the paper still used a picture of her, thus excluding the people who use Shared Lives from their publication.)

Our conference this year was sold out, with around 150 people from across the UK (and one from Australia!) gathering to share their experiences, hatch new plans for working together, and to hear from sector leaders. The event was co-chaired by Haringey’s Shared Lives scheme Coordinator, Andy, who is also one of our trustees with Asif, who is supported by Shared Lives carers in Glasgow.

Asif, who is in his early twenties and originally from Pakistan, explained that English isn’t his first language and that this was his first time speaking to a large audience. That didn’t stop him Continue reading

Searching for simplicity

I gave evidence to the Joint Committee which is scrutinising the draft Bill this week. You can watch the session here:

http://www.parliamentlive.tv/Main/Player.aspx?meetingId=12294. I found watching it back a little excruciating – it was my first oral evidence session and I was fairly nervous – but hopefully managed to get our ideas across.

I also had a really fascinating evening at the invitation of Stepping Out, the spin-outs support organisation which brought together five successful social enterprises delivering health and care services with the care Minister, Norman Lamb MP. The spin-outs in the room gave you a really good sense of what is achievable and the difference which shared ownership and mutuality can make to an organisation. Spectrum Community Health CIC, for instance, has spun out some of the most challenging areas of health care in Wakefield, including sexual health services and health services for offenders and homeless people. The organisations in the room were all social enterprises and all in some way mutuals or co-operatives which had not only shared ownership with employees, but were also exploring how to share ownership with communities, citizens who use health services. We talked about organisations which thrive on the complexity of broken systems, but are bamboozled by the complexity of ordinary humans and their relationships. And we talked about the virtues of ‘not fitting in’, a position which Shared Lives folk can relate to. Perhaps when you are an organisation which doesn’t fit neatly anywhere in the system you can be better at understanding the joins, clashes and gaps between services. Perhaps you can model your organisation around human relationships rather than ossified service systems…. When you start working with people’s families, relationships and communities, you can sometimes find abundance, even if everywhere you look in the traditional service system you find scarcity.

Norman Lamb committed himself to exploring how the draft Care and Support Bill and the implementation of the White Paper could create a space for this kind of innovation, and ensure that legislation, regulations and rules weren’t working against people’s creativity.

Meanwhile, Andrea Sutcliffe, CEO of the Social Care Institute for Excellence, went to visit Newham in London to see the Shared Lives scheme, some local micro-enterprises and the work of our sister organisation, Community Catalysts. Andrea seems to have been very impressed: http://www.scie.org.uk/news/opinion/newham.asp

The right to live untidily

I chaired two lively fringe meetings at the Lib Dems and Conservative party conferences at the invitation of the ResPublica think tank. Both discussed the relationship between choice and making social care personal. Most people at these discussions were positive about the principle of being able to make choices about services. One attendee pointed out that “those with least control or power should have the most choice” and there was concern about the extent to which cut backs in advocacy services were stymieing attempts to redress the power imbalances in our system, or replacing them with new power imbalances and bureaucracies, or even “new lies”, in which people had the illusion of choice, but no new services from which to choose. There was also concern about the “lie” of offering choice without responsibility. Council and NHS Finance Directors remain legally responsible for balancing budgets and are understandably reluctant to create a system in which individuals might be able to make expensive choices which take no regard of limitations on resources.

One way past that impasse is to recognise that a policy of introducing personal budgets and Direct Payments does not, on its own, change the status of people who use services. Discussions can still be about what “we”, the expert professionals, are going to let “you”, the service user, have to meet your needs. Instead, we need to create a system of shared responsibility for the use of resources and this is often done best where individuals are helped to pool budgets, or to come together with community groups, so that there can be a collective discussion about how people will make best use of all kinds of resources, including money, but also including people’s time, and the collective expertise of people who use services, their families and communities. The key to a good life is not just what we choose to receive, but also what we choose to contribute to those around us.

One participant told a story to illustrate how far we can sometimes be from that picture. An older person was entitled to a Direct Payment to buy support. Her pet dog Continue reading