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.

 

A Shared Life is a Healthy Life

It’s been a busy Shared Lives week, with local Shared Lives schemes holding events all over the country. The highlight for us was our parliamentary reception, hosted by former charities Minister, Nick Hurd MP, at which Luciana Berger MP (Shadow Mental Health Minister) also spoke, along with Cllr Richard Kemp (LGA Lib Dem Spokesperson on Health and Social Care), Chief Inspector of Social Care Andrea Sutcliffe and two of our new Ambassadors, Dipan and Paul. We launched this new report on the impact of Shared Lives on people’s health, with a foreword by NHSE CEO, Simon Stevens and a new short film on the same subject, featuring Pauline, Joe, Karen and Robert, who spoke afterwards about what Shared Lives means to them.

Sally Percival, a parent and co-Chair of Think Local, Act Personal, who was one of a number of TLAP colleagues at the event, said:

Talking to the Shared Lives carers and even more importantly listening to the people who live in Shared Lives homes share their positive stories of happiness, fun and personal growth made me believe that as precious as my children are, this is the type of home-from-home living that we would consider right for them. That has never happened before and gives me hope for the future. Before learning about Shared Lives, I just assumed they would be living with us forever and that’s really not healthy for any of us.

Relationships are the key

Time for another guest blog. Here is our Director of Support and Development, Anna McEwen, reflecting on Shared Lives week after exactly a year with us –  a year in which she’s had a huge impact upon our work! So Happy Anniversary to Anna, who writes:

It’s very timely that Shared Lives week 2014 includes my one year anniversary of working with Shared Lives Plus!  For me, the year has flown, there are still things I should know that I don’t and I certainly can’t use the “I’m new” excuse any more.  But we’ve seen some great work over the year, schemes developing and expanding, new schemes establishing and national providers beginning to develop Shared Lives services.  The best bits, in my opinion, are the stories that never cease to amaze me of Shared Lives carers welcoming people into their homes, sharing their homes and family life and helping people live good, and real, lives.

So this Shared Lives week as we focused on our theme of “Living good lives”, we’ve seen celebrations up and down the country to recognise the amazing work of Shared Lives carers and schemes.  There have been Shared Lives bake offs, ukulele concerts, tea parties and drinks receptions, ten pin bowling competitions and a trip to a vintage fairground.  Information events have been organised in shopping centres, libraries and town centres to raise awareness of Shared Lives. We had a fabulous parliamentary reception hosted by Liz Kendall where Shared Lives carers and people who live with them were welcomed along with MPs and given the recognition they deserve and where we also premiered our new film featuring some amazing and inspirational Shared Lives carers and the ladies they support.

All Shared Lives carers are amazing and inspirational I think. I had the privilege to work with a group of them when I worked in a Shared Lives scheme and they inspired my passion for Shared Lives.  Ordinary people who open their homes and welcome others in to live as part of their families – extraordinary.  I hope that one day, when I have more bedrooms than children in my house, I will be able to open my home too.  Lives change in Shared Lives, people have the opportunity to learn things others have said they could never learn and have experiences they could never have imagined.  Relationships are the key to Shared Lives, and as with any of us, if we feel secure in our relationships, we can do anything. Continue reading

Shared Lives Plus in Parliament and a “chance” encounter

Our first event in Parliament was organised by our communications colleagues Tim and Helen, with help from Lyn and the rest of the team. Tim (tim@sharedlivesplus.org.uk) has written this guest blog about the experience:

Straight after our first ever House of Commons reception one of our supportive MPs took Graham, Lorna, Clare, Joanne and Ayisha, the stars of the film we had just launched, for dinner in parliament.

Although we had fantastic support from frontbenchers across all major parties, notably our sponsor Shadow Care Minister Liz Kendall, Care Minister Norman Lamb, and guest speaker Nick Hurd MP, Shared Lives remains little known amongst MPs. This reception gave Shared Lives carers the opportunity to tell their representative directly about Shared Lives, and what it can, and is, doing for people who need support in their constituencies.

However for me the most interesting conversation with an MP happened not during the event itself but as we left the House of Commons dining area that evening.

On our way down the corridor, we bumped into a very well-known MP who Claire told us she had seen “on the telly”.

It would be unfair to name names without permission – but the figure in question was a household name, who commands respect across political boundaries for his work as a constituency MP over many decades. We took the opportunity to tell him about Shared Lives and that there was a Shared Lives scheme covering his constituency.

He wondered why there was a service like this in his area that he hadn’t heard of – genuinely surprised that he hadn’t come across something that sounded so positive, despite over 40 years as a local representative.

We said we’d send him some information, thanked him for listening, and went on our way.

As we walked out of parliament, I reflected on that briefest of conversations and what it meant.

Here we had someone who has been involved in supporting constituents with their needs and also making decisions about services in their community and the country for so many years – but they’d never heard of Shared Lives.

I’ve called it a chance encounter in the title of this blog; but on reflection chance isn’t the right way Continue reading

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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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