You’ll never walk alone

As lockdown starts to ease, our members continue to be under pressure like never before and so we wanted to share with you signs of hope and inspiration for our communities after a wonderful week of celebrating Shared Lives carers.

Knowing that we couldn’t meet up in “real life” this year, we made as big a noise online as possible about their Shared Lives carers’ magnificent achievements. We campaigned for their income to be covered for those that have lost income due to lockdown cancelling day support or short breaks and recognition that Shared Lives care is not a 24/7 service for those that open their homes long-term. We released new independent research which shows there is wide appetite for shared living and Shared Lives households met with one of our strongest political supportersSign up to my not-so regular newsletters

  • Community celebrations across the UK
  • New research shows appetite for shared living
  • Shared Lives carers meet Shadow Minister for Health and Social Care

At a time when connecting with others has never been as difficult, or as important, we were so proud to show our network walking on through the storm in the premiere of a special film already seen by thousands. If you’ve not seen it yet, let your spirits be lifted and treat yourself to four minutes of pure joy.

Community celebrations around the UK
Across the network, schemes and Shared Lives families got together to celebrate in virtual tea parties, using new skills from our social media training sessions. It was great to see the momentum all over the country – silly hats in the West Midlands with CVT, a beautiful chorus of voices singing “You’ve got a friend in me” in Surrey, handmade cakes in Stoke,  visiting carers with gifts in Bury, bingo and quizzes in Ayrshire – to name just a few.

Kirklees shared a hand-written note from a person supported in Shared Lives which everyone loved, probably because it talked about feeling “more grown-up” rather than “building independence” in professional jargon. Shared Lives Hertfordshire created fantastic, polished videos introducing Shared Lives matches in a warm, intimate and informative way – like Michael and Linda’s story. Linda’s not very good at the Wii, but she’s fun and has changed Michael’s life so that he “doesn’t feel alone anymore.”

Our own social media performance saw a huge spike in engagement – over 1000% increase on Facebook and Twitter- which was a timely boost given our recent research which told us that nearly 70% of people haven’t heard of Shared Lives and Homeshare.

New research shows appetite for shared living

New research by Survation, of 1000 people, also showed that there is appetite for shared living – 65% of people would prefer to share their homes with someone of similar interests to them, and 37% of people who live alone would consider sharing their homes with someone of similar interests, once coronavirus has been fully addressed.

Over half of the respondents to the poll felt that the government hadn’t done enough to address the issue of loneliness during the Covid-19 pandemic. We are proud that Shared Lives and Homeshare are still open for business and are helping to combat isolation. We call on government to help the people who want to live together for mutual support to reach the solutions that already exist and recognise that home is one of the safest places to be, especially with someone who’s always looking out for you.

Shared Lives carers meeting with Shadow Minister for Social care
We’ve been working hard to promote shared living across the political spectrum, and we were delighted to meet up with the Shadow Minister for Social Care, Liz Kendall MP, and Shared Lives households (pictured above), to share the experiences of real Shared Lives with her. We’ve also invited the Minister of Social Care to meet with Shared Lives carers and working with DHSC, LGA and ADASS on PPE, pay and restarting day support/short breaks.

Kendall is a long-standing supporter of Shared Lives and said that the Zoom session was “the most uplifting conversation I’ve had during this crisis.” She will help us to press the government on issues such as PPE, respite and day services re-opening, and in the long term supports our vision of a different way of living with and looking after each other.

Last week I wrote about how the conspicuous Continue reading

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.

 

There for when things get tough

Alison Cooper, Shared Lives carer, blogs about why she supports people with mental ill health through Shared Lives. This blog was originally her speech to MPs and leaders in the health and social care sector at our parliamentary reception last week, kindly hosted by the Rt Hon. Alistair Burt MP, with speeches from our Ambassadors Michael and Dipan, Liz Kendall MP, ADASS President Margaret Willcox and Cllr Richard Kemp. Alison writes:

My life has been incredibly rewarding since becoming a Shared Lives carer, four years ago. For over 30 years I worked with adults with learning disabilities and people with mental health conditions. I have been able to see lives changed and people move into more independent ways of living.

alison and jonathan

We have always had an open house; I started sharing my home by supporting young foreign exchange students, before finding out about Somerset Shared Lives Scheme. I heard so much positive feedback about how vulnerable adults have the opportunity to live with and be part of families and be active within their communities. It seemed an ideal way to combine my skills and my home to potentially change someone’s life!

To become a Shared Lives carer I had to go through a robust process of application and induction. They took references, did security checks, checked my home. Somerset Shared Lives, my local scheme supported me at all stages and I built a professional relationship with my worker. Shared Lives carers work very closely with the Scheme and Shared Lives Plus who offer guidance and training where I needed it.

The first person who stayed with us needed lots of support. She would self-harm, attempt suicide and needed a considerable amount of emotional support due to an attachment disorder. Most of her life she had experienced rejection and instability. We were able to offer her a stable and loving home. As part of the matching process we were introduced to each other over a series of meetings, before she moved in.

Now I’m not going to tell you a story of how wonderful it all was and that everything was rosy, because it was one of the hardest times in my life. Not only for me, but for my family. It was challenging and exhausting, but with the support of the scheme and other professionals we gave her a time of stability, where she quickly became an important part of our family and community. She stayed with us for six months, before she moved on to a new home and since this we have stayed in contact with her and occasionally meet up for coffee.

So for someone with a mental health condition and attachment disorder I would say that’s not bad going is it?

Today (at the parliamentary reception), I am accompanied by Jonathon, who has been living with us for over two years. He has built really positive relationships with our family and now has an active week with his voluntary work and memberships to clubs and organisations. Johnathon’s main goal was to have some independence back in his life, so very shortly Jonathon will be moving into an annexe within our home so that he can have a more independence. Jonathon is a valued member of our family and community, making positive changes to his life and others.

The reason I am here today is to share with you the passion I feel for the work that I do and that so much can be achieved. Shared Lives is about supporting people to become a part of families and communities and with this comes, independence, self-worth and respect.

So! When you’re walking down the street next time and you see the unkempt person walking around that looks slightly odd, smelly and isolated from the world, take a moment to think that could be you, a family member a friend and all just because there was no one there for you when things get tough and you cannot cope with your world and others around you. That’s what Shared Lives are they are there for when things get tough.

We need to raise awareness of the benefits that Shared Lives creates and the positive work that is undertaken by many Shared Lives carers across the country. The work we do is life changing and rewarding for ourselves and for the people who come to live in our homes; their families too.

At a time when Local Authorities are struggling to provide services for vulnerable adults, due to rising costs, why is no one looking at Shared Lives, singing its praises, shouting about it? It’s quality, affordable care for vulnerable people. Councils and social workers, discharge nurses and commissioners need to use more of Shared Lives.

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

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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Connect and deepen

I followed Shadow Care Minister Liz Kendall MP in responding to ippr’s new report on The Relational State view of public service reform last night (video). The paper argues that public services which are organised either as big bureaucracies, or by free markets, can sometimes tackle simple challenges, but not the complex challenges faced by many people with long term conditions or who face multiple disadvantages. It argues that we need services which are better connected to the people they support and with each other, and for systems which allow for deeper relationships between professionals and the people with whom they work.

After saying a little about Shared Lives and our members’ work, this is (roughly) what I said:

The relational state programme says we need to devolve power, connect services and deepen the relationships between those services and the people they serve. It suggests that institutions which operate at a local level are better placed to do that than national government.

I don’t disagree with any of that, but I do want to suggest that today’s messages of connect and deepen can be pushed even further.

To do that it’s worth taking a detour into the lessons we can learn from social care’s introduction of individual control over state resources, through personal budgets, which are sometimes taken as a cash Direct Payment which the individual spends on the support solution, in theory, of their choice.

For a relatively small group of people who have used a Direct Payment to exert complete control over their personal support, this has been life changing. People have become employers of their own support staff and others have spent their money on things as far away from traditional services as leisure club membership or, like one small group of people with learning disabilities, creating a dance activities business. Those aren’t innovations you could commission for. They are often uncategorisable in service language, but they are a route to a very familiar set of goals which are shared by most of us: friendship, belonging, the chance to contribute.

On the other hand, many people who have wanted or needed the state to continue to spend their personal budget on their behalf have found less has changed. Much of that money has been spent on the same old services doing the same old things. Meanwhile, budgets and some whole services have been cut, often in the name of personalisation and independent living. Ironically, some on the left now blame the individualism of personal budgets for the fragmentation of services, when in reality the problem has been the lack of individualism: the state, with its standardising tendencies and innate mistrust of individuals, has stepped in to organise, mixing up a turgid brew of quasi-free market and old fashioned bureaucracy, squashing creativity and prioritising managing its risks above those faced by its citizens.

In contrast, the people with the most freedom, the Direct Payment holders, have often chosen to act not selfishly, but collectively. Their goals Continue reading

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