Turning on the light

We’re very grateful to Leanne, who has written this moving and powerful account of her Shared Lives journey with the Blackpool Shared Lives scheme. Thanks Leanne!

Leanne writes:

When I was asked to do this for Shared lives week it took me a while to write, not because I didn’t want to write it, mostly because I didn’t know what to say. What do you say about the service, the shared lives carers who helped you to grow into the person you could only dream about four and a half years ago?

Anyone that knows me, will know that one of my favourite hobbies is to write stories and tell stories to anyone who will listen, so if you don’t mind, I would like to tell you one now…

It all began many years ago when I was 10 years old, I had this dream of becoming a social worker and despite my disabilities I worked as hard as I could (and sometimes not at all) throughout school and college in the hope of one day achieving my dream. –How is this all relevant you ask? Let me tell you…

In the January of 2012, I was diagnosed with a rare medical condition on top of my already complicated disabilities. The condition took over my life and put a stop to my dream. Not only did I now have a medical condition, which I couldn’t control, I had increasing mental health issues. I don’t mind sharing, suicidal thoughts were becoming like an old friend of mine. My condition and my mental health state was putting enormous pressure on the relationships I had with my family. In the January of 2013, I found out just how much. I was admitted to hospital for what was supposed to be routine treatment, a few days later I was visited by a social worker who explained to me that due to a breakdown in the relationships between myself and my family, I was now homeless.

It took a lot of discussion between the social worker and I but I brought up the option of Shared Lives as I had heard about the support it offered to adults with additional needs.  Me being who I am, I was a little reluctant to become a part of the scheme as “I don’t need help” how wrong I was. In hindsight, I can truly say I didn’t realise how much help I needed until I’d had it.

On the 23rd of January 2013 I met Josephine, I can remember like it was yesterday, I was sat in my hospital bed trying to concentrate on what was being asked but all I could think was how this woman with the kindest smile and it seemed even kinder heart had made me feel the most human I’d felt in a long time. I was so distracted by this, I agreed to not liking cucumber… 4 years later and both Josephine and Paul, Josephine’s husband,  still believe I don’t like cucumber, when really I do.

Anyway on the 24th,  I moved into the place I was only supposed to be staying “a few weeks.” A couple of months past and I’d found myself fitting in with Josephine and Paul’s lifestyle, even joining Blackpool Bears with the help of Josephine, but this wasn’t my greatest achievement. My greatest achievement in that first few months was the smallest of all things… getting on a bus. By myself. It sounds ridiculous, a what was 20 year old that had never been on a bus on her own before, but it was true. My mental health state was the biggest issue, my anxiety stopped me from doing almost everything, making me fear I was going to get something wrong, get lost or worst die. So that day when Josephine told me she was going to drop me off at my appointment and I would have to make my way back by bus myself I feared everything. Literally dreading the end of my appointment even though she had told me the exact route to use. To cut a long story short, I did it. I got on the bus and I got off at the right stop. Although it was a very small thing, I felt like I had achieved a lot. Yes the whole plan seems a little unorthodox to some people but Josephine knew that was the kind of approach that I needed and what a fantastic approach that was. I now spend half of my time on and off buses, and the other half it seems waiting for them….

Anyway that wasn’t the only breakthrough I’d had in the few months after I’d moved in Continue reading

A choice for all

For Shared Lives week, Lesley Dixon, CEO of Person Shaped Support (PSS), which provides Shared Lives in a number of areas of the UK, writes:

PSS is a business with a heart that helps people change their lives for the better. We provide a range of health and social care services that help people from all different backgrounds get the most from their lives, and since we were founded in 1919, we’ve never stood still. We’re always looking for new ways to help – which, in 1978, led us to set up the UK’s first Shared Lives scheme.

As you may or may not know Shared Lives is a form of support where vulnerable adults and young people over 16 live at home with a specially recruited and trained carer and their family.

At the moment, 362 people  use our Shared Lives scheme across our long-term, short breaks and day support schemes, and we currently have over 400 carers.

Shared Lives is a great option for everyone in need of some day-to-day support – whatever their needs may be.  With over 400 carers, we can match people’s needs to the Shared Lives carers that can best support them, giving our service-users as much choice as possible.

  • At the moment, 60% of the people who use our Shared Lives scheme have some form of learning disability.
  • 7% of people using the scheme have mental health challenges.
  • 10% are older people, who may be frail or need some extra day-to-day
  • 8% suffer from dementia
  • 5% have complex and risky behaviours.

When we met Josh, he had been using drugs and alcohol as a way of bonding with his dad, who also had a drug and alcohol addiction. Josh was recovering from a mental health breakdown, which resulted in him being sectioned. He came to live with one of our Shared Lives carers in Liverpool to help him recover from everything he’d been through. After about a year, Josh was feeling well enough to return home – and is now living with his mum. Last we heard, he had started attending college, which is great news and shows the powerful impact a Shared Lives placement can have on someone like Josh.

We’re also seeing more and more care-leavers and vulnerable young people using the scheme.

In terms of referrals into the service from social workers, GPs, etc  – we’ve had quite a mixed experience. Some really see the potential benefits Shared Lives could have – others know less about it. As a result, we often have Shared Lives carers with vacancies just waiting to be filled – and that’s a real shame.

To fix this problem, Continue reading

Shared Lives together

It’s Shared Lives week, which this year includes a parliamentary reception hosted by Jonathan Reynolds MP,  Vice Chair of the parliamentary group on Autism at which we will announce the first group of local NHS trusts who will receive match funding and expert support to develop Shared Lives as a health service.

The theme of the week is Shared Lives Together. Lots of our communications this week will focus on what that means for the individuals directly involved in Shared Lives: people who feel now like they have a place in which they belong; households which feel that they have become richer for the experience: “Turns out this fills a gap which we didn’t even know was there”.

I’d also like to say something about the way that Shared Lives not only helps to build strong, resilient households, but can also play a part in strengthening the community around that household. We hear time and again about the friends which the individual living in a Shared Lives household has made, about their roles as volunteers, members of local groups and employees of local businesses. One Shared Lives carer told me that the reason she knew all her neighbours was solely because the young lady who came to live with her had a gift for making friends (the Shared Lives carer’s role often being to help her make good choices about those friendships). Another individual liked to help his neighbours in small ways like putting bins out, which they knew was appreciated from the number of Christmas cards he received each year. Small connections which can make a big difference to how a place feels like to live in.

That link between supporting individuals and community development, feels like it is one which needs to be made more often. Without making that link, you have “community care” which doesn’t enable people to feel part of a community, and community development work which inadvertently excludes people who have support needs and who can sometimes be amongst the most isolated.

Shared Lives is an illustration of how, with the right resources and back up, strong relationships within a household can lead to stronger relationships within the neighbourhood. Shared Lives households don’t just focus inwards but also reach outwards, to make the connections which start to feel like community, and which ultimately, help to build better places for us all to live in.

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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Living Good Lives

We almost made the theme of this year’s Shared Lives week (13-19 October) ‘Quality’. It’s a well-used term in social care. Every reputable care provider has a Quality Assurance system. Some have ‘quality’ in their mission statement or strapline. The inspectors are called the Care Quality Commission. But it didn’t take us long to decide that ‘quality’ wasn’t quite the right word for us. Not because we don’t think quality is important. A high quality care service has sound systems in place, employs good people and manages them carefully. Those are all good things, which not every care provider manages to achieve all of the time.

But quality isn’t a word that fully describes what Shared Lives aims for. I was hearing the other day about a social worker who was a little worried when they saw a Shared Lives carers’ house, which a young woman who has a learning disability was about to move into. There were chickens, a rambling garden with bits and pieces of this and that lying about, even a beehive. Was this a safe and quality setting, I imagine the social worker thinking to themselves? What if the service user tripped over something or got stung by the bees? A ‘service setting’ wouldn’t look like this, especially if it was a high quality one. It would be more likely to have a neat, low maintenance garden tended regularly by a gardening contractor. The bees wouldn’t have survived the first risk assessment.

Three young women live with those  Shared Lives carers now. They tend to the bees, love their pet rabbits, keep quail (and plan to sell the eggs as a micro-business), and grow vegetables. You will be able to see their story in the short film we are launching this week. A garden that busy with life may not always be spotless. There may be occasional trip hazards. I don’t know if anyone has been stung by a bee. It looks in other words like a garden in an ordinary house should look. Any commissioner or care manager would, I think, see it as a ‘high quality’ setting (even if they occasionally still worried about the bees) and it is. But much more importantly, it is a good place, in which people can live good lives. And it’s ‘Living Good Lives’ that we’ve chosen as the theme of this year’s Shared Lives week.

 

A Shared Lives carer view

This guest post is by Shared Lives carer and ex-marine, Phil, who tweets as @SharedLives4. Thanks Phil!

I write this brief note aware that it does not have the polish of a seasoned writer on the subject, so please forgive me for the rudimentary mistakes of grammar etc.

However I felt compelled to write it after attending the Shared Lives Conference in London last week.  I attended the conference for the first time last week and if I’m honest I was pleasantly surprised to attend a Social Care / Health Conference, which spoke of the critical importance the Carers were to the progress of the Charity.

 I made the trip on behalf of my wife, who is the main carer in our household. She came to UK 12 years ago from Uzbekistan and struck up a close friendship with my aunty Elsa and it was not long after that that she became passionate about the ethos and concept of Shared Lives.

I have to admit I travelled to the conference with a feeling of trepidation Continue reading