Sheik, Roumanah and Kirsty

Here’s a lovely story of inclusion, kindness and creativity from Hertfordshire Shared Lives as we continue to celebrate Shared Lives week.

Kirsty Stubbs moved in to live with Sheik and Roumanah Tafajoul’s family in February of this year. Kirsty has an acquired brain injury from an accident five years ago and had been in a Care Home ever since. Kerry Faulkner from Hertfordshire County Council Shared Lives writes about how they made the match made in the middle of the pandemic:

“Kirsty’s mother contacted me and was extremely keen for her daughter to be in Shared Lives. We had to be creative with matching as we couldn’t do any of the usual processes as this would mean Kirsty having to self-isolate in her room for two weeks if she even had a tea visit and the carers were not able to visit her due to the restrictions, so Sheik and Roumanah and their family Skyped her every week for months so they could get to know each other. Kirsty’s family met the Shared Lives family and worked with them to ensure a smooth transition. The room was adapted for Kirsty’s needs as she is partially blind, so they installed an ensuite shower room and an OT visited to install grab rails etc.

“Just after Kirsty moved in Sheik and Roumanah found out they were having another baby (which was a bit of a surprise for us all!) but we all worked together to ensure there was a contingency plan in place to allow continuity of care for Kirsty and the other gentleman they support in Shared Lives, with an additional ‘support carer’ approved alongside the one the family already had.”

Kirsty’s mum Joyce writes:

“The Shared Lives secret should be made widely known – amongst health and social services, charities and many more.  Since my adult daughter, a head injury survivor, moved to her wonderful new Shared Lives family in February 2021, she has been able to enjoy family meals, movie nights, helping the children with their spelling, listening to their bickering and simply being accepted and valued for the person she now is since her accident. Working with the family is a pleasure, most especially since the family has now expanded to include a new-born baby girl. Kind, caring families with appropriate experience and a suitable spare room are out there, as are countless adults with particular needs.  So please spread the word so that more people can be looked after by those who know how to care.”

500 more people are living Shared Lives

We are mid way through Shared Lives week and like everything, this year it’s very different. No corner of our lives or our country is untouched by this crisis, and Shared Lives carers, who already give so much to their communities, are now relied upon more than ever. It has been humbling to see our members carry on sharing their lives and providing care for those they support in the face of tremendous challenges.

We’ve been working hard to support our carers and schemes with issues surrounding PPE, pay, working longer hours, access to supermarkets and generally working through the crisis.  We’ve set up a new telephone support service with the British Institute of Learning Disabilities, to help carers respond proactively to anxiety or disrupted routines faced by the people they support, sustaining them through the most difficult of times. We are disappointed that despite accepting our case that it’s scheme to replace lost income would not benefit most of them, the Treasury isn’t able to support self-employed Shared Lives carers who normally offer day support or short breaks support which isn’t happening during lockdown.

But through it all, Shared Lives carers and the people they support are finding ways to overcome problems together – not only surviving, but doing it with humour and style. Whether it’s discovering a new talent for painting like Ivor and Peter in Shared Lives south west, making onion chutney (with all the tears that entails) like Judy, Jo and Mandy in Shared Lives Hertfordshire or Jon Thomas in South East Wales keeping active and enjoying the sunshine,  seeing the different ways in which Shared Lives matches are beating the boredom and frustration of lockdown makes me smile every time. Homesharers too have been showing how companionship is helping them through the pandemic – like Norman who: “grinned and didn’t have to bear it!”

While some areas of the care sector have struggled desperately, it is a source of great relief that incidences of infection and deaths from Covid-19 have been mercifully low in Shared Lives and Homeshare. Both models are based on the security of a welcoming home environment and good relationships, and it is increasingly looking as though home is one of the safest places to be – especially if you share that home with someone who cares about you and who’s always got your back.

The latest figures from England’s Shared Lives schemes show that Shared Lives care continues to grow steadily despite sustained austerity and a lack of a cohesive strategy for social care. The total number of people supported in Shared Lives in England grew by 540, or 4.4%, to a total of 12,890 (in England).

The numbers of short break arrangements grew by a promising 8%, suggesting that planners are increasingly understanding the flexibility of Shared Lives and its ability to fit in with and support wider service provision. While the numbers of people supported for dementia remained static, those in Shared Lives arrangements with other needs associated with older age doubled to 720. This shows that Shared Lives care can expand swiftly to tackle specific challenges – with the serious pressures facing the residential care sector, the growing numbers of older people supported in Shared Lives are a timely boost. There are now 500 people supported for a physical impairment – a 14% increase, which is positive news in the context of our concerted work in partnership with NHS England to develop shared living for those with health needs.

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Where human rights begin

One of my favourite quotes is Eleanor Roosevelt’s comment about where human rights begin: “in small places, close to home”. It would easy to hear the humility in that, and miss the ambition carried by that humility: our rights to be human, not as an abstract principle to be debated by philosophers or politicians, but to be lived, by all of us, all of the time. When we go home, all of us live in those small places.

Roosevelt’s quote reminds me why institutions are so incompatible with human rights: traditionally they are big places, however many homely touches we may add. Even though the buildings may be smaller these days, and have more ‘homely’ touches to alleviate them, services remain places where too many people are let into an individual’s life. Bureaucracies have the same effect: bringing public discussion and impersonal forms into people’s most intimate moments. Meg Lewis, who found a route out of the impersonal space of a mental health ward into the ordinary family home of her Shared Lives carer, talked about the thick file of ‘everything embarrassing I’ve ever done’ which followed her around the hospital, before life became what it should be: “going on adventures and making friends”.

A couple of weeks ago, we saw the corrosive effect that letting strangers into people’s intimate lives can have, as a team of workers at a large service dehumanised and assaulted people with learning disabilities, feeding off their distress for their own amusement. This BBC exposé was almost a carbon copy of one approaching a decade earlier, and of institutions exposed as havens of abuse through decades before that. Every big scandal and big reform programme, with their senior leaders, big budgets, committees and frantic timescales has failed to stop this kind of abuse happening. They have seen a big problem, and tried to impose a sweeping solution, whether it was a service restructure, or new commitment that lots of organisations signed up to, or new regulations. Those programmes have been too huge to pay attention to the small places, close to home.

Meanwhile, Shared Lives carers and their families, like the hundreds who attended Blackpool Shared Lives’s 30th anniversary celebration last week, have been quietly helping people to live good lives, in ordinary family homes, as part of a supportive household. There are 10,000 Shared Lives carers now; there have been many thousands more during our 40 plus year history. It is their willingness to share their homes and personal lives with another individual that has been the success of the model, as people have achieved small things like learning to cook chicken curry, joining a local club, or travelling on the bus independently for the first time. Those small things make a huge difference.

Our challenge during Shared Lives week, which this year has a human rights theme, is to make a big deal out of those small changes. To have huge ambitions for Shared Lives whilst making sure it is offered to thousands more people. To convince the big bureaucracies of local government and the NHS that this human-sized, infinitely variable model is part of the solution to the huge problems facing our crisis-ridden public services. Rachel, a Shared Lives Plus Ambassador who works as part of the team to speak about Shared Lives and to help us improve it, said at the Blackpool event that she is “lots of different things at once”: she is not just someone to be supported through a service. Even a brilliant service will fail her unless she has the right to be a football fan, a brilliant knitter, a charity ambassador, a cook.

We need now more than ever to believe in the value of getting the small things right. Getting the small things wrong always means we get the big things wrong and ultimately it will thwart every ambition we have as individuals and for our public services. We are often asked how we are going to scale up Shared Lives. Shared Lives week is a time when everyone can help us to do that through spreading the word, celebrating your local Shared Lives carers and, for the first time, signing up as a supporter. But just as important as scaling things up is our willingness to scale things down. To think about the small places, where human rights begin.

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