Latest Shared Lives news

Cathy Newman of Channel 4 News met a Shared Lives household:

Our £1.75m partnership with NHS England has been launched with funding awarded to five areas and their Clinical Commissioning Groups to develop Shared Lives as a form of healthcare.

The Shared Lives Incubator social investment programme developed in partnership with Social Finance and Community Catalysts is investing in Shared Lives in three areas.

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

Worth voting for

As we celebrate Shared Lives week with local and national events all over the UK, including a reception today at the Senedd and tomorrow at the Scottish parliament, we are thinking big, and thinking small. Small, because people living in and visiting Shared Lives households talk about the small victories which change everything. Victories like taking responsibility for care of a pet, travelling independently on the bus for the first time or making a new friend. But also thinking big, because we want Shared Lives to be a choice for everyone, and we want all public services to learn from our members’ values and approaches. Here is my blog for the Dept Health arguing that as well as new money, we need new kinds of relationships to make social care worth celebrating, investing in and voting for:

‘Social care was, for perhaps the first time, a defining issue in a general electionThe debates about social care and the NHS were frequently focused on the issue of money. But how much money is spent by whom, is only one of the questions facing all of us who work in health and care.’

Public services were born in an age of deference: we took what was offered by experts and were grateful. More recently, we have expected choice.The money is vital, but at the heart of the challenges we face is a question about the kind of relationship we want between people and services.

The language of ‘customer service’ has taken hold. Some have taken charge of their support entirely through personal budgets or personal health budgets.

Greater choice and control are themes running through these changes and the merits of both are much debated.

But with greater choice and control comes a shift in responsibilities, which is talked about much less frequently.

The existing responsibility to pay for social care came as a surprise to many voters, but as well over six million unpaid family carers know, there have always been many more responsibilities hidden within our public service system.

These responsibilities will always feel challenging, but they are not necessarily a sign of service failure. Few of us would want to live in a world where we were under no obligation to care for our loved ones.

These responsibilities become unmanageable, however, when they are invisible and unsupported. Too many families are told there are no resources available for them, until the pressure of managing a long term condition without information, back up and breaks, leads to catastrophe or a medical need, at which point services costing thousands a week can swing into action.

We can leave struggling families to find this out the hard way. Or we can make this the time to offer people who need long term support a new deal, which is honest not just about what people are charged for formal care, but also about the responsibilities individuals and their relatives take on themselves.

This informal care cannot all be paid for or replaced with services, and that would not be many families’ first choice in any case. But it can be met with an offer of information, training, emergency back up and breaks to make it safe and sustainable, alongside maintaining part time employment wherever possible.

This new relationship between people and long term support services would need a final element: to bring the ‘social’ back into social care, and to introduce it into medical services for the first time. Where we need support for an extended period, we do not want it from a succession of strangers.

Nor do people want to be isolated and lonely at any point in their lives. In later life, that isolation can be a killer. The solution to these social challenges lies within our communities, and it is time that the role of community groups, along with community-rooted charities and social enterprises, was properly resourced.

Many are currently small scale, but social models of support like Shared Lives, Homeshare and Local Area Coordination challenge the traditional professional/client transaction, which is well-suited to brief, technical interventions, but which can undermine our skills, wellbeing and citizenship if applied to long term support relationships.

For most of happiness is not achieved through choice, quality or professionalism, but through our relationships. 14,000 people now receive personal care as part of a Shared Lives household they have chosen and in which they feel like a person, not a customer. That’s not an expensive add-on, it’s an integral part of achieving wellbeing within a model that costs on average £26,000 per person less than care homes and other regulated care models.

Long term support which feels like it shares responsibility fairly, and which is as social as it is caring might also feel like a public service system we’d all be willing to pay – and vote – for.

First published here: Thanks to the Dept. of Health and Mark Osterloh.

Shared Lives in Moray: David

In the this second guest blog courtesy of Moray Shared Lives in Scotland, the Shared Lives team writes about support for Dave:

Dave has a diagnosis of dementia. David and his wife were told about Shared Lives by their social worker. David has a great sense of humour and enjoys socialising and getting out, so it seemed an ideal choice for both David and also for some respite for his wife.

As his condition deteriorated, another carer came on board to support the family and we incorporated some more day support and also regular overnight respite. He is very car sick, so planning between both carers for hand overs was all important, but after a few weeks, all was settled and going very well.

Dave loves going along to both carers and enjoys the social aspect of going out walking and meeting people in small groups. The Shared Lives Team are now well known locally and often meet up to play pub games or beach boules together. Dave really enjoys being part of his local community and chatting to everyone he meets. He is known for his love of Cullen Skink soup and Indian food! He even has his own dog at one carers home and is responsible for it when they go out walking together.

Dave’s wife is very pleased with the flexible support and has advised that she does not know what they would have done without it. With his condition and the extreme car sickness, staying in a small seaside town is beautiful but very restrictive.

The Shared lives model of care allows the luxury of regular time spent together with a carer, and in turn special support and relationships are possible.

Shared Lives in Moray: Alex

In the this guest blog courtesy of Moray Shared Lives in Scotland, Shared Lives carer Karys talks about supporting Alex:

Alex has dementia and has been using the Shared Lives service once a week since March 2016. However, at the request of his family, Alex recently started attending twice a week as they truly value the service and comment on how stimulated he is when he gets home from his time with me.

alex 4

Part of the success is down to the pairing between Alex and me. I have been able to bring an otherwise quietly spoken, man of few words out of himself. His son John tells me the only time he willingly goes into the shower, is when he tells his Dad that Karys is coming round today.

I try to do different things each week as far as possible, but whatever we do, I take lots of photos. I send the photos on to Alex’s sons, which they value as a tool to jog his memory. Activities range from going to the library, mostly for books on fishing, collecting driftwood on the beach, spending time at the seals, picnics on the beach, adult colouring, visits to garden centres, museums, fishing heritage centres, card making, going out for lunch, to name a few. Alex loves snooker, which turns out to be the only sport he can still follow, so we watch tournaments on TV. However, this week I took Alex out to play pool which he did after a bit of persuasion. He loved it and I think he surprised himself on how capable he was.alex 2

Alex is still physically fit and loves to get out for a walk. For such a quiet man, he loves the social side of getting out and meeting people. One of the things he did that his family can’t quite believe, was to dance with me at the Shared Lives Christmas party. He took a bit of convincing, but enjoyed himself once he was up. Continue reading

The shelter of each other

Our colleagues and members in Northern Ireland hosted an event for commissioners exploring how Shared Lives could be developed as a new form of short breaks, day support and home from hospital care for older people.

We are grateful to Fionnuala McAndrew of the Health and Social Care Board who helped convene and kick off the day and to Mary Hinds, of the Public Health Agency, who summed up beautifully, drawing on an Irish proverb I’ve not heard before: We live in the shelter of each other.

I’d be willing to bet that that rings true for you as much as it does for me. For years now, the ideal living situation through the eyes of long term care and support services has been independent living. It’s not a bad goal, particularly when contrasted with institutional alternatives. But that language doesn’t tend to figure in our own descriptions of what we dream of, unless or until our independence is at risk. When people describe happiness, for most (admittedly not all) of us, it involves having people  we can rely on. In other words, we dream of interdependence, not complete independence.

This can be an uncomfortable idea for long term support services which are wary of ‘creating dependence’. Few of us would want to be dependent on a service. But perhaps it is not so much that becoming dependent is ‘inappropriate’ to support relationships, but that the way we construct support relationships can be an uncomfortable fit with our naturally interdependent nature. People working in social care often find their roles put strict limitations on the definition of ‘care’ and are too rushed and impersonal to feel ‘social’. This incompatibility between the human nature of both people who give and those who receive long term care is at its most stark when the intimacy of personal care is carried out by a succession of strangers.

Shared Lives is not about dependency in the pejorative sense and for some people it is very much a stepping stone to getting their own place. Half of the people using Shared Lives Continue reading