Flipping the narrative

My essay for NPC’s series on the future of not for profits is here:  http://www.thinknpc.org/publications/flipping-the-narrative

It starts like this:

For years, charities and social enterprises that deliver support services have been told to emulate the private sector: to become more efficient and bigger through growth and mergers. We increasingly use the language of customer service, despite the fact that our ‘customers’ often have not chosen to come to us and are not spending their money. Our branding and marketing is getting slicker, even as the budgets for our front-line services are being cut like never before. We talk about quality, excellence and the need to ‘professionalise’, whilst many charities have to employ people on minimum wage to make ends meet while some senior salaries continue to rise.

Some not-for-profits have been so successful in competing with the private sector on that sector’s own terms that it is getting hard to distinguish them from their profit-making counterparts. Others have found themselves, like some private sector organisations, at loggerheads with their own workers, local branches or ‘beneficiaries’.

There are always gains to be made from becoming more efficient, but the challenges facing providers of public services that are genuinely values-led are now far beyond solving through leaner processes or smaller back offices. They are existential. It is time to consider not how charities can emulate the public or private sectors, but what makes our sector uniquely valuable to people who need support, and how we can work with those people to ensure that our public service system values that contribution. Read more.


Right on the Money

“My mother has been lonely for 35 years, but no longer since she has been Homesharing. The scheme in Oxford needs to be more widely publicised so that more people can benefit” Daughter of Householder. Shared Lives Plus Friends and Family Survey 2017

In Homeshare, two people who would not normally meet each other are helped to get to know each other and become housemates. Usually an older person who has a spare room and who wants a little help around the house or some companionship is matched with a younger person who is looking for somewhere affordable to live. When a good match is found, the younger person moves in and contributes to the bills but instead of paying rent, agrees to provide a little help with, for instance, household tasks which the older person is starting to find difficult. With funding from Lloyds Bank Foundation and the Big Lottery Fund, we are working with local Homeshare organisations and national partners including Age UK to bring Homeshare to many more people.

Although Homeshare does not attempt to provide personal care to its older participants, Homeshare is often thought of as a way for a ‘vulnerable’ older person to get support and as a way to tackle loneliness in later life.

In reality, it’s more complicated than that. Research by the Co-operative and the British Red Cross has identified that loneliness can affect people of all ages. For instance, the report identified that nearly a third of young new Mums experienced significant loneliness at a challenging time in their lives. North London Cares and South London Cares, which also brings younger and older people together, found that people in their early twenties were the second loneliest group, after older people. Anouck, coming to England from her native France to live for the first time, lived with Doreen and their Homeshare arranged by PossAbilities in Rochdale is featured on BBC’s Right on the Money on Wednesday 19th July. For Anouck, Homeshare with Doreen was about much more than accommodation; it was the ‘nest’ to return to each evening and a way to get involved in local activities, with Doreen who also got out and more involved in local life than she had in a life which had been very home-based as an unpaid carer to family members for many years.

doreen and anouck
Doreen and Anouck

Just as we can all experience loneliness at different times in our lives, we can all become ‘vulnerable’. The careful selection and safeguarding procedures of Homeshare organisations have been developed in recognition of the particular concerns many older people may have about house-sharing, but the model avoids applying a blanket ‘vulnerable’ label to everyone over 65, or assuming that no younger person ever feels vulnerable. This puts Homeshare organisations in an unusual place for a charity (but a very normal one for, say, a dating service or a commercial home-sharing service such as AirBnB), which is recognising that there can be risks in sharing a home, and enabling two people (and often, their families) to understand them and manage them, but not trying to take over: the participants ultimately decide whether to take part and with whom, and they develop their own version of the standard Homeshare agreement, and taking responsibility for it, with the local Homeshare organisation on hand if they run into difficulty.

This approach has a strong safety track record but also creates space for the only real cure for loneliness, which isn’t in the end a volunteer or even a befriending project (useful as those approaches can be): it’s a friend.

I love that I am helping my householder and knowing that I am having a positive impact on her happiness. I love the stories that she shares with me of her life and experiences.”.  Homesharer. Shared Lives Plus Householder and Homesharer Survey 2017

Let’s get started

The government’s care inspectors, the Care Quality Commission, have just published their three year report on social care, having now inspected all care services in England under their new regime. They found that whilst three quarters of care services are good or outstanding, a fifth of all services need to improve and that rises to a third of nursing homes, which care for people who have the most complex needs. There has been a lot of focus on the role that funding cuts play in this, which is undoubtedly significant: commissioners in some areas are trying to pay so little to their care providers that it is hard to see how those providers could even meet their legal duties such as minimum wage. There needs to be more money put back into the system to avoid catastrophe and the government needs to stop diverting any new social care money into a focus on saving acute hospitals, as has just happened with the Better Care Fund.

But there are other lessons to learn. In this report as in all recent ones, CQC has found that smaller services are more likely to be good than bigger ones. People want to live in somewhere that feels like home, but huge care homes are still being built and registered for older people, and ‘units’ of ten or more beds are still be developed for younger disabled adults.

Staff turnover in social care is over a quarter a year and rising. The model of recruit quickly and cheaply hides huge re-recruitment costs and must contribute to the failings that the inspectors find.

Shared Lives is an approach in which Shared Lives carers are recruited slowly: a three to six month approval process. Shared Lives feels small and homely because it only takes place in the Shared Lives carer’s family home, and the surrounding community. So it perhaps shouldn’t be surprising that CQC once again find that Shared Lives outperforms all other forms of care. Shared Lives carers are trained and paid, and the scheme which recruits, matches and supports them also costs money, but this model is not more expensive: it is consistently significantly lower cost.

Shared Lives is not perfect everywhere. It is coming under increasing pressure from commissioners desperate for even greater savings, who don’t understand that the time and care taken in setting up and supporting Shared Lives is crucial to its safety and success, and also the reason it costs less overall. Some Shared Lives carers are being put at risk of burn out as they are expected to care 24/7, again with risks to people’s wellbeing and ultimately much higher costs. But the lessons from this model are clear: invest time and money in the conditions for success, not managing failure. Focus first and foremost on a good life if you want good services. Ensure rules and regulations are there, but in the background when they’re needed, not the whole focus of everyone’s time and energy. Think small and personal, not big and cheap. 

The government is about to consult on social care. This cannot just be a discussion about what social care costs and how to pay for it. It has to be a discussion with what that money is spent on, starting with the ambition to offer Shared Lives to everyone who want it. Almost every area now has a local Shared Lives organisation to build on. Let’s get started.

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: https://socialcare.blog.gov.uk/2017/06/19/the-social-care-debate-its-not-just-about-the-money/ Thanks to the Dept. of Health and Mark Osterloh.