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

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

What could be

Finally, social care is being recognised by our political leaders as vital to our nation’s health and wellbeing. All parties now recognise that ordinary people can be called upon to pay vast amounts towards their care, in contrast to our free-at-the-point-of-need NHS. There is public recognition of what social care is, for the first time. But now we need to visualise what it could be.

Our annual State of Shared Lives Sector reports give a glimpse of a possible future. They have consistently shown that Shared Lives is growing in England, and now we have evidence of new growth in all four home nations. They have also highlighted the difference Shared Lives makes to people’s lives. Many people who might otherwise have lived on their own or in a care home are finding a settled home with their chosen Shared Lives household. Meanwhile, a new group of older people and others who live with their families, but need regular overnight or daytime breaks, get those breaks from visiting their chosen Shared Lives carer, often matched with them because they both enjoy the same activities, rather than struggling with the stress and disruption which more institutionalised breaks services can bring. People live well and sometimes achieve the impossible.

This year our annual report for England (as reported in Community Care) paints both an encouraging and concerning picture. In previous years, Shared Lives has grown strongly, despite the cuts which are shrinking all other forms of social care. The net growth has been about 1000 additional people per year. This year, the number of people using Shared Lives in England has grown by around 580, to just under 12,000 people, around half of whom are living with their Shared Lives carer, and the other half are split between short breaks and daytime support. Look at the numbers of people using Shared Lives by region, however, and it is clear that there is a widening gap between those regions which are accelerating and those which have in previous years been stalled, and are now starting to slip back. So the regions which are growing, have added over 1,100 additional people. Half of this growth comes from the North West, with London and the South West splitting most of the rest. There are signs of growth in the North East, which has been one of the smallest regions and where we are working with directors’ association ADASS and the region’s Shared Lives schemes and partners to create a regional hub. The South East and Yorkshire have seen significant reductions, however, after having previously been regions which were using and developing Shared Lives strongly. The East and West Midlands remain essentially unchanged and the East of England, which has been the smallest region for some time, is now falling. Meanwhile, the model is growing in Scotland, Wales and Northern Ireland and we have embarked upon ambitious new programmes in each nation, with strong support from the Wales Government in particular.

With so much news about cuts and the crisis in the NHS, it is easy to believe that the future of public services will just be less of what we have now. But we believe Continue reading