Shared Lives carers and the people living with them in Lancashire were interviewed (from 50.53 onwards) on yesterday’s BBC R4 PM which you can listen to here: http://www.bbc.co.uk/programmes/b08fdb39
A Shared Lives carer was describing a hard day spent in their often-challenging support role. “Why do you do it?” my colleague asked him. He replied,
“Imagine a space where for 59 minutes it’s dark, then for 1 minute it’s light. That’s what it’s like doing this. You do it for the one minute you get to see the light in someone else.”
Our Executive Director of Support and Development, Anna McEwen, spoke at a Westminster Forum event on Transforming Care last week, at which it was announced there has been a 12% reduction in ATU usage for the first time. Anna spoke about how Shared Lives can contribute to the Transforming Care agenda, saying:
I’d like to start by introducing you to James. James lived in a residential hospital for people with learning disabilities for many years and was discharged home with depo medication to control psychotic episodes. He was severely abused and set on fire by family members and so needed to find somewhere new to live. Shared Lives was one of the options he was given.
James decided Shared Lives was a good option for him and was matched with Shared Lives carer Phil who supported him to experience lots of new things, including supported employment, independent travelling, greyhound racing and fishing. James also went on holiday with Phil and his family which he really enjoyed.
While living with Phil, James’ medication was reviewed ad discontinued but then his mental health deteriorated and his psychotic episodes returned. When James is unwell he has occasionally been readmitted to hospital.
When well, James lives very happily with Phil. He has a robust support plan, with additional Shared Lives support carers who know him well so that Phil can have a break too. Good support systems are in place to reassure Phil and James, both value the family life they share and neither could imagine James living anywhere else now.
Shared Lives is a family based model of care that supports older and disabled people to be supported within family homes in the community. Shared Lives is delivered by 125 CQC registered Shared Lives schemes in England who recruit, train and support Shared Lives carers.
Shared Lives carers, like Phil, go through a rigorous assessment process before being approved as a Shared Lives carer. They are then matched with an older or disabled person who may move in and live as part of the family, or visit the family home regularly for support during the day or short break (for example if they live with a family carer). The matching process is very important in Shared Lives, if you’re going to share your life with someone it’s important that you get on.
As in James’ story showed, Shared Lives has demonstrated it can be part of the solution, it is adaptable and flexible for people with complex needs and has a twin focus on great care and a great life. If you think about your own life, usually the things that define you and are most important to you are the relationships you have and the people you share your life with, Shared Lives enables people who need support to develop these same relationships that are fundamental to our human needs and make us feel secure and loved.
Shared Lives also brings a different ethos to traditional service types,. It’s about having a good life with a purpose, having relationships and based on an asset based approach where people contribute to a household and community. Being independent doesn’t have to mean living alone, in fact most of us would say we’re hugely independent but few of us choose to live alone.
Shared Lives carers often have a background or experience in working in health or social care. They may have been nurses, social workers or support staff so they already have a lot of experience in working with and supporting people who have very specific and often intense needs.
We know that Shared Lives isn’t for everyone, that it is one of a suite of more community based options that should be available for people to choose. It also can’t be a service in isolation, and needs to work together with other community services to ensure wrap around support for both the individual and the Shared Lives carer.
We’ve recently launched our NHS programme funded by NHSE which is providing match funding to six CCG areas to develop Shared Lives in the healthcare sector. We’ll work with CCGs and local schemes to develop new pathways and opportunities for people with healthcare needs to be supported in Shared Lives. Some have a focus on developing Shared Lives for people from the Transforming Care cohort.
At Shared Lives Plus we think that solutions like Shared Lives and other community asset based approaches should be considered as part of a range of options available to people in the Transforming Care cohort when they are considering how they receive their care and support. Sometimes, being part of a family, feeling loved and secure is all people really need to transform their lives.
There is lots of discussion at the moment about self-employment, exploitative employment and the ‘gig economy’. Lots of people love being self-employed: it can (and should) mean being able to choose when and where to work, or with whom, and working with lots of autonomy, rather than with close supervision by a manager. You don’t get the continuity, pension, holiday pay and other benefits of being an employee, but you get more freedom. There are workers such as Uber drivers and Deliveroo couriers who are designated as self-employed, but who have claimed that they are really employees, who have to work when and where they are told, at a rate fixed by the organisation they work for, with penalties if they turn work down. Meanwhile, some care workers have claimed that they are not being paid for all the work they do, particularly if they are required to be ‘on call’ or to sleep at a service they work at, without being paid an hourly rate for that. And some foster carers, with an unclear self-employment-like status, are demanding employment rights, because, again, they feel that their work is controlled, not autonomous and some feel that they are underpaid for what can be demanding roles which demand long hours of hands-on care, with little redress if they feel unfairly treated.
These disputes and court cases will no doubt run and run and I’m not going to try to give any opinions on them, but we’ve watched with great interest and some anxiety, because Shared Lives carers are self-employed workers, whose employment status is often compared to that of foster carers. Shared Lives carers go through a three to six month approval process before being matched with adults who need support so that they can share home and family life. The individual moves in with the Shared Lives carer or visits them regularly, either way being treated as ‘part of the family’.
In some ways, the focus on bogus self-employment feels helpful to our sector. When Shared Lives is done properly, Shared Lives carers choose who they work with, they always use their own home (even if only as a base for day support) and they work with a high degree of autonomy, not according to rigid timetables, for instance. All of these factors are indicators of genuine self-employment. In some areas, the model has come under pressure due to cuts, which has led to the local scheme being asked to cut corners or ignore parts of the regulated model:
- Despite an ombudsman’s judgement to the contrary, some commissioners want to regard Shared Lives as a 24/7 model of care, which would entail the Shared Lives carer potentially ‘working’ 24 hours a day. Where someone needs round the clock hands on care, they should be offered separate day support and in some cases, several Shared Lives carers work together to meet high support needs whilst everyone still feels that they are part of family life, not a traditional service.
- Some areas are under pressure to shortcut the matching processes, which would result in less choice for both individual and Shared Lives carer.
- One area recently raised the idea that Shared Lives carers should only be paid for the hours they are actively providing care whereas our good practice guidance suggests that Shared Lives is not paid by the hour and should involve at least four weeks’ paid breaks a year to be sustainable.
- Many schemes constantly have to fight against a creeping tick box culture, which would replace the autonomy of Shared Lives households as they pursue ‘ordinary family life’, with a service mentality of closely-supervised staff and constant paper trails.
These pressures on the integrity of the model are based on a false economy: Shared Lives is an average of £26,000 lower cost per person per year when it is done properly, with all costs taken into account. The saving, which doesn’t even include savings which might be associated with better outcomes, is based on Shared Lives carers and their families choosing to contribute far more to people’s lives than they could be obliged to by a contract in relationships which can be lifelong if well set up.
Despite the complexity of the law, there is a useful simplicity at the heart of these questions: any of the above actions which undermine the Shared Lives ethos would also undermine the self-employment status.
The message to our sector – and perhaps others – is clear: don’t try to have it both ways. If you treat Shared Lives carers at times as self-employed and at others, as low status employees, expect expensive court cases along with all the other risks of the model not being valued and followed. On the other hand, spend what are usually modest amounts of time and money choosing, valuing and supporting households, and rewards multiply, as people live happy, low maintenance lives for decades.
The legal arguments will always be complex (to address that, we are working with legal firm Clarion to produce new guidance for our members), but you don’t need expensive experts to tell you how to avoid calamity: just do the right thing.
A letter to the Prime Minister from the chairs for three select committees calls for cross party talks and consensus on a long term settlement for social care. Having given evidence to the recent Communities and Local Government Committee on this issue, I ‘m heartened to see the three committees coming together to call for positive change.
We have been here before of course. There have been cross party talks and the beginnings of consensus, but they have either gone nowhere or unravelled as pre-election party politics put point-scoring ahead of doing the right thing by older and disabled people. The Dilnot reforms gained cross-party support but were an early victim of austerity.
The temptation will be to aim for big, simple, government-sized announcements, like the complete integration of heath and social care. These will not solve the issue, and could even do more harm than good if, for instance, the whole system is integrated around the power bases of the big local hospitals, at a time when we need desperately to shift power and resources into the community. There is clearly a need for a big injection of funding to avoid widespread catastrophe and whole care industries such as home care collapsing completely. But again, short term funding is necessary but not sufficient, if it is spent only on the things we spend it on now.
So by all means let this lead to more money and more joined up health and care systems, but the more important and much trickier challenge is to use this moment not simply to shore up today’s approaches, but to invest in scaling up the most promising community and family based initiatives. The goal should not be integrated bureaucracies but unified goals: a health and wellbeing system which aims to create and sustain wellbeing, which connects people and supports family carers, which values resilience. It has never been more appropriate to take some risks. We have of course been calling for ambitious investment in initiatives like Shared Lives and Homeshare which have demonstrated they work. But we also need to be prepared to scale down bureaucracies and organisations whose unresponsiveness demonstrates they are too big, through accelerating approaches like personal budgets, personal health budgets and the involvement of voluntary, community and social enterprise organisations in designing and delivering interventions in people’s lives which are focused on health, not just illness and which are social as well as genuinely caring.
Thanks to the Guardian for publishing these thoughts on 2016 and the year to come (Social Care Network article here):
2016 was a year of sudden, unpredicted change. Some certainties unravelled overnight, as polls turned out not to reflect votes. Others have been building for some time. The crisis in health and care services is being dangerously accelerated by cuts, but you can trace its roots back to decades-old failure to take seriously the ever-growing gap between what our current services can deliver and the growing demands upon them. It is easy to believe that the only future is simple one: an absence of the public services we have now, and little else. But in public services, as in everything else, the future will be whatever is made by those who choose to make it.
There is a time for tweaking and refining the existing model, but perhaps the middle of the widespread collapse of health and care services is not that time. We need significant central government investment to avoid crisis becoming catastrophe, but then what?
The NHS’s Strategic Transformation Plans, which have been the big headline of NHS ‘change’ in 2016, are for the most part prime examples of how we lack a model for radical change within public services. They are the system responding to crisis by doing what we always do – just faster, at bigger scale and with more anxiety. The more urgent and important the work, the less leaders feel able – or obliged – to involve a wide group of organisations, let alone people who use services and their families.
So most STPs express what leaders were already intending to do, with little of the involvement of new people which would have led to new aims, new approaches, new behaviour. Lack of collaboration has bred suspicion, but they are not the ‘secret cuts’ plans they have been dubbed: they are more likely to avoid talking about cuts which have been inevitable for years. Where they say the right things about community-based care or prevention, they lack the model for the culture, power and economic changes needed. There is much talk of scale in public service delivery, but nearly always this is the industrial age’s need to operate in large units. Our large organisations, silted up with the governance requirements which must accompany any big budget, are not the place where change will happen.
The real scale challenge is to scale those bureaucracies down to be human and family sized again. Personal budgets, Shared Lives, community enterprise, Buurtzorg, Local Area Coordination, Homeshare: the lesson of these successful models is that we avoid the prototype-then-replicate approach and instead create enough infrastructure for people to form similar but entirely individual relationships everywhere. This is the scaling model of the internet age.
The only kind of change you can make happen suddenly, on a large scale, is destruction. Whereas creation of anything real and valuable starts small, but ambitious. For real change to take hold, you need to involve people who don’t always agree with each other and you need a tolerance for messiness: the neater the plan, the more fictional it is. There many kinds of people who care about each other and who already change the world around them: hundreds of Homeshare households, thousands of community entrepreneurs, 10,000 Shared Lives carers, tens of thousands of timebankers and millions of unpaid family carers. Can those overlooked groups join together, gradually and messily, to become a national movement which chooses to build a better, more human future? Do we still have time?
A paper on bridging the gap between old and young has been launched today by United for All Ages. It sets out how segregated by age we have become as a society and the solutions which are already out there. It’s been covered in the national press:
Here’s my contribution:
For a long time, Homeshare has been a neat idea which has struggled to take off. The concept is simple and appealing: someone who needs a little help or companionship, and has a spare room, is matched with someone who can offer a little help and needs somewhere to live. Usually a carefully vetted younger person moves in with an isolated older person: they pay no rent, but split household bills and offer around ten hours a week of help. With Big Lottery and Lloyds Bank Foundation support, there are now 20 local Homeshare programmes and hundreds of shared households: finally Homeshare is growing. This is partly because attitudes to sharing housing are changing – look at the huge growth of AirBnB for instance – and partly because more cannot afford housing and loneliness in later life is growing. But the new schemes are also changing the tone: Homeshare is not just about helping isolated older people, it’s also a way for an older person to give a young person a start in adult life. One scheme is aimed specifically at young people who are struggling. In Homeshare, both benefit because both contribute: exactly the kind of unity we need between generations.