What is Shared Lives like?

A Shared Lives household show what a good life can look like. Film: http://vimeo.com/108993357

Paul and Lorraine have moved into Linda’s family home and share their busy lives with Linda’s family. Film: http://inclusivefilms.org/our-films/a-real-home-a-real-life/paul-and-lorraine/

Shared Lives growing faster than ever

We published our now-annual report on the Shared Lives sector this week. It’s full of exciting news, including that Shared Lives is growing rapidly, with 1,300 more people using Shared Lives and 900 new Shared Lives carers, since the first report. Many more people are now using Shared Lives for day support and short breaks, where they visit their chosen Shared Lives carer rather than living with them. There is a significant number of older people using Shared Lives and we’re really excited about the impact the model can make on current ideas about older people’s support services, which at present too often leave older people isolated and lonely.

The Guardian featured a Shared Lives household in the article about Shared Lives which helped launch the report. The article was very positive and began with the three young women discussing whether to go out that night and being encouraged to ‘go out and have fun’ by their Shared Lives carer, Lorna. The article ended with a comment from Clare who said, “I would be bored and lonely if I had a flat. I have a big focus on food so I would be overweight too. I wouldn’t have enough support or care. I would probably die if I was in a flat.”

This reflects comments from people who use Shared Lives who talked recently to people with learning disabilities working for Your Voice Counts, a user-led organisation which carried out an evaluation of the model. People said things like, “I love everything about my life with my Shared Lives carers, now I feel like I belong to a family” and “When I moved into Shared Lives my Shared Lives carers saved my life, I was depressed and being bullied before I went to live with them. Now I feel so much better.”

There were two sceptical comments Read more of this post

Are we ‘warehousing’ older people?

A Daily Telegraph report based on recent care home research says that smaller care homes are being replaced by what it describes as large ‘care warehouses’ after a wave of closures. Smaller care homes are finding it increasingly hard to cope with cuts and don’t have the same economies of scale of larger operations, nor the property market investment strategies of the really big corporates.

What the Telegraph report didn’t mention is that the last annual CQC State of Health and Care report was unequivocal in drawing a correlation between better care and smaller settings:

CQC data

CQC data

This isn’t to say that every small care home is great and big ones awful: there are examples of larger services which people enjoy living in and in which they receive great care. But it does suggest that, despite the particular quality challenges faced by smaller homes (eg it’s harder to cope with staff turnover in a small team; there is no corporate training/quality regime to draw on etc), there are elements of providing a caring, safe and perhaps above all, homely, environment, which are inherently easier in smaller settings.

This is certainly the experience of the smallest regulated care settings: Shared Lives schemes, which are limited to a maximum of three people and are homely by virtue of the support offered taking place in an ordinary family home. CQC also says that Shared Lives outperforms even the smallest end of the care homes sector:

CQC data

CQC data

There has been lots of talk (including recommendation 7.3 in the NHSE report by Sir Stephen Bubb), post-Winterbourne View abuse scandal, of CQC refusing to register new institutions for people with learning disabilities to safeguard safety and quality, because the evidence is clear that these kinds of facilities are fundamentally incompatible with community living.

If that’s true for people with learning disabilities, why is it not even discussed when it comes to building ‘warehouses’ for older people?

A capabilities approach to housing and support

I’m speaking at the National Housing Federation conference this year (link below). Here’s my blog ahead of the event which you can also find here: http://www.housing.org.uk/media/blog/a-person-centred-service-means-focusing-on-capacity-not-need/ 

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The challenge laid down by the Care Act, which reframes social care from responding to a list of medical conditions to creating ‘wellbeing’, is for every public service intervention to be effective at meeting need, but framed around the person’s idea of a good life and their capacity to build it with those closest to them.

13 April 2015

Arthur is an older man with a number of co-morbidities and extreme anxiety. He makes numerous inappropriate calls to the ambulance service which waste valuable resources, but struggles to engage with interventions to address this behaviour.

Arthur is a keen and expert angler, with a gift for teaching his skills to others. He is happy to give his time to help others learn how to fish.

Both of those are factually correct descriptions of ‘Arthur’, but they lead us in very different directions. The first sees Arthur exclusively in terms of his needs and problems and presents services with a challenge in terms of how to manage his behaviour. Perhaps Arthur needs more medication or intensive mental health outreach work?

Fortunately, professionals took a capabilities-based or asset-based approach to supporting Arthur. They got to know him well enough to find out what is important to him and what he enjoys. Some agencies would then find a volunteer to take him fishing, but in this case, they found people who wanted to learn to fish from Arthur. Arthur no longer calls out ambulances unnecessarily, but rather than one service dependence being replaced by another (drugs or more intensive support), Arthur has found a role in which he is valued and helps others.

This is the difference between a simplistic view of personalisation, in which the challenge is to tailor services to individual needs, and a genuinely person-centred approach, which stays focused on questions which are meaningful to people: What does a good life look like? How can we achieve it? An approach can only be holistic if it can comprehend an individual’s capabilities and potential as well as their needs. Many younger disabled people lack employment. Many older people with high support needs can feel that they lack a meaningful role. For Arthur, the key to meeting his needs was to set them to one side for a moment, and focus instead on finding that meaningful role.

A number of approaches, such as Local Area Coordination, Village Agents and Community Navigators, are examples of how to build this thinking into the ‘front end’ of the public service system. The Care Act reshapes care assessment to look at people’s goals and capabilities as well as their eligible needs. Even where people have higher support needs, interventions can be shaped around their capacity.

For instance, around 8,000 Shared Lives carers are trained, approved and supported by a CQC-registered local scheme, then matched with an adult who needs support. They then share family and community life. Many adults with learning disabilities or mental health problems live with their chosen Shared Lives carer as part of the Shared Lives carer’s household, either for a short period to put down roots before getting their own place in the local area, or as a long term arrangement. Others, such as people with dementia, become regular visitor at their Shared Lives carer’s house, for day support or short breaks. The approach combines regulated personal care from a paid and trained Shared Lives carer, with the sense of belonging and purpose which comes from being a valued member of the household. Shared Lives carers typically say, “She/he is just part of the family” and the household aims to feel like ordinary life, rather than a service.

There are now over 12,000 receiving support from a Shared Lives arrangement, but it remains little known. The challenge laid down by the Care Act, which reframes social care from responding to a list of medical conditions to creating ‘wellbeing’, is for every public service intervention to be effective at meeting need, but framed around the person’s idea of a good life and their capacity to build it with those closest to them.

Alex will be speaking on redesigning services around the abilities and strengths of clients at the National Housing Federation Care and Support conference on 17 June 2015 in Birmingham. Click here to find out more and download the programme.

Clockwork or cogworld?

The eminent thinker and activist John O’Brien wrote an article recently called Surviving Cogworld for www.ddnetworkinc.org, in which he talks about the rise of a mechanistic view of service provision in his home area of Wisconsin, reflections of which he sees globally. He identifies pressure on service finances and a merging of older people’s care and care for people with learning disabilities as the cause of the ‘cogworld story’ of how long term care should work: “People need long-term care because they are incapable of performing activities of daily living. Long term-care efficiently and cost-effectively performs the specific tasks that people have proved that they cannot. These tasks are specified in a plan that links objectively assessed incompetence to procedures that are well defined for efficient performance. Whenever possible long-term cate is delivered in a person’s family home, especially when family members and friends can provide unpaid assistance. As need becomes more intense people move into specialized settings: assisted living, group homes, nursing homes.”

This is the opposite of O’Brien’s vision of long term care which enables people to contribute to community life, control their own lives, secure good health and a stable home, work and earn an income and learn and grow.

The paper poses questions and O’Brien says, “I have no solution to the difficulties I identify other than the invitation to join in figuring out how to make progress in a troubled environment.” How to return to a model in which organisations invest in positive, mutually valued, long-term relationships between support workers and the people they support, which O’Brien identifies as the key to good care and good lives?

‘Cogworld’, in which people are seen as parts of a machine which just needs to be designed better and properly fuelled in order to work well, is an image that rings true in the UK as well as the US. O’Brien is surely right that the key to good support is the time, space and mutual respect needed to develop relationships. He quotes people talking about their support workers being like friends or family.

Where I differ from his analysis, and why I think there is an affordable solution, is in the assumption implicit in the article that for support we need support workers.

A support worker is:

  • Recruited, vetted, trained and monitored
  • Contracted to provide a tightly defined service, within professional and time boundaries
  • Responsible for the person they support, not vice versa
  • Usually told who to work with and discouraged from ‘favouritism’ and fostering ‘dependence’
  • At work when they are with the person they support, not at home
  • Paid by the hour

When people describe really great support it is often partly about the professionalism of the individual; their skills and expertise. But it is also about the worker’s ability and willingness to step slightly outside of their boundaries. To become more like friend or family, or to behave in such a way that supporter and supportee can suspend their disbelief and feel more like friends and family, if only until the shift ends. O’Brien is right that it is increasingly hard to achieve this in systems which are ever more risk-averse and less well resourced. Even a brilliant support worker is unlikely to be able to feel like friend or family in a 15 minute visit. But Read more of this post

The Collaboration Test

We’re pleased to have joined the Coalition for Collaborative Care which is attempting to embed models of collaborative care into the NHS. This blog is based on my recent blog for the C4CC.

Partly driven by the necessity of redefining what public services can do during austerity, a consensus is building that public services are not something that ‘professionals’ do to ‘patients’ or offer to ‘customers’, but are increasingly built on the success with which responsibility, knowledge, resources and – ultimately- power can be shared between people or families with long term support needs and workers who bring expertise, skills and kit, but who can’t magic up long term health and wellbeing for another person.

We’ve joined the C4CC because the need for collaborative care is a strong argument for collaboration between the NHS and the voluntary, community and social enterprise sector, of which we are a part.

Developing collaborative approaches is also a challenge to our sector: does every charity and social enterprise have the kind of close, trusting relationship with individuals and their communities that our sector claims? How do you maintain a strong connection with a community if you are a very large national charity for instance? Some national charities demonstrate that they can combine the clout of being big with the ethos of being localised, but good local relationships can’t be assumed, just because an organisation has a charity number.

It’s also important to understand that whilst collaborative models of care are a strength of charities, community groups and social enterprises, ensuring those models ‘get into the water supply’ (as Canadian social entrepreneur Vickie Cammack puts it) of public services can’t just be the role of our sector. We need a way of building the expectation of collaboration into every contract for every kind of service, whether public, private or not for profit, so that it becomes core business and embedded into all commissioning.

In the absence of a better term so far, I’m calling this expectation, ‘the collaboration test’ and it’s a test I believe should be universally applied across public service provision and commissioning. The test would be something like this:

Does this intervention or service leave each individual, family or community it is offered to:

  • Better informed (or mired in jargon and bureaucracy)?
  • More confident of their own capacity and more resilient (or more reliant on outside help and expertise)?
  • Better connected to those around them (or with new barriers between them and their family, friends and neighbours)?

It’s easy to see how many charities directly try to achieve these goals, particularly where they are delivering community-based initiatives. Adopting these tests universally would help to drive resources towards such initiatives, because the test is harder to pass, the more institutionalised or industrialised a service becomes.

However, every intervention, and particularly every intervention which is intended to be long term, can pass or fail the test: it can be delivered in a way which is confusing, undermining and isolating, or in a way which shares knowledge, resources and power, which aims to minimise its negative impacts upon relationships and connections and where possible, to support those informal support networks. So, for instance, an intervention may be possible to deliver closer to home, rather than in a distant building, or a team working with an individual can make the choice to share formation and expertise with family carers and to be contactable in an emergency. In some cases, those kinds of choices may make a service cost more, but that cost needs to be set against the costs and benefits of sustaining the individual’s independence or a family’s ability to care.

The ‘customer service’ paradigm for public services is over. Read more of this post

They want us to become like them so that they can understand us

‘The majority of procurement practice is stifled by process and bureaucracy, what appears to be text book practice in reality translates into overly complex, process focused exercises.  Such exercises demand a huge input from providers and commissioners and often miss the point of the intended outcome. Tenders now typically require 30,000 word submissions, and the majority of tendering organisations now support sizable bid teams.’

‘When I’m applying for £500 it’s like I’m applying for £500 million.’

‘Providers if presented with a problem will often identify system wide solutions for commissioners; however this approach is limited, and commissioners often commission small silo services in isolation without asking the provider sector to develop and deliver a whole system change.’

‘They say the VCSE sector is good at reaching ‘hard to reach’ groups, but then they want us to do it in exactly the way they think it should be done.’

Two of those comments came from the four largest not for profit housing and care organisations in the country, and two came from very small, grassroots organisations in the North of England, all of which were contributing to the Joint Review of the VCSE sector (http://www.voluntarysectorhealthcare.org.uk/vcse-review/) which I’m currently chairing. It’s been striking that organisations very different kinds and sizes have all been telling us some of the same things about the challenges they face.

The story of the birth, growth – and sometimes death – of a not for profit organisation is too often one which starts with a need identified by a community, and then becomes increasingly a struggle to stay true to that community and purpose, whilst having to chase funding targets set by people remote from that community. As one grassroots organisation put it, ‘They want us to become like them so that they can understand us.’ The more I’ve listened to people in the not for profit sector during this review, the more I’ve felt that the case we need to make is not for the statutory sector funding the voluntary sector, it’s for the two sectors to work together with their communities to define what is needed and what the total resource of that community – state money alongside people’s time, creativity, passion – can do to meet those needs. One participant cited the example of Bradford council doing just that with their Adult and Community Learning Budget, where the outcomes were set with the VCSE sector, who are now bidding for money in an open and fair process which feels more like an opportunity to demonstrate they are good at what they claim to be good at, rather than jumping through hoops.

There is no simple, risk-free way of spending public money on achieving complex health and care outcomes. Risk is a little like the air in a balloon: squeeze it in one place and it threatens to pop in another. Managing risk is too often confused with making a particular part of the system feel better about risk, with the least imaginative commissioners acting like the anxious manager who reduces the efficiency of their team by micro-managing them. To achieve the optimum balance of risk and efficiency will require a much closer and more respectful relationship between sectors, in which state money like the rest of the community’s resources, is seen as owned by us all, not owned by one part of the system to be given – or not – to another. As one BME charity put it:

‘Each time I meet the commissioners it’s like they’re meeting me for the first time. They haven’t taken the time to understand and respect us.’

The alternative to developing a trusting relationship in which risks can be taken and shared, is often presented as efficiency, rigour, transparency, but can actually result in waste:

  • ‘The commissioners hand us over to procurement who don’t know anything about the work.’
  • ‘As a small organisation we spend the majority of our time fundraising.’
  • ‘Hand to mouth funding wastes so much money: our staff are constantly leaving as their contracts near their end.’

Partnership working has become one of the mantras of the VCSE sector, so it’s interesting to hear organisations – especially small ones who lack the back office to develop complex contractual relationships – challenging even that idea:

  • ‘The funders changed their mind about whether the work we were doing with the lead partner (who had received their grant) was a grant or a contract. As a contract it would attract VAT which would have bankrupted us. Luckily we persuaded them to change their minds.’
  • ‘The state sector always wants us to work in partnership, regardless of whether that approach is the best one.’
  • ‘We work well with private sector organisations without the formal contracting required by state agencies.’
  • ‘We are talking less about forming partnerships now and more about solidarity between organisations and causes.’

We are still digesting the views, reports and experiences which many colleagues from the sector are generously sharing with us, and we will do so until the end of the first phase of engagement on March 2nd, but I think we are all agreed that there are some fundamental changes needed in the relationship between the statutory and not for profit sectors. Those changes are hard and they are not being made anything like consistently, but I am yet to hear anyone suggest any change which wouldn’t be achievable, if both sectors agreed it was important enough.

Wellbeing inequalities

I was asked last week to speak a conference which was looking at progress in addressing health inequalities since the influential Marmot review in 2010 which identified six ways to address inequalities:

  1. Give every child the best start in life
  2. Enable all children, young people and adults to maximise their capabilities and have control over their lives
  3. Create fair employment and good work for all
  4. Ensure healthy standard of living for all
  5. Create and develop healthy and sustainable places and communities
  6. Strengthen the role and impact of ill-health prevention.

This got me thinking about the role of social care services and integrated health and care services in addressing inequalities. Here’s what I said:

Since the Marmot review, there has been increasing recognition of the social determinants of health and health inequalities, and increasing recognition of the need to integrate health and care, but there is surprisingly little discussion in the social care sector of how social care and integrated health and care systems could be used to address health inequalities. I think this is perhaps because, despite Prof Marmot’s focus on communities and employment, this issue remains seen as being one of health inequalities, rather than more broadly about health and wellbeing inequalities, so I’d like to consider the concept of wellbeing inequalities and what can be done to address them.

Last year the Care Act made wellbeing social care’s new primary purpose, then defined wellbeing so holistically that services alone cannot hope to achieve it. The concept of wellbeing encompasses not only physical wellbeing, personal dignity and good mental health, but also adequate housing, positive family and community life and like Marmot, the ability to pursue employment and be an active citizen.

To my mind, this holistic idea of health and wellbeing should be the basis not just for social care but for an integrated health and wellbeing system, because we will only successfully integrate health and care services when we ask them to measure themselves against achievement of a unified set of outcomes. This holistic view of what public services should be attempting to achieve is also the only route towards a genuinely preventative system and is inherent in the Marmot recommendations.

So what could we define as ‘wellbeing inequalities’ and what could be done to address them?

The biggest demand challenge public services face is the quarter of the population now living with a long term condition. People with long term conditions are at higher risk of failing to achieve wellbeing, but this is not an inevitable consequence of their medical condition: it is just as much linked to low rates of employment, poor housing and high rates of isolation and loneliness. In other words, we need to embed the social model of disability and illness, rather than the medical model, in all of our thinking about health and wellbeing outcomes and inequalities.

Traditional services are essential for mitigating some of the most severe consequences of wellbeing inequalities but they cannot create equality of wellbeing. Nor are conventional public health approaches such as information campaigns, education and screening likely to make any impact. So what does make a difference?

Many wellbeing inequalities are closely related to the amount of social capital a person, family or community has. Social capital or community capacity refer primarily to the number and quality of relationships between people.

There is often an assumption that lower income communities necessarily lack social capital, because some of the elements of positive community life are absent or reduced, such as good housing, functioning local facilities, enough leisure time and disposable income to engage in community activities and the ability to influence local decision makers. This is only partially true: often community capacity and leadership in low income communities are harder or less attractive for statutory agencies to recognise and engage with: hidden rather than absent. Agencies tend to remain focused primarily on the problems and needs of ‘deprived’ communities, and to draw their staff and leadership from outside those communities, which can result in them trying to impose solutions which fail to engage with and build on the potential of local capacity and leadership. This means they may instead undermine existing community capacity or replace fragile networks of support with professionally-led imitations, which rely upon funding which is short term and unsustainable. In other words they can inadvertently exacerbate health and wellbeing inequalities through ignoring the crucial role of social capital.

Interventions like Shared Lives and Homeshare by contrast take an assets or capabilities based approach to building health and wellbeing, which addresses the whole concept of wellbeing as defined by the Care Act, and which looks for and builds upon the capacity and potential of individuals, families and communities to build good lives and good places. Shared Lives schemes provide people from all walks of life and backgrounds with the training, support, back up and payment they need to share their own homes and family life with an adult who needs support. David, who has a learning disability and a history of homelessness and petty offending is one of 12,000 people living as part of a supportive household where his personal care needs are met, but more importantly, he feels he belongs and has something valuable to offer – he is not simply a passive recipient of care. His Shared Lives carer has been able to involve her own networks of family, friends and neighbours in helping David to live well, and they feel their own lives are enriched by the experience. Whilst Shared Lives needs the infrastructure, regulation and payments required to support people with substantial needs, other approaches for wider groups of people can be lighter touch such as time banks, community enterprise development, Homeshare and SilverLine which helps older people volunteer from their own homes as befrienders for other isolated older people.

Extensive research has established the links between wellbeing inequalities such as the high rates of isolation amongst older people and health inequalities: loneliness is as bad for your health as smoking, for instance.

So as well as promoting new capabilities-based approaches, we also need to start measuring the success of every health and care service not only on whether it can meet its primary medical or support goals, but also on the extent to which it impacts positively or negatively on the connections, informal support networks, confidence and resilience of individuals and families. Challenging health and care services in this way would not necessarily increase their costs, but would force them to take a more holistic approach to addressing health and wellbeing, which would often only be possible if they formed new partnerships, not only with other services but with citizens and families themselves.

This integrated approach to addressing health and wellbeing inequalities, already championed by people like Professor Jane South of Public Health England, is for me the next phase in moving from our current system focused on illness treatment and crisis response, to a preventative and community-based national health and wellbeing service.

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