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/

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.

It’s ‘voluntary’ but not optional

I’m re-blogging the post below from http://www.voluntarysectorhealthcare.org.uk/vcse-review/ which is the website for a review of investment in the voluntary, community and social enterprise (VCSE) sector which I’m chairing on behalf of a group of VCSE organisations and the Department of Health, NHS England and Public Health England. The review is based on the view set out in all of those bodies’ strategies and visions for the kind of enabling, collaborative and community-based approach to achieving health and wellbeing which could only be achieved with a thriving and valued VCSE sector. In other words, a sector which might be known as ‘voluntary’, but which cannot be seen as optional:

Having been asked to Chair this review of the voluntary, community and social enterprise sector, I’ve been more thinking than normal about what kind of VCSE sector we want and what kinds of relationships national and local health and care bodies should have with it. For me personally (and in this blog you’re going to find the personal views of advisory group members, not any ‘official’ lines), the real question here is what kind of health and care system do we want in this country?

If we want the same kind of health and care system we’ve always had, then we need a VCSE sector which gets better at delivering on public service contracts, and provides a steady supply of volunteers to help out alongside professionals. Nothing wrong with those goals, but actually I think we need a very different kind of health and care system, and the national health and care strategies all read as visions for something very different, not just a more efficient version of what we’ve always aimed at. This means a different view of what charities, community groups and social enterprises are there for, and how their contribution should be supported and valued.

If the challenges of 1948 were our major challenges now, the health system would be well able to meet them. But our key challenge now is that health and care is not used by only a relatively small number of people for a relatively short time. A quarter of the population now lives with a long term condition and many of those with several long term conditions. Living well with a long term condition, avoiding health and other crises, is not something even a great service and the most expert professionals can do for us, it is something which is only achievable when people with long term conditions, family carers, communities and professionals work together, each making their own kind of contribution, sharing information and expertise, and backing each other up when things get tough. Living well requires joined-up health, care and housing interventions, but also services which can join up with informal action and arrange themselves around our real, messy, lives.

Charities, community groups and social enterprises can do many things well, from delivering huge public service contracts to running campaigns which change the national conversation, but Read more of this post

Our family

Here is the second in what I hope might be a series of guest blogs from Shared Lives carers and their families talking about what it’s like for children growing up in a Shared Lives household. Many thanks indeed to PossAbilities Shared Lives scheme and to Jamie, Amanda, Jonathan and Thomas and their household for sharing their inspiring story:

Our Family

 

Our children Jonathan and Thomas have lived with people with learning disabilities permanently from infancy. Michael and John moved in with us in 1998 and shared all aspects of family life with the boys. Ranging from: shared swimming lessons, to boarding a plane for the first time on our family holiday.

Jonathan and Thomas viewed John as a third Granddad and watched his beloved Formula 1 racing with him each Sunday. John had had a stroke and had limited speech Jonathan and Thomas would always try to listen to his thoughts without causing John any frustration, putting the motto ‘we’ll get there in the end’ to practice. Sadly, John passed away in 2007 this was a difficult time for the boys but fond memories of him remain. They still watch Formula 1 each Sunday as a result of their interaction with him from such an early age.

Michael was more of a friend to Jonathan and Thomas as they had shared interests including: swimming, superheroes and trips to visit Bradley Bear in the lakes. Michael is still part of our family and despite the boys being aged 17 and 18 they are still referred to as ‘Kid’ by Michael, even when they are driving him for a burger.

Louise joined our family in 2003, initially she was joining temporarily for the weekend but refused to go home. Her mum and sister said she had made her choice and she has been a pivotal part of the family ever since. Louise doted on the boys from day one, and this was replicated by them. Unfortunately, Louise fell ill in 2013 and had to undergo chemotherapy. This had a profound effect on the boys as well as the rest of the family. Jonathan and Thomas were exceptional in aiding Louise throughout her time of need, from running for the ‘sick bowl’ to watching movies with her, always trying to make her smile. We must mention the close friends of the boys who provided fantastic support through this time. They often visited Louise, and were always enquiring over the phone how Louise was doing following trips to the hospital. They were thankfully able to attend the celebration of Louise overcoming her illness at our home. A fact which brought great joy to Louise, who had a wonderful evening.

Wendy came to live with us in 2008, though she was already a member of our extended family, living with the boys’ Gran, in her role Read more of this post

Growing up sharing my life

This job really is a privilege sometimes. We’ve been looking at what it’s like for children growing up in Shared Lives households and I’m very grateful to Niamh, aged 12, who has written the account below of growing up sharing your life, which I think you’ll agree is absolutely brilliant. Thanks also to Niamh’s family including her Dad Martin, who shared this with us and Carole and the team at their Shared Lives scheme, run by Rotherham Council:

The reason that I like Shared Lives is because it gives the peoples Parents or Carers a break so that they can have a rest from looking after and caring for their family members  for a short period of time so that they can have some time to themselves. Also the People who come to have respite with us can socialise with other people because my Mum and Dad take other people out, my dad several nights a week and my mum on a Saturday.

Sam

Sam

Sam

Sam was the first ever person from Shared Lives who stayed with us at our house. Even though Sam is blind he has got a great sense of hearing and never misses a trick !. At first I thought me and Sam had nothing in common but I was wrong, he loves music and I love music. We have lots in common so when Sam comes to stay with us on a weekend, at night I go on YouTube on my laptop with him, he says which songs he wants to listen to and I find them for him which he then listens to on his headphones- this can go on for hours!- Sam likes Boyzone, Tom Jones & Kylie !

The first time Sam came to stop with us was for 1 week whilst his shared lives carer went into hospital. My dad along with me and a couple of my friends took Sam to York Maze. It was a really good day out because when we arrived at York Maze me and Sam had our picture took with the York Maze logo ‘Corn on The Cob’. Later on when we got home we went on YouTube.

Sam

Sam

Me, Sam and ‘Corn On The Cob’ at York Maze

My friends have become a big part of Shared Lives because whenever they come to my house in a morning to meet me for school and someone’s been stopping the previous night, they always say to them “hello” and “how are you?” One person who  Sam especially likes is Cendal. When Sam comes to stop at our house he always asks “Is Cendal coming” or “don’t tell Cendal” if his has been up to any of his tricks like turning the television over with the remote control!- Sam is a bit of a prankster !!

Steven

It wasn’t so long ago that it was Stevens first time at our house, Also like Sam I thought we had nothing in common but I was wrong because he is 19 and likes playing video games so when he comes to my house I bring my Xbox down stairs and at night we play on it, we play on games such as Fifa 15, Sims 3 and both of our favourite Xbox game Minecraft. When Steven comes to our house we always play on it. When Steven last came to stay my Mum said to me “would you like a baby brother or sister” and Steven said “you don’t need a brother because you’ve got me”. I thought that was a really nice thing to say because he thinks of me as a sister to him.

Michael

Michael

Michael

What can I say about Michael, Whenever he comes to stop at our house he always has something to say. Even though he has Down Syndrome he knows lots of things. He knows lots about Music and who sings which songs. Michael is also very knowledgeable and tells me things that I didn’t even know like when Coronation Street first appeared on the T.V. which is one of Michael’s favourite TV programmes, and every time he comes to stop at our house we all watch Coronation Street down stairs in the Front room. When he comes to stop at our house he keeps a picture of Leanne (actress Jane Danson) (out of coronation street) in his bedroom on his bed side table.

Hilda

Hilda

Hilda

The first time that I met Hilda she was a bit shy, but as she has grown to know me more she isn’t as shy. My mum takes Hilda out on a Saturday for 4 hours, we have taken her to Mexborough, Rotherham, Meadowhall, as well as going out for lunch, helping her with her shopping and getting her hair cut and we have recently taken her to see the Christmas Coca Cola van at Hudderfield on which she was photographed.  Last year we went to Cleethorpes for the day and we took Hilda with us, it was a really good day out and she really enjoyed it. Sometimes when the weather is not very good to go out, my mum stays at home and cooks buns and cakes with Hilda. Every time Hilda comes to our house she always makes me smile and laugh. She always has a smile on her face with makes everyone else smile. Hilda loves having a Hot Chocolate made of milk !

Oscar

Even Oscar our Spaniel dog  has taken an interest in Shared Lives.

As he says

‘Shared Lives Rules!’

Woof Woof !!

Oscar

Oscar

In my opinion Share Lives is a great thing. It has really shown me how lucky I am and not to take things for granted, it has made me appreciate what I have in my life when other people may be a bit less fortunate than me. By me helping and supporting my parents with Shared Lives is a good way for me to bring a bit of happiness to other people.

I help my Mum and Dad care for people with Learning Difficulties and Disabilities .

By Niamh

12 Years Old

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