We are advertising an opportunity for health commissioners in England and their partners to express an interest in our £1.75m funding opportunity to develop Shared Lives as a healthcare services. (Deadline extended to Monday 13th June 2016). This major three year investment and development programme to develop and scale up Shared Lives as a healthcare service in partnership with the NHS and NHS England. Here is a link to our recent reports on Shared Lives and healthcare and on Collaborative Healthcare which will give you a sense of the potential.
I spoke at a Westminster Health Forum event on learning disability support recently. I was speaking
At the event, as with most events on the transforming care agenda, there had been a lot of talk about the changes needed to systems, commissioning and processes. I was fortunate to speak after Shaun Webster MBE from CHANGE who had talked powerfully from personal experience about moving from a job where he was not treated with respect to his inspiring work in several countries in Europe, helping to close down institutions. Shaun, who has a learning disability, said, “When they closed down institutions they were moving children back in the community. Children in institutions had no confidence and no belief in themselves. In my job I was a role model because when I was training them they had no voice at all, I trained them to have a voice, to be confident, to train other people with learning disabilities, because when children move into a community they want to have a real voice and to have say in that community. That’s why I was training them around being confident, to make people listen to them and not let people put them down.”
Here’s (roughly) what I said:
We’ve talked in cycles usually following the latest crisis or tragedy for years, for decades about improving services for people with learning disabilities. And I’m in lots of discussions around quality and safety and outcomes, but I’d like to spend my five minutes instead of talking about all those things, just talking a little bit about power and about love.
We’ve done quite a lot of thinking about power in social care and more recently in health and have attempted to shift power, particularly power in the form of money to individuals and families through personal budgets and direct payments. And it’s been patchy and contested, but it has had some huge successes, people who have direct payments have created an entirely new workforce of personal assistants, 150,000 of them, which has allowed people to move not just from service user to customer or client, but from customer or client to boss. So there has been a shift and nobody was going to make that shift for them, nobody was going to commission that shift, it was only people and families that could make that change and create that new form of social care.
But it was probably Shaun and his colleagues at CHANGE that got me thinking more deeply about the shifts we haven’t made in power. And in particular, about the almost non-existent progress that’s been made around sharing power with people with learning disabilities in the form of employing people and paying them a wage.
And when we were waiting to meet the minister and NHS CEO Simon Stevens and lots of other important people in a post-Winterbourne summit, Shaun and colleagues homed in on employment of people with learning disabilities in the system as the single thing they wanted to talk about if they only had time to talk about one thing. And not only had no other meeting I’d been in and I’d been in a lot post-Winterbourne, come up with that, seen that as the most important thing, nobody had even mentioned it, I’d not heard that mentioned once as an improvement, because it’s not an improvement it’s a complete transformation.
It was also that group that came up with idea, sadly not adopted by the Green Paper, of local Scrutiny Boards to replace our currently very patchy despite people’s best efforts, often ramshackle, sometimes non-existent Learning Disability Partnership Boards, which have always been optional and reliant on the indulgence of local commissioners and services rather than mandatory and having teeth.
So, when we start to enable people who are citizens and who have lived experience to take charge, you start to have much more hard-edged discussions about power in my experience.
And you also start to talk about love, because we miss the point when we start discussions about how to improve services, the only starting point for this is how do people live a good life. And there’s a huge gap often between even a good service and a good life, because a good life for most of us is about the people we live with, the people we love who love us, our sense of belonging, our sense of purpose. All of those things that you can’t contract for, you can’t commission for, there’s no tariff for it, you can’t inspect for it. And it seems hopelessly naïve in the current climate of austerity and cuts, and crisis even to start talking about it, but actually it’s not naïve, it’s too many of our services that are naïve, that when it comes to their lack of understanding of what really matters to people and what makes people tick.
So how can we bridge the gap Continue reading
There is a shift being planned for the NHS which has the potential to be one of the biggest in its history. Certainly more long lasting and with more potential to create real change for people than the scores of restructures which the UK’s favourite public service has had to endure during its nearly 70 years of history.
It’s a shift that has often been talked about as desirable, more recently talked about as essential, but never, if we’re being honest, one which has been backed up by real system change.
It’s the shift from hospitals to communities, but it can’t just be moving familiar approaches into smaller buildings. It’s the move from formal to informal care, but it can’t be about sacking your heart surgeon and replacing her with a volunteer, which is what many people will read into that kind of change. It’s the shift from a biomedical to a social model, but we’ll have to find some plain English for that. As Anu Singh eloquently outlines in her recent blog, it can mean support to self-manage rather than rely entirely on medical professionals, peer support or group activities, and health coaching, but it has to be about more than those new programmes, it has to be a change which takes root across the whole system.
This won’t be easy. Whether we work in healthcare or not, we are all taught that health professionals know best. The expertise of our health professionals, based on years of training and incredible advances in research and medical technology is fantastic and we should never take for granted that we access that for free: it often stops suffering and saves our lives. But that attitude of ‘doctor knows best’ is less useful when we feel that we aren’t really responsible for our own health, or can’t manage our own care. And it can be lethal when the health system ignores the insight of people themselves or their families which is a lesson we never seem to learn. It is these ingrained attitudes which both people using services and those working in and managing them find so hard to shift.
We talk about them as culture change, which is often code for things we don’t really think are achievable, and our responsibility. I’ve blogged before about the changes which are achievable and are the responsibility of us all:
- Building asset based thinking throughout the system: this means everyone being trained to think first about what people can or could do with support, then about what they must rely upon services and professionals for.
- Passing the ‘connection test’: expecting all services to connect people and avoid disconnecting people from their family, friends and communities, and having the courage to measure both the connections and disconnections.
- Thinking whole-person, which for most people means thinking whole-family and whole-community. Family carers are not just another group of people with support, they have expertise, are often care coordinators and they provide untold hours of support. They need training, breaks, information and access to emergency back-up: the same things that paid professionals need to care safely and well, without damaging their own health.
- Continuing to shift power to people, not just as individuals (eg Personal Health Budgets which shift control of money from services to individuals) but also as groups (eg people with Personal Health Budgets given the opportunity to link up, pool resources and feed into planning processes).
We are excited that Shared Lives, thanks to a £1.75m grant from NHS England, is going to be one way of showing people that these cultural shifts can be practical, affordable initiatives that will help people live well, enable others to contribute their skills in a very human way, achieve better health outcomes and save money. £1m of funding and additional expert support is being made available to Clinical Commissioning Groups (CCGs) to enable:
- People with learning disabilities to move out of medical institutions into ordinary family homes
- People recovering from strokes and other health crises to receive their step down care in a Shared Lives household
- Live-in mental health support including acute support as an alternative to hospital-based treatment
- Dementia support including day support and short breaks for family carers
Because Shared Lives carers are trained and paid, but not by the hour, doing much for which they expect no payment and involving their family and friends informally, Shared Lives is able to combine the best features of paid and unpaid support: the formal and informal, professional and personal. This way of working can’t be forced, but it can be facilitated: the matching process ensures that everyone involved makes a positive choice to spend time with each other, rather than being assigned or placed. As a nurse who is now a Shared Lives carer put it: “I can still use my nursing skills but there aren’t the same power structures and bureaucracy in my kitchen as there are in the hospital.”
The shift in power and the cultural change cannot be separated. The experience of doing things so very differently changes the lives and thinking of everyone involved, commissioners, people using support, managers, Shared Lives carers and even their kids. But it’s achievable, scaleable, affordable and most of all, it’s happening right now, in an ordinary-looking family home not far from you. As strategic partners of the NHS England Integrated Personal Commissioning programme, we will be spreading this new way of doing and thinking nationally with lots of NHS organisations.
Many people fear big changes in the NHS. They think of iconic hospital buildings closing. The values of the NHS being erased for the profit motive of faceless private sector multi-nationals. This change is happening in small places, but those small places are everywhere.
Today we launch the final report and recommendations from the Joint Review of the Voluntary Community and Social Enterprise (VCSE) sector’s role in the health and care system. This follows a year and a half of hard work by an advisory group (which I have chaired) made up of people from the VCSE sector working together with people from national and local government. It’s been hard work and the co-produced process has at times challenged the usual systems for producing reports, with lots of pragmatism required on both sides. But I feel (and hope you’ll agree!) it’s been worthwhile, in order to build a consensus around a clear view of what the VCSE can and could do, the challenges it faces and the ways in which many of those challenges could be overcome. I’m incredibly grateful to everyone on the group, NCVO who provided the secretariat, communications support and much more, and to lots of colleagues working behind the scenes and in numerous agencies we liaised with, who have all worked so hard to get to publication (see www.gov.uk for full report). Here is the blog which I wrote for the launch:
The goal shared by everyone who delivers and organises health and care services is wellbeing: its creation and its resilience. Whilst we do not want to spend increasing proportions of our lives in medical nor social care, we will all draw upon primary, acute or specialist services at various points in our lives and we want to find them available, caring and well run when we do. However, whether for people with lifelong disabilities, the ever growing older population or those with long term health conditions and support needs, our dreams remain rooted in living well at home as part of welcoming, inclusive communities. To achieve that goal, we need health and care systems which are organised around and support our lives: which can reach us in our homes, support our families to care, and release the full potential of communities.
When people talk about the difference that charities, social enterprises and community groups can make to delivering health and care services, they often focus on the ways that those organisations can reach people whom mainstream health and care services find ‘hard to reach’ or ‘challenging’, get to know them more deeply, and draw upon volunteers to achieve more than paid staff alone can achieve. All true, and extremely valuable, but, our review of the voluntary, community and social enterprise or VCSE sector found, only half the story.
There was indeed wide agreement that good VCSE organisations are better placed than other kinds of organisation to achieve some of the health and care goals which are now seen as crucial to the sustainability of our NHS and social care systems. It is VCSE organisations which often support groups and communities which are otherwise neglected, not only responding to health needs but also starting to address the social determinants (poverty, housing, exclusion) of health and deep-rooted health inequalities. Through drawing on people power as well as money, VCSE organisations are often uniquely able to offer support which looks at the whole person and whole family, thinking preventatively and whole-lifetime. Many of our recommendations are designed to identify, measure and invest in those added kinds of ‘social value’ which VCSE organisations bring into a system desperately searching for more bang for its buck.
The current funding trajectory in some areas is towards large, narrowly focused contracts, which can be appropriate to holding big providers to account, but can be poor ways to create the diverse local marketplace of big, small and niche providers called for by the Care Act and needed to reach whole populations and to offer people genuine choice. The most creative planners and commissioners are drawing on the full range of investment approaches, using contracts creatively alongside grants for community development work, personal budget and Personal Health Budgets for personally tailored support packages, social prescribing to link up vulnerable people with effective charities (with funding following the prescription to ensure that’s sustainable), and social investment to take risks and innovate.
So developing the VCSE sector as a distinct form of health and care provision is crucial and brings value into the system that money alone cannot buy. But for many of the VCSE organisations and local commissioners who responded to our consultation, just as important as how much funding VCSE organisations could win through competing to provide services, was the extent to which VCSE organisations were involved in planning those services: co-designing the local health and care goals and playing a full part in developing responses to local needs and building on local assets and community resources.
Traditionally, the health and care system has been designed largely by the state Continue reading
Local Area Coordinators work in a small neighbourhood and have an open door for individuals and families at risk of developing greater support needs. They have the time and space to get to know people and help them identify what a good life looks like to them and how best to achieve it. LACs don’t just look at a person or family’s needs, but also at their capabilities and potential. Their goal is to help people to find practical ways of doing the things they want or need to do, developing and using supportive relationships and being part of community life. Where community connections or activities aren’t available, the LAC has a community development role, as well as helping formal services to reach those who most need them and to shape support around people’s capabilities. So where an older person who is struggling to live well and independently, has become isolated and reluctant to accept formal help, the LAC approach would be help that individual identify the things they want to change, build connections with those around them and think about the contribution they want to make to their community. One older person who was isolated, in decreasing health and struggling to maintain a safe home, turned out to have been a keen angler. The LAC didn’t look for a befriender to take him fishing, but someone who wanted to learn to fish. Making that connection and contributing to someone as their teacher, was the key to that individual taking control of many other aspects of their life and avoiding the path to hospital or residential care.
This week I chaired Capita and the LAC Network’s national LAC conference hosted by Capita Conferences. We heard strong support for LAC from NHS England, local areas including the Isle of Wight vanguard and Derby, and we heard from LAC founder Eddie Bartnik. Here are my opening remarks:
Services which aim to prevent people developing significant support needs have always wrestled with a paradox, often without realising it. The paradox is that the act of offering support can in itself reduce, rather than help build, an individual’s resilience.
Too many information and advice services are a collection of signposts into service land. Many interventions begin with assessment of need. But often, the more accurately and comprehensively we define a person’s needs, the less we can know of their capabilities, strengths and potential.
Often the very processes we use to help people stay or return to independence become the funnels into our service pipelines. Continue reading
The Think Local, Act Personal partnership has published a paper which I helped to author: Developing a Wellbeing and Strengths-based Approach to Social Work . Here is my foreword to the paper which looks at how social work could change to deliver the Care Act’s vision for wellbeing, drawing on Asset Based Community Development thinking and similar ideas:
Talk to social workers of a certain vintage about community development and many will begin to recall fondly the days of ‘community social work’, when social workers were expected to think whole-community in their approach to supporting people and perhaps even had the time and freedom to do so. Since that period, pressures upon social workers have increased with rising demand and falling budgets. The professionalisation of social work took the sector away from community social work, which was sometimes seen as hazily defined and weak on evidence of outcomes. It would be foolish to believe there was a ‘golden age’ and this paper is not a call to return to the past. Despite increasing pressures, social care can claim to have reformed itself more radically than any other public service sector. The concept of ‘personalisation’ is still contested and imperfectly implemented, but it is unarguable that thousands of disabled and older people have a level of choice and control which was unheard of until recently. Half a million people have personal budgets and a fifth of those have taken their personal budget as a cash Direct Payment, enabling them to create and manage an entirely new workforce of Personal Assistants. There are hundreds of innovative small and microscale enterprises, helping people to live well through interventions which look nothing like traditional services. Community-based interventions like Shared Lives are growing rapidly despite the pressures of austerity. So there is much innovation in services and support, alongside much-raised standards of skill and accountability amongst social workers, but we are also starting to understand the limitations of services acting on their own and the huge potential for support which fits around and enables people’s informal support relationships with their families and communities. That change does not make social work any less important, but it will require a new (or rediscovered) set of social work skills and attitudes: a social care workforce with the humility to use its power and access to resources not to take charge, but to enable people and families to take charge. It will need to be a workforce confident in its expertise but also more confident in the expertise and potential of individuals, families and communities. Models like Local Area Coordination and community navigators create the space in which professionals can get to know individuals and families well enough to understand what their goals and capabilities are, as well as their needs. Making those deeper relationships the norm will be a huge challenge in a financially stressed social care system, but meeting that challenge is the only way to a sustainable system, good lives for people with long term conditions and a workforce which is the best it can be.
Full paper here: bit.ly/1TTo3P3
This is a guest blog written by three of our seven new Ambassadors, Dipan, Phoebe and Paul, who were working with Lyn Griffiths, our Support and Engagement Manager. The Ambassadors are our first team members who use Shared Lives themselves. Their roles include peer review, raising awareness and improving the Shared Lives model. They write:
We are writing this in the Shared Lives Plus office, it feels like our first day at work. Is it good? It feels a bit strange, but Paul thinks it’s like home from home! Lyn worries about us being supported in the right way so we can all be part of the team. Lyn worries way too much LOL! We are part of the team. Lyn needs to back off a little bit, because she worries too much about us, but it’s part of her job.
Lyn is learning to understand how we like to be supported. As Ambassadors we are all becoming more independent and more confident.
Yesterday we were working on a charter for people who use Shared Lives. People like us. This is so Shared Lives carers can understand how people who use Shared Lives want to be supported.
It will be called My rights in Shared Lives: the Ambassadors’ test.
We have been thinking a lot about rights and responsibilities.
This has been making us think about Shared Lives and how we are supported.
Last night we had a laugh but we also had an interesting conversation with some Shared Lives carers.
They said we are vulnerable adults.
We said everyone is vulnerable in certain situations.
Sometimes the people paid to care for us worry too much. They need to back off too, just a little bit.
We have a right to be treated like any other adult.
We know you worry but you are not our parents. You are not our mum and dad!
We are adults not children.
One of the things we decided yesterday was all professionals need to back off a little bit and treat us like adults.
Being an adult is taking responsibility for ourselves.
If you back off just a little bit we can do this and we can be responsible for learning how to be the best that we can.