Whose social care future is it anyway?

The Whose Social Care is it Anyway? Inquiry Group issued their first findings today from talking with over 500 people who use social care support. This was done by Social Care Future, a grassroots movement with a vision which sounds very different to so much of what the social care sector talks about:

‘We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us’ 

They talked peer to peer with people about how to make that vision a reality. These are the five changes people called for:

Note that people didn’t talk about quality, safety, prevention, integration, innovation or the other jargony terms that so much social care policy can get wrapped up in.

The report asks whether national organisation like us at Shared Lives Plus will ‘commit to use the Social Care Future vision … in your work? Will you take direct action yourselves and support your members to act on the 5 key changes?’

These are easy commitments for us to make. We agree with these five changes and will try to make them happen. Shared Lives, Homeshare and Family by Family all help people directly with building communities where everyone belongs, living in a place that feels like home and leading the lives we all want to live. We are helping local areas to invest more money in growing those ways of working, for instance, working with the North East councils and ADASS to recruit more Shared Lives carers and match more people into supportive households.

We still have a long way to go on sharing power and being a charity that ‘meets people as equals‘ but our colleagues who have lived experience and are part of our team are helping Shared Lives Plus on that journey, and we are helping our local members to have better planning conversations so that everyone gets to shape their local services.

We are calling on the government to invest in models which bring these changes about as part of the long-awaited long term plan for social care. We could have a very different social care future to the social care we have at present, but only if we recognise that it’s a future which has to be shaped by two groups of people:

  • the people and families who make most use of social care now
  • the groups and communities who are most likely to be ignored or poorly served by social care

Worth it

This is a guest blog for coproduction week from my colleague Anna McEwen (@annasharedlives) who is our Executive Director of Support and Development. Anna writes:

Coproduction – where did that word come from? I remember coming back from maternity leave years ago now and suddenly that was the buzz word.  If I’m honest I didn’t really know what people were talking about, it was part of the new jargon that had developed while I was off juggling twins and trying not to drop one or the other.

Then, that cringey moment in an interview a couple of weeks later when I was directly asked about coproduction and I had to admit that I didn’t know what they were talking about. It was awful. When they told me what it meant I thought, so you’re talking about working with people who are the experts in their lives to design the lives that they want for the future. Oh. But that’s what I’ve always done, why would I ever not work alongside people. Why would I pretend to know what people want?  What we call it doesn’t really matter, it’s what we do that counts.

I also remember when I was a commissioner and as part of a new colleagues induction I did the usual thing of talking about past experience, and the reaction ‘wow, so you’ve actually worked with people’.  Hhmmm. How could I possibly commission services without first-hand experience of working with people.

So many people stand out along my journey, David in Harrow who was the first chair of the learning disability partnership board and such a powerful advocate at a time when this was all quite new, Kevin in Newham who when I first met him couldn’t give me eye contact but bounded up to hug me when I left.  Meg who speaks beautifully and eloquently about her experience which humbles me every time.

A couple of weeks ago I spoke at on online conference with Alex Fox and Tom who has lived experience of Shared Lives to support his mental health.  Ours was the only presentation with a real expert, and with over 500 attendees the chat went wild with support and respect when Tom spoke and told his story.  Those people will remember what Tom said, and his Bob Marley poster, they won’t remember what I said and that is fine by me.  I’m not here to make a name for myself. I’m here so that Tom, David, Meg and Kevin, and so many more people, have their voices heard and get to tell their stories so that we can listen and do better so that people can live their best life.

The days I spend working with our Shared Lives Ambassadors, who are paid members of our team and have lived experience, are my best days. I continue to learn so much from them and have enormous respect and admiration for them.

This coproduction week I commit to doing more of this, and challenge you to stop and listen too – I promise it will be worth it.

The smaller picture

I suspect I’m not the only person in a senior leadership job who regularly feels like a fraud: am I doing enough to justify my position? What vital opportunity or threat have I missed? Am I being strategic enough?

Ask most people who profess to know about how to do senior leadership and what makes a good leader, and they will often talk about ‘being strategic’. Taking a step back, getting a ‘helicopter view’, seeing the bigger picture.

There is truth in this: often as a senior leader you are in a unique position to have an awareness of what every part of an organisation is doing, which means you should be able to tell whether the parts are fitting together well or not and where the whole thing is heading. If you get bogged down in the detail of a single part, you risk losing that perspective and using up your time and energy on one part of an organisation whilst the others drift.

There are some problems with being strategic though. Firstly, we live in an increasingly unpredictable and chaotic world. However many steps back you take, there are huge changes, like Brexit, which the vast majority of the most powerful leaders did not see coming, and which even now it is happening, feels entirely unpredictable. We live in an age of social movements which bring great shifts in power for good or ill, but which the establishment cannot ignore and cannot always ‘manage’.

So the strategic skill of analysing and building complex systems is becoming less useful. You are as likely to make the right moves by being able to hear and move with fast-moving cultural changes. Savvy senior leaders talk about creating movements, but in reality, those movements are more likely to be started by a personal story and a hashtag, than a research and piloting budget. Working with the world in this way starts with building a shared values base for an organisation and requires closer and more communicative relationships with a much broader range of people.

The trade-off between strategic overview and a relationship with reality has always been under-estimated. For some years now, public service leaders have been talking the language of personalisation, person-centred care, communities and empowerment. Many of them have meant it. Few though, have been willing and able to translate those arresting visions for a more human model of public service into the collective activities of large organisations which continue to be run by middle managers who are performance-managed on balancing their existing budgets and ensuring their teams carry out a narrow and familiar range of tasks. The vision stays unengaged with the real-world pressures.

I see that disconnect when local leaders become passionate about developing their Shared Lives provision, but that passion dissipates as it meets the cynicism and stasis of their just-about-surviving teams. A mentor some time ago suggested to me that complex strategic plans, particularly if supplied by outside consultants, were always works of fiction. Instead, he recommended having a clear view of who you are as an organisation, which in turn would enable you to spot the opportunities to take, and the challenges to respond to.

I’m increasingly convinced of this.

You cannot of course, know who you are as an organisation, if all you have is an overview of it. You have to be prepared to get close to it too. Senior leaders who want their visions to become reality, have to be willing to get out of the helicopter and to work alongside colleagues on ground-level system change. And leaders who want to be sure that what their organisation writes about their values are real, must not only live those values in person but also spend time with people on both sides of its front line.

Step back from a large organisation or system, and instead of achieving a clear, strategic vision, you may fail to see the faulty processes which make the vision impossible to achieve, or fail to hear what people really experience. Bankrupt values will sink an organisation as quickly as bust budgets. The bullying culture Continue reading

What would good look like?

When we talk about the shift towards a ‘people-powered’ NHS, we often talk in terms of culture and vision, but avoid suggesting actions which would transfer power to people, whether that power is in the form of money or other system levers. Chapter Two of NHS England’s Five Year Forward View set out how healthcare would become more community-based and people-powered. Whereas other changes involved setting up new kinds of organisation or using money in different ways, Chapter Two was a vision for doing things differently, with less clarity at that time about what new kinds of systems, services and relationships between people and the NHS would make that vision real.

During the last two or three years, we have learned more about what helps and what gets in the way of making the vision real. Shared Lives is one of a small number of new community-based support models which NHS England is directly backing to make the shift. Many of the Sustainability and Transformation Plans (STPs) which every area produced for its local health and care system talked about the need for a more community-based model but I haven’t read one which sets out a process for the transfer of money, knowledge, power or responsibility to local people and their representative organisations.

When that transfer doesn’t happen, nothing really changes. A highly regarded social prescribing programme, which demonstrated that it was enabling people to access new kinds of community support and improved their wellbeing, has just been ended by a CCG which decided it couldn’t afford it in tough times. It worked, but never became regarded as core business. The outcomes it achieved clearly weren’t those valued most by commissioners and the organisations involved did not achieve the status of equal partners with their statutory equivalents.

We need to put what we have learned into the NHS’s plans, and later in the year, the social care Green Paper. I think there are three kinds of change which would be present in an area which was doing people-power well:

  1. At least some of the money spent on health and care provision would be paying for people-shaped outcomes such as ‘wellbeing’, as it is defined in the Care Act.
  2. An element of the area’s infrastructure and commissioning budget would be paying for infrastructure that reaches, engages and convenes people, supporting them to take decisions at both individual and area level.
  3. Some of the oversight, performance and regulatory levers would be in the hands of people, via experts by experience and also their local groups. Current consultative structures would be replaced by well-resourced, trained and accountable forums and groups with teeth.

What would push or pull local health systems towards those three new ways of doing things?

The NHS is already putting some of its money and resources in people’s hands through an ambitious Personal Health Budget target. But this needs to be matched by ensuring every area has a brokerage service to help those people (particularly those least able to choose) to make individual choices and to connect with others who want similar things, to pool budgets and start to commission (design and improve services) rather than just to buy them. The Social Value Act enables commissioners who buy public services to demand that their suppliers give them added ‘social value’, such as using volunteers. The Act’s powers are used in a quarter of councils, but by very few NHS commissioners. This has to change.

It’s not just cash that needs to be put into people’s hands. In a people-powered area, family carers would be able to access medical expertise, training, equipment and emergency back up to sustain their caring roles. Social prescribing programmes can put money and resources into the hands of local community groups and social enterprises which help people to live well. Initiatives like Local Area Coordination and Health Champions create connections between people who use health services and their services and communities.

Some of this won’t happen unless the NHS moves some of the money it spends on infrastructure into people’s hands. Health commissioning is expensive, but currently most of it is ineffective in building community-based care, so some of its resources should be spent instead on people and organisations which can help citizens themselves co-design new models of care. Most local areas have organisations which organise and speak on behalf of the voluntary sector, such as the local Council for Voluntary Services and which represent people’s voices in health and care such as HealthWatch and Learning Disability Partnership Boards. Some have organisations which effectively build a local marketplace of lots of different kinds of charities and social enterprises. A handful build the smallest enterprises. In many areas these different kinds of organisations are fragile and disconnected, with unstable funding. User-led organisations and organisations representing overlooked communities are losing funding. None of these organisations have teeth. A people-powered area would bring those organisations together into a wellbeing hub which would ensure that citizens and their local organisations could help to design and monitor health and care services. It would inform and build a local marketplace of service providers and it could help local peer support groups and be a link between such grassroots initiatives and clinicians and other experts within the system. Commissioners should have to make themselves regularly accountable to the people they serve and a hub would be a way to resource and bring together user-led and self-advocacy organisations to make this happen.

This isn’t just about putting resources into people’s hands and offering them new rights. Rights are only meaningful if those people who engage share responsibility and ownership of the new system. So some of the system accountability must be put in people’s hands. As well as the hub model above, we need a new set of measures of what the NHS and care organisations achieve, which measure wellbeing, not just narrow clinical outcomes like mortality. Some health and care system performance measures could be wholly or partly scored by people who use health and care services and their local groups such as self-advocacy groups for people with learning disabilities and carers’ organisations. Local systems would need to develop, resource and challenge those groups to perform that function, which would help to address the longstanding problem of voice organisations existing on sufferance and scraps of money. They would also need to recruit experts by experience to use in commissioning, monitoring and inspection.

This turned into quite a techy blog. That’s deliberate: if we mean the vision for health and care which is rooted in communities and delivered with and by people themselves, we have to be able to describe the different systems and ways of spending money which would make that vision happen.

Feeling important

“Feeling important is awesome. I want everyone to feel important.” Nick, one of our Ambassadors opened our annual conference alongside the incoming President of ADASS, Margaret Willcox as co-chairs and instantly had the whole room of Shared Lives and Homeshare colleagues and participants engaged. He was talking about the experience of working with Shared Lives Plus as an Ambassador, doing work which makes a difference, as well as about the feeling of belonging and mattering that is at the heart of all good Shared Lives.

At the annual social services conference the week before, I’d enjoyed, as I do each year, catching up with a huge number of colleagues, making new links and learning about some of the most interesting initiatives around the country (not to mention being rubbish in the annual quiz). But a question from a parent of a disabled daughter stuck with me: “I’ve been looking at all these sessions and discussions and wondering where I will find my daughter in them?” The conference did include a small number of sessions led by people with lived experience including the launch of a new model of ‘coproduction’ from the group of people with lived experience at the heart of the Think Local, Act Personal partnership and an inspiring fringe event with DanceSyndrome and Community Catalysts. But in too many of the main sessions there was a yawning gap between the discussion’s topic and participants and the people whose lives were being discussed. When you put a lot of ‘important’ people together, it can be easy to lose sight of what and who is really important. As Nick told us at our event, it’s great feeling important but that feeling should be for everyone.

Our conference now attracts Shared Lives carers and people using Shared Lives, as well as one or two family members and there are sessions which are designed particularly with them in mind, but I suspect that they will at times have felt that gap in some of the discussions at our event too. Involving people who use Shared Lives and Shared Lives carers as speakers, co-chairs and part of the support team has made a huge difference and hopefully prevents us from straying too far from what we are all supposed to be about, but we know we have further to go. Now that our conference has a Homeshare strand for the first time, we are also starting to think about how people who live in Homeshare households can be a part of future events.

Coproduction, as experts like Clenton Farquharson will tell you, is a journey. If you think you’ve arrived, you’ve probably just stopped. At our event, I was immensely proud of the work that we do, of our team and the membership network of which we are a part. It’s rare I think to be at an event for 200+ which feels both nationally important and ‘like family’ as one participant put it, not to mention smoothly run by our amazing office team. But it’s important I think to keep asking ourselves: where are the people who we are talking about in these discussions? If they are in the room, leading those discussions, having helped to design them, the answer to that question is much more likely to be clear to everyone.

Getting off the merry go round

Here’s a blog I wrote in my role as a Trustee of the Social Care Institute for Excellence (SCIE)

Coproduction is a clunky piece of jargon for an important concept. There are lots of good definitions out there. Personally, the way I think of coproduction is that it is about everyone who is involved in a service or organisation, including those who use it and their families, making decisions together as equals, and then working together as equals to make those decisions happen. A truly co-produced service is co-designed with full involvement of people who use it and families from the blank sheet of paper stage, it employs people with current or recent lived experience in paid delivery and leadership roles and there are elected representatives of those people on its board.

There is lots which is co-produced about the sector in which I work, but at Shared Lives Plus, we felt and still feel that we have a lot further to go.

Shared Lives is a family-based way of providing people with learning disabilities, mental health problems and other support needs with the care and support they need in ordinary households. People are carefully matched with approved Shared Lives carers and when both parties feel there is a good match, they share home and family life, with 7,000 people living with their chosen Shared Lives carer as part of the household and 6,000 regularly visiting their Shared Lives carer for short breaks or day support.

So each Shared Lives arrangement is co-produced by the individuals and families involved. What people decide to do with their time together and how they live their lives is based on a care plan, but worked out day to day by the individual and their Shared Lives carer. Like any family life, it involves negotiation and give and take. Chris says: “I go to more places than before, like we just went to Brighton – I couldn’t do that before, there would be a lot more people involved and a lot of planning. Our trip to Rome would have taken much longer to plan for example. In residential I couldn’t go out to a club without having to do a risk assessment and care plan. I feel happy living here. A lot happy. I have independence but also care when I need it.”

We felt though, that the highly co-produced nature of individual arrangements was not reflected in our work to support the sector at a national level. So we are supporting and encouraging Shared Lives schemes to build independent local groups of people involved in Shared Lives who can help make local decisions and, inspired by the work of CHANGE, we have employed seven (very) part time Ambassadors, all of whom have current or recent experience of using Shared Lives. The Ambassadors speak publicly about Shared Lives. They are drafting a Charter setting out what good Shared Lives looks like, which we will be encouraging all local schemes to adapt and adopt with local people. They are also taking part in reviews of Shared Lives schemes.

The biggest impact we have felt as a team is Continue reading

Using time banking to change services

This guest blog is by Jude from Time Banking organisation Spice. Contact details – and details of their conference – below. Spice are using time credits to bring reciprocity and partnership – co-production in the jargon – to all kinds of communities and services. I’m a big fan and the examples below should inspire any service. So thanks to Jude, who writes:

Over recent months it has felt like hardly a day has gone by without another story about social care hitting the headlines – few of them positive. Staff on zero-hours contracts, 15 minute care visits, high profile care failures – the list goes on. It’s hard to deny that these are challenging times for the sector, and for the people who work in it. There is a broad recognition and agreement that changes are needed to overcome these challenges – but what’s actually happening in services?

One example of introducing new ways of working is the programme Spice has been developing with Look Ahead Care and Support over the past two years. We are training support workers in 18 services to design and embed the principles of coproduction in their services for people with mental illness or learning disabilities, in both residential and floating support settings. This is being done through learning sessions on coproduction and then in turn implementing Time Credits programmes in each service enabling users and staff to collaborate on how the Credits are earned and spent. A Time Credit is a physical note that is earned for an hour’s contribution to a service or community and can be spent on an hour of activity such as an art class or museum visit.

Our – and Look Ahead’s – ambition is for Time Credits to help transform the way that users of services are involved in decision making and how the service is run, particularly in decisions about their day to day life and support . Time Credits are already incentivising many more service users to get more involved in their service, with participation in service user meetings rising from 2 to 15 in one service over 4 months, and a wide range of new activities starting up based around people’s interests resulting in over 500 hours given to services HSC3and peers and almost 200 hours spent in services and across London. People are earning credits for activities ranging from gardening and activity group setup to DJing at events, arranging social outings and setting up a peer-led women’s support group. Spending has included trips to the Tower of London, Museum of London and going climbing as well as accessing a range of new internal activities.  

Alongside the outcomes for service users Continue reading