This is the first of a new series of Social Care Future interviews and blogs. They will be with and from people who are stepping up to take action to connect and support people and communities during these really hard times of the Corona virus.

We want to share the ideas driving what people are doing and especially the kinds of action being taken. We also want to bring out issues that need addressing.

Looking to the future we are asking for people’s thoughts about how they see things changing in society.

Today we are interviewing Julie Stansfield the CEO of In control, convenor of Behuman and more recently a driving force behind coronaheros. Julie is also one of the convenors of #socialcarefuture and In Control provides hosting and admin support to us . 

With colleagues Julie has set up Coronaheroes to co-ordinate community response to the virus. She speaks about how the mutual response has developed, how it links with statutory support 7 big issues arising. Among these are those facing people using direct payments using personal assistants. Finally Julie offers thoughts about the post virus future.

By Paul Richards, Stay up Late

At the recent Social Care Future event in Manchester we heard and thought a lot about ‘framing’, or how we tell the story of what needs to happen to transform what we call social care. The narrative in the media is generally that social care is in crisis and heading for impending doom. This sort of framing only serves to create a sense of panic and helplessness, the result being we do nothing, because there is nothing more we can do. We see parallels with the way the media covers climate change too.

If we reframe the stories that we want to tell then we can demonstrate that change, and radical change is possible. That was the inspiration behind Stay Up Late’s (un)Ordinary Conference which was held in London in Spring 2019.

Firstly, the conference was about giving a platform to people with a lived experience and all the speakers and facilitators were people with learning disabilities and/or autism. We didn’t even have one token social care professional up on stage!

We did have an audience made up mostly of social care professionals though as we wanted them to go back to work and make changes based on what they were going to hear on the day.

The second main idea behind the conference was that it’s really easy to be negative and talk endlessly about all that is wrong with the world, but again that does nothing more than create a sense of helplessness and despondency. We wanted to share positive stories of how people with lived experience had managed to live the lives they want.

We heard stories like:

Amber – who has a job working for an arts organisation in Manchester

Phil – who ditched his old support and found someone who would support him to achieve his dream of marrying his partner

Fiifi – who was supported to rebuild his relationship with his father through the grief of losing his mum

Laura – who talked about the joys of being a mum

Simon – who organises late night karaoke sessions with his mates in mainstream pubs in Cardiff

Ben – a young man who goes to raves along with other young people, based around their love of the same music scene.

All these stories posed the same over-arching question:

‘how can we make ‘ordinary’ lives more of an ordinary thing for people with learning disabilities?’

At the conference we also launched our ‘Manifesto for and Ordinary Life’. It’s a straightforward document that fits on a postcard and echoes the same aims of Social Care Future. It was co-produced with people with learning disabilities and reminds us that we all probably generally want similar things in our lives; to be loved, to be valued, to be welcome in our communities, to see our friends when we want to and not be governed by inflexible rules.

Nobody who contributed to writing the manifesto ever told us about the sort of service specification type place that they wanted to live in. They just wanted a good life for themselves.

It has got me thinking how there seems to often be a big gap between what is commissioned and what people really want in their lives.

One example of this is how services are commissioned that enable flexible support. Our experience is that this just isn’t working at the moment. Go to any club night aimed at people with learning disabilities and you will probably see the same thing happen. The dance floor will be rammed at 8.30pm by 9pm the place will be empty. Why? Because support staff can’t work late and need to go and do ‘the handover’.

There are of course support provider out there who totally know how to provide flexible support and in my experience those are the providers who don’t instinctively just provide flexible support around evenings but also provide great support in other ways. They have a good culture around supporting people in making choices about their lives and understanding what is important to them.

So we’ve started a campaign called ‘No Bedtimes’ – inspired by the work of the Big Bed Time audit (which was in turn inspired by our work) we’re now calling on an end to inflexible support that effectively means adults are told what time they need to go to bed.

We know that there is a lot more that needs to be done to make sure local authorities commission support provision that truly enables individuals to lead the lives they want but a simple pledge to ensure that all providers have to provide flexible support would be a start.

“No amount of talking can mend this broken heart but you can put the hoover round if you want to make a start”. Valentine’s day is over, Billy Bragg

I love this lyric as it always reminds me that we could sit around and talk about our problems all day, and how many people do we know who like to have meetings about this sort of thing? But there’s also power (albeit a small change) in just doing something practical like putting the hoover round.

We know that there needs to be a radical overhaul of the thing that we currently call ‘social care’ as it’s not fit for purpose but there is also a danger that we can sit in meetings and imagine new ways of doing things that as so radical it’s hard for people to imagine where to start. You can imagine the ex-lover sitting there devastated with their broken heart and not knowing what to do.

A small practical action may not mend the real problem but it’s a sign of intent, an act of kindness and it’s a start!

I believe we all have to take practical actions that will make immediate differences and also set us on the path to a better future. So, I’ve set my ‘hoovering’ challenge at the end of this post.

What we also find though is that the language of commissioning is inaccessible. If those of us who aren’t from a commissioning background don’t understand it how can we be part of trying to help improve things?

More importantly if people who need support don’t understand the commissioning process how can they exercise their rights as citizens in helping to shape the support they receive?

So here are Stay Up Late’s questions and challenges for commissioners (and all of us)

  1. How can we commission support that truly enables ordinary things to happen in peoples’ lives?
  2. How can we explain what commissioning is about in an accessible way?
  3. Why can’t we end the practice of support providers telling adults with learning disabilities what time they must go to bed?
  4. What practical bit of ‘hoovering’ could you do right now to make a start with creating better lives for people who need support?
  5. What can commissioners learn from those support providers who have embraced change and who are doing the right thing?

By Huw John, Camphill Village Trust

With social care really struggling after so many years of cuts and political failure, how do we collectively rise up – because without a vibrant, responsive and empowering social care movement our society will become further fragmented, increasingly less tolerant and less inclusive.  

Most people, at some point in their lives, require support and encouragement to be active citizens, to be part of what surrounds them, family, friendships, a sense of purpose, acceptance and belonging.  For some people, through circumstance or disability, these opportunities are limited or just don’t exist.

Social Care is so much more than large scale corporate mergers and endless refinancing deals, its about people and community, its about the fabric of our society and it is a mirror of our individual and shared values. Social Care is you, me and us.

Even the best social care organisations are now being forced to “batten down the hatches” to ride the funding/staffing/regulatory/commissioning/misunderstood storm. Innovation, real coproductive partnerships and community work is at serious risk of being driven out and we are worried about drifting back to “time and task” care and institutional support.

However, this is no time to hide away with our fingers crossed, hoping for more funding, common sense or bravery from  Government  – we need to be heard above the storm and it’s no coincidence that the Social Care Future movement is providing a vehicle, a platform and a supportive place for like minded people and organisations to find a common voice and tell a shared story.

This is a brave story though, and maybe not one everyone is comfortable with because it’s much more than a plea for more money  – it’s about who is making the important decisions in people’s lives, how is the money used, doing things differently, and how can we get our compelling and persuasive social care story across to people, communities, the Media and Government. It’s about changing the understanding, perception and support of social care – it’s not about fighting the old fight anymore.

Social Care providers, Local Authority commissioners and sector bodies will need to find the individual and organisational courage to stand alongside people, families and communities to make this happen as the alternative is no longer an option.

Huw John is CEO of Camphill Village Trust, Trustee of VODG and strong supporter of Social Care Future.

By Susie Finlayson, Power to Change & Sian Lockwood, Community Catalysts

The default approach to social care in many local authorities remains traditional models of “delivery”, and profit extracting ownership. These traditional forms of service are typically offered on a ‘time and task’ basis, providing the care that people need to stay alive but not necessarily to have a life. The 30% annual staff turnover in traditional care organisations suggests there is something wrong in the way people are being asked to work as well as in their pay and other terms and conditions. And many of the larger care organisations are owned by distant shareholders, with profits going to them rather than to the places and communities in which the organisations work.  

There is growing evidence that community owned and led organisations are able to provide the services and supports that people need in a way that helps them connect to their community, provides a route back into care for staff disenchanted with the traditional care sector, creates local valued jobs and helps local money stay local. But these community solutions are often seen as ‘nice to have’ and lack traction with those commissioning health and social care and within wider local economic planning. Public bodies are missing the opportunities provided by community-led services rooted in local places that tap into local resources to help people get the support they need to lives the lives they want.

At #socialcarefuture last week Community Catalysts and Power to Change led a session exploring the role and power of community-led responses that provide flexible personalised  support for people who need it, contribute positively to the communities in which they work and provide good work conditions for staff.

As one of the people attending our workshop said – “good lives are about much more than social care”. Our two speakers illustrated that point very neatly.

Pulp Friction evolved from the decision by a daughter and mother  to create their own work opportunities when it became obvious that the daughter would not be able to geta job in the traditional food industry much as she wanted it. From its early start with one smoothie bike, Pulp Friction has gone on to create a fleet of smoothie bikes, a choir, dance troop  and  is now providing the catering within fire service facilities in Nottingham. It provides work-based employment training and skills development to people traditionally excluded from the workplace and has an excellent track record in helping people into employment. In the process people have the opportunity to make lasting friendships and connections with the communities around them .

We may not think of a pub as social care, but The Bevy in Brighton is another great example of communities providing a safety net and as well as much needed support for people Bought by 700 members of the local community after the previous pub closed down. The Bevy promotes the wellbeing of local people & reduces isolation through affordable meal options, healthy cookery courses and  ensuring isolated residents are reached via a minibus for weekly lunch clubs. It recently ran a successful Crowdfunder campaign to set up a meals on wheels service for people who can’t, or don’t want to, get out to the pub that Power to Change was pleased to support. Over 70 different groups meet at the pub. But this work, truly being more than a pub, isn’t funded by the local authority or NHS. The pub relies heavily on volunteers and cross subsidises activities where it can manage to generate a surplus.

These two very different examples, as well as countless others across the country, have some key similarities: People leading these ventures haven’t been asked by the ‘system’ that bounds traditional social and health care to do what they do. They haven’t sought permission from that ‘system’ either , which allows them to be flexible and follow the opportunities that arise to support their communities. These community businesses and enterprises draw on the assets of communities as well as focussing on supporting people; they contribute socially, improve health and wellbeing and contribute to local economies and crucially; they treat people as a whole person in their community. Public services often operate in siloes but community enterprises and businesses are not bounded by those siloes and reflect how we, as people, navigate the world.

Together, Community Catalysts and Power to Change as part of the broader #socialcarefuture movement, want to invite you to join us in creating a shift in the value placed on and the resource put into these kinds of community-led and driven supports, and to challenge the system to move towards supporting people and place rather than the traditional sector or departmental driven approaches that are currently most prevalent.

In June alongside #socialcarefuture, we’ll be digging deeper into these topics with a whole range of stakeholders, organisations and of course people who receive support as we run a whole event focussing on putting communities in control of care and support. We want to bring together people and organisations to design and build a powerful set of actions and initiatives, that can help shift these community-led and owned organisations and ventures into the mainstream. We’d love for you to join us.

To find out more and keep an eye out for more information about the event sign up to the newsletter here.

Power to Change is supporting community businesses in health and social care, for more information follow this link or email healthcop@powertochange.org.uk.

Community Catalysts supports local people to set up micro-enterprises that help other local people. For more information go to www.communitycatalysts.co.uk and www.smallgoodstuff.co.uk

By Professor Catherine Needham

MiXiT go ‘the full monty’

I don’t particularly like noise or conflict. At the various academic meetings and events with policy makers that fill my weeks there isn’t much of either. Both of these were in evidence at the #socialcarefuture event in Manchester last week, and at the end I felt invigorated.

I didn’t think I liked the music from the Greatest Showman that my daughter inflicts on us, but watching MIXIT (@MiXiT­­_MUSIC) perform This is Me was an emotional and energising way to start the day. The woman next to me got her tissues out, and we chatted about that, and the community pub she co-runs that’s creating an accessible space for people on an estate in Brighton – The Bevy.

Next was a session on the Care Act. I’ve sat in a lot of events about the Care Act in which we’ve talked about the rhetoric/reality gap and the policy initiatives that are seeking to bridge the gap. This session was different. It was loud and angry. People talked about their lives getting worse not better, and about the way this was reducing the trust they had in what professionals were telling them.

Angry muttering accompanied the alphabet soup of acronyms on the slides (which we all use until we get reminded how exclusionary they are). The muttering stopped though when Rachel, one of the presenters started telling us how she was using a direct payment to support her son, avoiding an eye-wateringly expensive out of area placement and getting better outcomes. She’d had a supportive social worker and an approval panel that focused in on the message that what she was proposing offered the likelihood of better outcomes at half the price. She got lucky in a system that struggles to facilitate these sorts of arrangements apart from for a few people at the margins. The presenters then talked more about such examples and how they could be enabled if more places took and used these approaches.

I’ve been doing research with local government commissioners, highlighting the very difficult context in which they are trying to implement the Care Act. So it was great to get a positive message of change from Tara Flood and Kevin Caulfield from Hammersmith and Fulham. Disabled People there had led a campaign to improve the rights and support for disabled residents in the borough. At times noisy and conflictual in their tactics, the result was a local Disabled People’s Commission that led to Tara and Kevin being appointed to a strategic role within the borough. The borough has adopted the recommendations of the commission, including around the lifting of home care charges for disabled people.

Individual positive examples aren’t the same as the systemic change that we need in social care, but they do provide the hope and sense of possibility that things can be different. And they offer a reminder that change comes in part from noise and resistance, however much that makes us feel uncomfortable. My tweet after the gathering reflected my thoughts “Been to lots of events this week but #socialcarefuture was the only one where I felt more upbeat at the end than I did at the start”

Martin Walker and mother - Copy

Following the social care future gathering in Manchester, Martin Walker from Think Local Act Personal (TLAP) reflects on what he learnt and what needs to happen next.

What’s the difference between the reality of people’s experience of care and support and what they should be entitled to? I was really pleased talk at Social Care Future in Manchester with my colleague Rachel Mason, from the National Co-production Advisory Group, about self-directed support and try to fathom this out.

For some time now at Think Local Act Personal (TLAP) we’ve been talking about a gap between the rhetoric of the Care Act and the policy of personalisation it embeds into the health and care system, and the reality that people needing care and support experience day to day.

We weren’t quite prepared for the stark opinions from those participating in our session about the size of the gap. My reflection is that it seems more of a chasm than a gap.

We were particularly reminded of the ongoing injustices that many people with mental health needs and those in assessment and treatment units still face. They are not benefitting from a self-directed approach to meeting their needs under the law.

Lack of trust surfaced as being at the root of the problem. Trust between people and practitioners. Trust between commissioners and providers. Trust between regulators and those with other statutory functions. Trust at an individual and at a system level.

But trust about what? I’m not sure we answered that question but it feels like a line of enquiry we could usefully pursue at TLAP, along with our partners.

There seems to be a hunger to hear about places that seem to be getting past these issues and to know what the ingredients for success were. In my experience, authentic co-production is fundamental to this. You can read some stories of success in my articles here.

At the workshop there seemed to be a need to out the scale of the frustration about the size of the gap so we didn’t really get to what we’d hoped for; a harnessing of collective knowledge experience and brainpower to work the problem and come up with a positive way forward.

Rachel and I put to the group some of our ideas, founded in both academic evidence and lived experience:

  • People should be helped to develop their care and support plan should they need it by skilled people outside statutory services.
  • The value of peer support with the whole self-directed support process has been under-estimated, investment needs to be made in Disabled People’s organisations.
  • These organisations would be best placed to provide Direct Payment Support services which could include the development of care and support plans.
  • We need to bust the myth that Direct Payments are not for older people.
  • Similarly, Direct Payments are not about only employing a Personal Assistant. Some people are successfully self-building their care and support in innovative ways, often with other micro-providers. More could be done to share these experiences.
  • Every area should have an Individual Service Fund offer. The potential of Individual Service Funds to transform how social care works is being missed.
  • The offer to carers to get meaningful breaks needs to change. Many do not want to put their loved one in a care home in order to have a break from caring.

We also reflected on the number of networks that operate specifically about self-directed support. My own experience is that each often talks about the same stuff and frustrations. How do we move on?

We could usefully think about how we form a positive coalition around self-directed support to engage at the highest levels. We need to promote ideas about how to close this gap from the knowledge we keep gathering. You can’t bridge a chasm by taking baby steps when we need a leap of faith instead.

As one delegate ably put it – we know what works, we just need to get on with it.

Over the past year lots of us have go together to talk about how we can produce a compelling new story of change that can help move our ideas and ways of working from the margin to the mainstream where care and support is concerned.  This post draws your record of the work we did together.

First of all, we met in Manchester in May 2019 and talked about our vision for the future.  You can read a summary here and we included it in our publication ‘Talking about a brighter social care future’ which was published in November 2019.  Below are the ideas and thoughts generated on the day:

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Then in November 2019 we met in Birmingham and thought in more detail about the change we want to see in the world.  You can read a summary here

We thought about how the world would be different if our ideas took root:

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We considered what national and local government would be doing if it was aligned with our vision:

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And we considered what the chief obstacles are that stand in our way and the arguments that are made against our ideas:

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Then we thought about who we need to influence and what might win them over:

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We were also fortunate to have Dr. Pen Mendonça  on hand in Birmingham to produce her interpretation of our discussions:

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Next we’re going to start looking in detail  at public ‘mindsets’ – at how people talk, think and feel about care and support.  In Manchester on February 4th we’ll work together to build some ‘hypothesis’ about public thinking which we’ll test in the research, before we begin to develop and test a new narrative.  We’ll be joined by Equally Ours who will kick of the day with a ‘framing 101’ session so that we’re all up to speed on the approach we’re taking.