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:

SocCareF2019asSocCareF2019bs

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.

This note and artwork by Dr Pen Mendonça offer a summary of thinking and ideas generated by #socialcarefuture network members in Birmingham on 28 November 2019.  It is presented here as a starting point and comments and suggestions and you are invited to help us to develop it, either using the comments box at the bottom of the page, via Twitter or Facebook or by contacting us at socialcarefuture@gmail.com

#socialcarefuture’s work on a new story is following the four stage research process outlined by the US-based organisation ‘Heartwired’: what is the change we seek and who do we need to persuade? What is the current landscape of discourse and thinking? What are the mindsets of our target audiences and how can we most successfully persuade them to support our values, vision and ideas?  Clarifying the change we are seeking and who or what needs to be persuaded by a new story to achieve it is the crucial first stage. This session was organised to explore those questions. The note below is based on the record of discussions taken down on flipcharts by colleagues during the session.

What is the big change we want to see? 

‘It starts with dreaming’

‘Social care’ as usually described, understood and done as a single one way service that ‘cares for’ older and disabled people, either in a person’s home or in some form of group arrangement. ‘Care’/being cared for itself is seen as being the product.   Ideas and discussion about social care are nearly all based on what has been called a “professional gift” approach, with low expectations of those older and disabled people needing support, which can be stigmatising.

Those coming together in the #socialcarefuture network practice and aim for a quite different model, whereby the ‘product’ is the person who needs support better positioned to lead a life they value, supported by and contributing to a shared web of community support. Rather than ‘caring for’ older and disabled people, the starting point is ‘caring about what people care about’ and working alongside people to make it happen. It is a model that is about the person establishing or re-establishing their identity and building upon their own strengths, including through the ‘glue’ of their relationships with the wider community. Any support is designed to transport a person towards achievement of their life goals (however seemingly modest), and not to constrain them. It is about establishing or restoring people’s potential and about supporting people to ‘be awesome in our own ways’. If working well, people with high support needs will be visible in their communities.

If this change is achieved, getting support won’t lead to stigma, just as going to see your GP doesn’t. Nor will it involve battle or cause fear. People will get support through a range of ways-in, with peer support available in hospitals, via the police and so on. Both those looking for or receiving care and support and those involved in providing or helping it happen will know, assert or live by their rights and obligations, with human rights being front and centre.

As a result, rather than a single “transactional” service, achieving these results involves activity to secure or build ecosystems of mutual formal and informal supports.   When working well, this web of relationships, living conditions and support acts as the ‘invisible scaffolding’ that provides us with what we need to lead our lives as we want to. Formal and informal support will be blended.

Like life, this approach to supporting people is messy rather than uniform.   But it doesn’t just happen. More financial investment is necessary, but it must come hand in hand with reforms to unlock imagination, creativity, problem-solving skills, resourcefulness and the power to make change that exists across all our communities.

What are the main obstacles in our way? 

Dominant definitions of social care are too narrow

Social care is being politically “framed” as about protecting property wealth or as free personal care for older people only. This begs the question: is what we want served well by the name ‘social care’? The media ‘don’t quite get social care even when trying’

Problem attitudes and baked-in low expectations

The general public does not see social care as having immediate relevance to them. Experience of the social care system has reduced expectations among people and their families about what is possible. People are worn down and prepared to accept mediocre support. Ageism and paternalism influence (and are influenced by) narrow ideas about social care. It is sometimes argued that our ideas don’t really work for people with significant impairments and health conditions such as late stage dementia. There is also a lack of trust in people and communities to take charge of their own care and support or to spend public money properly.

Rigidity and resistance to change

The imagination and creativity that can be found in the approach of members of the #socialcarefuture network is not routinely valued. Commissioning,  procurement methods and regulation are often rigid and suffocating. The regulator is not measuring the right things and lacks ambition. The system’s desire to control struggles with the messiness of community doing it for itself. The “sector” prefers re-organisation to overall system change and is risk-averse. It approaches scaling through standardisation in a way that can crush creativity e.g. social care workforce development and recruitment-drives are focused on a fixed idea of the ‘care worker’ quite at odds with the idea of a personal assistant. Even where there is progressive leadership in local councils, a disconnect can exist between leadership and commissioning practices.

Power and influence lies in the wrong hands

The sector sees itself as the experts. There is little ‘consumer voice’. A culture of ‘us and them’ persists between those ‘providing’ and those ‘receiving’ services. Few organisations understand how to work co-productively. There are powerful vested interests perpetuating existing approaches. Social care continues to be based on a ‘gift model’ ‘theirs to give’ (gatekeeper) rather than ‘ours to take’ (rights).

Who are our ‘persuasion targets’?

Participants identified the following as key ‘persuasion targets’:

  • Social care leaders and commissioners
  • Those who come into the social care workforce
  • The media and public who lack ‘a positive contemporary story of social care’
  • The public who don’t understand what has to change or their part in it
  • Politicians who get their ideas from the unambitious ‘sector’ or think tanks that are not well connected to the lives of people using social care – not from people or a more demanding public

Ideas for winning the change we seek.

Changing the story

A new story to reframe what social care is for and how it works, should centre on stories in which the role of care and support is embedded rather than stories which begin with social care, helping it to be understood as a means to other (commonly valued) ends e.g. Stay up Late’s focus on going to gigs. It should also major on these ‘better ways’ to help redefine what social care is understood to be and how it works well – for example, a recent news story of an older man going to school to have his lunch and talk to kids; of the pub opening up to offer free meals and company on Christmas day

Movement building

We should support the development of a local, regional and national network for change. Borrowing from the ‘Every Australian Counts’ campaign, for example we could promote a national coffee morning, encouraging people to come together and to talk about how they can together improve care and support in their area

Using law

 We should promote “legal literacy” among those using and those delivering care and support, including the Care Act, Equality Act and Human Rights Act. We should encourage legal enforcement in the field of social care by the Equality and Human Rights Commission

Rebuilding self advocacy

We should encourage and push for investment in family, peer and self advocate leadership

Wide-angle lens

Social care should be seen as sitting alongside housing, health, education, community development and regeneration in making good places to live rather than a standalone service, or adjunct to the NHS.

 

We would like to extend our special thanks and good wishes to Dr Pen Mendonça 

By Julie Stansfield

all together copy

As one of the convenors of a growing movement, I am proud, with In Control, to be hosting #socialcarefuture

Looking at the pre-election debate about social care I am struck by the absence of the voice of people and families who use it. I think that this absence pushes the debates – and probably the manifestos – in a narrow direction. The debates are about personal care and property wealth when they should be about good lives for all in strong supportive communities.

Over many years now In Control and our partners have found that when you bring people, families, professionals and managers together they find common ground and energy to build something so much better.

Last week we met a new “All Together Better” group. As we travelled down from Manchester to Somerset I wondered what the group would be like. I’ve learned you can never tell from application forms nor from first impressions. The process of those who embark on this journey is always different and unique. Nobody knows the troubles people carry with them and how the first session – where we go deep into ‘why things are the way they are’ will affect them.

What I do know is this course is the most worthwhile time I ever spend. I attended the very first course of Partners in Policymaking that took place in Oldham in 1996. 23 years later and with a range of associated programmes like “All Together Better”‘ I continue to bang this drum as loud as I can and make no apology for doing so.
In the majority of current great co production & “patient” leader groups, you will find Partners graduates. These are leaders that have negotiated with ministers, civil servants & senior managers for a better social care future.

This vast network across England (and beyond) is not organised by any one person or organisation, you will find Partners in very many organisations across England & Scotland. They all work & take action in different ways but they all share the beat of the same drum.

The significance of these courses is not purely in the course programme itself, that’s just the start of the journey – it’s the journey itself. It’s being given the magical mixture of grounded information along with inspiration. The knowledge aligned with hope takes each individual on their own journey but also unites them as a bonded group. It’s always interesting to see people come in their named role of worker, mother, father, professional, recipient, nurse and see that even by the end of the first session the roles drop and they see each other as people with gifts & talents to be used to lead change.

Last week was no different – families sat with council workers and providers and talked about what they had heard, how they felt and what change they would like to see locally. They currently have little idea of the growth of power that these conversations will achieve over the next 4 months.

Facilitating the groups is a massive responsibility, making people feel as safe and comfy as possible whilst the speakers rock and challenge them to think hard and inspire them to be the change they want to see in the world.

Partners become national pioneers, leaders of a better future, change makers, the range and variances are vast with just the one thing in common….inclusion of all people.
Gavin Croft famously said to a minister “I want a life not a service.”  This mantra has carried through generations of advocates for a better future. We are not there yet for the majority of people but the network grows and spreads to all people who want a better future.

I’ve seen people awake from bureaucratic slumber and become the most motivated leaders of change. I’ve seen people tired from the battle suddenly change direction and find a completely different way to get on with what’s important in their life. These amazing stories bring to life the quote of Margaret Mead “Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it’s the only thing that ever has”

Julie Stansfield ~ CEO ~ In Control Partnerships

@juestanny

friends

Dear Friends

Please join us at the next Social Care Future Gathering at Friends Meeting House in Manchester on February 4th 2020.

This action-focused gathering is an opportunity to work together to help bring our emerging story of a brighter #socialcarefuture to life. It is the first of a series of gatherings that will take place every three months throughout 2020, to explore and develop our work on some big themes. The core focus of this first gathering is on our work to change the story of social care. As well as “reframing” we will have sessions and discussions about the initiatives that people have already started or that they are planning to build, plus some “open space” for people to bring and share their ideas and actions with others.

For more details and how to book, download the flyer here and easyread flyer here.  Please share with your colleagues and networks!

 

Tim Cooper, chief executive at United Response.

winning

Despite the reason behind this election, it’s still a ‘general’ election after all – one based on the full list of things which matter to voters up and down the land. If it wasn’t for the six-letter-word-beginning-with-B, social care reform would probably be higher up this list – and it certainly needs to be. So as the parties begin to launch their manifestos this week and election hype rises to a new level, we should expect to see social care reform playing a large part. But will we?

Even in these bizarre times, social care has stayed on the agenda… just. Quite an achievement given the limited capacity in parliament for any domestic policy since 2016. The problem is that care is an issue because it’s so bad, not because of the fantastic new models of inclusive community care and support which are emerging.

We in the social care sector have been guilty to some extent, focusing only on crisis and a lack of funding to fix it. The negative perceptions this creates undermine the real progress we have made in developing and delivering new community based approaches to our support.

For well over a decade a social care system funded in a way politicians think is acceptable to the British public has eluded policy-makers. It has beleaguered successive Prime Ministers, was (skilfully) dodged by the longest-serving Health Secretary in British political history, and famously cost the Government its parliamentary majority at the last election.

A former boss of mine used to remind staff: ‘Bring me solutions not problems’. On his first day in office, the current PM promised a new solution to ‘fix social care’ by the autumn – then swiftly kicked it into the long grass, reportedly after seeing the plan the Government had spent two years on. He told the Health Secretary to ‘do it again’.

The stakes are high and on one level it is understandable policy makers won’t stick their neck out, but if we need anything now it’s political courage and foresight.

Notwithstanding that most people don’t understand social care until they or a loved one need to use it, their perceptions are based on reports of a failing system, the billions it would cost to fix and where this money should come from – namely from themselves.

Politicians know that money has to come from somewhere. Raising tax is unpopular, insurance schemes subtracted from pay slips are a hard sell, Government taking a chunk of value from people’s houses loses elections. And then there’s the fact that over half the investment in social care supports disabled people who need care and support throughout their lives.

So the story of social care has become Kafkaesque: negative perceptions posing political danger leading to postponement and evasion, while the existing system gets worse and the process starts again.

Manifestos coming out this week must change this narrative to break the cycle and attempt to reframe reform as the positive opportunity it really is – painting a picture of the great work already being done at the centre of local communities across the country and how this could become the norm.

Manifestos should show how valuable social care is, not only in financial terms but in terms of the difference it makes to communities. People might then understand reform and the benefits it would provide. If the narrative is changed and this vision is sold to the electorate, they might consider fair ways to fund it, removing the political danger so that politicians have the confidence to put real choices to the people.

But it’s not just politicians who have a responsibility to change perceptions. Providers like ourselves at United Response and others in the sector have a duty to demonstrate what good care and support looks like too. Organisations have gone on about the ‘Care Crisis’ and billions needed to fix it for too long. This has undermined progress and emphasises the ‘bad’ over the ‘good’.

That’s why we’ve been working with Social Care Future and supporting their brighter vision for social care. This approach centres upon the importance of speaking of social care in terms of hope and possibility. As a sector we want to offer a positive vision of the future as well as spelling out how our work might serve as potential solutions to take us there.

There is one narrative of social care not mentioned so far and, believe it or not, it’s positive. All the parties broadly agree that a successful care system must be jointly delivered and fully integrated with community health services and other local public provision. Disabled people, children, elderly people, families – people across local communities brought together to access a range of health and care services that everyone needs.

Perhaps another ask for manifestos this week is an agreement for parties to work together in the next Parliament to sell this shared vision. Perhaps then we might add a new slogan: ‘Let’s get social care done’.