Nick & Terri Henderson

How did we get here?

On the 14th and 15th of November people who are passionate about supporting each other to make positive change are coming together to think radically about social care. Nearly 300 people have volunteered to come along to the Friends Meeting House and People’s History Museum where we aim to contribute to a developing social movement.

For too long we’ve had similar conversations with similar people in different rooms – people who commission social care, people with responsibility for providing services, workers, citizens, community and voluntary groups and people who use social care, and their families. We’ve seen national initiatives come and go – but we haven’t managed to change things dramatically.

We’ve been under tremendous challenge, especially during a period of unprecedented cuts. But, In fact, we’ve seen glimpses of what the future might look like…

  • Using all resources
  • Putting co-production at the heart of social care
  • Exploring new types of organisations – human sized and shaped, community led and embedded
  • Changing the way support is provided and looking at new professional roles
  • Transferring power and resources to people using social care
  • Seeing the whole person to better understand the role of housing or health

After last years’ National Children’s and Adults Social Care Conference many of the participants asked “What would a different gathering look like?. Could we take a radically different approach?. What would that look like – how could it be more diverse and inclusive? What are the most important questions that we need to answer at this point in time, November 2018? Who needs to be involved and who do we need to influence”?

What’s important about this gathering?

James and Andy front door

  • This is not a conference. It’s a gathering of people who want to build a positive future for what we currently call social care. It’s volunteer organised, a developing network of people discovering, sharing and building from glimpses of the future.
  • At the gathering we will all be active contributors. We are inviting people to come who want to be part of this future and will commit to play a part in building it by sharing, learning and organising. They will include local citizens, professionals, politicians, managers, providers of support, user and family led groups.
  • We will be arranging a range of ways to help learning and sharing – what have people done, what difference has it made, what lessons have been learned, what helped, what are the next steps, what would help these happen? As well as structured sessions there will be “open-space” to organise there and then to respond to people’s interests.
  • It will be energising and social as well as informative and action-focussed. We will be sharing what we do outside the room, immediately reporting sessions and plans so others can connect. There will be fun too. The gathering will include an evening social gathering, pieces of theatre and performance and the chance (optional!) for you to join in! It will be hosted to bring you in, not keep you separate, whoever you are.
  • It will be sustainable. We will create opportunities for people with similar interests or energised by things they have heard and discussed, to plan for action after the gathering. #socialcarefuture will offer whatever help it can to support these action groups with links and contacts and communication over the following year. We are deliberately running the event to coincide with the National Adults and Children’s Social Care Conference taking place nearby at the same time. We are making sure there are good links and some joint sessions and inviting people from that event to our gathering. This gives us a chance to bring together all voices with a stake in the future to find ways of working to make it a reality.

What’s going to happen over the two days?

It’s going to be an extremely busy, exciting two days. The main focus will be debates, sharing and planning around key themes. These include:

  • System leaders, politicians, community and voluntary groups, local citizens exploring “glimpses of the future” from 6-8 places where power is being shifted to people and communities.
  • Making a new case for social care based on new research and with a major proposal for action
  • Everyone in what are the best examples including everyone, including those most at risk of exclusion and how to do it – how can these be built on everywhere?
  • From the margins to the mainstream Sharing and learning with groups and initiatives helping local places to move more quickly to a better future where effective innovations complement or displace traditional models and practice: including: Well-being teams, Community Catalysts, Homeshare, Three Conversations, Community-led social work, Community Circles, Manchester Cares, Spice Time Credits, Volunteering Matters, Grapevine, Keyring, In Control, Circle and many more
  • Closing the Care Act Rhetoric-Reality Gap – Join in with the developing National Network for Self-Directed Support for a practical session of sharing and learning about how people can get the support they need and the lives they want.
  • Building a movement for a better future Learning from other movements for social change from around the world about how we can act together to make faster change towards the #socialcarefuture that we want and organising ourselves for action.
  • Providers for a better future – Sharing the best ideas and planning for action about how organisations providing support can be real assets in the communities they serve.
  • Human sized, community owned support How can we grow human sized and shaped support organisations that add to communities.
  • Social work in the #socialcarefuture Exploring the role of social work in our desired future.
  • Researching a better future What kinds of research can support a positive future? Helping plan the next five years of the School for Social Care Research

We’re also going to create an open space for people to show and talk about what they’re doing already. There will be a social evening with dance and drama productions. At the end of the second day a group of participants will be heading over to the NCASC conference to present a summary of the discussions to Directors of Adult Social Services.

 

 

The Social Care Future blog was launched in early 2018 as a crucible for ideas about and examples of how to transform social care in the UK. It has projected voices from a spectrum of people that reflects the breadth of collaboration needed to make meaningful change happen, on an undertaking of such scale and complexity.

There are words from people with lived experience of social care CEOs, professors and many more – good and bad. There are words that express hope for what could be, admiration for the pockets of innovation that are, and anger at things that have gone wrong and need sorting out.

But there are themes on which all the voices in these stories harmonise. Foremost among them is the conviction that “we can do better,” as laid out in Martin Routledge’s introduction. He describes a landscape in which there already exist tantalising examples of what better social care could be – if only we could come together to bring them from the fringes and into the mainstream.

That means somehow finding a way to apply the personalised approaches designed for and in collaboration with, people using support as individuals, for the many.

The importance of communication runs through all the blogs. How we talk about social care has a close relationship to how it actually is. The type of framing placed around discussions of social care has a huge influence on what people think about it, and ultimately shapes the direction of action taken by the people with the power to act.

System leaders don’t exactly get an easy ride in these pages, but they are treated to a host of tangible, workable suggestions for how power can be shared and invested in people and communities who use social care. We look forward to you joining the conversations at our gathering this week!

By Steve Goslyn

“I used to think that the worst thing in life was to end up all alone. It’s not. The worst thing in life is to end up with people who make you feel all alone.”   Robin Williams

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In preparation for Social Care Future, a group of us who were involved with Social Movements for Health in Stockport, Oldham and Tameside have been thinking how the momentum around tackling loneliness and social isolation could be maintained. Our approach has been to work with what’s strong in communities and led us to continue a partnership with Paul Hine of Made by Mortals and the Johnny Barlow theatre company in Tameside.

Learning from people’s direct experience of isolation and loneliness we are codeveloping Ears Against Loneliness, a piece of forum theatre which will offer ideas for action. We see Ears Against Loneliness is a social movement that aims to challenge people to act against loneliness by donating active listening time.

Our campaign will contain a piece of forum music theatre performed by participatory performers with lived experience working alongside professional actors and musicians. The show will explore the skills, challenges and triumphs of putting your ears against loneliness. The performers will come from The Johnny Barlow Theatre Company (a drama group for people with mental health and learning difficulties) and students from Pennine Care Health & Wellbeing College. To help create the show the participatory performers will take part in a series creative workshops (music making, lyric writing, roleplay, creative writing, movement) exploring loneliness and the impact of not being listened to. The workshops will aim to develop and enhance a range of soft skills for participants, including team work, creativity, confidence and aspiration building and communication skills.

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The idea is that Ears Against Loneliness is used with loved ones, friends, neighbours, colleagues and/or the older or vulnerable people within a community. We will be asking people to seek out and establish genuine connections with others by using active listening techniques. These techniques can include putting down your device, giving eye contact, staying present when others are talking, giving people simple confirmation of understanding (nods, positive noises, a smile), resisting the urge to think about what you’re going to say next or scope the nearest exit and instead ask questions or repeat back the key conversation points to indicate that the talker has been listened to.

We will be launching our campaign by performing the show at Social Care Future on Wednesday 14h November at the Friends Meeting House in Manchester, and then taking the show across the boroughs of Stockport, Oldham and Tameside.

For more information about the creative process, contact Paul at Made By Mortals

thatpaulhine@yahoo.co.uk

For more information about the health as a social movement work that took place in Stockport, Oldham and Tameside 2016-8, contact careybamber@live.com, or stevegoslyn@outlook.com

This project is also supported by the Philip Barker Centre for Creative Learning, University of Chester.

By Anna Severwright

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Recently I had a very frustrating experience with my local authority (LA). Although, now resolved I think it highlights some things that need to change to enable personalisation and trying new things in social care. Here is what happened and what needs to happen.

I have had a direct payment (DP), which I use to employ PAs, since 2013. A few months ago my LA decided to hugely increase the level of scrutiny of how I use my DP. Having never had a problem with my DP, I challenged this change and was repeatedly told ‘it’s the policy’. Sadly all my efforts to discuss it were blocked and my letter not properly responded to, so I had to ask for a meeting.

I had a meeting with 3 members of staff including the head of service. After 10 minutes they actually listened for the first time to the issue and suggested a solution (to return to the system that had worked for the past 5 years) and said the magic words ‘we can take it on a case by case basis’. So I am back to the previous system. I wasn’t asking for a radical new way to use my DP (In my area you can only use it in a very narrow way, following tons of rules) but why shouldn’t we try radical things?

And what needs to change to allow more flexible, personalised care?

  • People need to be listened to – At every step when I tried to explain why this seemed unfair and disproportionate and request open dialogue I was shut down. The response seemed to assume as the ‘service user’ I must be wrong. However I was the person in the best position to understand the situation as it’s my life. And we will never find new sustainable ways to provide social care if we don’t listen to people who use social care and who know how it really works. The barriers were well and truly up, blocking me from having useful conversations and it took me threatening to go to the ombudsman for me to finally get heard.

 

  • People must be treated as individuals – Unfortunately it feels like one size fits all. I am not seen as an individual but must fit into their rigid policies. It took going to the head of service before I could be treated on a case by case basis. What people want from their lives will be different every time so therefore all aspects of care and support need to be personal to that person. Services should be shaped around people’s lives, not our lives being shoe-horned into rigid services. Think Local Act Personal have produced guidance on better practice – councils should take a look at this and use it https://www.thinklocalactpersonal.org.uk/search/?keywords=direct+payments

 

  • We must encourage and empower social care professionals to consider different, innovative ways – This currently worries me the most. All I hear from social care as a person using it is about rules and threats. If I don’t do x I will lose my DP. There seems to be no room for creative ideas. I can be flexible as long as it fits their ‘mold’ and rules. How are we going to find creative solutions for the future of social care, if social care professionals are made to be rule keepers not enablers? They need to be given the autonomy to try new ways of working and the confidence to do so. While co-producing with citizens. This can be done – Jenny Pitts gave us a glimpse of this future with practical examples in her blog “Releasing social workers to do what they do best” https://socialcarefuture.blog/2018/03/15/release-social-workers-to-do-what-they-do-best/

 

  • The power needs to shift- I was threatened with removal of my DP which just reinforced for me how the council and its representatives hold all the power. If I lose my DP I will be unable to live alone or get out and contribute to society as I do now. That’s terrifying. Until this relationship changes to a genuine partnership, where I’m seen as an expert in my life, with important knowledge and solutions to offer, we will be stuck in the current structures of social care. As an example, I was heartened to see one council recently undertaking a DP review in partnership with disabled people and based on an analysis by a disabled people’s organisation. This has led to strong recommendations and a commitment to deliver them https://www.lbhf.gov.uk/sites/default/files/section_attachments/ruils-dp-review-main.pdf

 

On a positive note to end, the care management officer who had carried out my review, asked to see my letter and the points I had raised. She said it had taught her a lot about how they should be working and was going to use it as a learning opportunity at their next team meeting. So there are some who want to be brave and try new ways. Let’s extend this to the whole of the system and culture. Over the past year I have been involved, as co-Chair of the Coalition for Collaborative Care, in helping develop, with Think Local Act Personal, an update of their Making it Real resource https://www.thinklocalactpersonal.org.uk/Browse/mir/ This resource starts from the experience of people using social and health care and helps localities, organisations and professionals to self-assess their systems and practice to shift the power balance and move further towards real personalisation – I’d strongly encourage all councils and their partners to use it.

 

Anna Severight is co-Chair of the Coalition on Collaborative Care

By Sue Bott

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Ask a silly question you get a silly answer. Ask an irrelevant question you get an irrelevant answer.

Why doesn’t social care research work for the people relying on social care? It doesn’t work because researchers often don’t ask the questions that people want the answers to. And that’s because people are not asked about research and involved in the doing of the research. So we end up with research that is decided by social care professionals and professional researchers and it matters because that is what comes to determine policy of the future direction of social care.

The UK independent living movement got going in the late 1970s because a group of disabled people got angry with researchers for not asking relevant questions. Famously a group of residents in a Leonard Cheshire home in Lis, Hampshire got together to form what became known as Project 81. They wanted a life, not to spend the rest of their days languishing in residential care. Researchers were asked to research possibilities. The results were very disappointing. The ‘findings’ were all about how the care home could be improved. The researchers didn’t bother asking disabled people for their views or involve them at all. The disabled people rejected the finding and the rest, as they say is history.

Since then we’ve seen disabiled people led research, liberation research – research that has asked the questions that make a difference to people. Much of our social policy has been better as a result.

But we can and should go further.

In 2015 Disability rights UK alongside Disability action Northern Ireland, disability Wales, and Inclusion Scotland were awarded a 5million lottery grant to fund a five year research programme Disability Research in Independent Living and Learning DRILL. We have invited bids from academics and disabled people’s organisations.   There has been a huge response. We could have spent the money many times over.

What marks DRILL out as different is that all the research has to be co-produced and led by disabled people. We have encouraged academic institutions and disabled people’s organisations to work together not just on coming up with the ideas in the first place but carrying out research and developing research skills amongst disabled people.

Finding our emerging from the first cohort of projects. Projects have looked at what really matters to disabled people such as the experiences of Asian disabled women, decision making by learning disabled people, peer support in practice, participation in civic and public life, supported decision making and how it can work, young disabled people and friendship – what matters? And many more

http://www.drilluk.org.uk/disability-research-independent-living-learning-drill/research-findings

The money has nearly run out but we have one more opportunity where we have decided to ask for tenders to do research on 2 very under researched areas: getting our voices heard and seldom heard groups of disabled people such as disabled people in the traveller community.

http://www.drilluk.org.uk/tenders

These are exciting times in research which should inform a better more inclusive social care future.

Sue Bott

Disability Rights UK

 

by Hilary Doxford

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So – what does a good #socialcarefuture mean for me and other people with dementia? As the World Dementia Council said, ‘we can retreat from the challenges of dementia or get on and defeat this disease. Retreating is not an option. Let’s get on with defeating it and until that day, making lives better’.

For people with dementia, in the absence of a cure or medical intervention, making our lives better means our ‘treatment’ is good and appropriate care and support.

What needs to change?

In thinking about a better future I start by thinking of the present that many people with dementia face:

  • Too many people don’t treat us as people but as commodities to be dressed, sat in a chair, have the TV programme selected, fed and then put back to bed at the end of the day. Is that living? It is important that care improves lives and does not just extend ‘existence’.
  • What saddens me the most is the loneliness and isolation the current system unnecessarily inflicts on many lovely and brave people. They exist and that is it. It is not right, it is not fair and if we call ourselves humane we need to change things now. Every new day, many people experience another day of misery. That is not what life is about. I was recently in hospital, in the bed next to me was an elderly lady who had no visitor all week. I woke in the night to hear her praying. She prayed for the doctors, the nurses, the other patients, those suffering in the world, those who are lonely and then she prayed for God to take her life or if not to give her strength as she could not see a way of coping once she went home. It was heart breaking. I cried, but crying doesn’t solve anything and I took an action which I hope helped.
  • In the corridors of power, there are those who talk of change, and talk and talk and talk …. Too afraid or just incapable of making it happen. Well they are not paid to just talk, they are paid to make and take tough decisions, we need action and it is needed now. Sadly it appears there are not enough who are capable of making change happen. I know our social care system needs a radical overhaul, it is unjust, unfair and not fit for purpose. I am talking about the system, not the myriad of wonderful people doing their best in a system that seems determined to stifle any initiative or creativity.
  • I also frequently hear the results of research studies that dramatically improve lives. Too often they go no further. Funders must ensure that there are plans for implementation of success.
  • Rules and regulations constrain and stifle creativity and initiative, because of risk averseness, the balance is out of kilter. I do not like the ‘nanny’ state, but we have to look at ourselves as well as the government for why things are going so wrong. Money for nothing rather than money for genuine need seems to be the order of today.

A better future is possible and some of it is happening now

My vision of social care is a care system that is enabling not disabling. What I like is the growing recognition that dementia care is not about ‘doing for’, but providing the tools and help to assist people to continue to do as much as they can for themselves, whether in a home or at home. As one of my friends said ‘care is not being dumped in a day care centre or home, care is inclusion in society’. If we are not encouraged to keep going we decline more quickly, you can kill with kindness and boredom.

A good future means listening to the people on the ground, they are not theorists and not just talkers, they are the experts with the experience and knowledge to make a difference. I frequently see pockets of excellence. I have been in dementia care homes where the residents smile and are engaged. The happy homes are not happy because they have more funding, they are happy because of the people and their initiative. I have seen many things that really work, such as indoor gardens, pets allowed, memory rooms, interactive technology use, community activities in care homes and just recently the active encouragement of the inclusion of children in daily lives. Simple things that make a difference but some I know were an uphill struggle for care homes to implement. How do we share these to make lives better and get them incorporated into mainstream practices?

All credit to the Alzheimer’s Society, who this year changed their Dementia Awareness Week to Dementia Action Week recognising more than words are needed. I am part of a growing group called the 3 Nations Dementia Working Group . We are a friendly group of people diagnosed with dementia who want to make a difference whilst we still can, working by, with and for people with dementia. We are currently a small group with big ambitions and welcome new members with a diagnosis of dementia to add their voice and ideas to ours. We bring the lived experience with our personal knowledge of dementia that people value whether in a professional or non-professional capacity. As such our aim is to become the ‘go to’ group within the three nations (of England, Northern Ireland and Wales) for anyone seeking input from people with dementia.

Some will recall a TV sitcom called the Likely Lads and their theme tune included these words

Tomorrow’s almost over
Today went by so fast
The only thing to look forward to is the past.

When I was diagnosed I felt the only thing to look forward to was the past. My future still isn’t looking rosy, but I am lucky, I have a caring husband but there are thousands of people today in despair and crisis with no quality in their lives. I think my key thought is whilst we agitate for change, as individuals we can make differences that will make lives more bearable and happier today and if we share those we will make a difference where it matters.

 

 

Hilary Doxford is a founder member of the 3 Nations Dementia Working Group and member of the World Dementia Council

By Clare Wightman

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I have to ‘fess up to feeling uncomfortable on these pages. I never thought what we did was ‘social care’ or that we were a ‘social care’ organisation.

That language of care never didn’t and still doesn’t shape how we see ourselves. Grapevine Coventry and Warwickshire is working with the strengths of people and communities to help them bring about change that will improve their lives and futures. We’re deeply rooted in a place. We aid people and communities to find a voice, organise, advocate for shared interests, and bring about change. We’re not ‘providers’ or ‘deliverers’ – a pretty depressing sounding typology and one that comes from commissioning not civil society. ‘Social care’ spaces (the provider forums, the involvement forums, the programme boards) to us were too stale and stuck. Too powerless and without joy.

So if we’re not social care providers what are we?

We’re inspired by how social movements happen and we use the same methods to spark community action. We help people form strong two-way relationships and take collective action on the things that matter to them.

When she got diagnosed with a rare spinal condition Melissa had to give up work. She lost her main source of friendships and connections and instead became “stuck on the sofa” (her words) waiting for her next consultant appointment. Her thoughts revolved around what she had lost and what she couldn’t do any more. Disconnected from her community she descended into isolation and low mood – until she set up the Feel Good Community. Now it’s a 500 strong group of people coming together to create activities that help them stay well and a burgeoning social business.

Those 500 people were not gathered by us. They were gathered by someone with a chronic health condition. We just helped her know how to do it and how to keep growing her ‘movement’ using the tools of community organising.

Wave Rave began in Spring 2016 when we brought together a group of mainly disabled people who wanted to go swimming but couldn’t. Six months later 103 people – aged 1-70 – attended the 5th self-organised Wave Rave. The most recent Wave Rave (June 18) was run just by and for teens, with mocktails and giant inflatables. From the spark of an idea it has become a thriving community of friends of all ages who not only come together to hold fun, inclusive pool events but also see and support each other in between events too.

Experiencing undiagnosed autism and excluded from multiple schools Ben was helped by Andrew to attend another bit of community action we helped spark a Slow Roll cycling event. Through his spontaneous relationship with Andrew and other connections he got a maths tutor, went camping and his mum Dawn, who told us her family was coming apart, got a source of practical informal help. Ben then got involved in organising Wave Raves leading to an apprenticeship as a lifeguard at Coventry Sports Foundation.

None of our ‘movements’ are projects. A project says ‘how can we provide help to people who need it?’’, but in a movement those who have needs are also those who provide support. Projects need beneficiaries. Movements just need all kinds of people able and willing to act on a shared challenge. Movements create more and more initiatives. Feel Good has already created an off shoot called Self-Care Social. Projects don’t. Projects have hard edges. They end.

connecting for good

But is it the future? It’s certainly true that local authorities dealing with scarcity look at what I’m describing and see abundance. But neither of us yet knows how to connect our wiring. And there‘s a lot at stake if we do.

We are often subject to commercial models and cultures that don’t allow us to work in the ways we need to and which distort our value – that is well known and talked about but it isn’t changing – yet. Most likely we will have to resist an urge to commodify what I am talking about so it can be purchased rather than, as I would hope, invested in.

And there are other, bigger dangers ahead. I don’t want this to be distorted into helping people manage without the services they need. The effect of the 2010s on disabled people has been disastrous. Leaving aside dwindling universal and provision for children and adults they have been failed by the universal credit system and attacked as benefit claimants.

No amount of Wave Raves will fix that. They’re not intended to. But movement inspired methods empower people to know how to gather and organise in support of their collective interests. The thing about movements is – they move. Community action can generate social action.

Clare Wightman is Chief Executive of Grapevine Coventry and Warwickshire

@GrapevineCEO