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Corona virus guidance for Shared Lives people and agencies is here. More detailed FAQs on the members’ area of our website and via our members’ bulletins and calls. To get my Shared Lives Plus newsletter (latest edition here) please enter your email address here.

A new health and care system: escaping the invisible asylum is published by Policy Press and launched at Nesta in London with Simon Stevens (video), Chief Executive of NHS England, who said, “This is a profound and timely call for a different relationship between people and the services and institutions of the welfare state. It’s a radical and necessary call to arms for a more human, personal and connected society” Read the introduction here and get a 30% discount code. Our latest short films:

Where next for charities and social enterprises in the COVID era?

In the past few months of crisis, volunteering has rocketed while fundraising has plummeted. Communities have come together in an outpouring of mass grassroots activism that, previously, countless government and charity programmes have failed to achieve.

So charities are trying to reposition themselves and their work within a world that suddenly has different social, economic and technological norms. Many are doing that against a backdrop of furloughs, lay-offs and even potential bankruptcy.Charities which are in financial crisis will be focused on income-raising and cost-cutting. But for those charities which survive this crisis, what next?

The goal cannot be to return to ‘normal’: our sector did not go into the COVID-19 crisis in perfect health. A succession of safeguarding, abuse and bullying scandals had seen a dramatic decline in some well-known organisations’ fortunes, and continuing pressure on public trust in the concept of charity. As charities compete for scarcer funding, and are increasingly challenged on their participation in deep-rooted inequalities, there is no reason to believe that any of those issues will be less prominent in the deep recession to come.

To survive we will need to recapture the public’s imagination, building new and deeper relationships which people do not feel they have with other kinds of organisation. We will need to demonstrate that not only can we address the equalities issues facing our own sector, which we have previously not taken seriously enough; we will need to build ways of working which are part of the solution. For instance, while mutual aid groups have sprung up largely without input from charities, not every street has formed a new self-support network and we have never been more aware of deeply our communities can be divided, and how systematically black and minority communities and other groups are oppressed and excluded. Charities and community groups at their best have relationships and trust within communities ignored or oppressed by state (and private sector) organisations. This often happens most clearly when organisations are run and owned by members of the community or group they seek to serve.

Pre-Covid I had been working with NCVO and RSA on a paper arguing that how charities work can be as important as what they do. It aimed to challenge charities which are providing support to people to consider how they are not only doing that effectively, but also drawing driving social change through the values and ethos they bring to their work. I wanted to challenge our sector to consider the power that organisations can hold and to understand the behaviour changes we need to see at every level to change that. I had collected examples of ‘asset-based‘ working from organisations including Recovery Connections, RECLAIM, CHANGE and Cornerstone Scotland.

So in a Covid era which looks likely to persist and create changes which are permanent, I am redrafting the paper and its action plan for asset-based charities. I’m seeking new examples of how charities and social enterprises are moving towards (or away from) asset-based working during the pandemic. What has become easier, harder or more vital about taking an asset-based approach? Are you starting to plan for the future again and if so, how does asset-based thinking inform your strategy, if at all?

If you have relevant experiences, please share any examples or thoughts you have below in the comments, or by emailing me on alex at sharedlivesplus.org.uk or  on Twitter: @AlexSharedLives

Many thanks – this feels like a crucial moment for the not for profit sector!

NHS Reset: Looking closer to home for solutions to social care

The NHS Confederation kindly published this blog as part of its NHS Resetcampaign to contribute to the public debate on what the health and care system should look like in the aftermath of the COVID-19 pandemic. Full blog here.

There can be few more daunting challenges than safeguarding an entire population against a deadly virus.

And while the spotlight was initially on the vast and justly celebrated achievements in acute care, the social care sector took weeks to persuade leaders to focus on the tragedy which was quietly unfolding in our care homes, until the numbers became too huge to ignore.

specialist report estimates that more than half of all deaths in the UK that are directly or indirectly related to COVID-19 will have been among care home residents.

We may never know how many more people who use social care died, isolated at home following visits by untested and poorly equipped social care workers.

There is an argument being made that this discrepancy between relative success in protecting the NHS and the unconscionable number of deaths in social care demonstrates the need to merge social care into the bigger, better-resourced and more loved NHS.

But there’s another way to look at this, and one that offers optimism and hope to set against the UK’s grim death toll, one of the worst in the world.

Only connect

Perhaps the most positive – and unexpected – impact of the crisis has been the number of people who have proven willing to support and connect with each other.

We saw 750,000 would-be NHS volunteers sign up when the call was raised, while countless thousands formed their own mutual aid groups. This has not been evenly distributed but it hints at a different way to approach keeping people well – particularly the isolated older people who are one of the biggest groups using health and social care.

There are existing models that show us what can be achieved when we start to consider more localised, community-based options.

These include two innovative home-based models, Shared Lives Plus and Homeshare UK, which have proved resilient and have indeed flourished while the pandemic has had a devastating impact on some building-based services.

Shared Lives – now used by approaching 15,000 people in the UK – is rated as the best performing social care model by the Care Quality Commission. It matches an approved carer with someone who needs significant support. Uniquely in adult care, the older or disabled person moves in with their chosen carer and lives as part of the household or visits them regularly in place of traditional short breaks or day services.

powerful example of the service in action is Meg, who now lives independently with a Shared Lives carer after a history of mental illness and self-harming including four and a half years of residential hospital care.

Almost every area in England has a scheme and 79 per cent of them now offer healthcare as well as social care for people with mental ill health, acquired brain injury, stroke or other long-term conditions. With no staff team going in and out of the Shared Lives household, infection and mortality rates have been mercifully low.

For many users of traditional social care, an extended period of isolation is bringing risks to their mental health. Home-sharing not only addresses this, but it also offers a solution to the eternal challenge of releasing acute care beds when patients are ready for discharge but need some support with ongoing health or care needs.

In a post-coronavirus landscape, we will need our hospitals and medical facilities to recover and thrive. More crucially, we need a wider support system that enables people to live safely and well at home.

A kinder, more connected society

Looking back on the pandemic, we were able to ‘protect the NHS and save lives’. But there were times when it felt like we were protecting the NHS from the older people who needed it most.

Going forward, we need a new approach to both health and care which is focused on keeping people safe and well at home. This will reduce pressures on the NHS, but most importantly it will offer people a life during and after lockdown, not just survival.

Shared Lives, Homeshare and other forms of personalised care must be central as we look to create a stronger, kinder and more connected society.

The connections that people are currently making with each other are as crucial to the next phase of COVID-19 planning as the smoothly running hospital was to the first.

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.

You’ll never walk alone

As lockdown starts to ease, our members continue to be under pressure like never before and so we wanted to share with you signs of hope and inspiration for our communities after a wonderful week of celebrating Shared Lives carers.

Knowing that we couldn’t meet up in “real life” this year, we made as big a noise online as possible about their Shared Lives carers’ magnificent achievements. We campaigned for their income to be covered for those that have lost income due to lockdown cancelling day support or short breaks and recognition that Shared Lives care is not a 24/7 service for those that open their homes long-term. We released new independent research which shows there is wide appetite for shared living and Shared Lives households met with one of our strongest political supportersSign up to my not-so regular newsletters

  • Community celebrations across the UK
  • New research shows appetite for shared living
  • Shared Lives carers meet Shadow Minister for Health and Social Care

At a time when connecting with others has never been as difficult, or as important, we were so proud to show our network walking on through the storm in the premiere of a special film already seen by thousands. If you’ve not seen it yet, let your spirits be lifted and treat yourself to four minutes of pure joy.

Community celebrations around the UK
Across the network, schemes and Shared Lives families got together to celebrate in virtual tea parties, using new skills from our social media training sessions. It was great to see the momentum all over the country – silly hats in the West Midlands with CVT, a beautiful chorus of voices singing “You’ve got a friend in me” in Surrey, handmade cakes in Stoke,  visiting carers with gifts in Bury, bingo and quizzes in Ayrshire – to name just a few.

Kirklees shared a hand-written note from a person supported in Shared Lives which everyone loved, probably because it talked about feeling “more grown-up” rather than “building independence” in professional jargon. Shared Lives Hertfordshire created fantastic, polished videos introducing Shared Lives matches in a warm, intimate and informative way – like Michael and Linda’s story. Linda’s not very good at the Wii, but she’s fun and has changed Michael’s life so that he “doesn’t feel alone anymore.”

Our own social media performance saw a huge spike in engagement – over 1000% increase on Facebook and Twitter- which was a timely boost given our recent research which told us that nearly 70% of people haven’t heard of Shared Lives and Homeshare.

New research shows appetite for shared living

New research by Survation, of 1000 people, also showed that there is appetite for shared living – 65% of people would prefer to share their homes with someone of similar interests to them, and 37% of people who live alone would consider sharing their homes with someone of similar interests, once coronavirus has been fully addressed.

Over half of the respondents to the poll felt that the government hadn’t done enough to address the issue of loneliness during the Covid-19 pandemic. We are proud that Shared Lives and Homeshare are still open for business and are helping to combat isolation. We call on government to help the people who want to live together for mutual support to reach the solutions that already exist and recognise that home is one of the safest places to be, especially with someone who’s always looking out for you.

Shared Lives carers meeting with Shadow Minister for Social care
We’ve been working hard to promote shared living across the political spectrum, and we were delighted to meet up with the Shadow Minister for Social Care, Liz Kendall MP, and Shared Lives households (pictured above), to share the experiences of real Shared Lives with her. We’ve also invited the Minister of Social Care to meet with Shared Lives carers and working with DHSC, LGA and ADASS on PPE, pay and restarting day support/short breaks.

Kendall is a long-standing supporter of Shared Lives and said that the Zoom session was “the most uplifting conversation I’ve had during this crisis.” She will help us to press the government on issues such as PPE, respite and day services re-opening, and in the long term supports our vision of a different way of living with and looking after each other.

Last week I wrote about how the conspicuous Continue reading

Resilient Shared Lives should be at the heart of a rebuilt care system

The latest figures from England’s Shared Lives schemes show that Shared Lives care continues to grow steadily despite the tremendous difficulties facing the social care sector as whole. The total number of people supported in Shared Lives grew by 540, or 4.4%, to a total of 12,890 compared to the previous year’s data. These small numbers of growth despite the long-term effects of sustained austerity and a lack of a cohesive strategy for social care, demonstrates Shared Lives’ great resilience at a time when the need for robust and flexible social care alternatives could not be more urgent.

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The numbers of short break arrangements grew by a modest but promising 8%, suggesting that planners are increasingly understanding the flexibility of Shared Lives and its ability to fit in with and support wider service provision.

While the numbers of people supported for dementia remained static, those in Shared Lives arrangements with other needs associated with older age doubled to 720. This shows that the model can expand swiftly to tackle specific challenges where there is a will to do so –with the serious pressures facing the residential care sector, the growing numbers of older people supported in Shared Lives are a timely boost.

There are now 500 people supported for a physical impairment – a 14% increase, which is positive news in the context of our concerted work in partnership with NHS England to develop shared living for those with health needs. We have long argued that Shared Lives is just as suited to healthcare as social care, and this growth is food for thought as we explore the potential of our sector to support hospital discharges during the Covid-19 pandemic.

While the size of the sector remains healthy, its quality in terms of the difference it’s making to people’s lives all over the UK, is still – literally – the best in the business. The latest CQC stats show that 96% of Shared Lives schemes are rated as good or outstanding.

Just as important as the official ratings are the views of the people who are supported in Shared Lives, which we capture using My Shared Life, a bespoke outcomes-measuring tool developed with people with lived experience of Shared Lives. The latest data from My Shared Life shows that 97% of people in Shared Lives felt they were part of the family most or all the time. 90% felt that their Shared Lives carer’s support improved their social life. 84% felt that their Shared Lives carer’s support made it easier for them to have friends.

We’re proud that the Shared Lives sector is robust and continues to grow. We call on directors of services and central government to absorb the lessons from the latest data, recognise the potential of Shared Lives to deliver fantastic outcomes for people despite challenging circumstances, and design a more resilient, human, and higher quality care system with shared living at its centre.

Read more of our England reports – and for WalesScotland and Northern Ireland and the scale of the good life

The power of companionship

My colleagues Debs, Alice and Ben who support the UK’s Homeshare organisations and the Homeshare International movement have shared this update on their work during the pandemic:

As the Covid-19 pandemic continues to influence every aspect our lives, we are proud that Homeshare is still open for business. Across our network, organisations are continuing to match people keen for supportive shared living, and Homeshare matches are showing the power of companionship as a means to not only survive the pandemic and the measures designed to tackle it, but get through it with humour, style and hope. As Sylvia, Householder in London remarked:

Neither of us could have predicted that home-sharing would turn out this way. But it really has helped us both so much through lockdown. Olivia is a great companion, so kind, helpful and full of life. She’s just a lovely flatmate…She’s taught me to use Zoom and FaceTime so I’m able to keep in touch with my children, grandchildren and great grandchildren. But nothing beats having someone with you.”

As we reflect on the tremendous difficulties faced in some areas of the residential care sector, it is a source of great relief that incidences of infection and deaths from Covid-19 have been mercifully low in Homeshare. Our model is based on the security of a welcoming home environment and good relationships, and it is increasingly looking as though home is one of the safest places to be at the moment – especially if you share that home with someone who’s looking out for you.

We are acutely aware of the relative greater danger posed by the virus to older people. We’ve always known that entering a new living arrangement with someone is a big commitment, which is why robust matching, safeguarding, and follow-up support procedures have always been the bedrock of the Homeshare process. Our network have further adapted and specialised these processes to bring risk of infection for both householders and Homesharers down to an absolute minimum.

‘Sarah Kaye, Director and Coordinator at Homeshare Living CIC, said: “Homesharers have become a lifeline to many older and vulnerable people during the coronavirus outbreak and we are working to support existing households and continuing to make new matches in the safest way that we can. Digital technology, social distancing and following all hygiene guidance has helped us to make this possible. Homeshare has truly never been more important.”’

While the death toll from the virus continues to rise, we are mindful too of the profound danger posed by a different type of pandemic – that of loneliness and isolation. The world is slowly waking up to just how deadly loneliness can be – it increases the likelihood of mortality by 26% – and during the lockdown the potential for isolated people to lose what little social connection they did have is great. Matching an older person with someone willing to share home life and provide some support is an empowering step against this danger.

Therefore we’re determined to keep supporting our network to facilitate life-changing Homeshare matches, between fully-informed adults who have decided they want to live together. Culture Secretary Oliver Dowden recently said that “Coronavirus and social distancing has forced all of us to look loneliness in the eye. So recognising the signs and tackling the stigma has never been more important.”  Homeshare has always been about understanding that everyone, no matter their age, has particular needs and unique strengths, and that by bringing people together we can solve problems and make people happier. The need for Homeshare now is more urgent than ever

You can read guidance from Homeshare UK  on adapting practice to support new and exisiting Homesahre matches here

Find your local Homeshare Provider here

500 more people are living Shared Lives

We are mid way through Shared Lives week and like everything, this year it’s very different. No corner of our lives or our country is untouched by this crisis, and Shared Lives carers, who already give so much to their communities, are now relied upon more than ever. It has been humbling to see our members carry on sharing their lives and providing care for those they support in the face of tremendous challenges.

We’ve been working hard to support our carers and schemes with issues surrounding PPE, pay, working longer hours, access to supermarkets and generally working through the crisis.  We’ve set up a new telephone support service with the British Institute of Learning Disabilities, to help carers respond proactively to anxiety or disrupted routines faced by the people they support, sustaining them through the most difficult of times. We are disappointed that despite accepting our case that it’s scheme to replace lost income would not benefit most of them, the Treasury isn’t able to support self-employed Shared Lives carers who normally offer day support or short breaks support which isn’t happening during lockdown.

But through it all, Shared Lives carers and the people they support are finding ways to overcome problems together – not only surviving, but doing it with humour and style. Whether it’s discovering a new talent for painting like Ivor and Peter in Shared Lives south west, making onion chutney (with all the tears that entails) like Judy, Jo and Mandy in Shared Lives Hertfordshire or Jon Thomas in South East Wales keeping active and enjoying the sunshine,  seeing the different ways in which Shared Lives matches are beating the boredom and frustration of lockdown makes me smile every time. Homesharers too have been showing how companionship is helping them through the pandemic – like Norman who: “grinned and didn’t have to bear it!”

While some areas of the care sector have struggled desperately, it is a source of great relief that incidences of infection and deaths from Covid-19 have been mercifully low in Shared Lives and Homeshare. Both models are based on the security of a welcoming home environment and good relationships, and it is increasingly looking as though home is one of the safest places to be – especially if you share that home with someone who cares about you and who’s always got your back.

The latest figures from England’s Shared Lives schemes show that Shared Lives care continues to grow steadily despite sustained austerity and a lack of a cohesive strategy for social care. The total number of people supported in Shared Lives in England grew by 540, or 4.4%, to a total of 12,890 (in England).

The numbers of short break arrangements grew by a promising 8%, suggesting that planners are increasingly understanding the flexibility of Shared Lives and its ability to fit in with and support wider service provision. While the numbers of people supported for dementia remained static, those in Shared Lives arrangements with other needs associated with older age doubled to 720. This shows that Shared Lives care can expand swiftly to tackle specific challenges – with the serious pressures facing the residential care sector, the growing numbers of older people supported in Shared Lives are a timely boost. There are now 500 people supported for a physical impairment – a 14% increase, which is positive news in the context of our concerted work in partnership with NHS England to develop shared living for those with health needs.

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Rebuilding communities and rebuilding social care are deeply linked challenges

This article appeared on the Social Care Institute for Excellence website on 25 May here. (I’m a SCIE Trustee.)

The focus of the first weeks of the crisis was on sustaining hospitals. It was a difficult, complex but clear challenge and it was met. As it became clearer that the virus had swiftly found social care’s most vulnerable services and was sweeping through people living in care homes in particular, politicians and planners have tried to bring into focus the much more fractured picture of social care services, which range from large nursing homes, through community support services and homecare, to individuals organising their own teams of Personal Assistants. We found out what we were good at: building huge hospitals in a matter of days is an incredible achievement. And what we are not good at: identifying where deeply entrenched inequalities in our communities will meet inequalities in our public services and create human tragedies.

There was a widely-shared photograph of the head doctor at the London Nightingale Hospital waiting for his first patient at a lighted door in a vast metal shutter. It’s a heroic image. Of course, the Nightingales, fortunately, remained almost unused as the daunting acute care challenge was largely met. There are few images of the thousands of people who died unnoticed in care homes, much less those isolated at home who were visited by untested and poorly equipped social care workers. It is hard to take a picture of the vast number of small, spontaneous acts of kindness that have happened within Mutual Aid and other grassroots community groups, and we may never know their contribution to keeping people alive and hopeful.

There is already talk of big, structural change post COVID-19. It will be tempting to do what we were good at during the peak of the crisis, but what we need in the next phase and beyond is unlikely to revolve around easily-defined service delivery challenges which can be achieved by a small group of heroes.

Support people need in the place where they live

As much as we will need our hospitals and medical facilities to recover and thrive, we will need a wider support system that enables people to live safely and well at home. That is where the safety and wellbeing of older and disabled people has always been found, and the current crisis has just brought home how important it is for people to be able to get the support they need – formal and informal – in the place where they live. For many people facing an extended period of isolation and the risks that will bring to their mental health, the role of friends, neighbours and – socially distanced – family will feel increasingly important.

The virus has brutally exposed many of the weaknesses in our social care system. But it has also highlighted an abundance of caring within our communities. We have a stronger desire to help each other than we realised: three quarters of a million people volunteered to help the NHS and social care before the programme had to be paused while the system tried to catch up. We have more creativity than we knew: people and organisations finding a million ways to offer their help, knowledge or skills to others, often for free. What we’ve found does not, of course, begin to balance out the devastating impact of the things our services lack, let alone the people we have lost.

Both formal and informal needed

And those good things are no more evenly distributed than the deaths and the shortages, exacerbating already deep-rooted inequalities. But given how difficult the coming months (and years) will be, we must make everything we can of what we’ve found, and what people have offered to give.

Social care is rooted in an attempt to bring together the formal and the informal: the social as well as the care. We know that people will not live safely and well where one or both are absent, or cannot work together: the large impersonal institution where there is support but community is kept at arm’s length; the isolated home where an individual endures hours without human contact.

So, we need a renewed drive towards living at home, or where that is not possible, a place which feels small and personal enough to feel like home. We can no longer tolerate people of any age living long-term in big, impersonal institutions. We must see the connections which people are making with each other, in all of their humanity, diversity and messiness, as being as crucial to the next phase as the smoothly-running hospital was to the first. And if we are to see people stepping forward to connect with people who use or live in support services, they will need to be able to feel a shared sense of ownership of those services: community as a mode of ownership, not just community as a ‘setting’. Put bluntly, few people want to volunteer for a large profit-making business owned somewhere offshore. If we want people to continue to step up, connect and be generous, they must be offered a greater sense of ownership and real relationships in return.

Look to the community

Neighbourhood level care organisations have already shown they can reach tens of thousands, like the famous Dutch Buurtzorg dementia support service with its self-managing community teams, or Shared Lives which reaches 14,000 disabled and older people through a family-based support model which behaves like a franchise in every way except for the fact that no one owns it, nor profits from it. We have seen these community-rooted organisations proving adaptable in the face of COVID-19, using online technology to create and sustain connections which are traditionally carried out face-to-face. The Shared Lives sector is seeking investment in an unprecedented modernisation of its recruitment and matching processes to ensure they can carry on during lockdown, and that the home-based support model can be a much bigger part of a pandemic-proof and sustainable future.

The crisis is still peaking and the bleakest news from the social care sector is yet to come out, as we start to understand the scale of what has happened, but not yet been counted. Many smaller provider organisations are already staring at bankruptcy. But we cannot wait until the crisis has passed to start building the future. We must start now.