It’s so much quieter here than on the ward

The World Health Organisation showcased the South East Wales Shared Lives Mental Health Crisis Project at their global launch of the WHO Guidance on community mental health services: ‘Promoting person-centred and rights-based approaches’. In our seminar to celebrate this (film on YouTube), we heard from Nikita and Mags who talked to Emma  Jenkins the South East Shared Lives Mental Health Crisis Project Manager who had matched them together into a life-changing Shared Lives arrangement. Here is some of what they said:

Nikita

Before Shared Lives I had no fixed abode and I kept going back to hospital. I had a CPN and treatment but I was feeling awful and suicidal.

I had no idea what Shared Lives was – I was pretty apprehensive – I’d never heard of anything like this in my life. Kerry told me I could stay with someone rather than be on the ward I wanted to meet Mags at her home not on the ward and when I went to Mags’ house I knew it was a great opportunity for me to grow and so much better than the ward.

Mags

Before someone comes to the house, I will have had some paperwork and discussions with my Shared Lives worker but it’s not until you meet the person and they are sat in front of you that it becomes real. The Shared Lives worker knows my strengths and my experience and will have matched up an individual they think I can work with. But at the initial meeting I need to quickly establish a connection to see if I can work with them and they want to work with me. It’s that mutual respect that matters.

Nikita

Shared Lives is a really important opportunity because the ward can’t offer you the same amount of one-to-one attention. They have limited resources and you can’t do a lot of activities which would promote your wellbeing after your stay like cooking, going walking, seeing your family. It’s so much quieter here and great to be able to be outdoors with someone’s support.

Mags

I’ve been lucky enough to have several arrangements. You have that opportunity for one to one. It frees up space on the wards which is also good. You have time to introduce the individual to community activities, education, exercise. I’ve had some really good feedback from people who have said it’s much better for them.

People start to live normally again – just ordinary things like being able to use an iron, or cutlery again, which may be banned from wards because they are a self-harm risk.  

Nikita

When I was at Mags I was able to do my university work on my laptop. On the ward I couldn’t go on my laptop so I was already behind which was making me so anxious.

Mags

I have a garden here. I find people are up for being introduced to new things – whether its gardening, books, exercise.

Nikita

I trained for a half marathon at Mags’ and did the run just after I moved. It was a huge achievement for me just being able to run when I was at Mags’ which I couldn’t do on the ward.

Mags

I went to watch her at the finish and me and her Dad cheered her in – it looked hard work!

Emma

It’s obvious that you’ve formed a friendship – you don’t have to do that after the arrangement has ended, but it looks like that’s natural for you both?

Mags

The person who comes to your house is a human being – we have interests in common and we get on!

Nikita

I’ve started to live independently now – lots has changed but it’s all positive. It’s important for other people to know about this. It’s not an option for me to go back into hospital – it’s not something I think will happen. I want other people to know about Shared Lives as well.

To find out more about the South East Wales mental health crisis service read the WHO report or find them here.

Care Minister meets Shared Lives households

Helen Whately, Minister of Sate for Social Care, met new and long-term Shared Lives carers during Shared Lives Week this week, as well as the social care staff who approved record number of carers under the pressure of the pandemic, using adapted assessment processes.

My colleague Phoebe Barber-Rowell, who leads our communications, writes:

The carers included some of the 200 just recently recruited by a successful DHSC-backed campaign using the Covid emergency fund. The carers described to the minister Shared Lives supports 15000 people across the country,  accounting for just 1% of social care provision overall – and yet it is consistently, officially ranked by both the CQC and the people who use it as the safest, highest quality form of social care there is.

In a reverse of typical care services, the new roles, created by Shared Lives Plus, are the ‘ultimate post-pandemic job opportunity’ and point towards the much-discussed topic of the future of social care, as they see carers provide personalised Shared Lives support in the carer’s home – on either a long-term, respite or day-support basis.

Emily and Allen Portwood are Shared Lives carers based in Warrington and have opened up their home to two young adults, Molly and Tyler.  Emily said: “To us, this isn’t a job, it’s about providing a home, security and happiness within our family for those who need it.

“We got into it because Allen, who is a former policeman and has his own MOT garage, was really inspired to help young adults. We looked at all the options and Shared Lives was the perfect choice – there are no unsociable hours away from our family and we can just include them in our lives. We have a big family already – it’s just got a little bigger!”

The jobs follow a £300,000 funding boost from the government’s Coronavirus Community Support Fund, distributed by the National Lottery Community Fund, aimed at rapid recruitment of Shared Lives carers across the UK. Helen Whately, Minister of State for Social Care, said: “The pandemic has shown us the increased need for social care which offers more freedom, independence and choices and enables people to strengthen relationships which are so vital to our mental and physical health.

“I’m delighted that Shared Lives Plus, under the extraordinary pressure of the pandemic, with the support of government’s Covid Emergency Fund, has ambitiously transformed the way local authority and independent Shared Lives schemes recruit and assess potential carers supported by online technology, to provide innovative Shared Lives support in their own home. Shared Lives services, funded by our Covid Emergency Fund have exceeded their ambitious recruitment targets. A huge thank you to everyone involved and for all you do. I’m delighted to welcome 200 new Shared Lives carers, over the last six months, into the social care workforce, with over 100 people moving in with their new Shared Lives carer and benefiting from the safest and best quality form of social care available. The opportunity now that I really want to support, is to scale it up so that even more people can be part of Shared Lives households.”

Laura, who lives with her Shared Lives carer, asked the Minister a question. Here’s Laura’s question and Helen’s answer:

Care minister Helen Whateley MP meets Shared Lives households – Shared Lives Plus

Sheik, Roumanah and Kirsty

Here’s a lovely story of inclusion, kindness and creativity from Hertfordshire Shared Lives as we continue to celebrate Shared Lives week.

Kirsty Stubbs moved in to live with Sheik and Roumanah Tafajoul’s family in February of this year. Kirsty has an acquired brain injury from an accident five years ago and had been in a Care Home ever since. Kerry Faulkner from Hertfordshire County Council Shared Lives writes about how they made the match made in the middle of the pandemic:

“Kirsty’s mother contacted me and was extremely keen for her daughter to be in Shared Lives. We had to be creative with matching as we couldn’t do any of the usual processes as this would mean Kirsty having to self-isolate in her room for two weeks if she even had a tea visit and the carers were not able to visit her due to the restrictions, so Sheik and Roumanah and their family Skyped her every week for months so they could get to know each other. Kirsty’s family met the Shared Lives family and worked with them to ensure a smooth transition. The room was adapted for Kirsty’s needs as she is partially blind, so they installed an ensuite shower room and an OT visited to install grab rails etc.

“Just after Kirsty moved in Sheik and Roumanah found out they were having another baby (which was a bit of a surprise for us all!) but we all worked together to ensure there was a contingency plan in place to allow continuity of care for Kirsty and the other gentleman they support in Shared Lives, with an additional ‘support carer’ approved alongside the one the family already had.”

Kirsty’s mum Joyce writes:

“The Shared Lives secret should be made widely known – amongst health and social services, charities and many more.  Since my adult daughter, a head injury survivor, moved to her wonderful new Shared Lives family in February 2021, she has been able to enjoy family meals, movie nights, helping the children with their spelling, listening to their bickering and simply being accepted and valued for the person she now is since her accident. Working with the family is a pleasure, most especially since the family has now expanded to include a new-born baby girl. Kind, caring families with appropriate experience and a suitable spare room are out there, as are countless adults with particular needs.  So please spread the word so that more people can be looked after by those who know how to care.”

Keep them caring

It’s Shared Lives week, so if you live in the UK, look out for your local Shared Lives organisation celebrating the achievements of local Shared Lives households and the lives that people are living as a result. Here is Paul and his household in North Wales talking about love, laughter and belonging:

Meet Paul and his Shared Lives carers – YouTube

This week some Shared Lives carers are meeting the Care Minister Helen Whately MP to tell them about their experiences and how our new tech-enabled approach to recruiting has made it possible to recruit and approve people safely into this unique role in as little as four weeks, where before it was taking months. There is no reason why the government’s promised new vision for social care shouldn’t have models like Shared Lives at its heart. Social care is often seen as a rolling crisis – but the scale and results of our sector show it doesn’t have to be that way. We just need councils, social care organisations and politicians to be as ambitious and radical about the future as households like Paul’s are: seeing the potential and the hope where others have only seen need and problems.

Shared Lives week is a celebration, but this year it must also be a moment to acknowledge the strain that successive lockdowns have put on some households. While Shared Lives and Homeshare have proved to be safe and happy places to be for most during the pandemic, thousands of Shared Lives carers and their families have made huge sacrifices and given up vast amounts of unpaid time while their usual day services and other supports have been closed. Most councils have done something to thank their Shared Lives carers for this, and to help them with extra payments and flexibility around carrying over breaks, but not all have done this, and we are writing to local leaders on behalf of those members who feel invisible or taken for granted.

I hope that this Shared Lives week every local social care leader will take the time to say ‘thank you’ to their Shared Lives carers, acknowledge how difficult the last year has been, and ask them what they can do to keep them well, and caring.

Meet the sharers

Our new Twitter project is @MeetTheSharers, a brand new, year-long, rotation curation project from @SharedLivesPlus. Every week, for the next year, we’ll be handing over this account to a different Shared Lives family, so they can tell you all about their lives, in their own words.

The Portwoods are no strangers to the media spotlight, they were featured on @GranadaReports in February and now get recognised on the street. See the ITV news film here.

Emily and Allen provide Shared Lives support through @meetmacintyre, one of a network of Shared Lives schemes across the country. Emily is a full time Shared Lives carer, she loves the gym, Slimming World healthy eating plans, cooking, driving to nice places and walking. Allen is a vehicle technician and owns his own garage, he works each day to assess and fix cars then comes home to his Shared Lives life.

Molly is 26, she works with children in an after school club, loves the gym, yoga, Pilates, and Zumba. During lockdown she has baked, walked and kept her friendship group going each Wednesday. Beth, on the left, is 22. She doesn’t live with Emily and Allen, but comes to visit them several days a week as respite care.

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Tyler is 18 and is very much into his social media networking- he loves posting YouTube and TikTok videos. Tyler is an animal lover and is enrolled on a college course that involves learning about animals. Robert is 61- he is interested in films, he likes the musicals. Robert loves to socialise with people, he attends the Macintyre day centres and is looking forward to going back to the visual impairment centre when it opens up.

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It’s a cosy household, which also includes Emily and Allen’s sons (Spencer, Declan, Harley, and Jordan), dogs Bella and Cadbury, a handful of guinea pigs, and a tank full of fish.

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Re-imagining charities

I was excited to join the Royal Society of Arts‘ chief executive Matthew Taylor for his Bridges to the Future podcast the other day: you can listen to it here: https://bridges-to-the-future.simplecast.com/episodes/reimagining-the-charity-sector

We talked about how COVID-19 is reshaping not-for-profit organisations, and how the bravest and most creative of those organisations could reshape our communities, drawing on ‘asset-based’ thinking, to form relationships with people who seek their support in which they ‘meet as equals’, which to my mind is the only way our sector will rebuild public trust and drive the kinds of social change we call for.

I was also interviewed for the AgeSpeaks radio show by Co-Founder of ChangeAGEnts Co-operative Collective Mervyn Eastman. We spoke about how the ways of working and of living I encountered when I met people involved in Shared Lives and Homeshare inspired the ideas for a new kind of public services in my book A New Health and Care System, Escaping the Invisible Asylum.

Robots

Every few months, there is an article somewhere in the press getting excited about the potential for robots in social care. The latest is in the New Statesman: Automated assistance: how robots are changing social care. Samir Jeraj cites two examples of tech helping people to connect with services and notes the ethical challenges: Clenton Farquharson, who employs his own personal assistants and is Chair of the Think Local Act Personal programme for transforming social care, argues for “a rights-based approach”. “As well as accessibility and usability, manufacturers and providers should also be mindful of making assumptions about users’ needs… particularly for marginalised groups” who are “often not around the table”.

There is a long history of looking for quick fixes for the slow moving tragedy which is our current social care system. The National Audit Office today says that despite “substantial efforts from those across the sector to deliver these essential services in such challenging circumstances,” longstanding problems mean that “levels of unpaid care remain high, too many adults have unmet needs and forecasts predict growing demand for care. The lack of a long-term vision for care and short-term funding has hampered local authorities’ ability to innovate and plan for the long term, and constrained investment in accommodation and much-needed workforce development. In a vast and diverse social care market, the current accountability and oversight arrangements do not work.”

Below the attention-grabbing headline, the New Statesman article makes it clear that, in reality, robots are not currently changing social care. It gives two or three examples, the first of which is actually about tech connecting a sick school pupil to his lessons pre-pandemic, and then one small experiment using artificial intelligence to ‘chat’ to lonely care home residents about their interests, and an interesting academic research programme: the National Robotarium.

I’ve nothing against any of this: we are part of a government-backed consortium which is exploring how to combine machine learning, geospatial data mapping and grassroots community action using the Tribe application, and I feel hugely excited by the potential to combine tech and big data with community initiatives that until recently have been entirely offline and analogue.

It is worth, however, thinking hard about what problems we are trying to fix with technology. Many of the innovations grouped under the ‘robotics’ heading are more to do with AI-assisted social interaction than machines providing practical help. I am sure it is possible to create tech which will interact with isolated people in a life-like enough fashion to alleviate some of their loneliness. But why would we want to? As strengths-based models like Homeshare demonstrate, the best solution to a person’s loneliness, is to find another person who is either lonely themselves, or at least has spare social energy. Our Homeshare and Shared Lives teams and national networks are already exploring how tech can target, speed up and scale up those connections. As the NAO found, austerity hit social care hard, but as we’ve seen during the pandemic, there is now more than ever an abundance of caring and social capacity out there in our communities. The New Statesman reports that £34m is being invested in robotics research. When it arrives, the long-awaited social care Green Paper will need to demonstrate that level of ambition in scaling up the community-based innovations we already have in our sector: let’s get as excited about investing in people as we do about investing in robots.

Serious about Shared Lives

This is a guest blog from my colleague Nick Gordon (nick@sharedlivesplus.org.uk) who works in our communications team and supports local Shared Lives providers and commissioners with their demographic analysis, marketing and recruitment. Nick writes:

With the anniversary of the pandemic hitting approaching, the vaccine roll-out offers hope, if not yet certainty of when ‘normal’ life will return. All we can be certain of is that ‘normal’ will not be what it was before. We will be in a period of huge challenges – long covid, mental ill health, ravaged economies – and huge changes to the way that we live, work and travel.

Throughout these extraordinary times, and despite enormous pressures on our health and social care systems, Shared Lives care has continued to shine, providing the safest and best quality form of care as rated by the CQC and amazing outcomes for people like Meg who have found connections deep enough to sustain them through the long period of social distancing.

Recently we have seen an increase in local authorities seeking our advice and guidance on how to grow Shared Lives services as part of a re-imagining of social care which many areas recognise cannot wait for a long-promised government plan for reform. Social care workforce recruitment is a longstanding challenge in a sector known for difficult work, low pay, low status and long hours. Shared Lives offers flexible, home-based work where people can focus on what matters to the person who comes to live with or visit them, and, having been through a unique, in-depth recruitment and matching process, are trusted enough to be freed from much of the unnecessary paperwork, rules and bureaucracy which prevent so many social care workers from being as caring, let alone as social, as they dreamed of being when they entered the profession.

Our strategic advice and support service is currently working with North East ADASS across 12 local authority areas to deliver a wide-ranging and ambitious growth plan, which addresses a common barrier for many Shared Lives providers: how to recruit new carers. As well as a cost-benefit analysis of existing activity, we’ll be delivering data-driven demographic customer profiling for existing carers, along with the design and delivery of a digitally-enabled marketing and communications strategy .

As well as growth, we can also work with local authority commissioners to help deliver a business case for Shared Lives in the first instance. Based on our work to date we have demonstrated an average £20,000 saving per live-in arrangement per year, when compared to other types of available support for people with similar levels of need.

Not only this, our recently announced National Lottery Community funded project is helping to embed a shared, online approach to recruiting and assessing potential Shared Lives carers,  from initial enquiry through to full vetting and training requirements. Launching in March this online portal will further streamline Shared Lives carer recruitment, maintaining an in-depth, values-based approach, but reducing recruitment and approval times from 4-6 months to 4-6 weeks.

Shared Lives is still a relatively small cog in the UK’s social care wheel, but with an average annual increase of 6% in Shared Lives live-in arrangements since 2012, we know we can grow the sector in the teeth of financial and demographic challenges. Now we are entering a period when there will unfortunately be thousands of people looking for work, and many more are already re-thinking what a good life looks like and what they want from their career. Flexible, rewarding, home-based and resilient during the pandemic: if national government, local councils and the new Integrated Care Systems are serious about radical change, it’s time to get serious about Shared Lives.

Meeting as equals

My new report, Meeting as equals: Creating asset-based charities which have real impact, will be published by the RSA and NCVO and launched online at an RSA seminar on Thurs 28th January 2021: here

2020 was a year of extremes for voluntary organisations and volunteering. Hundreds of thousands of people have stepped forward to offer to help during the pandemic, including three quarters of a million wishing to help the NHS, people volunteering to help with the vaccination programme, and uncounted thousands setting up mutual aid groups for their street or neighbourhood. Meanwhile hundreds of much-loved charities are providing more support than ever while teetering on the edge of financial collapse as fundraising and earned income has plummeted.

Many charities, like many households and communities, are in survival mode. But for those charities which are able to survive, what then? The future that we might have predicted a year ago has disappeared. Even as many of us live day-to-day, a new future is beginning to emerge. Charities can wait for it to become clear before reacting to it, or we can do what we have always done at times of societal upheaval and be part of shaping it.  

To do that, we don’t just need to overcome our immediate financial challenges, but to recognise and engage with the reputational, public trust and financial crises we were facing as a sector before the pandemic hit. Those issues haven’t gone anywhere. Some were rooted in the difficulties of running organisations which can be complex, large and under financial pressure, while demonstrating the close relationships with community and the very human ethos which all of us expect from charities. Many rose to that challenge and won large public service contracts through responding to the pressure on charities to professionalise and become more commercial and competitive. But after ten years of government funding shrinking far below the level needed for consistently exceptional quality, and some private sector organisations co-opting the language of community to talk about their customers, the challenge now is for charities to demonstrate that we are different. That we can draw on community action just as much as service expertise and that we work in ways which drive the social changes we call for.

During the pandemic, the charity I work for, Shared Lives Plus, has been changing rapidly like many others. We support a national network of Shared Lives carers and Homesharers who share their homes and family lives with people seeking supportive householders. The 170+ local organisations who are part of our network coordinate supportive shared living for over 15,000 people. We’ve seen how more human, personal and deeply community-embedded forms of support can not only be safer and more effective but can be part of creating more inclusive and active communities at a time of burgeoning isolation and loneliness.

The services in our network are based around people who seek support and those who offer it ‘meeting as equals’ and our members are not alone in taking an approach which seeks to find and build on the strengths and potential of people and communities. In writing Meeting as equals: Creating asset-based charities which have real impact, published by the RSA and NCVO on January the 28^th, I have talked with charities which have done just that, often in the most challenging circumstances.

Slung Low Arts is a theatre company which was already sharing its space with a working man’s club, and which has now become a food bank for 7,500 households, because, in the words of co-founder Alan Lane, “My desire to make a big piece of outdoor theatre is irrelevant if people are too hungry to come to a play.” This change came about because when COVID hit, and the team thought ‘what do we do now?’, rather than decide that amongst themselves, they posted a letter through the nearest 200 doors to say “we are here, we have transport, what do you need?” and were willing to be led by the responses.

Recovery Connections believes the key to providing a more personalised substance misuse recovery service is that people with lived experience make up the majority of the team at every level. Dot Smith describes working with the ‘messiness’ in her words, which can come with high levels of trauma. But it’s embracing and valuing that humanity which has enabled Recovery Connections to be one of the few services of its kind to be rated as outstanding by CQC.

These organisations are not just willing to talk about new approaches, but also to talk with a new group of co-decision makers. Sharing decision making through ‘co-production’ is the first step in allowing everyone involved with an organisation to start looking for people’s strengths, assets and potential, not just their needs and problems.

The report sets out what it takes for a charity to embed asset-based thinking throughout every aspect of an organisation. It recognises that how we work is as important as what we do. And that how we work is fundamentally about who ‘we’ are. Who is allowed in the room when we make decisions? Who do we employ? Who shares in the resources, but also in the responsibilities and the risks?  We like to say that we ‘speak truth to power’, but we must also recognise the power we have amassed ourselves, even at a time when our resources, capacity and influence can feel diminished. The ‘asset-based’ charity will share its platforms, access, research expertise and resources with communities in support of the issues which feel most important to them, demanding less control in return.

Can a charity deliver government-contracted services and run genuinely independent campaigns? Can a financially-struggling organisation become more commercial as well as more community-rooted? I believe that they can. A concept underpinning asset-based thinking is the idea that some things we see as scarce are in fact abundant when we change our approach. Power and resources are not zero-sum: when we set out to combine the resources and expertise of charities with the resourcefulness and care of communities, we can create organisations which build community capacity and which make a compelling cost-benefit case to those commissioners willing and able to listen. When we look for ways of sharing our own power with those we purport to represent, our combined voices can be louder and the message more urgent.

Glimmers of hope

We all know the value of being close to the people we love. That feeling of belonging, of being loved, and of being useful make for a good life. The measures we’ve all had to take to keep ourselves and those around us safe during the pandemic have made being close to people really difficult.

But while we’ve seen isolation become a bigger and bigger problem for lots of people who need support, the people involved in Shared Lives and Homeshare have been a bright spot in an otherwise dark year. They have been there for others, keeping people connected and even finding ways to have fun and discover new talents, like Ivor and Peter in Shared Lives South West who have become accomplished painters:

Sharon and David Shearing responded to lockdown by going the extra mile to make sure the people they support are still active, leading rich and fulfilling lives with activities tailored to them. This was the moment the Shearings found out they’d been highly commended in our Shared Lives carer of the year award!

In Homeshare, we’ve seen how having somebody at home with you can make a vital difference to people’s experience of lockdown. Indeed, some matches have been living it up through the pandemic!

Many of you have been getting into the Christmas spirit, like Shared Lives Hertfordshire who played a fancy dress Christmas bingo!

While Gillian and Chanroth, who live with Shared Lives carer Tracey, have been getting in the festive mood by decorating their family Christmas tree:

Homeshare and Shared Lives 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 at the moment – especially if you share that home with someone who’s looking out for you.

We know our members have been working even harder, for even longer, than usual. A large majority of local areas have provided extra support and reimbursement for Shared Lives carers during the pandemic, but we are working hard with Shared Lives carers, scheme workers and councils, to make things easier.

This means getting day support services re-started, reimbursement for increased costs and ensuring Shared Lives carers can get help and advice when they need it. Our local campaigning has resulted in pay increases and financial support for Shared Lives carers in a number of areas now. Our Homeshare team have been working hard with Homeshare organisations to help them face the new challenges at a time when we need inter-generational support more than ever.

Despite everything, we’ve seen Shared Lives and Homeshare grow in the past year and we’ve got some new projects on the way, including online Shared Lives carer recruitment, a new form of peer support for families who are under pressure, and more support for survivors of domestic abuse. 2021 looks like it will start with a desperately tough few months at least, but we will be doing everything we can to bring heart, home and hope to as many people as we can.

Wishing you all a safe and peaceful Christmas.