social care – Escaping the invisible asylum

Care Minister meets Shared Lives households

June 22, 2021June 21, 2021Alex Fox OBELeave a comment

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

Meet the sharers

June 7, 2021Alex Fox OBELeave a comment

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.

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.

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.

Whose social care future is it anyway?

May 27, 2021Alex Fox OBELeave a comment

The Whose Social Care is it Anyway? Inquiry Group issued their first findings today from talking with over 500 people who use social care support. This was done by Social Care Future, a grassroots movement with a vision which sounds very different to so much of what the social care sector talks about:

‘We all want to live in the place we call home with the people and things that we love, in communities where we look out for one another, doing the things that matter to us’

They talked peer to peer with people about how to make that vision a reality. These are the five changes people called for:

Note that people didn’t talk about quality, safety, prevention, integration, innovation or the other jargony terms that so much social care policy can get wrapped up in.

The report asks whether national organisation like us at Shared Lives Plus will ‘commit to use the Social Care Future vision … in your work? Will you take direct action yourselves and support your members to act on the 5 key changes?’

These are easy commitments for us to make. We agree with these five changes and will try to make them happen. Shared Lives, Homeshare and Family by Family all help people directly with building communities where everyone belongs, living in a place that feels like home and leading the lives we all want to live. We are helping local areas to invest more money in growing those ways of working, for instance, working with the North East councils and ADASS to recruit more Shared Lives carers and match more people into supportive households.

We still have a long way to go on sharing power and being a charity that ‘meets people as equals‘ but our colleagues who have lived experience and are part of our team are helping Shared Lives Plus on that journey, and we are helping our local members to have better planning conversations so that everyone gets to shape their local services.

We are calling on the government to invest in models which bring these changes about as part of the long-awaited long term plan for social care. We could have a very different social care future to the social care we have at present, but only if we recognise that it’s a future which has to be shaped by two groups of people:

the people and families who make most use of social care now
the groups and communities who are most likely to be ignored or poorly served by social care

Robots

March 29, 2021March 28, 2021Alex Fox OBELeave a comment

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

February 26, 2021February 25, 2021Alex Fox OBELeave a comment

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.

Rebuilding communities and rebuilding social care are deeply linked challenges

June 2, 2020June 1, 2020Alex Fox OBELeave a comment

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.

News feature on Buurtzorg, the Dutch model of neighbourhood care

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.

Lost and found

April 30, 2020Alex Fox OBELeave a comment

Here is an extract from my new blog for the Royal Society of Arts here

In the social care sector, we are currently all too aware of what we don’t have.

We still lack adequate protective clothing for workers doing the most important jobs.

We still lack people in key roles – like the social care workers who until a few weeks ago were ‘unskilled’, but are now the heroes we applaud from our doorsteps each week.

We still lack virus tests, which means we lack the knowledge we need to keep people safe. Individually, many of us lack money because people are losing paid work. We lack social contact, freedom, green spaces, hugs. (and pasta.)

The things we lack are causing hardship and hopelessness. We are also finding some things we didn’t realise we had.

We have new friendships, and support where we weren’t expecting it, as thousands of grassroots mutual aid groups have sprung up.

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 we lack, let alone the people we have lost.

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 weeks (and years) will be, we must make everything we can of what we’ve found, and what people have offered to give.

This moment of people stepping forward and reaching out to each other will pass very quickly. Without action, it could be replaced by something much bleaker in the hard years to come.

The story of the next few weeks will, I believe, be of the NHS doing better than feared.

But the challenges within social care will be brutally exposed. Particularly where three problems are found together: lack of money, lack of central planning or strategy, and buildings which house too many people in close contact.

We will rebuild our social care services after this. But surely we cannot want to reconstruct the broken systems which contributed to us being here?

I believe that building better systems should be based on three closely linked principles:

A renewed drive towards living at home, or a place which feels like home
Formal support combined with community connection
Care organisations controlled and run at the neighbourhood level

For more on how these will work together, read the full blog: https://www.thersa.org/discover/publications-and-articles/rsa-blogs/2020/04/social-care-reform

Sharing lives and self-isolating

March 26, 2020March 26, 2020Alex Fox OBELeave a comment

Across the UK, thousands of Shared Lives households are at home as self-isolation becomes mandatory. This means that disabled people, people with mental health problems and others who need significant support are living in a safe place with their Shared Lives carer and for many, this is the safest place they could be. Unlike other services which rely on a staff rota, no one need come in and out of the home and the household can be more resilient and less disrupted by self-isolation than services which lose workers who are self-isolating but currently unable to get tested.

We also know that Shared Lives households are under pressure:

80% of Shared Lives carers are over 50 and 20% are over 70 and themselves in the at-risk group.
Usually, Shared Lives should not be 24/7 care, but at the moment it is: this can mean huge pressure on households as routines are disrupted and there is no break from caring for someone who is distressed and whose behaviour may be difficult to manage.
Like others, Shared Lives households are largely without protective equipment (PPE) and facing shortages of basics and food caused by panic buying.
As short breaks and day support services are cancelled, many self-employed Shared Lives carers are without income, and the government has not yet addressed this for the self-employed. This also means there are Shared Lives carers with capacity to do more and who want to help. We’ve had members wanting to open their homes to patients and NHS staff.

At Shared Lives Plus, our team moved quickly to 100% home working and online and have been working flat out on two priorities for our members: inform and connect. People need the right information – not always easy when most government info has been unclear, incomplete or has needed to be corrected. Not helped by government making a drastic u-turn in its strategy (which was the right thing to do: their modelling turned out to be wrong) but then telling people nothing had really changed: far better to have been clear that the strategy had changed and why. Connection will be of growing importance the longer this situation continues.

We are addressing the four pressure points above:

We have issued guidance for local organisations on identifying and prioritising the households most at risk, mitigating risks where possible and planning for possible scenarios, including infections within the home and Shared Lives carers being unable to care. We have outlined fast-tracked procedures to get new support carers approved.
The key message from our guidance on supporting Shared Lives households under pressure is to help the household build its resilience and two kinds of connections: with other Shared Lives households and with neighbours. We are aiming to get a new Positive Behaviour Support advice service up and running shortly if we can resource it. We’re helping members share what’s working and the team are taking calls where people are struggling.
We have been ensuring that Shared Lives carers, and community care services more generally, are being considered along with other social care services, for PPE and giving practical advice. The UK’s failure to plan for PPE demand mystifies me and has left thousands of the people we rely on most at unnecessary risk. This appears to be being rectified, but local problems are still huge. We’ve written to all the supermarkets explaining what Shared Lives carers and Homesharers are why they need access to food.
Government announcements are imminent about support for the self-employed. In the meantime, our advice to Shared Lives schemes has been: do everything you can to support your Shared Lives carers. We will need everyone during this crisis and in the recession which will follow it. Councils have been given funding to support stability in the social care sector, and the good ones are using it to keep providers afloat and social care workers in this vital workforce. We are supporting Shared Lives schemes to identify their spare capacity and consider how Shared Lives carers who are not currently working can safely support households who are struggling, and respond where possible to the need to discharge thousands of people from hospital. Virus testing, adequate PPE and ensuring people and organisations are working as part of one team will be vital in making this work.

I’d like to thank the 10,000 Shared Lives households and 500 Homeshare households who are contributing so much to keeping people safe and well during this crisis, and the Shared Lives Plus team who have made me so proud to work for such a great charity these past couple of weeks.