Latest news

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:

Join us at 2pm today!

What should 21st century care look and feel like? How can we make it happen? I’m excited to be part of a discussion in which two of our Ambassadors, Meg Lewis and Tom Milnes, join me and renowned authors and thinkers Hilary Cottam (Radical Help) and Madeleine Bunting (Labours of Love: the crisis in care) to talk about how to make care and support feel more human. You can still register for this free event here.

This is part of our two day national conference which has been generously supported by Weber Shandwick, The Flipside, Towergate Insurance Brokers and our designers, Design Integrity. Thanks to them and to our amazing team at Shared Lives Plus who have put together an exciting programme for over 200 Shared Lives and Homeshare people and practitioners.

Covid can be 30 times more deadly for people with learning disabilities

The Bristol University-led LeDeR review’s latest figures show shocking differences in the rate at which Covid is killing people with learning disabilities: over 6 times higher for all age groups, but 30 times more likely to die than other 18-34 year olds. This is partly explained by the higher rates of obesity and diabetes among people with learning disabilities, as well as Down’s Syndrome’s physical health impacts being a factor. These risks have been known for a while, and should have resulted in the health and weight loss drive which the Prime Minister has championed being made accessible to people with learning disabilities. However, as we noted in the Report of the National advisory group for People with Learning Disabilities and Autistic People there are other, deeply disturbing factors to consider and address.

Firstly, the report also finds that while the number of deaths of white people with learning disabilities was nearly twice as high this year as last year, for black and asian people it was over four times as high. There is no physical or medical reason for that of which I am aware: it suggests a layer of systemic racism on top of the prejudice which we know people with learning disabilities already encounter in the NHS and other public services. As Kevin Marriott says of his brother Nigel, 60, who died of Covid in April, “People with learning disabilities seem to be be swept aside. He wasn’t given the sort of treatment we would have expected…I got the impression that normal patients would have gone on to a ventilator, but he was just allowed to die.” (The Guardian, November 12)

In our report, we quoted a Learning Disability England survey which found that 13 social care organisations saw an increase in blanket “Do not resuscitate” orders (DNACPRs) in March and April. Turning Point challenged 22 during April/May compared to around three per month beforehand[1].

How many people with learning disabilities were left to die, when others were treated and saved?

In our report, co-produced with people who have lived experience and families, we called for urgent actions to improve the health of people with learning disabilities and autistic people to reduce unnecessary deaths:

  • analyse with urgency GP data on causes of death for autistic people and people with learning disabilities
  • a campaign to reduce unacceptably high rates of obesity and diabetes, which increase COVID-19 risks
  • reduce prescription of psychotropic medication, which may increase COVID-19 risks and urgently review medication for people with multiple prescribed medications which can carry multiple health risks
  • outlawing ‘learning disability’ or ‘autism’ being given as a ‘cause’ of death or a reason for a DNACPR notice[2].
  • Working with self-advocacy groups, families and providers to ensure people with learning disabilities and autistic people, and their family carers and support workers, receive flu vaccinations[3].

We are waiting for a response on all of these suggestions. The LeDeR report should be the spur to real, urgent action.

[1] including a partially-sighted man with pneumonia wrongly diagnosed as coronavirus, who was discharged fully recovered from hospital after a brief stay, but found to have a DNACPR decision citing ‘blindness and severe learning disabilities’.

[2] This was a recommendation of LeDeR, who commented in their recent annual report that, “by recording Down’s syndrome for example as an underlying cause of death, it conceals the more specific causal sequence of events leading to the person’s death. This was the case for 655 deaths.”

[3] Three successive Learning Disability Mortality Review (LeDeR) annual reports identify that pneumonia and aspiration pneumonia are the most frequent conditions cited as Cause of Death for people with a learning disability.

October newsletter and UK conference

  Shared Lives Plus
October newsletter While Covid-19 continues to loom large, Homeshare organisations, Shared Lives carers and those they care for continue to show great resilience during exceptionally challenging times. Our latest newsletter begins with one of the highlights of our forthcoming UK’s shared living conference where we will joined by, among others, internationally acclaimed social entrepreneur Hilary Cottam:     This sought-after webinar will be chaired by author and former Guardian columnist Madeleine Bunting. Joining Madeleine and Hilary will be Shared Lives Plus ambassadors Tom Milnes and Meg Lewis, along with CEO Alex Fox OBE, with the discussion focusing on how person-centred health, care and support services will help people to thrive and live more fulfilling lives.    Book your place now!   2020 theme: Kindness Delegates and keynote speakers such as Madeleine Bunting and speakers from the Carnegie Trust, people with lived experience and our UK-wide team, will all be contributing to our annual conference, as we work towards our vision of a kinder, stronger society built on sharing our lives and our homes.      Shared Lives care championed in latest CQC report
We are proud to have been highlighted in the new CQC guidance covering the regulation of services for people with autism or a learning disability. The ‘Right support, right care, right culture’ report outlines how providers should demonstrate they are meeting CQC requirements and also features a Shared Lives scheme, rated ‘outstanding’, as one of its case studies. Read more here…

This week, the CQC also released its ‘State of care’ report, which shows that Shared Lives outperforms all other forms of social care!      Did you know your Shared Lives scheme could save you half a million pounds a year? We offer strategic advice to local authorities and Shared Lives schemes to help develop, diversify and grow Shared Lives. You can read the latest blog from Mark Gallagher, strategic advice and support manager, or find out more here…   If you’ve not already, do keep in touch and sign up to my not-so regular newsletters. Until next time, take care and stay safe,

Chief Executive, Shared Lives Plus
NHS Assembly Member, Vice Chair: Think Local, Act Personal     Subscribe to Alex Fox’s newsletter

Out of sight – who cares?

The latest report on inhumane care for people with learning disabilities in modern day Britain, this time from care inspectors, the Care Quality Commission, could not be more damning:

“we found that time and time again people were not getting the care they need, when they need it. We have attempted to reflect what we saw and the many examples we found of care that was undignified, inhumane and that potentially breached people’s basic human rights. We are grateful to those who have shared their experiences with us, and hope this will go some way to illustrate the trauma they have been through when they have sadly been failed by the system that was established to care and protect them (whether due to hospital admission from lack of crisis care, segregation or inappropriate use of restraint). Cumulatively, the evidence that we have gathered points to a system where people with complex needs fall through the gaps. We cannot be confident that their human rights are upheld, let alone be confident that they are supported to live fulfilling lives.”

They were not talking about exceptionally bad services: this is their verdict on what is considered normal for an entire group of people. Their recommendations are sensible. And they will make little impact. The report itself acknowledges the long line of similar reports going back decades, all with clear pictures of failings that are ‘shocking’, despite each having the same overall message. So the CQC’s entirely sensible recommendations about improving accountability, oversight, training, assessments and even their own inspections, will not prevent the next such report. This is a report about people with learning disabilities, not by them. It is about how to improve models of care which actively harm people, with ‘care’ that in many cases would be considered criminal if it was for any other group of people. This report should have one recommendation: close these institutional services and replace them with the models which CQC itself acknowledges can work. As the report itself says,

Another alternative is possible.

The question asked by the report’s title remains unanswered: Who cares enough to bring that alternative from the realm of the possible into reality?

In the meantime, the reports pile up, along with the wasted days spent out of sight, and out of mind.

The real Homeshare

As we come to the end of ‘Lodgers for Codgers’, the Channel 4 documentary based loosely on the Homeshare model of intergenerational shared living, we are reflecting on some of the key issues and how Homeshare can be the answer in the real world beyond the TV experiment. This is a guest blog by Homeshare Sector Development Officer Alice Williams.

Real Homeshare relies on careful matching 

The Channel 4 show uses a speed dating café to match older and younger people who, following their short introduction, agree to move in together for five days in exchange for some rent and help around the house. ‘Real’ Homeshare in the UK is a bit different. It is not a commercial arrangement with a ‘landlord’ and ‘tenant’ relationship. All Homeshare matches are arranged and facilitated by a Homeshare organisation, which carefully vets and matches each party for safety and compatibility and shared interests. They are given time to get to know each other before moving in and the match is monitored and supported on an ongoing basis, to ensure continued safety and security and would not put people with conflicting views or lifestyles in the same house, although I guess this would make for slightly less exciting TV!

margaret and holly in leeds
margaret and holly in leeds

Real Homesharers Margaret and Holly in Leeds

The young people in the series were all facing real issues with housing. Some were still living at home, unable to get that taste of freedom and independence like Liam, Jake and Sophie. They were facing homelessness like Ciaro, or had never experienced what a safe and secure home was like Marvell and Chè. Lucy was even considering living in a van to afford her chosen city.  Social media, lifestyle publications and shops sell the dream of your perfect home and the private rented sector knows this. The cost of having that all-important place to call home is rising beyond many people’s means.

sheila emma emily cheltenham
sheila emma emily cheltenham

Real Homesharers, Sheila, Emma and Emily in Cheltenham

Whether you’re in your 20s or 80s, everyone needs a place to call home. Now more than ever home is a sanctuary. When home isn’t right, others parts of life start to unravel, whether it’s mental health, employment or relationships. Being secure and happy at home is the lynchpin for your general well-being. The motivation for real Homeshare has to be about more than only saving money: for it to work, you must really want to share your time and home life with someone else.  In Homeshare people are matched for compatible interests and outlooks on life. You are a lifeline for each other. It’s more than a room to rent; it’s a friendship and genuine desire to help each other.

There are around 1000 people Homesharing across the UK. Many Homeshare organisations are start-ups and making matches can be hard due to lack of suitable and available participants. There are estimated to be 3.8 million older people living alone.  If only 1% of these considered Homeshare, we could create a vibrant and thriving alterative to a housing market which fails so many.

Read about real Homeshare matches here

Find your local Homeshare provider to enquire with here 

We must not forget people with learning disabilities and autistic people during Covid

Over the summer I worked with experts-by-experience Trevor Wright and Rachel Moody to co-chair an advisory group of people and organisations who drew up recommendations for government on supporting people with learning disabilities, autistic people and their families during the next six months. Our report was published by the government last Friday, along with the Social Care Taskforce report and the Winter Plan. Here is our joint statement as the three co-chairs. Please share it! There is an easy read version which will shortly be on our website.

Response to the Social Care Taskforce report and the Winter Plan From the co-chairs of the Advisory Group for People with Learning disabilities and Autistic people 23rd September 2020

We are glad to see our report published in full and its recommendations included alongside the Taskforce’s over-arching ones. We welcome the emphasis in the Taskforce’s report and the Winter Plan on PPE, testing, Flu, workforce and stabilising provider organisations.

The Taskforce’s over-arching report and the Winter Plan are heavily focused on what has been the most visible crisis in care homes for older people. Now much more attention is needed on those of all ages including those who live in their own homes and those who receive care in the community.

The Taskforce has recommended that government should work with the Advisory groups on all outstanding Advisory group recommendations. We urge the DHSC to establish working arrangements to take this recommendation forward and we offer our continuing assistance. The Winter Plan urges local bodies to “put co-production at the heart of decision-making, involving people who receive health and care services, their families, and carers.” This must happen at national level too.

Our five highest priority recommendations were specific and included actions which can only be taken by government and its national partners. They addressed these five areas which are of most concern to the people, families and community groups we heard from:

  1. Producing timely accessible guidance and communications to ensure people with learning disabilities and autistic people have the same information at the same time as everyone else.
  2. Restoring, maintaining and adapting vital support services, pausing unwanted reviews of support packages during the crisis, to give individuals and families stability and to reduce the anxiety and pressure which many have been experiencing over many months.
  3. Financially stabilising provider organisations, and expanding PPE, testing and support to all providers, not just care homes; growing the most effective and personalised community and home-based support models.
  4. Tackling the concerning increase in isolation and loneliness through a national awareness campaign and working with mutual aid and other community groups.
  5. Councils, CCGs and partners finding and supporting people who are usually too independent to require social care but who may be in crisis due to the many impacts of the pandemic.

The taskforce and Winter Plan address vital practical and physical support issues, but we are deeply worried that the lack of current attention to emotional and mental health, inclusion and social support may be sowing the seeds of a national mental health crisis for disabled and autistic people, and their families.

The Winter Plan urges local bodies to “address inequalities… involving people with lived experience wherever possible, and consider these issues throughout the implementation of this winter plan” (Actions for local authorities & NHS organisations). Again we urge government to lead by example, working with national VCSE organisations and people with lived experience. Addressing inequalities requires government to address the lack of data gathering and analysis which we noted hamper efforts to identify and address the needs of people with learning disabilities and autistic people.

Finally, the people we heard from cannot wait until after the pandemic for long-term reform, which should be based on a rapid move to more personalised, community-based and integrated approaches to social care, in which the state, voluntary services, individuals and families work more closely together. It is vital that we build resilience of people and families, whether or not they currently access formal social care, as we head into what could be the most difficult period of the pandemic.

The Advisory Group’s co-chairs:

Alex Fox OBE                       Trevor Wright                        Rachel Moody

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 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.