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.

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

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.

Lost and found

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

Lives lost

We have been extremely sad to learn of a small but growing number of deaths within Shared Lives households and amongst those who use Shared Lives for day support or short breaks. We have been told of two Shared Lives carers who have sadly died from COVID-19. One bereaved partner continues to care for the person who lives with them, during this most difficult time. As a national network, we are trying to ensure that every life lost is recorded. We will be talking with members and families over the coming months about how best to celebrate everything these individuals achieved together, and to mourn their loss. Their numbers, sadly, will grow, but we must not let them be reduced to numbers: each was an individual who gave so much to those they shared their lives with, and who was much loved.

The thoughts of all of us at Shared Lives Plus are with the families and households who are grieving.

Whatever it takes

The original assumptions in planning for COVID-19 in the UK were that a very large number of people would get it. It was known at that time that it was deadly for many older and disabled people. Presumably the plan was to keep older and disabled people, particularly hundreds of thousands of older people who receive social care, safe from infection. That could only ever have been done through a massive programme of safety equipment (PPE) and testing. That we are still playing catch-up on PPE and only a tiny number of the people who care for older and disabled people have been tested, gives the impression that as a nation we have abandoned a whole section of society to this illness. Nearly 1,000 people a day are dying in hospital, but we don’t even know how many are dying in care homes – don’t they count?

The government has, quite rightly, said it will do ‘whatever it takes’ to keep the NHS going through COVID-19. This isn’t just a message from Health ministers but from the Chancellor and the PM. We have not yet heard ‘whatever it takes’ to keep social care going. Put another way, we need the government to say, from the top down, ‘We will do whatever it takes to keep older and disabled people alive’.

A pandemic is no time to be alone

Amongst the many pieces of advice we are being offered as the Coronavirus looms over Spring, is that infected people should ‘self-isolate’. This is a striking phrase: in my organisation, we spend a lot of our time and energy on reducing isolation. Loneliness reached pandemic proportions long before we had heard of Covid-19. Many older people and others who have mobility problems, or social challenges, are of course chronically isolated already, so on the face of it, this particular piece of advice will be hard not to follow. The virus guidance also talks of ‘social distancing’: another phenomena which has already become endemic in too many communities.

In reality of course, people with virus will need food, groceries and medicines. Even if the illness itself is relatively mild, being infected with a virus that looms so large in our minds at present is going to be a worrying experience. People with good social support networks will be able to self-isolate with less suffering than those who are already isolated: they will have friends, family and neighbours willing and able to drop off supplies, even if they can’t have physical contact. They will have people to talk with on the phone. Self-isolation will be most difficult for the most isolated. For people for whom living alone is already precarious, it will bring its own dangers.

Being ill feels like an intensely personal experience: we become wrapped up in the symptoms and feel turned in our ourselves when we are suffering. But epidemics, whether physical viruses or public health emergencies like loneliness or obesity, are social events. Michael Marmot and others have been presenting the evidence for health as being socially-determined for years.

Now would be a good time to reach out to our neighbours, and people we think may be isolated or lonely. It may be possible to establish a connection and communication channels that prove vital during the expected height of the epidemic. A period of self-isolation is no time to feel alone.