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.

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.

Human rights abuses of people with learning disabilities

The Joint Committee on Human Rights (JCHR) published their report on the detention of young  people with learning disabilities and/or autism in mental health hospitals and so called Assessment and Treatment Units. The committee of parliamentarians ‘”condemns the “horrific reality” of conditions and treatment under which many young people with learning disabilities and autism are detained in mental health hospitals, “inflicting terrible suffering on those detained and causing anguish to their distraught families”.’

The government’s inspectors CQC come in for criticism for not consistently enough spotting human rights abuses where they are happening and the committee recommends more surprise inspections out of office hours and even covert surveillance. While CQC clearly made and continues to make mistakes, any public service which relies on covert and surprise inspections to keep people safe is fundamentally broken: the inspectors, even with more than their currently limited resources, will never catch every abuse, if the model is itself abusive. CQC itself says, ‘Services where people stay for months or years, where people are located away from their communities, where there is weak management and where staff do not have access to the right training and support, are more at risk of developing cultures where abuse and human rights breaches take place.’

Our thematic review on restraint, segregation and seclusion’s interim report came out in May 2019. The review has further emphasised the poor environment, high numbers of staff without support or training, and punitive cultures that can develop in these services.

The committee gets tantalising close to recognising this, recommending new legal duties on NHS Clinical Commission Groups and local authorities to ensure the right services are available in the community and making it harder to use the Mental Health Act to detain people with learning disabilities. The most important insight is the ‘the “grim”, predictable pathway to inappropriate detention in these potentially “brutal” circumstances’, from early family concerns around the behaviour of a son or daughter as they reach puberty. The family tries to advocate and fight for support. They remain the source of nearly all care, but are excluded from professionals’ meetings. ‘The child is taken away from their home and the familiarity and routine so essential to them, often many miles away and placed with strangers. Desperately concerned parents are treated as hostile and as a problem.’ This state-inflicted trauma leads to an emergency response, which gradually becomes open-ended ‘physical restraint and solitary confinement.’

Meanwhile, NHS England announced the extension of personal health budgets, already used by 70,000 to take control of their care package, to more people with mental health problems. As I’ve argued here before, personal health budgets, combined with significant investment in voluntary sector advocacy and planning organisations, and in not-for-profit community support organisations, offer a solution to the horrors contained in the JCHR report.

Everyone who has a learning disability, who is admitted into long-term NHS care, must be offered a personal health budget and an independent advocate to help them or their family to find and use community support to help them get out of hospital.

The rules which place decision-making power in the hands of a small group of clinicians must be changed, so that a designated decision-making circle of support, including the people who know the individual best, collectively share responsibility for protecting the individual’s human rights and maximising their life chances.

And every family whose support for their son or daughter is considered at risk of breaking down, must be offered a personal health budget of at least the equivalent value to the cost of the public service alternative, and support to spend it on support which can sustain family life, or provide a community-based alternative.

We could make these changes today.

For the Valentines I never knew – reblog

I loved this blog from Rob Mitchell and Elaine James’ Last Quango in Halifax. With author Rob’s permission, here is how it begins:

There’s a song by a band called the Wedding Present which like so many other songs is about falling in love.  It’s called A Million Miles.  It’s about that moment when you meet someone for the first time. The moment when your stomach spins. You can’t eat, you can’t sleep and yet despite this, as the song goes, you ‘can’t even remember the colour of her eyes’. The song connects with that first fleeting moment when a returned smile and a burst of shared laughter on the walk home together means everything. When your world is filled with subsequent endless telephone calls to each other (it was written in the mid 80s before text). It’s about that mad bit. The bit where the massive risk has paid off, even if it’s only momentarily.

I know it’s different for everybody but that song has always resonated with me because that’s how it feels when it happens. It’s a kind of prolonged Christmas Eve of anticipation. It’s mystifying, scary and the most exhilarating experience that you can have. Its the 1000-1 off-chance of a new human relationship that may lead to love and will involve lust and desire alongside, hopefully, some happiness on the journey. The risk you’ve taken was huge. The smile that might be unrequited, the humiliation of a misread signal, the shocking discomfort of a blind date from hell, the deeply personal hurt that comes from rejection if, as may be likely, a rejection is just around the corner. Yet despite that, despite all of that, we felt it was risk worth taking.

Love and falling in love. Seeing people fall in and out of love. Beginning and endings to relationships plays a huge part of our lives. I’ve completed two three year courses on issues around humanity and social care and I’ve completed countless additional training courses but I genuinely cannot recall ever being asked to write about love in any assignment that I competed. I have definitely never written the word love in an exam. I can’t remember a single lecture on love or certainly not one that didn’t medicalise it, or quickly move towards framing love in terms of ‘attachment’ or ‘obsession’. But love and relationships appear to be one clear thing that drives us. We don’t get to choose who we love or we can not prevent unrequited love. It is part of who we are, and can at times lead to terrible sadness. It is the essence of humanity. And yet, it is something that health and social care isn’t comfortable with.

As social workers you would think that our profession would be there when people needed help and support with love – it’s sort of in our job title. But in my career, I have found the most significant block in terms of our thinking about supporting people to experience the love, with all the risk it brings.  I can recall on one hand the number of conversations I have had with people where there has been a positive approach to helping someone with any aspect of having that ‘Wedding Present song’ feeling.

It is particularly stark when it comes to people with a learning disability. Instead of love, I hear about sex a lot.  Read the rest of the blog here.

Big changes in small places

There is a shift being planned for the NHS which has the potential to be one of the biggest in its history. Certainly more long lasting and with more potential to create real change for people than the scores of restructures which the UK’s favourite public service has had to endure during its nearly 70 years of history.

It’s a shift that has often been talked about as desirable, more recently talked about as essential, but never, if we’re being honest, one which has been backed up by real system change.

It’s the shift from hospitals to communities, but it can’t just be moving familiar approaches into smaller buildings. It’s the move from formal to informal care, but it can’t be about sacking your heart surgeon and replacing her with a volunteer, which is what many people will read into that kind of change. It’s the shift from a biomedical to a social model, but we’ll have to find some plain English for that. As Anu Singh eloquently outlines in her recent blog, it can mean support to self-manage rather than rely entirely on medical professionals, peer support or group activities, and health coaching, but it has to be about more than those new programmes, it has to be a change which takes root across the whole system.

This won’t be easy. Whether we work in healthcare or not, we are all taught that health professionals know best. The expertise of our health professionals, based on years of training and incredible advances in research and medical technology is fantastic and we should never take for granted that we access that for free: it often stops suffering and saves our lives. But that attitude of ‘doctor knows best’ is less useful when we feel that we aren’t really responsible for our own health, or can’t manage our own care. And it can be lethal when the health system ignores the insight of people themselves or their families which is a lesson we never seem to learn. It is these ingrained attitudes which both people using services and those working in and managing them find so hard to shift.

We talk about them as culture change, which is often code for things we don’t really think are achievable, and our responsibility. I’ve blogged before about the changes which are achievable and are the responsibility of us all:

  • Building asset based thinking throughout the system: this means everyone being trained to think first about what people can or could do with support, then about what they must rely upon services and professionals for.
  • Passing the ‘connection test’: expecting all services to connect people and avoid disconnecting people from their family, friends and communities, and having the courage to measure both the connections and disconnections.
  • Thinking whole-person, which for most people means thinking whole-family and whole-community. Family carers are not just another group of people with support, they have expertise, are often care coordinators and they provide untold hours of support. They need training, breaks, information and access to emergency back-up: the same things that paid professionals need to care safely and well, without damaging their own health.
  • Continuing to shift power to people, not just as individuals (eg Personal Health Budgets which shift control of money from services to individuals) but also as groups (eg people with Personal Health Budgets given the opportunity to link up, pool resources and feed into planning processes).

We are excited that Shared Lives, thanks to a £1.75m grant from NHS England, is going to be one way of showing people that these cultural shifts can be practical, affordable initiatives that will help people live well, enable others to contribute their skills in a very human way, achieve better health outcomes and save money. £1m of funding and additional expert support is being made available to Clinical Commissioning Groups (CCGs) to enable:

Because Shared Lives carers are trained and paid, but not by the hour, doing much for which they expect no payment and involving their family and friends informally, Shared Lives is able to combine the best features of paid and unpaid support: the formal and informal, professional and personal. This way of working can’t be forced, but it can be facilitated: the matching process ensures that everyone involved makes a positive choice to spend time with each other, rather than being assigned or placed. As a nurse who is now a Shared Lives carer put it: “I can still use my nursing skills but there aren’t the same power structures and bureaucracy in my kitchen as there are in the hospital.”

The shift in power and the cultural change cannot be separated. The experience of doing things so very differently changes the lives and thinking of everyone involved, commissioners, people using support, managers, Shared Lives carers and even their kids. But it’s achievable, scaleable, affordable and most of all, it’s happening right now, in an ordinary-looking family home not far from you. As strategic partners of the NHS England Integrated Personal Commissioning programme, we will be spreading this new way of doing and thinking nationally with lots of NHS organisations.

Many people fear big changes in the NHS. They think of iconic hospital buildings closing. The values of the NHS being erased for the profit motive of faceless private sector multi-nationals. This change is happening in small places, but those small places are everywhere.

The Institution Test

Four years after the 2011 Winterbourne View abuse scandal, the government is soon to publish its response to the Green Paper on transforming care for people with learning disabilities, whilst I understand NHS England will be publishing updated plans next month as part of its Transforming Care work. Meanwhile, the latest statistics show that the number of people with learning disabilities in hospitals and other institutions remains almost entirely unchanged. Some people left, but just as many were admitted into the vacant beds.

There is anxiety about closing these facilities, but the figures strongly suggest that as long as they exist, with their vacant beds needing filling to ensure that they remain financially viable, people will continue to be referred into them, however much success there is in helping people to leave.

The inertia is embarrassing for government and its partners at a national level. We need a complete rethink of the effectiveness of the ‘sector led improvement’ approach, when it comes to tackling changes which require parts of the established sector to close themselves down. However, the relevant decisions are taken locally, by clinicians and commissioners, and it is unlikely that any of them will be held accountable for the failure to achieve change. How long will we continue to see that lack of progress without concluding that the local decision making structures are the wrong ones, and transfer that money and power elsewhere?

People with learning disabilities were unheard and hidden away in Winterbourne View. They continued to be ignored in the improvement work which followed. Thousands of meetings were held, but most of them without people with learning disabilities and their families. Thousands of pages were produced, most of it gobbledegook to citizens and ignored by the professionals it was intended to guide.

One of the many frustrating aspects of the post Winterbourne work is the ready availability of community-based alternatives such as Shared Lives which help people to live better lives at lower cost, but of which professionals and families remain largely unaware. So what changes should the new plans include, if they want to end five years of failure? Here are five, based on the views I heard in the few meetings which did involve people with learning disabilities and their families:

1. It’s only through people having the chance to see and try out new models that we can challenge entrenched views and fears. We need to invest in a series of peer education programmes for clinicians, parents and people with learning disabilities. For each group, their peers are best placed to help them to see and explore other models. Where people want to try out new models, they need to be able to do so with their current arrangement held open for them in case it doesn’t work. This would all cost money, but there is a strong invest to save case, which would also lend itself to the use of social investment, paid back through the significant medium/long term savings.

2. We need to reward care providers for progress towards independence and penalise lack of progress. The current financial incentives are to keep people in the same expensive dead ends for as long as possible.

3. Money is not unrelated to power. We need to give individuals and families clearer rights to personal (health) budget control and a new right to challenge for control of resources where they and their advocates can put together a plan at the same or lower cost. At present, families are told there’s no resources to help them cope, then when that family care arrangement collapses, suddenly there are thousands of pounds a week for providers. Commissioners should have to demonstrate that they have talked to individuals and families about what they could do with any new money allocated, before committing that spend to institutional care.

4. Commissioners must be obliged to make themselves regularly accountable to local people with learning disability and families, through a new system of local scrutiny boards led by self-advocacy organisations. This would replace (or in some areas enhance) existing Learning disability Partnership Boards with a body with teeth and a new right to challenge commissioners for control of resources (building on the Localism Act which introduced a right to challenge service provision, but not commissioning). These boards could feed in to the national forum, which currently suffers from a lack of consistent local infrastructure upon which to draw.

5 People with learning disabilities from CHANGE and other self-advocacy groups made the observation that small buildings can be institutions too, because it what happens inside the building that matter. We need a new ‘institution test’ for services in this field, which could be carried out by (trained and paid) people with learning disabilities on behalf of care inspectors, CQC. Services should be obliged to demonstrate that they are not institutionalised and actively reducing institutional practice, attitudes and behaviour.


‘No more talking: we want action!’

I’m just back from holiday and full of cold, so it was both an exciting and head-spinning day on Wednesday, which started with talking to a scarily large audience at a Nesta event (People Helping People – see previous blog) about Shared Lives and social action. At lunchtime I met up with a group of people with learning disabilities from CHANGE ( who had come to London to share the views from the Voices Choices conference in June. At that event, 100 people with learning disabilities had come together from all over the country, to talk about how to close down institutions for people with learning disabilities an ensure that there are no more scandals like Winterbourne View.

We were preparing for a summit later in the afternoon, hosted by Care Minister Norman Lamb and involving impressive array of leaders, including: NHS England CEO Simon Stevens; Chief Inspector of adult social care, Andrea Sutcliffe; CEO of ACEVO, Sir Stephen Bubb; Chief Nursing Officer, Jane Cummings; Co-chair of the Winterbourne Assurance Group, Gavin Harding MBE and Karen Flood from the National Forum for People with Learning Disabilities.

You can see some of the discussion and pictures from the summit in the #voiceschoices Twitter stream and you can find the four sets of proposals produced by people with learning disabilities on CHANGE’s website. It’s worth reading: Simon Stevens said that in four months of his new job it was the clearest, punchiest policy document he has yet read. Perhaps we should produce all policy documents in easy read first – it’s a great test of whether you really understand what you’re writing and reading….

The session started with some incredibly moving personal experiences from people with learning disabilities. The accounts of poor care, rape, workplace bullying and oppressively inaccessible services were, as one participant put it, shocking but not surprising. But as Karen Flood eloquently pointed out, what was moving was not just the suffering, but how each individual had turned their distressing experience into a powerful force for change. Each ended their presentation with ‘don’t’ call me a service user, I am a professional just like you’ and they were now in roles, including paid jobs, in which they trained people, made decisions and spoke at events here and abroad. Sean from CHANGE and others said that having a paid job meant he had the status and power which professionals had, rather than always being the only unpaid volunteer in a room full of professionals.

There are lots of proposals in the document, but the group had decided that in the limited time, they wanted to focus on proposal two which is about employing people with learning disabilities in making change happen. How many times do you go to a conference about people with learning disabilities and there are hardly any – or even no – people with learning disabilities speaking and leading sessions? How often do committees meet to discuss the services which affect every aspect of people’s lives, without a paid, trained professional with a learning disability there to share their expertise? The people at CHANGE believe that inclusion, participation, co-production are all just words unless people are employed, just like everyone else.

I didn’t do a great job during the part of the session I facilitated of explaining why we were focusing down so specifically on employment as the route to change, given all the other important proposals on the table, but the professionals with learning disabilities demonstrated why Continue reading

Closing the Winterbournes

The Department of Health (DH) has published its response to the Winterbourne View scandal. It contains some strong messages about removing the last institutions in the learning disabilities sector as soon as possible and uses Shared Lives in its report giving examples of effective practice.

We have been working with the DH to raise Ministers’ and officials’ awareness about the strong track record of community-based approaches like Shared Lives in helping people labelled ‘complex’ or ‘challenging’ to move out of institutions. With KeyRing, we have published today a short report giving examples of how Shared Lives and KeyRing networks can be used. The report identifies the main challenges as NHS commissioning practices and poor risk management, including a failure to work in partnership with families and weaknessess in the regulatory regime, which the DH proposes to address. The report makes these recommendations:

  • All 1,500 individuals to be offered immediately a personal budget (if their care is social care funded) or a personal health budget (if funded via NHS Continuing Care) plus a brokerage and advocacy service.
  • Professionals, including NHS consultants and commissioners, need to be educated about non-traditional approaches.
  • Regulators to ensure that any care provided for more than a very short period of time demonstrates that it enables individuals to experience ordinary lives, unless there is a demonstrable safety or legal reason why this cannont be achieved.
  • Exploring the use of payment by results and social finance investment approaches to bring alternative providers into the market, or to allow double-funding of experimental support packages for short periods.
  • Raising the status of people with learning disabilities, in particular through achieving higher levels of employment including employing people in regulatory and inspection roles.

The DH report echoes a number of our recommendations and it is heartening to see that the government has pursued a strong line on this, rather than hiding behind the banner of ‘localism’. Local areas will be able to take a range of locally-decided approaches to closing the Winterbournes, but it’s right that closing them or reducing their use is not seen as optional. Full report:

Sharing your life with an ex-offender

Recently, I’ve been looking into the use of Shared Lives with people who offend.

About 8% of the general population is considered to have a learning disability or a ‘borderline’ learning disability. There is little consensus on the proportion of people in prison who have a learning disability, but the University of Liverpool looked at the people in three prisons in England in 2006-7 and found that 32% would be considered to have a learning disability or to be borderline, 6.7% being within the definition of learning disabled used by the Valuing People White Paper. So about 5,000 people with learning disabilities are in prison on a given day using that definition or 6,800 likely to be eligible for community services for people with learning disabilities. However, there are few community-based services for learning disabilities in the UK set up specifically to address offending, and few programmes for offenders or addiction services have been adapted for people with learning disabilities or learning difficulties.

We feel that there is real potential for the use of Shared Lives for ex-offenders, particularly for people who have learning disabilities.  ‘Darren’, who has a learning disability, moved in with Shared Lives carers ‘June and Rob’ six years ago when he was 18. He had committed serious sexual offences in his teens which had led to his being completed rejected by his family. Because of the level of risk, probation and social services were unable to find a placement in the whole of the region, other than a service which quoted £5,000 per week Continue reading