We will learn no others

“Friendly and loveable” Ben King died aged 32 after spending over two years at Cawston Park Hospital last year. Ben’s was one of three concerning deaths since 2018. The hospital was in special measures at the time of his death and has now been closed. According to the charity Inquest, the inquest into Ben’s death found that the breathing problems which ultimately killed him, were down to a preventable health condition, caused by obesity which had got out of control when his day support and activities were cut. When he died, there was not even any plan to help him lose weight, despite multiple hospital trips. He was also hit, hours before his death, by hospital staff, who failed to take his condition seriously enough to get him life-saving treatment. So much about this story is familiar from other tragedies: the fuller life led with his Mum, and then, when his Mum could no longer care for him, the decline through unhappy care services, behavioural issues, institutional care, poor medical regimes and diet, and in the end a bereaved mother campaigning for the truth and some semblance of justice.

It is the failures and abuses immediately surrounding his death which shock most: a staff member ‘struck’ him twice when he was already dangerously ill (I can find no mention of a police investigation). Another ignored him as he died.

But in every case of this kind, it is the long-term, systemic failures which should make us most angry: the inability of expensive services to help Ben live as well as he had done with his Mum, who would have had a fraction of the state resources that were spent on Ben’s care. The budget ‘savings’ made by withdrawing a fitness regime which would have kept him alive. The increasing use of powerful drugs to keep him sedated, with little apparent awareness of how dangerous they were.

The inquest makes clear links between Ben’s hospital admissions and bad choices made by highly-paid experts. Why were those links made by none of those experts? The longer someone remains in a medicalised environment, suffering repeated and worsening crises, the easier it becomes for professionals to see that person’s medical and disability labels, their ‘challenging’ or ‘complex’ nature, as the reason things are going wrong for them, rather than decisions the experts are making, which come with all the reassuring rigmarole of diagnoses, risk assessments, multi-agency planning, case notes. Few if any would have a clear picture of how much better his life had been just a few years before. Did his mother’s concerns become easier to dismiss? Some professionals are prone to talk of families’ (particularly mothers’) ‘over-protectiveness.’ And of course, the more unprotected their son or daughter appears, the more protective they try to be. Services, however, are never described as ‘under-protective’, even when their complacency leads to people’s deaths.

As someone becomes de-humanised, their life diminished, their choices and dreams shrunken, their medical issues more enthusiastically examined and labelled, their distress pathologised, then failures or abuse by individual workers become more likely. There will have been skilled, compassionate people working at Cawston Park Hospital. Its parent company has a social media feed full of lovely-looking care and activities (no mention I could see of Ben or the inquest). But there is a long history of organisations which charge thousands of pounds for their expert care attracting people who are thoughtless or cruel, or who become so.

Another young life lost. Another grieving family. No doubt even now, someone well-paid to provide “strategic leadership” to the services which failed Ben and many like him, will be saying that ‘lessons will be learned’. But we remain hell-bent on ignoring the lesson that disabled people and their families have learned in their thousands for centuries: there are deadly risks and harms inherent in incarcerating people out of reach of family, friends and community. For as long as we continue to ignore that lesson, we will learn no others.

Wrong, dangerous – and deadly?

The latest annual LeDeR report covering 2018-2020 gives what Prof Chris Hatton of Manchester Met Uni describes as “comprehensive, and exceedingly grim” statistics on the deaths of people with learning disabilities. In his twitter thread, Chris describes the shockingly high proportions of people who died who were being given anti-depressants, anti-psychotics, and combinations of powerful drugs of those kinds. Anyone who has worked with people with learning disabilities in health or social care services, will recognise the routine way in which people who have at some point been described as ‘challenging’, ‘complex’ or having ‘behavioural difficulties’ end up on cocktails of powerful drugs, and then more drugs for the side-effects of those drugs (an average of over 6 drugs per person for those who died according to LeDeR). This often goes on for years or decades, with no obvious sense of what the drugs are currently doing for the person, or what would lead to doses being reduced.

Ethnicity, gender and type of disability label all have a bearing on how likely you are to be prescribed various kinds of psycho-active drugs. These statistics of course hide the individual people and lives they analyse, and the Bristol University team who produce the report make a point of starting each annual report with a few stories, like Angela’s:

Angela was funny and had a good sense of humour. She could say a few words and knew a little Makaton. Angela used to enjoy lots of activities including swimming, climbing, bowling and walking but she was less active as she got older. She liked to visit garden centres and listen to classical music.

As we know, “There was a significant increase in the number of deaths at the peak of the COVID-19 pandemic from March – May 2020.” This fact raises many unanswered questions about the extent to which people with learning disabilities were protected and well cared for during the pandemic, and their vital services given all of the safety equipment, support, testing and access to vaccinations which they should have been at an early enough stage. We know that some, perhaps many people with learning disabilities, were wrongly given ‘do not resuscitate’ notices by doctors who believed that they were justified by their disability. The LeDeR report found that 3/4 of those who died had a ‘DNACPR’ notice, with factors such as the person living in a service rather than at home making a big difference to the chances they had one. 6% (up from 4%) of notices for those who died were demonstrably wrong; these will not include incorrect notices put upon people who did not then die.

But it is the correlation between extremely high medication and deaths which Prof Hatton draws out which has been haunting me. As Chris puts it, “Everyone knows this level of medicating people is wrong and dangerous. And it continues.” As NHS England puts it, these drugs, if wrongly administered, can cause not just long term health conditions (such as those associated with weight gain caused by drugs) but other ‘serious’ health problems, yet “every day about 30,000 to 35,000 adults with a learning disability are taking psychotropic medicines, when they do not have the health conditions the medicines are for. Children and young people are also prescribed them.”

The number of things that ‘everyone knows’ are wrong, harmful or downright dangerous, which the NHS, social care systems, and learning disability services and their commissioners carry on doing anyway is a long one. I have argued before that as a public service sector, we have become adept at blaming people who use services for the things we knowingly do wrong: they are problematic, challenging, complex, and we are doing the best we can with limited resources. We are fluent in the language of risk and risk management, but wilfully blind to some of the most important risks (in my book I argue that when we say an organisation is risk averse, we usually mean it’s averse to some risks but stunningly complacent about the risks which matter most to people themselves).

But the implication of the facts set out by LeDeR are that the medicalisation of learning disability and the resulting over-medication of people who if they didn’t have learning disabilities would be treated very differently, could not just be harming, but in some cases, killing people. The NHS and government need to be able to answer that question with certainty, and if it is the case, the response to it cannot just be another ‘improvement’ programme.

Meeting as Equals published today

My new report is out today with RSA and NCVO: ‘Meeting as equals: creating asset-based charities which have real impact’, on how charities can make decisions with people, not about them. Now more than ever we need sustainable communities and community organisations. Read it here.

My blog on it is here. You can join the launch seminar at 2pm GMT here.

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.

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[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.

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.

You’ll never walk alone

As lockdown starts to ease, our members continue to be under pressure like never before and so we wanted to share with you signs of hope and inspiration for our communities after a wonderful week of celebrating Shared Lives carers.

Knowing that we couldn’t meet up in “real life” this year, we made as big a noise online as possible about their Shared Lives carers’ magnificent achievements. We campaigned for their income to be covered for those that have lost income due to lockdown cancelling day support or short breaks and recognition that Shared Lives care is not a 24/7 service for those that open their homes long-term. We released new independent research which shows there is wide appetite for shared living and Shared Lives households met with one of our strongest political supporters. Sign up to my not-so regular newsletters

• Community celebrations across the UK
• New research shows appetite for shared living
• Shared Lives carers meet Shadow Minister for Health and Social Care

At a time when connecting with others has never been as difficult, or as important, we were so proud to show our network walking on through the storm in the premiere of a special film already seen by thousands. If you’ve not seen it yet, let your spirits be lifted and treat yourself to four minutes of pure joy.

Community celebrations around the UK
Across the network, schemes and Shared Lives families got together to celebrate in virtual tea parties, using new skills from our social media training sessions. It was great to see the momentum all over the country – silly hats in the West Midlands with CVT, a beautiful chorus of voices singing “You’ve got a friend in me” in Surrey, handmade cakes in Stoke,  visiting carers with gifts in Bury, bingo and quizzes in Ayrshire – to name just a few.

Kirklees shared a hand-written note from a person supported in Shared Lives which everyone loved, probably because it talked about feeling “more grown-up” rather than “building independence” in professional jargon. Shared Lives Hertfordshire created fantastic, polished videos introducing Shared Lives matches in a warm, intimate and informative way – like Michael and Linda’s story. Linda’s not very good at the Wii, but she’s fun and has changed Michael’s life so that he “doesn’t feel alone anymore.”

Our own social media performance saw a huge spike in engagement – over 1000% increase on Facebook and Twitter- which was a timely boost given our recent research which told us that nearly 70% of people haven’t heard of Shared Lives and Homeshare.

New research shows appetite for shared living

New research by Survation, of 1000 people, also showed that there is appetite for shared living – 65% of people would prefer to share their homes with someone of similar interests to them, and 37% of people who live alone would consider sharing their homes with someone of similar interests, once coronavirus has been fully addressed.

Over half of the respondents to the poll felt that the government hadn’t done enough to address the issue of loneliness during the Covid-19 pandemic. We are proud that Shared Lives and Homeshare are still open for business and are helping to combat isolation. We call on government to help the people who want to live together for mutual support to reach the solutions that already exist and recognise that home is one of the safest places to be, especially with someone who’s always looking out for you.

Shared Lives carers meeting with Shadow Minister for Social care
We’ve been working hard to promote shared living across the political spectrum, and we were delighted to meet up with the Shadow Minister for Social Care, Liz Kendall MP, and Shared Lives households (pictured above), to share the experiences of real Shared Lives with her. We’ve also invited the Minister of Social Care to meet with Shared Lives carers and working with DHSC, LGA and ADASS on PPE, pay and restarting day support/short breaks.

Kendall is a long-standing supporter of Shared Lives and said that the Zoom session was “the most uplifting conversation I’ve had during this crisis.” She will help us to press the government on issues such as PPE, respite and day services re-opening, and in the long term supports our vision of a different way of living with and looking after each other.

Last week I wrote about how the conspicuous

Invaluable

We have been campaigning with our members to persuade the Treasury to adjust their Self-employed income support scheme (SEISS) scheme, which replaces lost profits for self-employed people losing work during COVID-19, for Shared Lives carers, who can apply to the scheme, but typically aren’t eligible for any replacement income, because the Shared Lives tax break usually shows their profits as zero. This has left Shared Lives carers feeling unvalued and contemplating leaving the sector, just at a moment when we desperately need to sustain and expand home-based alternatives to hospital and care homes.

So we are utterly disappointed that the SEISS has not been adjusted by the Treasury to address this, despite our very positive engagement with the Dept of Health and Social Care, and the support expressed for the Shared Lives sector by the Minister of Care Helen Whateley and cross-party MPs, including the Shadow Health team and Labour party leader Sir Keir Starmer. We have been contacted by MPs of all parties as a result of the campaigning which Shared Lives carers have been doing on this issue locally.

In parallel to our national lobbying, we have been working with councils to encourage them to use their social care continuity funding to help Shared Lives carers who have lost income, and also the even larger numbers who are providing more support than ever to someone who lives with them, and cannot at present access day support services. We have many examples of councils doing this and we are talking with the Dept Health and Social Care, and the Local Government Association about how to help more areas to follow suit.

Money can be a touchy subject for Shared Lives carers. There are still areas where people have been caring without a pay rise for years: pre-COVID we were working on this with members, asking councils to sign up to a pledge to give Shared Lives carers the same pay increases as other social care workers. I’m struck by the attitude of one or two areas who seem to feel that because Shared Lives carers give so much of their lives, and don’t expect to be paid for every hour spent with someone, that they shouldn’t really care about money. Some of our members said recently that they feel treated with suspicion if they raise the subject.

The truth is that we all need to live. The fact that our members are often staggeringly generous shouldn’t be a reason to take them for granted, as one area did when they wrote a Shared Lives carer in her 70s to say that with day services closed, the person she cares for would be home with her all day now, and they expected her to provide this extra full time job of care on a ‘voluntary’ unpaid basis.

Shared Lives works so well because it allows people to separate the money that they are paid for the formal part of their role, from their relationship with an individual who many describe as ‘just one of the family’. Nobody goes into Shared Lives for the money. Let’s make sure during this crisis that money is not the reason that anyone has to leave the caring role they love.

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’.

We all have the right to have our voices heard

My new colleague Becky Viney-Wood has joined us as our first policy officer. Becky has been blogging as she meets our members and gets to grips with policy issues on numerous fronts. Here, Becky writes about advocacy and why we should think of advocates as being as necessary in court as interpreters for people who wouldn’t be able to participate without their help:

Two young parents with learning difficulties in Birmingham were deemed to lack capacity to care for their baby, and an interim care order was made…. Read more here.

Becky has also been  to meet some of our members in Milton Keynes. She’s inspired by their  support for each other:

Karen, Shared Lives officer, and I visited Tim, someone who uses Shared Lives care, for a spot check, to make sure that he is happy visiting his Shared Lives short breaks carer…. Read more here

 

Stepping into my own power

My colleague Meg Lewis is one of our Ambassadors, who has blogged about her experiences, interviewed NHS chief, Simon Stevens, speaks to national audiences (for instance, we are doing a double act on safeguarding for the DBS on March 12th), and contributes to our planning and thinking about improving the model. Meg and Nick Gordon from our communications team worked on this film, in which Meg reflects on her journey from hospital ward to shared lives, and now into her own place, which she shares with her dog, Flower. Meg went back to the psychiatric hospital where she lived for four years and talked with the clinicians about her journey: “I knew that I needed to feel a part of something and move away from clinical, boundaried care. Because those people do care, but when they go home they have to switch you off.” It’s a powerful and moving story about hope and, as Meg puts it, how to “step into your own power and change the course of your life.” Enjoy!