Scapegoat

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The #EveryDeathCounts legal action began when the government said it would only publish information about people with a learning disability who are dying from Coronavirus once a year.

I was originally part of the #EveryDeathCounts legal action but I left on the 10th of May

This week the legal action ended.

In this blog I talk about people who have been blaming (scapegoating) Simone Aspis for the failure of the #EveryDeathCounts legal action

I disagree with the people who are saying this

I argue that the legal action failed because the #EveryDeathCounts team didn’t believe the government when it changed its mind and promised to publish information about people with learning disabilities dying from Coronavirus.

The government kept it’s promise.

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A couple of days ago three of the people who had launched the #EveryDeathCounts legal action – George Julian, Sara Ryan and Mark Neary – published their final report on the action and why it was coming to a close. In it there is a paragraph in which they talk about the team involved in the action.

This process has been a strong learning curve for the claimant team which has involved rocky roads. Early on original claimant Mark Brown withdrew leaving a team of four which soon became split due to differences in views and opinions. These differences spilled over Twitter publicly, via Direct Messages and email. This was intensely wearing and drew in other allies who were working to try to improve the collection and publication of data around the deaths of learning disabled and/or autistic people. Prof Chris Hatton, a central academic and activist figure, eventually left Twitter.

This experience raised questions around boundaries, what is considered to be acceptable behaviour (by whom) and the effective silencing that can happen when a person continues to personally attack others unchecked.

There is no reference as to why I left the action despite being one the people who instigated it. Which is understandable. But in this section and others the impression is given that some of the responsibility for the project’s difficulties lay with the fourth member of the “team” Simone Aspis. By the time that Simone had joined the action I had left so I cannot comment on how easy or difficult she may have been to work with. However, what was clear and unedifying, was that in the aftermath of the publication some people on social media were blaming Simone for the action’s failure.

You have bullied and harassed good people. I’m sure there were many reasons this failed but I feel that your behaviour was a contributing factor.

Why does ‘one person’ stick around like glue & try to hinder attempts to make humanitarian progress?

None of which is fair or helpful because whatever difficulties the team may have had, the legal action failed because the government had significantly undermined the justification for it – before it had launched its fundraising campaign on the 11^th of May. In particular Stephen Powis’ response to Shaun Lintern’s question made during the government press conference on May 8^th

Shaun Lintern – “Why has NHS England not published the data it receives on a weekly basis about the deaths of people with learning disability and autism from Covid-19?…  …Will you commit NHS England to publishing that data?”

Professor Stephen Powis – I can commit that we will publish that data…

and

…from next week we will be publishing data on people with learning disabilities, autism and mental health patients who have died in acute hospitals and we will do that on an ongoing basis.  

The government would start publishing the data 10 days later.

In the days following May the 4^th when Rebecca Thomas had reported the government’s original indefensible position – that according to NHSE, data “on people with learning disability and or autism who’ve died from suspected and confirmed Covid19 will be published in the annual LeDer report” –  it was clear that the government had changed its position significantly. Not only as a result of the Powis statement but also because there was increasing evidence that the government was taking steps to improve the quality of the data that it was collecting about Covid-19 as part of the Mental Health Dataset. Evidence that I shared with the team on May 10th.

The root of the failure of the legal action lay in its failure to acknowledge and accept the government’s changed position before launching it’s fundraising campaign, not in the actions of Simone Aspis. No amount of scapegoating will change that.

Advertisement

Preventable Deaths? Covid-19 and the First Deaths of People with Learning Disabilities in England.

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• In this article I write about the deaths of people with a learning disability and some autistic people at the beginning of the Coronavirus pandemic;
• I have argued that politicians must not use politics as an excuse for not sharing information about Coronavirus
• And that we need to learn quickly from history and the information that we have;
• Then I use the example of what happened to people living in asylums in 1918 to show why sharing information and learning quickly is important;
• I then go on to look at the information we have about what is happening to people with a learning disability and some autistic people during the Coronavirus pandemic;
• This tells us that at the beginning of the pandemic a lot more people with a learning disability died than we would have expected;
• But by the middle of June the number of people with a learning disability who were dying was closer to what we would have expected;
• I finish by asking the government, the NHS and the CQC to work with people from across the whole community to make sure that fewer people with learning disabilities die from the Coronavirus in the future.

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One of the things that we’ve heard a lot of during the Corona Virus pandemic has been the frequency with which scientists and politicians have used arguments about the need for robust data to justify not publishing the data that they’ve got. On the surface it might seem like a reasonable thing to state but too often when you dig beneath the surface of a refusal to publish, most of the genuine reasons for not publishing are political.

The reality about dealing with something that is unprecedented is that very little of the data that is available is robust.  The thing about robust data is that you have to have systems in place in order to collect it. These systems have to ensure that the data is measuring the right thing and that it’s reliable and valid. They also have to be tested and quality assured before anybody can make judgements about whether or not the data that is being produced is accurate. It all takes time and one of the things that people have very little of, in dealing with a crisis like this, is time.  Which is why transparency about the data that is available is so important. Over time the quality of the data and information that is being developed will improve but history teaches us that at the start of things, transparency and the real-time development of insight into what is or may be happening is crucial.

Extraordinary Deaths

A while ago I read a paper by J M Cramer entitled Extraordinary Deaths of Asylum Inpatients During The 1914-1918 War (Crammer, 1992 ). It was originally published back in 1992. Essentially it tells the story of the rising death rate in asylums during the World War I, looking specifically at the rise in deaths that occurred once the war had started. In his article Cramer tells us that during the period between 1914 -18:

Nationally, in the 97 pre-war asylums the annual death rate ran steadily at about 10 per cent to 11 per cent of the resident population. In 1915 it was already 12.1 per cent, in 1916 12.6 per cent, in 1917 17.6 per cent, in 1918 over 20 per cent and then fell back to its old level in 1919 and 1920.

At first glance and with the benefit of hindsight we might be tempted to think that the higher numbers of deaths in 1917 and 18 would have been caused by the flu pandemic but Cramer’s analysis of the causes of death indicates that this was not the case.

As you can see from Table 1, in 1918 flu was responsible for a relatively small proportion of the deaths and the variation in the numbers of deaths per thousand for different asylums indicates that practices across different asylums had significant impact on the numbers of people who died within individual asylums.  This variation is reflected in detail’s that Cramer provides on the reduction in the number of calories that people living in the asylums consumed during the war, a reduction that made them particularly vulnerable to the ravages of tuberculosis.

All of this analysis was done long after the war had ended but had it been done at the time, steps could have been taken to change policy and to hold poorly performing institutions to account – in short to save people’s lives. Unfortunately, the government of the day had other priorities and as is so often the case disabled people and the poor are almost invariably at the bottom of the list. This is why the real-time development of insight into how policies are actually being implemented is so important.

So, what is and has been happening to people with learning disabilities and autistic people during the Corona Virus Pandemic?

The short answer is that it has been difficult to tell because getting data out of the government has been like getting blood out of a stone. Initially NHS England announced that it only intended to publish data on the deaths of people with learning disabilities and autistic people on an annual basis as part of the Learning from Deaths Programme (LeDeR). In the context of a national crisis and pandemic, this lack of action and transparency was met with outrage and the threat of legal action on the part of some, including me. As often seems to be the case during this pandemic, the government changed its position and soon after began publishing some of the data that it has on the numbers of people with learning disabilities and autistic people who are dying of Covid-19. It was at the point at which they committed to this that I withdrew from the legal action.

Despite those commitments, what has become clear in the weeks that have followed is that the government has still published very little data that relates specifically to the effect that the virus is having on people with learning disabilities and autistic people. Probably just about enough to make a successful legal action unlikely but not enough to provide a clear picture of what is going on. At least not enough to make it easy. That we have any idea of what has been happening is very much down to the efforts of Chris Hatton.

In a recent blog (Hatton, COVID-19 deaths of people with learning disabilities in England: a quick update, 2020) on entitled “COVID-19 deaths of people with learning disabilities in England: a quick update” Chris draws on the LeDeR data to tell us that up to the 30^th of June 620 people with learning disabilities have died of Covid-19 and that data provided by NHS England on people dying in hospital tells us that up to the same date 512 people with learning disabilities and autistic people have died in hospital with Covid-19. He goes on to argue that:

This dataset also reports the total number of people who have died confirmed COVID-19 deaths in hospital, where flagging information (is the person a person with learning disabilities, an autistic person, or not) exists. From 24th March to 12th May (around the peak of the pandemic), 2.5% of everyone dying in hospital of confirmed COVID-19 was a person flagged as a person with learning disabilities or an autistic person. I tried to argue in the long blogpost that this meant a COVID death rate 4 to 5 times higher for people with learning disabilities and autistic people compared to others. After the (first) peak of the pandemic, from 13th May to 30th June, this has dropped to 1.5%, which is still a death rate 2 to 3 times higher.

At this stage, because of the incompleteness of the data, we cannot definitively state that Chris’ argument that the death rate between 24^th of March and the 12^th of May was 4 to 5 times higher is correct, but his argument is convincing. If there is any uncertainty it may lie around variation in the criteria that is actually being used in different trusts to flag somebody as having a learning disability or being autistic. However, if we accept the figures as a reasonable estimation, then it appears that in the early stages of the pandemic, people with learning disabilities are significantly more likely to die of Covid-19 than others. But is there any way of looking at the data or information available that would give us an indication as to how and why this may be happening.

Deaths in Care

At the beginning of June, the CQC (CQC, 2020) published data on the number of deaths of people with learning disabilities, “some of whom may also be autistic” in care settings. From that data we know that between the 10^th of April and the 15^th of May – 206 people with learning disabilities died from confirmed or suspected Covid-19. The CQC does give us a breakdown of how many people with learning disabilities during the period died in residential homes (195) and how many died in community settings (184) but does not break this down to tell us the proportions who died from Covid-19. This is an important omission as it would provide us with an insight as to whether or not the type of setting in which somebody lives has made them more or less vulnerable to the virus.

If we look at the data in Graph 1 which shows the data that LeDeR (NHS (LeDeR), 2020) has provided we can see that the peak of this stage of the pandemic

corresponds with the week ending the 17^th of April, the same week in which the government first introduced testing for all people being discharged from hospitals to care homes and care home residents who were symptomatic (DoHSC, 2020), and three weeks after the introduction of the lockdown on March the 23^rd and over a month since the government had moved from a strategy of containment to delay.

A Changing Death Rate

By comparing the number of deaths of people with learning disabilities per week (NHS (LeDeR), 2020) to the total number of people who died from Covid-19 during the corresponding week (Graph 2), we can see that during the very early stages of the pandemic, the proportion of people with learning disabilities dying from Covid-19 expressed as a percentage of the total number of people dying was actually as high as 5.38%.

If we accept Chris Hatton’s argument (Hatton, 2020)  that hospitals are using GP registers to flag people as having a learning disability and nationally GP registers report 0.5% of the population as having a learning disability, then at the very beginning of the outbreak people with learning disabilities accounted for a hugely disproportionate number of deaths – almost 11 times the rate we would expected if people with learning disabilities were dying at the same rate as the general population.  By the time this phase of the pandemic peaked during the week ending April 17^th people with learning disabilities accounted for a little over 2% of the total number of people dying that week – so still indicating that people with learning disabilities were dying at four times the rate we would expect. During May this rate would continue to drop reaching 0.55% of deaths by the week ending the 19^th of June. This would indicate that the things that were done or not done during the very early stages of this phase of the pandemic had a disproportionate effect on people with learning disabilities and that later interventions were less detrimental.

It is important to remember that during the early stage of the pandemic we are talking about “relatively” small numbers of people. Up to March the 20^th,  10 people with learning disabilities had died in England out of a total of 186. It is possible that this number of deaths could be linked to a single outbreak or region or a single policy action such as the release of people from hospitals into the care sector. At the moment we don’t know, this is however something that LeDeR and NHS England will know.

What we do know is that the first people with learning disabilities to die of Covid-19 will have been infected before the publication of the Imperial College modelling paper (Ferguson N, 2020)  suggesting that the continued implementation of milder mitigation strategies could lead to 250,000 deaths. So during the period when the government was pursuing that mitigation strategy; when it was not tracking and tracing effectively, not testing people who were being discharged from hospitals into the care sector and before the lockdown, people with learning disabilities were dying at a rate that far exceeded the rate that is now being achieved when these and other policies are at least partially in place.

There will undoubtedly be some within the government and the scientific community who will say that it is too early to make judgements about what might have been done differently, and that we need to wait for robust data, formal research and a public inquiry – and they should do all of those things – but they should also be mindful that winter is coming and with it the very real possibility of a second wave of infections. It is vital that the government, the NHS and the CQC are transparent about what has happened and that they work with people from across the community to identify what can be done to prevent yet more people with a learning disability, dying preventable deaths.

References

CQC. (2020, June 2nd ). CQC publishes data on deaths of people with a learning disability. Retrieved from https://www.cqc.org.uk/: https://www.cqc.org.uk/news/stories/cqc-publishes-data-deaths-people-learning-disability

Crammer, J. L. (1992 ). Extraordinary deaths of asylum inpatients during the 1914-1918 war. Medical History, 430-441.

DoHSC. (2020, April 15th ). Government to offer testing for “everyone who needs one” in social care settings. Retrieved from http://www.gov.uk: Government to offer testing for “everyone who needs one” in social care settings

Ferguson N, e. a. (2020, March 16). Report 9: Impact of non-pharmaceutical interventions (NPIs) to reduce COVID-19 mortality and healthcare demand. Retrieved from https://www.imperial.ac.uk/: https://www.imperial.ac.uk/media/imperial-college/medicine/sph/ide/gida-fellowships/Imperial-College-COVID19-NPI-modelling-16-03-2020.pdf

Hatton, C. (2020, July 2nd ). COVID-19 deaths of people with learning disabilities in England: a quick update. Retrieved from Chris Hatton’s Blog: https://chrishatton.blogspot.com/2020/07/covid-19-deaths-of-people-with-learning.html

Hatton, C. (2020, June 2nd ). What we know (so far) about the deaths of people with learning disabilities in England during COVID-19. Retrieved from Chris Hatton’s Blog: https://chrishatton.blogspot.com/2020/06/what-we-know-so-far-about-deaths-of.html

NHS (LeDeR). (2020, July 9th). COVID-19 deaths of patients with a learning disability notified to LeDeR. Retrieved from https://www.england.nhs.uk/: https://www.england.nhs.uk/publication/covid-19-deaths-of-patients-with-a-learning-disability-notified-to-leder/

 

Context is everything

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• In this blog I argue that people’s ideas about what is right and wrong is affected by their situation;
• I use a Twitter conversation involving Simone Aspis, Chris Hatton and others to show how this sometimes happens;
• I then talk about why I think that Simone makes some important points and is entitled to say what she thinks;
• I also say why I think that Chris Hatton’s work on social media has been very important for people with learning disabilities and for universities;
• In the second part of the blog I argue that social media plays an important role in our society and that researchers like Chris have been very good at using it to share their understanding and knowledge;
• But in my opinion researchers who use social media well, have not been supported by their universities;
• I then make some suggestions about the ways that universities could support researchers who are active on social media;
• I finish by suggesting that we should try harder to be kind to each other.

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Context is everything.

I was reminded of this a while ago in a tweet that the self-advocate Simone Aspis had written about academics who write about the lives of people with learning disabilities – I can’t remember the exact wording but the gist of it was that if you write about people with learning disabilities you should always publish an easy read version of your article. It’s a fair point and something that few people who write about the lives and rights of people with learning disabilities actually do and I would very much include myself in that. But like I said context is everything.

In the Twitter conversation in which the point was made the academic in question was Chris Hatton, who I’ve worked with on a couple of projects. Chris had just published a timely blog and analysis about the impact of Covid-19 on people with learning disabilities, and Simone was challenging him on his failure to publish an accessible version of the article, after having challenged him a number of times in previous weeks. Since then Chris has made the decision to leave Twitter.

I don’t know and I’m not really interested in the question of whether or not Simone or anybody else played a role in Chris’ decision to leave Twitter. Simone is one of the country’s leading self-advocates she is entitled to her opinion. But news in the Health Service Journal yesterday that NHS England and NHS Improvement are recruiting people to investigate the disproportionate number of deaths of people with learning disabilities during the Covid-19 pandemic – a month after they had denied the increase in their response to the blog post from Chris Hatton that Simone had complained about – made it clear to me just what a loss Chris’ withdrawal from Twitter actually represents. In my opinion a loss not just for people with learning disabilities and autistic people and their families but also for the credibility of research across the country.

For some of us, especially those of us who retain some commitment to the aspirations of The Enlightenment, one of the principal reasons for doing social research is to try and make the world in which we live a better place, and a key means of doing that is influencing government policy. But social media has changed the way in which government policies are developed. The days of policy being the product of a decade or more’s research and evidence-based practice, are long gone. Policy is increasingly being developed in response to the news and social media agendas and the problem with a lot of academic social research – is the difficulty that universities have in being able to produce knowledge and insight at the time at which it is most likely to make a difference. Which in today’s politics is usually yesterday.

Chris Hatton is one of the few researchers who really knows how to use social media as a platform to deliver substantive knowledge and insight in a form that is likely to influence the news agenda and policy. But like most of the small number of researchers who are active in this way, I suspect that Chris and others like him do so without significant support from the academic institutions by which they are employed. Each working late into the night to produce some of the best and most timely social insight that we are likely to read. Social insight that isn’t funded by government or large institutions – but social insight that is rooted in the concerns and conversations of communities. The problem for people who work in this way is that it leaves them isolated and without support in dealing with the criticism that will inevitably come their way. Criticism that is the essence of social media and something that we all struggle with.

But imagine if it was different. Imagine a university that encouraged its researchers to engage in social media in a way that made their collective body of knowledge and expertise accessible beyond the boundaries of their institution. Such a university might have a very rapid peer review system that allowed their researchers to test their thoughts and ideas before publishing them in a blog. And if that university specialised in researching the views and experiences of people with learning disabilities they would, as a matter of course, have the capacity to produce easy read and accessible versions of articles and blogs produced by their researchers – who they would actively support to engage with social media. All of this would be done as a part of the university’s need to make itself meaningful not just to the governments and organisations that fund it but also the communities upon whose experiences it is ultimately so dependent.

Whether we like it or not social media will continue to transform the societies in which we live and if organisations want to remain relevant they will need to commit to social media in ways that are meaningful and authentic and supportive of their people who engage with it – as for the rest of us maybe we should just try a little harder to be kind – I know I should.