Scapegoat


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.


 

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 11th of May. In particular Stephen Powis’ response to Shaun Lintern’s question made during the government press conference on May 8th

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 4th 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.

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


  • 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.

 

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.

Deaths per Thousand

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 30th 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 24th of March and the 12th 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 10th of April and the 15th 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

Graph1

corresponds with the week ending the 17th 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 23rd 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%.

Graph 2

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 17th 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 19th 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 20th,  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


  • 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.

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.

No More Heroes

I’ve lost count of the number of times that I’ve heard our politicians say that their decision-making during this pandemic is being led by the science. As if the decisions that they have made have somehow been inevitable and forced by the nature of the evidence to hand. That is of course rubbish.

All science has competing theories and explanations of phenomena and the natural sciences are no more immune to these debates than the social sciences. This is especially true where scientific knowledge is new and emerging and where the characteristics of something are still unclear. And when you have the kind of situation that we have now, one that requires the bringing together of the natural and the social sciences then the potential for scientific debate and disagreement is enormous, as is the potential for harm.

Today some of us will have stood for a moment to honour the ordinary people who have died doing their jobs during the pandemic. Some of those people will have worked for the NHS, others will have worked in care, or driven buses, or shops or one the many other jobs that we have now come to realise are essential to the proper functioning of our everyday lives and well-being. Many of yesterdays unskilled workers are now angels and heroes, people whose jobs have been made so much more perilous by the actions and failings of others.

Some of those failings were illustrated last night in the BBC Panorama Documentary “Is the Government Failing the NHS?”. The programme raises questions about the range of ways in which the government appears to have failed to protect people working in the NHS – principally as a result of it’s failure to ensure that frontline workers have the equipment that they need in-order to protect them from the virus.

To draw on the wartime analogies that the government seems so fond of. The current situation feels a lot like one of those instances where our troops have been ordered into battle, ill-equipped to take on the enemy that they face. Yet somehow, as has often been the case, our troops manage to achieve some kind of pyrrhic victory or glorious defeat through enormous personal sacrifice.  Except now if you believe our politicians, our heroes aren’t being ordered out of the trenches by generals, they are being led by the science.

Which is disingenuous because there is no single scientific solution to the threat that Coronavirus poses. It is politicians who make decisions about which strategies to deploy and how to use the resources that we have at our disposal. You only have to look at the variation in death rates per million population across the world to see the extent to which political and scientific choices can and will kill people.

By the time that this is over it is likely that thousands of ordinary people will have died doing their jobs so that we can stay well, and as is so often the case the politicians and scientists who could have prevented many of their deaths will wrap themselves in the sacrifice and dedication of others and call them heroes.

The Right to Life

Thoughts on the implications of the UK government’s Coronavirus policies for autistic people and people with learning disabilities.

Like a lot of people, I’ve watched the emergence of the Coronavirus with a growing sense of horror. At first, I distracted myself with the knowledge that every year hundreds of thousands of people die from complications brought about by the flu. But it soon became clear that this disease is different – it kills with far greater efficiency – probably at least ten times more efficiently.

But what are the implications of this pandemic for disabled people and their family carers, in particular for autistic people and people with learning disabilities? Initial signs are worrying. The fact that Italian doctors have been making decisions about who gets to live and who gets to die has historically been the stuff of nightmares for disabled people. A history that is full of examples of how disabled people and people with mental health challenges have been triaged out of their right to life. Too often seen as an ineffective, less than optimal use of resources in times of crisis, and too often neglected out of existence.

These are of course unprecedented times. If we cannot curb the spread of the virus for long enough, in order to be able to develop effective treatments and a vaccine, the impact on our society will be drastic. The modelling of public policy interventions outlined by Imperial College London indicates that the potential impact of Covid19 could be devastating. From 500,000 dead in the case of the government taking no action to suppress the disease, through 250,000 dead if the government had continued to implement its original policy; to something hopefully significantly less if we are able to suppress and spread the outbreak over time through widespread social distancing and quarantining. How successful we are likely to be in that attempt will become evident overtime, but international perceptions of the UK’s ability to suppress the virus are low and according to a graph shared yesterday by Ed Conway at Sky News, the current increases in the number of deaths appear to be tracking Italy.

SkyNewsGraph-23-03-2020

In the face of the scale of this potential devastation, it will be all too easy for the rights and lives of disabled people to become an after-thought, not so much as an act of deliberate policy, rather more as one of omission and ultimately exhaustion.

At the moment it is unclear to what extent the government believes that it will be able to respond to the individual needs of disabled people who contract Coronavirus, and in particular autistic people and people with learning disabilities. What is clear, is that over the coming weeks the healthcare system will be at full stretch and worse, and often decisions about life and death will be made in moments by practitioners who will be working way beyond the limits of their capacity and endurance. It is therefore unsurprising that the government is attempting to use the Coronavirus Bill to reduce the administrative burden on frontline staff so that they can focus more of their resources on fighting the virus and keeping people well. What is less clear, is whether the proposed changes will deliver what the government is hoping for and perhaps more importantly exactly what form of care, the government has modelled for autistic people and people with learning disabilities who contract and become unwell with the Coronavirus given that according the Imperial College Study 30% who show symptoms.

So, what kind of care pathways can autistic people and people with learning disabilities expect if they contract the Coronavirus? The honest answer to this is that we don’t know. I’ve just done a search on the Coronavirus section of the NHS England website which produced no results. The Public Health England Website has a range of guidance some of which is partly relevant. For example, the Guidance on Care in residential homes which outlines steps for how a person can be isolated in the home. There is also guidance on what to do if somebody who is living in supported living contracts coronavirus which essentially boils down to the following –

If the individual receiving care and support has symptoms of COVID-19, risk to their health and wellbeing must be assessed and appropriate action taken.

The guidance from the voluntary sector isn’t much more helpful. Mencap’s website had a good easy read summary document of what coronavirus is and what people should do up to the point at which they think they might have caught it. At which point it is suggested that they browse the NHS 111 website. There is, however, no evidence anywhere of a specific care pathway adapted to the needs of autistic people and people with learning disabilities once they go into hospital.

As things stand, we don’t know if carers or parents would be expected, or allowed, to accompany people with learning disabilities onto isolation wards in general hospitals. If this is not possible and a person cannot be left alone, what happens then? The only possible clue that I’ve been able identify comes from Simon Stevens urgent next steps letter –

Mental Health, Learning Disability and Autism providers must plan for COVID19 patients at all inpatient settings. You need to identify areas where COVID19 patients requiring urgent admission could be most effectively isolated and cared for (for example single rooms, ensuite, or mental health wards on acute sites). Case by case reviews will be required where any patient is unable to follow advice on containment and isolation. Staff should undergo refresher training on physical health care, vital signs and the deteriorating patient, so they are clear about triggers for transfer to acute inpatient care if indicated.

And in addition to that, the Coronavirus Bill which seeks to suspend a number of Local Authority responsibilities under the Care Act and which amends sections of the Mental Health Act.

The section from the Simon Stevens letter would seem to indicate that inpatient hospitals are likely to be the go to, treatment provider for autistic people and people with learning disabilities who need hospitalisation and who are unable to “follow advice on containment and isolation”. Which would tie in with proposed changes to the MHA Act which make it easier to detain people under the MHA and also make it easier to medicate people without their agreement.

In addition to this – according to an opinion piece published by Doughty Street Chambers:

Plainly the case for freeing up the time of health professionals including psychiatrists is unanswerable. The key changes are the loss of the requirement of the second medical recommendation in applications for detention; and the loss of the SOAD (second opinion appointed doctor – my parenthesis) requirement in the cases of those who did not consent or could not consent to treatment by medication after three months…

…The effect of dropping to 1 doctor will save significant person-power. There are 30,478 hospital admissions per year, an average of 2,540 detentions per month. Some MHA assessments do not result in a detention and there are no statistics on how many assessments result in a detention. This is a significant resource that could in the interim be deployed elsewhere.

If I am right and increased reliance on inpatient hospitals is what is being considered. And let’s be honest this is simply conjecture, but if I am right then it is probable that during the pandemic the number of people detained and treated under the MHA would increase significantly. In normal circumstances the idea of this happening and the idea of reducing the legal safeguards that protect people who are being detained under the MHA would be abhorrent. But in the circumstances that we are faced with, for some people, people who may struggle to cope alone with the trauma of an isolation ward, is there an alternative? But if this is what is happening the government and NHS England need to be upfront about it because laying the foundations and then springing it on people when they are unwell and in crisis would be beyond cruel.

But as I’ve said, this is just conjecture. At the moment, officially all we have is a vacuum. If the government wants autistic people and people with learning disabilities to survive this pandemic as well as any other community, it must ensure that it has a plan and it must ensure that people across the country are aware of what that plan is. Because if it doesn’t, autistic people and people with learning disabilities will once again be deprived of their rights – except this time it won’t be their freedom – it will be their right to life.

Big tech, Mikey’s “phone” and the question of control.

There have been a number of issues that have been bothering me for a while and they all share a common theme or issue – and that is the question of control. More specifically who should control access to an individual’s views and experiences. Of course, the obvious and instinctive answer is that nobody should, people should be able to share their views and experiences themselves. They should have control of their own voice regardless of whether they use words, images, sign or gestures to express that voice. But the reality for many people with learning disabilities and autistic people, is that their voice or access to their views and experiences is often controlled by others, in particular the institutions in which they live or in which they are detained. The implications of this control are enormous. It suppresses people’s freedom, their right to be consulted with and it makes them vulnerable to coercion and abuse.

This issue came to light in one form, in a discussion about media coverage on people with learning disabilities and autistic people who are detained in inpatient hospitals, where the disability rights activist Simone Aspis had challenged the fact that the journalist had not spoken directly to the individuals themselves, but had instead spoken to their families. Rightful Lives, and I suspect most people who are campaigning for the rights of people detained in inpatient hospitals, are simply grateful for the coverage. But the fact is, Simone has got a point. It shouldn’t always be families having to speak up for their loved ones who are detained in inpatient hospitals. There should be greater links between self-advocate led groups and people who are detained and why aren’t journalists able to talk directly to people who are detained in inpatient hospitals, if those individuals have the capacity to consent and make the decisions that need to made?

The problem of course is the question of control. People who are detained under the Mental Health Act are people who have had their human rights suspended. Almost every aspect of their lives are controlled by the judgements and decisions of clinicians. With that control comes the ability to isolate people from the community and with that isolation comes all kinds of abuse – some prescribed and legitimised as treatment – others the expression of a form of hate.

Control and social isolation in the name of treatment also means that the right to have casual conversations with the people that you know is removed, what remains are visiting times and periodic access to phones. Perhaps that is one of the reasons why people who are detained are so dependent upon the advocacy of their families – because often the only people they are entitled to talk to and have involved in the details of their care are their nearest relatives.

So, to answer the question why aren’t people able to speak up for themselves or share their stories and experiences with their peers, or god forbid speak directly to journalists? The answer is the system won’t let them and when I say system; what I mean are the support workers, the nurses, the psychologists and psychiatrists, the commissioners, the civil servants, the politicians and the voters and the laws and regulations and the institutions that we have put in place. So, when I say system, what I really mean is us.

Big Tech

One of the other things that has been bothering me is the lack of investment on the part of big tech companies ( yes Google, Microsoft, Apple, Facebook, that would be you) into technology that can and could help to transform the lives of people with learning disabilities. My annoyance was triggered by a debate around the possible use of cameras in inpatient hospitals. Well when I say possible it would appear that in some settings it is already happening. And just for the record my annoyance doesn’t lie with the people who are calling for cameras to be installed it lies with the fact that the big tech companies aren’t even a part of this debate and I’ll explain why I believe that’s the case.

Firstly, again, it’s about power and control. The problem with trying to prevent the abuse of people in institutions (large or small) by installing a network of CCTV cameras is that you are effectively increasing the power and control of the institution. And as always it is the person living in an institution that is most likely to be subject to the abuse of that power. My issue with introducing a camera first approach to monitoring what goes on in any kind of institution, is that it takes away yet more of a person’s rights. It’s a surveillance hammer to crack a nut. Not only have people lost the right to freedom of movement, the right to freedom of expression and the right not to be pinned down by six blokes, they have also lost the right to privacy. But people do have a right to expect to be protected and this where the tech industry is failing them.
Most people will have noticed the increasing number of stories about big data, artificial intelligence, The Internet of Things and the ability of the tech companies to develop data and information about what we are doing. Technology is embedded in our everyday lives and as a result of that, the tech industry possesses enormous amounts of data about what we do and when we do it. Now I’m not going to argue about the rights and wrongs of the growing levels of surveillance that we are all now subject to. What I am arguing is that with the Internet of Things, AI and Big Data the technology exists to monitor the actions, behaviour and presence of staff without compromising the privacy of the people who have been detained or who are living in an institution. How it would work is complicated but the tech companies, government and the CQC have what it takes to crack this particular nut – the question is – will they?

Mikey’s “Phone”

It’s easy to think that all of this is just about governments and institutions. That control and isolation is something that takes place somewhere else and that supporting people’s ability to share their stories and experiences is an issue for others but actually like most challenges, they almost always find expression in our everyday lives as much as they do elsewhere. We’ve had a similar challenge with Mikey, albeit on a small scale.

Mikey is very fond of his extended family but he can get distressed if he has to travel, especially if that travel disrupts his routines. The nett effect of this, is that maintaining contact with his “family community” can be tricky. Especially given that he refuses to speak to anybody on the phone and doesn’t really seem to want to get involved in Skype. Mainly I think, because these are things that he cannot control, these are things that are being demanded of him.

Despite this we bought Mikey a Facebook Portal for his birthday. And for those of you who don’t know, the Portal allows you to video call people at the press of a button. You don’t carry them about with you like a tablet or a phone. They sit in the same place in the room and if you want to speak to somebody you walk up to it, press a button and you can. They are incredibly accessible, and the hope was that if Mikey wanted to speak to somebody who wasn’t there at the time, he could.

Well it worked. If I’m out and I want to ask him, and not the person he is with how he is, he will answer his portal (which he has now renamed- “Mikey’s Phone”) and tell me. And if there is something important that he needs to talk to somebody about he will call them. It’s still early days and at the moment he has only added a very small number of people to his list of contacts. But he’s in control, so that’s the way it should be. A thought that takes me back to the beginning of this blog.

Sometimes relatively small technological changes can change a system. What if rather than installing cameras everywhere in inpatient hospitals, or in any kind of setting for that matter, which would increase the power of the institution. Or allowing people to film with mobile phones in hospitals, which may undermine the privacy of other people in the setting. Imagine if people had a Portal or something similar, securely incorporated as a fixture of their room, so that that they always have a window on their community regardless of where they are living. On that Portal there would be a list of contacts, of people that they trust. Some of those people might be family members or parents, others might be friends or peer advocates, some might even have a contact at the CQC that they talk to on a regular basis, and some might even talk to journalists. Most of the time it would be up to them. Maybe then, we could move the discussion away from who it is that should speaking-up for people who are detained in inpatient hospitals and let people speak for themselves. It would also provide an opportunity for people who don’t have family working on their behalf to be contacted by advocates, the CQC and the public sector bodies who commission their care.

For people who are detained under the Mental Health Act, all of this would of course require a shift in culture on the part of the institutions and that is likely to be the biggest challenge. The institution’s ability to isolate and control the individual would be undermined but so would be the person’s vulnerability to abuse. Especially if done in conjunction with the introduction of some of the other technologies that I mentioned earlier. I believe that current and emerging technologies can play an important role in supporting the voice of people with learning disabilities and in protecting them from harm in a way that also protects their human rights. The question is, will the tech companies play the role they should be playing and will our government, our professions and our institutions be up for it?

Reasonable, Rights and The Tate Attack

I was reminded yesterday that sometimes it’s the things and acts and opinions that appear most reasonable that have the greatest potential to do harm. In an opinion piece on Jonty Bravery, Libby Purves wrote an article in the Times entitled: “Tate attack shows community care is in crisis”. In the article Purves argues for the continued institutionalisation of people with the most complex needs:

Scandals such as Winterbourne View are not inevitable. There are some well run, humane residential institutions especially small ones linked to relevant charities…

She goes onto suggest that if Jonty Bravery had been in such a humane institution, he probably wouldn’t have been given permission to go out into the community unsupervised.

At a certain level Purves’ article seems reasonable, especially when compared with some of the other coverage that Bravery’s actions have given rise to, and especially when we consider the horrific nature of those actions. But the reality is that the institutions needed to protect the community from people who pose a threat to it already exist, as does the legal framework needed to ensure that those institutions are used. Government initiatives to reduce the number of people in inpatient hospitals following Winterbourne View, have always recognised that some people need to be detained and were never about releasing people who pose a threat to the community.

Something went badly wrong in this case and none of us, including people like myself who campaign for the right of autistic people and people with learning disabilities to be a part of their communities, are currently in a position to answer the questions that need to be asked. Those questions must be asked, and all concerned must be ready to hear and act on the answers.

But what people should resist is the temptation to use the actions of an individual in order to justify depriving a group of people of their right to a place in their community. Purves’ central argument that the “Tate attack shows community care is in crisis” is not justifiable. Nevertheless, it is likely to be taken up by those who are uncomfortable with the presence of people who are different in their communities. We can also expect government ministers and some psychiatrists to use it to justify their lack of progress on Transforming Care.

The act of depriving people of their rights simply because they are identifiable as a member of a given community, is the kind of act that has underpinned untold numbers of human rights abuses. Too often societies have implemented legislation and maintained regressive social practices on the back of arguments made in response to crimes and tragic events. Ways of doing things that at first glance may appear reasonable, but which over time come to be seen for what they are, an expression of fear and prejudice. Such actions never do justice to the victims of crime, but they invariably serve a political purpose.

So, if recent articles in the media are any indication, over the coming months we can expect to hear the government justifying its failures in relation to autistic people and people with learning disabilities with phrases like “complex needs” and “protecting the public”, When in reality the only thing they are protecting is themselves.

Diversity and respect – An idea for Isabelle

There’s been a lot of talk about voice recently; about the importance of enabling the perspectives of different sections of the community. There have been discussions about how the power of families stifles the voice of people with learning difficulties. There have been conversations about wanting to change the tone of the debate about inpatient hospitals and the rights of people with learning disabilities. And a while ago I was posed a really interesting question by Isabelle Garnett. Isabelle wanted to know if I could think of a single idea around which people campaigning for the rights of people with learning disabilities could unite. Something that is realistic and achievable. It’s a great question and I’ve been thinking about it on and off for a while now and I think I’ve found an answer.

On the surface there is no single idea. People face a multitude of challenges in trying to live a rightfull life, and there are thousands of ideas about how the struggle for those rights can be fought. But despite this, it is clear that there is so much that unites us all, whether we are people with learning disabilities, autistic people, family members or friends, practitioners, providers, academics and commissioners, ultimately we are campaigning for or struggling to deliver the same thing – the human rights of people with learning disabilities and autistic people. So perhaps there is an idea, or at least a couple of ideas that we can all unite around, and those ideas would be accepting that there is diversity in approach and priority – and respect for that diversity.

In support of this idea we’ve decided that it’s time for us to launch Myownfrontdoor.net as a platform and online magazine on which people can share their work and their campaigns. It will be set up as a Rightful Lives project and it will be for everybody, from self-advocates, to families and friends, to practitioners and the organisations they work for, to senior civil servants and politicians. Its contributors will steer its content and future direction and the guiding principles will be diversity and respect.

If you’d like to share your work or campaign and would like to contribute to Myownfrontdoor.net then email me on MarkBrown@rightfullives.net and I’ll set up a login for you, and help you to get started.

Rightfullives – Success and Failure

The thing about doing something that hasn’t been done before, is that getting it right, so often seems to go along with getting it wrong. No matter how well something is executed there is always something that you haven’t foreseen. A bump in the road, a glitch in the Matrix, something that stops you from succeeding in quite the way that you thought you would. In my mind Rightfullives was and is a success. It did something that hadn’t been done before and strangely, probably couldn’t have been done in any other way than the way that it was. Certainly not with the resources that we had at our disposal. But along with that success is failure.
I’ll be honest, I’m gutted that things have turned out the way that they have. I won’t bore you with the details of how many hours it took to build Rightfullives.net as it stands today. The time that went into building the site, the effort that went into networking and social media, the thought went into putting the individual exhibits together and the remarkable creativity of the people who shared their stories, their interests and sometimes their pain. It is a privilege to have been able to be a part of it and thank you to everybody who has been a part of the things that Rightfullives does so very well.
Over the last 24 hours a lot of people have shared their opinion about what went wrong and what we should have done differently. How we should have ignored the opinions of one of the country’s most experienced self-advocates; alternating in almost equal measure with opinions stating how much we should have listened to her. Personally, I’m not sure that either was really the cause of what went wrong. Neither do I think that the partial failure of Rightfullives was really about whether or not self-advocates are better at representing the views and interests of people with learning disabilities than families. My answer to that would be that it depends on the individual and that the best way to move forward, is together.
On reflection, I think that the mistake that had the largest role to play in the partial failure of Rightfullives, was one that we made right at the beginning, and when I say we, I definitely mean me. And that mistake was not realising that in the end Rightfullives always had to belong to the people who contributed to it. It doesn’t matter who built it or who was on “the steering group” or who did this or that for it. It doesn’t matter if they are self-advocates, parents or practitioners – Rightfullives is its contributors and in my opinion, it was not realising that sooner which has led to the problems we’ve encountered.
So armed with that knowledge, I’m going to start on the next project, which again I’ll build for free. It will probably have a different name, but it will be a child of the things that worked with Rightfullives. It will give the contributors more control over the posts they share and allow them to upload their own stories, interests and exhibits. It will be designed to be as accessible as I can possibly make it. It will have a protocol and structure that will allow it to balance risk and safety. It will allow providers, commissioners and researchers to reach out to the community of people who will be a part of it. Above all it will be a platform for people with learning disabilities and autistic people, it will be a platform for their families and for the practitioners and organisations who want to be a part of it – and together they will own it.
I’ll need lots of help.
But first of all, I’ll need to find to find a number of organisations and individuals who’ll help to fund the expenses.

Branding Hope

We were sent some images for a new post for the Rightfullives website a while ago and in addition to the images themselves, the organisation supporting the campaign that a group of individuals had set up, had sent in their own introductory text for the exhibit that explained the centrality of its own contribution to the whole venture. It’s a classic example of PR and branding in practice, they wanted to be sure that the good work that was being done was credited to their organisation. And I guess they were successful, because whilst I can remember the name of the organisation that funded the campaign, I can’t remember the name of the campaign itself. It’s an example of the way in which people’s voices can be obscured by the needs of large organisations. And whilst this particular instance of branding may have achieved its corporate objective, the failure to make the people themselves the dominant voice and message of the exhibit, is self-evidently counter-productive. It’s an example of failing to get the right balance and the importance of not forgetting what it’s all about.

I was reminded of aspects of this when I saw the news that the Equalities and Human Rights Commission and Mencap are going to be supporting Jeremy (Beth’s Dad) in taking legal action against St Andrews Hospital. On the one hand I thought great, this is exactly what Beth needs and on the other hand, I wondered if it had the whiff of a PR exercise on the part of the two organisations. Now you might say who cares? If it works for Beth, then that’s great. The two organisations are doing what they are supposed to be doing and they are funding the action, so they have every right to a little publicity on the back of it and that’s fine. The problem, as always, is a little more nuanced than that.

The difficulty with service providers being activists and campaigners is well recognised. Sure, Mencap have a pro-bono legal advice service that provides great support to families in high media profile cases and sure there is no theoretical reason why it shouldn’t be available to individuals and families who want to take Mencap to court, but I’d be amazed if it has ever happened and in practice it probably won’t. But by attaching themselves to the campaign of the indefatigable Jeremy and Bethany, Mencap will gain important PR in promoting the idea that all people with learning disabilities and their families will have access to good legal support should they need it. And just to be clear I’m not saying that Mencap shouldn’t be doing this, I’m saying (yet again) that they should separate their campaigning and support services from their provider services, so that if somebody using a Mencap supported living service wants to take them to court using their legal support service there is less likelihood of conflict of interest.

The situation with the Equalities and Human Rights Commission is different. Again, it’s great that the EHRC are supporting Jeremy and Beth, and that support will add significant weight to the campaign. There is also the hope that any legal action may establish a legal precedent and if that does happen then it will have been doubly worthwhile. The difficulty, if it exists, lies in the reasoning that underpins the EHRC’s involvement in Jeremy and Beth’s campaign.

A couple of months ago, Rightfullives and hundreds of individuals and dozens of organisations wrote to the EHRC inviting them to take action on the situation facing autistic people and people with learning difficulties who are trapped by the inpatient hospital system. The Commission replied on the 5th of November stating:

I have read your letter with care and concern and agree that it is entirely unacceptable that people who need care and support like Bethany, featured on the recent BBC Radio 4 File on Four programme, are treated in unsuitable and dangerous conditions. Recent coverage of deaths in ATUs has highlighted the grave breaches of human rights that can occur when people with learning disabilities and autism are held in these units.

As you know, we have recently held meetings with NGOs and lawyers and with individuals who have family members in inpatient units. We have listened carefully to their concerns and are now considering what action the Commission could take. The Commission has a range of potential enforcement powers and we will determine which would be most effective in tackling the human rights and equality issues that arise in light of the evidence that we have received so far. We are grateful for your letter and will take your suggestions into account in deciding the best way forward.

I will make sure you are kept informed about how we decide to move forward

As yet the EHRC haven’t committed themselves to making this issue one of their strategic priorities and we don’t know if the action that they are taking in support of Beth will end up becoming part of a strategy and a series of actions designed to confront this issue head on, or if it’s a single action that will have the dual purpose of, supporting Beth and Jeremy, whilst at the same time making it appear that the EHRC are doing their bit to support this community’s human rights by supporting an individual family.

The appeal of this latter approach and the temptation to use it is clear, by supporting a campaigner who is as effective as Jeremy, any organisation is likely to achieve maximum media impact with minimal input from themselves. And whilst none of this should matter to Beth and Jeremy, it will matter to the thousands of others who are currently struggling with the inequities of the current system of support, of which inpatient hospitals and the abuses that are inherent within them, are just a part.

So, if the EHRC are thinking of sitting back and letting everybody else do their work for them, then please don’t. The failure of Transforming Care and the ongoing human rights abuses of people who are detained in inpatient hospitals demands system wide change and system wide action. It demands that the EHRC does its job and that all of the organisations involved, take a long hard look at themselves. The ongoing abuse of people’s rights demands that every organisation involved in Transforming Care takes responsibility for the part they have played in the lack of progress and most importantly, that they do what it takes to put things right. Because no matter how much the different organisations might want to use individual stories to brand themselves as champions of hope, the truth of it is out there, in their collective failure to deliver meaningful change and the silent abuse of thousands.