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…
…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.