Every death counts

by George Julian

Every death counts

by George Julian
George Julian
Case Owner
We are crowdfunding to raise funds to challenge NHS England's decision not to publish data about the deaths of learning disabled and autistic people.
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George Julian
Case Owner
We are crowdfunding to raise funds to challenge NHS England's decision not to publish data about the deaths of learning disabled and autistic people.
Pledge now

This case is raising funds for its stretch target. Your pledge will be collected within the next 24-48 hours (and it only takes two minutes to pledge!)

Latest: June 9, 2020

Second letter before claim sent #EveryDeathCounts

We’re writing to let you know what has happened in recent weeks on the #EveryDeathCounts legal challenge. 


Thank you 

Again we wanted to start by saying a huge thank you to all of you w…

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'Any man's death diminishes me, because I am involved in mankind' John Dunne

All deaths matter. All deaths should be counted, because we all count #EveryDeathCounts.

We know that learning disabled people die decades prematurely in the UK, often due to poor health and social care, and difficulty accessing timely support and intervention1.

In 2018/19 at least 41% of people with a learning disability who died, died as a result of a respiratory condition. There is therefore, strong reason to suspect that people with a learning disability may be significantly impacted by the coronavirus pandemic2.

During this Covid19 global pandemic, clear and transparent reporting of deaths is as critical as ever. It is necessary to understand how the virus has spread, and also what measures need to be taken to protect people and mitigate against any increased risks for certain groups.

NHS England state: 'We are going to share LeDeR notification of death data with Public Health England (PHE) to help us better understand the impact of COVID-19 on people with a learning disability'3.

NHS England have access to data about the deaths of learning disabled and autistic people that is reported to them weekly, but they are refusing to publish it.

We consider this decision to be irrational and discriminatory (given this information has been published in relation to various other protected characteristics, such as age, sex and ethnicity).

How can you help?

We are crowdfunding to raise funds to cover the costs of taking legal advice, and if need be court proceedings to challenge NHS England's decision.

You can help in two ways:

1) Please donate if you can afford to, if 2000 people donated £1 we would be able to start to take advice and action. 

2) Please share this page with your friends, family, networks. If you think that #EveryDeathCounts please say so, spread the word on facebook, twitter or any other social media platforms.

Who we are:

We are four individuals who are acting as figure heads for a wider group of interested citizens who believe that every death matters and should be counted. We are Sara Ryan, Simone Aspis, George Julian and Mark Neary.

We are instructing Alex Rook of Rook, Irwin Sweeney LLP and Steve Broach of 39 Essex Chambers.

What has happened so far?

We announced that we intended to fundraise to take this action on Thursday 7 May on twitter. The next day Prof Stephen Powis answered, in response to a question from journalist Shaun Lintern, that NHS England would publish some data about the deaths of learning disabled and autistic people in acute hospitals, within a week4. 

So where does that leave us?

It's hard to tell but we are not happy with what has been announced so far. It appears that the promised data will only cover people who are admitted to hospital and die there. That suggests that it will not include the deaths of someone who dies in their own home, in a care home, in supported living or in an assessment and treatment unit. 

It is also unclear how, where and when data will be made available. Nor is it clear whether deaths in March and April will be reported. It seems that the deaths of learning disabled and autistic people are only being considered now, we are worried that the government's action is too little and too late. 

As this situation develops in real time, if we find ourselves in the position of not needing any or all of the funds raised, these will be used to fund other disability legal cases. Please do not donate unless you are happy with that.

Our initial target is £2,000 and this would enable us to send a letter before action to NHS England challenging their decision to not release figures relating to the deaths of learning disabled and autistic people immediately. We will also consider whether NHS England is in breach of its human rights obligations under the European Convention on Human Rights (ECHR) and the UN Convention on the Rights of Persons with Disabilities (UNCRPD).

If we do not raise our target we will receive no money, and no advice or action can be taken. If we raise £2,000 then we can set a stretch target to raise additional funds if a judicial review is required. 

Thank you for taking the time to read this. Please share far and wide and donate if you can #EveryDeathCounts

1. CIPOLD (2013) Confidential Inquiry into premature deaths of people with learning disabilities https://www.bristol.ac.uk/media-library/sites/cipold/migrated/documents/fullfinalreport.pdf

2. NHS England Guidance issued 24/3/20 Clinical guide for front line staff to support the management of patients with a learning disability, autism or both during the coronavirus pandemic – relevant to all clinical specialities https://www.england.nhs.uk/coronavirus/wp-content/uploads/sites/52/2020/03/C0031_Specialty-guide_LD-and-coronavirus-v1_-24-March.pdf

3. Learning Disabilities Mortality Review (LeDeR) programme update 6/5/20 https://www.england.nhs.uk/learning-disabilities/improving-health/mortality-review/leder/

4. Shaun Lintern's tweet with Stephen Powis' response to his question at the daily briefing 8 May https://twitter.com/ShaunLintern/status/1258801010451066880

Recent contributions

  • Roz pledged £10
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    On behalf of my autistic daughter. Like SUDEP, COVID 19, affects everybody yet a vulnerable group of people with learning disability and autism is invisible. It’s an outrage that needs exposing
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    I want to add to my original pledge to assist in this vital case on behalf of neglected people with learning difficulties and/or autism In life and in death.
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    #everydeathcounts this crisis has highlighted more than ever that people with learning difficulties, disabled people and those who are long term sick are seen as expendable. Now is the time that all of us have to stick together because every human life is important.

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Update 3

George Julian

June 9, 2020

Second letter before claim sent #EveryDeathCounts

We’re writing to let you know what has happened in recent weeks on the #EveryDeathCounts legal challenge. 


Thank you 

Again we wanted to start by saying a huge thank you to all of you who have donated to support the case and/or shared it with your friends and networks. We are not actively seeking to raise additional funds at this stage, but the campaign will remain open to donations for at least a further month. Any funds raised that end up not being required for this case will be used to fund other disability legal cases. 

 

What happened initially

Our legal team sent a pre-action protocol letter before claim to five defendants: NHS England, the Secretary of State fo Health and Social Care, NHS Digital, UK Statistics Authority and the Care Quality Commission. You can still read the letter here, it explained the detail to our case, a summary of facts/legal background and the grounds for claim and details of the action the defendants were expected to take. 

The first letter was sent on Monday 18 May and we asked defendants to reply in a week or so. 


What has happened since the last update

We have now received responses from all five defendants, and some additional (poor quality, incomplete and inadequate) data has been published. 

 

What data is now available 

When we first started crowdfunding for this case no data was published at all about the deaths of learning disabled and/or autistic people during the coronavirus pandemic. 

Since then the data available includes a weekly update from NHS England on the number of deaths of learning disabled people; an occasional publication of LEDER data reporting on the number of deaths reported to them; and a one off publication from CQC (helped by ONS) that showed a 134% in the death rate on the same period last year. 

The biggest issue with the data is its poor quality and it doesn’t tell us enough to be useful in understanding the impact of coronavirus on learning disabled and autistic people. To borrow a paragraph from a recent blog by Prof Chris Hatton (you can read the whole thing here):

'Information about the deaths of people with learning disabilities is collected differently, started at different times, is updated (or not) at different times, is reported differently, and involves different groups of people using different criteria for deciding whether a person has died of COVID-19 related causes or not. Because of all these differences I think we will never know accurately the number of people with learning disabilities who have died COVID-19 related deaths during the pandemic. While the figures collected will include autistic people with learning disabilities, I suspect we will continue to have virtually zero information about the deaths of autistic people without learning disabilities'.


The responses 

It seems that some defendants thought we would be satisfied, and even to some extent grateful, that they were doing ’something’, regardless of the quality or usefulness of what was published. 

A joint response was received from the Secretary of State for Health and Social Care, Public Health England, and the UK Statistics Authority

It listed various datasets that were now available and admitted: 

'Generally, across all datasets diagnosis of autism is poorly recorded. This is a pre-existing problem which we are working to address with pre-existing programmes of work…takes time and limits the information we have on the deaths of autistic people. We are looking hard at how we can get an accurate assessment of the impact of Covid-19 for this group of people. My clients are working with various partners to continue to enhance the robustness of the data, and to consider what further analysis of the existing data sets can be carried out'. 

An admission of poor quality data, poor record keeping, a lack of meaningful information, a pre-existing problem (one that is incidentally long known about and still not addressed). We have little confidence that the robustness of such poor quality data could be 'enhanced', certainly not to tell us anything meaningful. 

This response includes the obligatory telling off, and inference that we’re wasting time:  

'You will of course be aware that my clients are currently facing unprecedented demands in response to the Covid-19 pandemic... In the circumstances, my clients invite your clients to carefully consider the data that has been published, or is due to be published, as is set out above. If your clients still contend that my clients have acted in some way unlawfully, it would be helpful if you could identify in a further pre-action protocol letter how you believe this to be the case'.  

As far as we’re concerned this does two things; firstly, it strongly suggests that the lives and deaths of learning disabled and/or autistic people do not warrant the same care and attention as others; secondly, it buys the defendants more time to do nothing and it costs us more money to send a second letter. 

NHS England sent an ambivalent one page response in which they said: 'we are struggling to understand the extent to which your claim is still necessary, or at least not in the form it was originally drafted', claiming that the NHS England and LEDER data ’squarely relates to the essence of the claim’. They end with a similar 'we’ve more important work' to do statement:

'We do not seek to diminish the importance of the matters your claim has raised. However, NHSE’s resources are inevitably stretched as a result of the pandemic and so on that basis, we specifically invite you to clarify which, if any, allegations set out in your Pre-Action correspondence remain to be addressed'.  

 

CQC were the only defendant who engaged with the issues that we raised or provided an easy read version of the data they released. They sent a comprehensive response that detailed the additional analysis that they were conducting with ONS; they discussed their statutory requirements and the limitations of those (as they consider them); and they stated that for them: 

'to provide more accurate data on the number of deaths from specific groups of people, legislative change would be required, compelling registered providers to provide more specific data and/or to mandate the use of CQC’s notification forms and processes’. 

NHS Digital said they had nothing to add to the joint response from government and NHS England.


Where does that leave us?

We have had to do more leg work to demonstrate to the defendants why their responses are insufficient and highlight to them why the lives and deaths of learning disabled and/or autistic people matter and should be counted. 

Our legal team have prepared a second letter before claim. This one only runs to 19 pages! As before, we’d recommend grabbing a brew and having a read if you fancy it and have time.  An easy read version of the letter will follow shortly.

This second letter details our claim again, summarises responses received, summarises data published to date and the limitations within it, and details what data remains outstanding. The grounds of our challenge remain irrationality and discrimination.  

Irrationality due to the insufficiency of the data published and the fact that the Secretary of State and NHS England have overall responsibility for the health service and therefore can not conclude the current position of collecting and publishing data is reasonable and appropriate. 

Discrimination because we believe that NHS England have directly discriminated against learning disabled and autistic people in the mode of collection and publication of data concerning deaths from Covid19. 

Pubic Health England are engaged in direct discrimination as they are still gathering and publishing mortality data broken down by age, sex and ethnicity but this contains no information on learning disabled and/or autistic people. 

We also consider CQC’s failure to mandate the collection of data as to whether a deceased person was learning disabled, or to collect any data on whether they were autistic, and the related failure of ONS to publish such data, to be indirect discrimination and a breach of Article 14 of the ECHR.

The defendants were sent the second letter yesterday morning and we await their responses, again. The crowdfunding page will remain live for another 30 days and we will consider next steps once further responses are received.  

Thank you again for your continued support. 

Update 2

George Julian

May 21, 2020

Easy read summary of the case so far

Thank you for your ongoing support. Simone has produced this easy read update about the case 

Update 1

George Julian

May 19, 2020

Letter before claim sent #EveryDeathCounts

This is a short update to let you know where things are at on the #EveryDeathCounts challenge.


Thank you

We wanted to say a huge thank you to all of you who have donated to support this case and shared it with your friends and networks. We reached our initial funding target in a few hours, which enabled us to start taking legal advice, and we continue to raise stretch funding to cover the costs of what we anticipate to be a complex case. Any funds raised that are not required for this case will be used to fund other disability legal cases.


What we’ve done

Our legal team have prepared and sent a pre-action protocol letter before claim to five defendants: NHS England, the Secretary of State for Health and Social Care, NHS Digital, UK Statistics Authority and the Care Quality Commission. The letter was a result of hours of research and preparation and it runs to 24 pages. We have attached it here because we think it’s important that you are all kept abreast of developments. We suggest grabbing a brew and having a read when you have time. 

An image of the front page of a legal letter from Rook Irwin Sweeney

The letter explains the details of our case, a summary of facts and legal background, a summary of the grounds for claim and details of the action that the defendants are expected to take. The legal team and Simone are preparing a summary and easy read document that we will share as soon as it is available, if you would rather wait for that. 

The letter was sent to defendants yesterday with the request for a response by Friday 22 May, which reflects the urgency of the situation.


How the data landscape has changed in the last week

A data set was published on Thursday 14 May about the deaths of learning disabled and autistic people, see https://www.england.nhs.uk/statistics/statistical-work-areas/covid-19-daily-deaths/ tab ‘Covid19 All Deaths Condition 2’. Since publication this worksheet has been updated to state it will be updated weekly. This data appears to report the total number of deaths of learning disabled people from coronavirus, who died in an acute hospital. There are many limitations with this data, see this thread from Professor Chris Hatton for a helpful summary of those https://twitter.com/chrishattoncedr/status/1260967567155515398

Yesterday, Monday 18 May, there was a second data set published about the deaths of learning disabled people (with and without autism), see https://www.england.nhs.uk/publication/covid-19-deaths-of-patients-with-a-learning-disability-notified-to-leder/. This data appears to report notifications of deaths of learning disabled people to the LEDER programme. There are many limitations with this data, see this thread from Prof Hatton for another helpful summary https://twitter.com/chrishattoncedr/status/1262393384691523584.


Where that leaves us

In a nutshell we do not think anything has changed given how partial and insufficient this data is and the numerous limitations of it. After our letter was sent yesterday we received a response by email from NHS England a couple hours later. This response highlighted the latest data set published and suggested the key issues of our claim were addressed by it and our claim unnecessary. It ended:

'Given that the data disclosure appears to have resolved this matter I do not proposed to submit a detailed response to your lengthy letter.  No discourtesy is intended but I would wish to avoid wasting public funds and do not wish to distract my clients from addressing other Covid-19 related issues'. 

The discourtesy continues, and so does the case. Our legal team have responded explaining why we disagree and requesting a response in the timescales set out. 

If we do not receive adequate responses by Friday then we will be left with no option but to issue proceedings. We will of course keep you all updated. 

Thanks again for all the support and please continue to share the case far and wide. 

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