Every death counts
Every death counts
Latest: July 16, 2020
Every Death Counts - the final update
This judicial review has been quite a journey in a very short space of time. Here we summarise (in a necessarily lengthy fashion) what happened, including the timeline of events, pre-l…Read more
'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
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July 16, 2020
Every Death Counts - the final update
This judicial review has been quite a journey in a very short space of time. Here we summarise (in a necessarily lengthy fashion) what happened, including the timeline of events, pre-legal action taken, responses to this and the decisions made. We also reflect on the meaning of what unfolded and the events of the last ten weeks.
This summary was written by Mark Neary, Sara Ryan and George Julian. The fourth claimant, Simone Aspis, did not agree to its publication.
May 4. Discussions commence about the possibility of a judicial review.
NHSE state the stats about the deaths of learning disabled and/or autistic people during the pandemic will be published in the 2021 Leder annual report. https://twitter.com/Rebeccasmt/status/1257286826366316550?s=20
May 5. Mark Brown asks Sara Ryan, George Julian, Chris Hatton and Katherine Runswick Cole to come on board.
Harriet Harman writes to Matt Hancock demanding that figures are published.
Sara and George have a zoom meeting with Simone Aspis and discuss her, and/or other self advocates joining the action.
May 8. Stephen Powis, NHSE Medical Director, in response to a question from an HSJ journalist, announced at the daily press briefing that figures will be published in the next week. In an email exchange we agree to wait and see what is published.
The legal challenge is mentioned in the Independent https://www.independent.co.uk/news/health/coronavirus-mental-health-hospitals-deaths-cases-nhs-a9505066.html
May 9 Doubtful of the Powis promise we decide to plough on with preparations to launch the CrowdJustice page early the following week. We share our plans to take the case on social media, and invited people to share their photographs or art (with or without the statement ‘I Count’) to feature in a film on our CrowdJustice page. Over the course of the weekend we receive contributions from over 20 people which we edit into a short promotional film https://vimeo.com/417147010
Simone claims publicly that she has been excluded from joining. She was not and remains involved.
May 11. #EveryDeathCounts CrowdJustice page is launched with Mark Neary, Sara Ryan, George Julian and Simone Aspis acting as claimants. We reach our initial funding target of £2k in a couple of hours.
May 17. Given difficulties in establishing an effective working relationship between Mark, Sara and George (on one hand) and Simone (on the other) it is agreed that the two groups of claimants will not contact each other or make any public criticism of each other, the legal teams or the claim.
May 18. First letter before claim sent
NHSE published stats for the deaths of people reported to the Leder programme. https://www.england.nhs.uk/publication/covid-19-deaths-of-patients-with-a-learning-disability-notified-to-leder/ BBC Breakfast coverage.
May 19. NBC News COVID podcast. https://www.facebook.com/NBCNews/videos/721241661942950
June 2. Following analysis conducted between CQC and ONS, the CQC publish data showing a 134% increase in the number of death notifications relating to learning disabled people from last year for the period 10/4 – 15/5 https://www.cqc.org.uk/news/stories/cqc-publishes-data-deaths-people-learning-disability
CQC data and legal challenge discussed on RTNews by George https://twitter.com/RTUKnews/status/1267888713641558017 and Simone https://twitter.com/RTUKnews/status/1268123077558370311
June 8. Second letter before claim sent
June 9. #EveryDeathCounts update published. https://www.crowdjustice.com/case/every-death-counts/
June 11. Weekly NHSE data published. https://www.england.nhs.uk/publication/covid-19-deaths-of-patients-with-a-learning-disability-notified-to-leder/
July 2. Urgent reviews into deaths ordered by NHSE. https://www.hsj.co.uk/coronavirus/urgent-reviews-launched-by-nhse-as-death-rates-double/7027937.article
It is worth reading Chris Hatton’s various analyses of these datasets: https://chrishatton.blogspot.com/2020/07/covid-19-deaths-of-people-with-learning.html
3. Responses to the pre-action letters
Our claim focused on three points: irrationality; discrimination; Public Sector Equality Duty (see earlier update).
The responses were a mixed bag in terms of content, clarity, engagement and tone.
Overall, there was some acknowledgement that there are issues around data generation and reliability which explains in part why publication has been patchy, and also why legal action to require more robust data collection and analysis was required. The DHSC argued that publication of existing data at this stage would be misleading and instead, Public Health England would publish an analysis of data (NHSE, CQC and Leder stats) at the end of July (including easy read formats). Matt Hancock is apparently commissioning rapid research into the impact of COVID-19 on autistic people (precise scope of work to be confirmed).
Alongside this was a disclaimer that improvements are in hand but can’t be immediately resolved. For example, poor recording of whether or not patients are autistic is the subject of work between the DHSC and national autism charities. This work has been ongoing for a number of years and appears to us to lack any real urgency.
The UKSA are reliant on death certificate detail and these do not include information about people with learning disabilities and/or autism. Hancock has broad discretion around the collection and publication of data and he considers that the current situation is fine. He is not prepared to amend Death certification secondary legislation to enable more robust data collection, instead the reporting of deaths to Leder will be improved. It is worth noting that there is no requirement for deaths to be reported to Leder and its coverage is therefore partial.
The CQC shone among the responses demonstrating a commitment to capturing better quality data, making improvements in their notification processes and materials and adding a facility to record whether someone was autistic on death notification forms. The CQC were also the only respondent who appeared to wish to engage with the claimants, offering an invitation to the claimant team to work with the regulator as part of a stakeholder engagement exercise around this area.
A further gap in death notifications is that the CQC only receive statutory notifications from registered providers of regulated activities and so are not notified of deaths in supported living or in homes. While it could use a section of the Social Care Act to require providers to provide this info, it was argued that this would be a disproportionate use of power. The CQC said it has demonstrated its commitment to improve data collection and publication and provides easy read formats.
NHSE was hostile and defensive, as it had been in the original response. Leder is the place for comprehensive data retrieval despite the flaws inherent in this programme. While NHS based deaths relating to COVID-19 were shared with NHSE, this doesn’t extend to data sharing by social care providers. In a slippery sleight of hand NHSE flipped the discrimination claim by stating that the differential data availability in comparison to people with other protected characteristics wasn’t because of disability. NHSE point out that people with learning disabilities and/or autism were treated more favourably because there is no breakdown of data in relation to many other health conditions. It concluded:
- In conclusion, the proposed claim against NHSE is flawed and will fail. This is in the particular context of the specific legal powers and functions vested in NHSE and, in relation to the claim more generally, the work being undertaken by PHE which will address any alleged deficiencies in the completeness of the data set. In the event that a claim is issued, it will be robustly defended by NHSE.
- We will also seek to recover NHSE's full costs in accordance with the principle in R (on the application of Mount Cook Land Ltd) v Westminster City Council  EWCA Civ 1346.
4. Ongoing grounds for claims
Having considered the replies received with our legal team, we felt that we had the strongest grounds in relation to disability discrimination claims against Matt Hancock, NHSE and CQC.
Of particular relevance was the lack of breakdown in government reporting on deaths, to show the deaths of learning disabled and autistic people (despite breakdowns for other protected characteristics such as age, sex and ethnic group). This was the case in weekly Public Health England data reports and in ONS reports based on death certificates.
We have a long-held concern that the failure to mandate reporting of deaths of learning disabled people to Leder, undermines the value of the data, and indeed the entire Leder programme. If the Secretary of State genuinely cared about the premature deaths of learning disabled people it would be an obvious move to make reporting mandatory.
It seemed odd to us that Matt Hancock and NHSE both relied on the poor quality of the data that they currently collect, to justify why they were not acting in a discriminatory fashion. We felt that this required challenging, on legal and moral grounds.
In relation to CQC we felt that the fact they were choosing not to request information in relation to whether someone was learning disabled or autistic when collecting notifications of deaths, was discrimination. We understood they had no requirement to collect the information, but they choose to collect information in relation to other protected characteristics.
5. The Team
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.
6. Decision about next steps
There has been a slow drip feeding of data since we started on this journey. We are confident that this shift is, in part, an outcome of the strength of the response to #EveryDeathCounts and the media coverage published both alongside and as a direct outcome of the Judicial Review work (see timeline above). Since May 4 when NHSE announced it would not publish death figures until the 2021 Leder review, there has been a range of published datasets (of varying quality).
It transpires that when taking a Judicial Review, it is likely (unless you have shedloads of cash) that at least one claimant needs to be able to access Legal Aid. It was also necessary for one of the four claimants to be learning disabled if we wanted to make the discrimination arguments. Unable to meet these conditions, Mark, Sara and George were not comfortable seeking an additional claimant at this stage in the process purely to take advantage of their legal aid status to front the legal action (especially given the tensions between existing claimants and their experiences to date).
This has led to the three of us to decide to not take the action further.
7. What does any of this mean?
EveryDeathCounts: The argument that there has not been discrimination in the paucity of the data collected and published because it’s an outcome of inappropriate and insufficient processes is an own goal in our eyes. The various failings and limitations that contribute to the arguments made in the response letters are, arguably, an outcome of embedded discriminatory processes. Amending death certificate secondary legislation, for example, to allow the notification of learning disabled/and or autistic deaths was raised in the late 1990s. We know that people die prematurely outside of a pandemic and it is clear that learning disabled people are at a greater risk of death during one (https://chrishatton.blogspot.com/2020/06/).
Campaigning or Judicial Review?: We have been reflecting on this process which has been packed into a space of eight long weeks, supported by a remarkable response from the public in raising almost £8,500. Obviously, hindsight is a wonderful thing, but we’ve been reflecting on what would have been more effective: instigating the legal action as we did, or throwing our time and energy into a campaign, geared to provide the same outcome that we were seeking with the legal case. It is almost certain that the threat of legal action applied pressure to the defendants and helped moved things along much quicker than a campaign alone would likely have done. Additionally, at times, it felt that the challenges in internal working relationships and some public actions and comments, such as attacks on journalists and allies, were damaging the prospects of the case and would almost certainly have exhausted goodwill in a campaign.
There is more to either course than money, but it is apposite that pursuing the judicial review became financially unsustainable, certainly when faced with the threats of having to cover the defendants costs. Perhaps we were naive at the beginning and didn’t realise that our lack of eligibility for legal aid would restrict us as much as it did.
What the money was spent on: All of the money raised has gone to cover the costs of the legal team, who have still worked at greatly reduced costs and done significant amounts of work pro bono. This case has proved to be expensive, even before a claim was issued, given the number of defendants involved, and the fact that we had to write two letters before claim. We strongly suspect that this requirement for additional communication was not accidental on the behalf of the defendants, indeed it could be argued that it was tactical and enabled them to drain our limited funds, and stall for more time for them to cobble some sort of response together.
We wish to thank all of those who have shared information about #EveryDeathCounts on social media, who contributed their I Count photographs and art work, those who supported us financially, and of course our legal team of Alex Rook, Steve Broach and Alice Irving.
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.
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'.
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.
May 21, 2020
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.
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.
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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