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: 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 

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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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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