This is a very short blog post to introduce a very quick and dirty response to understanding what is happening in terms of the deaths of learning disabled people, in the UK, during the Covid19 pandemic. Yesterday I was involved in a twitter conversation that came about because Rebecca Thomas, a journalist with the HSJ had been told that NHS England do know the number of learning disabled people dying from Covid19, but they’ve declined to share this data:

@NHSEngland has confirmed they do track the pre-existing conditions of patients who've died from #Covid19 such as #learningdisabilities but have declined to share this data @mencap_charity @chrishattoncedr

— Rebecca Thomas (@Rebeccasmt) April 7, 2020

I have my suspicions about whether NHS England *actually* have the data available, I’m fairly confident that they could pull together a database of learning disabled people (as registered with GPs for annual health checks) and triangulate with other data etc, but I have little confidence that hospitals would routinely record this data, and/or that most learning disabled people would get admitted to hospital [these suspicions are formed from a number of years working in the field of deaths of learning disabled people and being constantly surprised at how little people know, and sometimes care, about learning disabled people].

Anyhow, I suggested that if NHSE wouldn’t share the data, perhaps we should collect it ourselves. Call it campaigning, call it activism, call it citizen journalism, call it desperation – whatever it is, I was prepared to try and ensure that the deaths of learning disabled people receive some attention in these times.

Maybe we could crowdsource a database of learning disabled people who die in this period – say all England wide deaths – and then ask about Covid as part of it? I'm not holding out for thorough and fearless coronial investigations, got to be honest.

— GeorgeJulian (@GeorgeJulian) April 8, 2020

I have created a dedicated email account, the address is LearningDisabilityCovid@gmail.com and a google form to collect information relating to anyone with a learning disability who has died in the UK since 1 March 2020. You can access or share the form here Learning Disability Deaths 1 March 2020 onwards. Please copy and paste the link and send it to anyone you know with a learning disabled relative or friend who has died during that period. In fact perhaps share it with anyone with a learning disabled relative if you think they’d like to know, or bookmark it yourself and only share if it proves to be relevant.

The form is hopefully self explanatory and straight forward.

Who is notifying?

It asks for the name and email address of the person notifying. This will allow me to get in touch if I have any queries, or if I think that someone might be duplicated in the data, if two people tell me about someone for example.

Background information about the person who has died

The form then asks for some background information about the person who has died. Such as their name (a pseudonym can be used if preferred – that’s a made up name for the person if people don’t want to use their actual name), whether they were male or female, when they died and how old they were when they died.

I also ask about where they died, where they usually lived (the first half of the postcode or a town/village name if easier), whether it was known or suspected that they had Covid19, and whether their death was referred to the local coroner.

What I’ll do with the information

The person completing the form is asked whether they agree to the information that they provide being shared publicly. I’ll create an online map showing where learning disabled people have died since 1 March 2020 (this is all deaths, not just deaths that we know or suspect are related to Covid19). The postcode/town data supplied will be used to indicate the area in which someone lived, if consent is given to do so. Hopefully people will be happy to share a photograph and the name of the person so we can get to see the faces behind the statistics.

There is the option to include a person’s name, age and photo, or any combination of that information on the map. Equally people are entitled to request that no personal information is shared about the death they are notifying, and in that case the information will only be included in aggregate data (where we lump all the available information together to share). I’m keen to get as complete a picture as possible of how many learning disabled people die at this time, and it’s important that people realise that consent to be included in the online memorial is by no means essential. Please share your information and decline if you do not wish for a person to be identified, that is fine.

Why should we share our information with you?

You should only do so if you, and the person’s next of kin, are happy to. The form asks for you to give your consent, and to indicate that next of kin are happy for you to share.

This is not an official exercise by any government body or organisation. It’s just me, George Julian, offering to collate this information and make the lives and deaths of learning disabled people visible.

I receive a proportion of my income from wonderful monthly crowdfunders to promote my work on open justice focused on the deaths of learning disabled people (this is what I got up to in 2018-19, I’ve yet to write up 2019-20). Right now a lot of inquests are in limbo so I am not due in court to live tweet so my time on this will either be volunteered to this project, or covered under that work. There is no conflict of interest from any external funder, I’m a free agent 100%.

That’s it, this will only work if people share the form far and wide and let people know that I’m interested. I am very happy to answer any questions about this. Either drop me a tweet or DM on twitter or an email on the dedicated address. Please feel free to share this post with your networks, by email, or on social media, any platforms you like. Thank you.