Truth & justice for haemophiliacs: WhatDoTheyKnow and the contaminated blood scandal

Nothing gives us greater pleasure than to learn that one of our websites has been of help in uncovering an injustice or righting a wrong. So when WhatDoTheyKnow user Jason Evans mentioned how he’d been using the site in campaigning for victims of the contaminated blood scandal of the 1970s and 1980s, we were eager to hear the whole story — which he told us in fascinating detail.

Read on to find out how Jason learned the ropes of submitting an FOI request, and how one thing led to another… until he was looking at a group legal action against the government.

I’m Jason Evans, founder of Factor 8 – The Independent Haemophilia Group.

In short, I’ve spent the last few years trying to achieve truth and justice for haemophiliacs and their families affected by the contaminated blood scandal of the 1970s and 80s. My father, Jonathan Evans, was a victim of the scandal. It’s not my goal to go into the ins and outs of all that here, but instead to explain how WhatDoTheyKnow has been an essential tool for our campaign (if you wish to learn more about the scandal itself, you can visit our website).

It was early 2016 when I decided to start hunting down evidence relating to the contaminated blood scandal for myself. At this time there was already some evidence in the National Archives. It was a good start, but I felt there must be more. Government ministers were maintaining the same line in Parliament… that all the evidence had been transferred to the National Archive or it had been destroyed. This was widely accepted as true.

To this day I don’t exactly know why, but where many had accepted this situation (and understandably so), I simply refused to — or, at least, if it was true I was going to make sure of it.

After a quick search I found WhatDoTheyKnow. I instantly saw that this was going to be a must-have tool for what I wanted to do. I made my first FOI request on the site in April 2016, which in terms of the site’s functionality was super easy, but I definitely had a lot to learn.

In hindsight, my first FOI requests were badly framed, too broad and lacking in specifics: the vast majority were coming back as either “Information not held” or with any number of exemptions which was all very frustrating. It felt like I was getting nowhere.

Over time however, I began to refine my requests and learn best practice by reviewing the successful requests made by others, even those that had no connection at all with what I was doing. I read the Freedom of Information Act and familiarised myself with the exemptions, costs and what my rights were.

Things began to change: some of my requests were becoming partially or completely successful and all the while I was reviewing more evidence from the National Archives and other sources.

Things really began to snowball in 2017 when one day I began to cross-reference the government’s own filing system in my own spreadsheet. Noticing certain markings they had used allowed me to identify specifically what files were missing and FOI them using the government’s own internal reference system.

This strategy was almost flawless and has revealed tens of thousands of documents which have as yet never seen the light of day, and this work remains ongoing.

In May 2017 I brought a legal action against the government based on the evidence I had seen; shortly after this became a Group Legal Action which presently involves up to 1,000 claimants.

Just one week after the Group Litigation Order was lodged at the High Court in July 2017, the Prime Minister Theresa May announced that a full UK-wide public inquiry would be held into the contaminated blood scandal.

When I reflect back on that time, I don’t think there was any single person or action that got us there: it was a culmination of momentum. We always say “the stars aligned” when talking about it within the community and I think that’s pretty much what happened.

It would be nice to say that this was all some master plan but it wasn’t really; it was a venture taken out of a mixture of curiosity, determination and the simplest sense of wanting to find out the truth. WhatDoTheyKnow helped me to do just that, to get that bit closer to the truth.

In November 2017 Sky News ran an exclusive story regarding a Cabinet Office memo I unearthed, in no short part thanks to WhatDoTheyKnow.

The journey to that Cabinet Office memo began with this FOI request.

Eventually, the file I was requesting was made available in the National Archive as a result of that request. Upon checking the file in person there was a piece of paper inside with a note written in pencil saying that one of the memos had been removed, and it gave a reference number. I recorded this information, then FOI’d the Cabinet Office for it. They digitised the file and indeed it was there. Less than ten days after the FOI response we had the story on Sky News (and here’s a summary video).

I had help from a lot of people, in particular Des Collins and Danielle Holliday at Collins Solicitors, my friend Andrew March for his encouragement, assistance and ideas, as well as others who may not wish to be named.

I always remain aware that I’m doing the work others might have done, if it were not for the fact that they died far too young as a result of the scandal — or have been driven into secrecy for fear of the stigma associated with it.

The public inquiry is due to begin shortly and the legal case remain ongoing. I would like to thank WhatDoTheyKnow again for providing such an excellent platform with endless possibilities.

Thanks so much to Jason for sharing this remarkable story. We wish him the best of luck as the case progresses.

Image: Raw Pixel (Unsplash)


  1. Well I can tell you where Andrew March got many of his ideas from… the documents which I sourced over 3 decades and shared with him for his 2010 Judicial Review (won) in the High Court. March used my evidence, key documents minus referencing me. I spent months helping him and then he shafted me and took credit for my research. The same as you have done to me Jason. Still waiting for you to correct media where you pass off the documents from my 2006 award winning research as found by yourself in 2017. What you seem to always leave out is the fact that you would not have many of these documents to FOI if I hadn’t organised for their return via a solicitor after my dissertation was completed to be released on the DOH website then transferred to the National Archives, Kew. The documents in the National Archives give only a fraction of the picture of what was collected over many years and how much was deliberately blocked. The National Archives sources are limited and can never tell the full story. You brought a legal action in 2017 by stating my old evidence that was deliberately closed down for years was “new”. Some newspapers have now retracted the word “new” after being shown when the documents were first utilized and released into the public domain. If you had many documents of interest which you found, why did to need to keep using those I had already selected out of thousands sourced from my late husband’s legal files Garrot Allen, Galbraith, Joseph Smith docs, Oxford “cheaper than chimps” letter, Craske, Walford, Glasgow Symposium.. etc ?

    • Jason is a heavy user of our FOI service, and submitted this testimonial voluntarily. We are always glad to hear stories from those using our services for good, and have published his post in good faith with no further knowledge of any background details. Beyond any such issues, it appears that all involved with the contaminated blood scandal have one goal in common – to get to the truth – and our primary aim in publishing this testimonial is to highlight the use of FOI as a tool for righting social wrongs. Thank you for commenting and putting these points forward.

  2. Myfanwy, I understand your good intentions in highlighting this terrible scandal and appreciate that. However as a widow that lost 2 of my family to the Contaminated Blood scandal that wrote her dissertation in the months following my husband’s death, I have come to expect shocking behaviour from government but that it should come from within the haemophilia community has been most distressing to myself and other campaigners of 3 decades. The return of my research documents to the DOH and National Archives Kew is well documented in legal letters, Hansard and the media in 2007. This was done to help new campaigners like Jason but to take the work of others without referencing and pretending this is “new” as opposed to old evidence which was repeatedly blocked this delaying justice is totally unacceptable and infringes copyright. A distorted timeline of who knew what and when helps no-one and deceives the High Court!