On July 11th 2017, Prime Minister Theresa May announced a Public Inquiry into the contaminated blood scandal in the United Kingdom. Over 30 years since the disaster, an Inquiry which had been called for over a decade is finally taking place. This fact inevitably begs the question “Why now?”, especially after so many other countries around the world have seemingly dealt with the scandal already.
There’s no simple answer, but we at The Haemophilia Society see three primary factors: firstly, the political situation. All the leaders of the major opposition UK political parties put their names to a letter asking for a public inquiry. Secondly, Andy Burnham, now Mayor of Greater Manchester, stepped down as an MP in April 2017. During his last speech in Parliament, he stated that he had evidence of criminal conduct which he would pass to Police for investigation if an inquiry was not set up. Lastly, a group legal action had been taken out against government in relation to a 1991 court settlement. [JC1] That settlement stated that those infected with HIV would receive ex gratia payments from government, and in return had to sign a waiver stating they would take no further legal action against government. The waiver included action for Hepatitis infection, despite many of the affected not knowing their status at that time. These combined factors, along with all the campaigning that had been going on for years, finally tipped the balance.
Right off the bat there were issues. For example, the Inquiry was to be run by the Department of Health, a body central to the Inquiry itself. A meeting was held amongst campaign groups (including the Haemophilia Society), chaired by the Bishop of Liverpool, who wrote a letter on the group’s behalf to the Prime Minister stating that the Inquiry should be moved to another sponsoring Government Department. Eventually Government listened and the Inquiry was moved to the Cabinet Office.
Another issue The Haemophilia Society raised is that many are still not public about their diagnosis and so would need a mechanism by which their evidence could be taken without revealing their identity. The Inquiry team were very receptive to this and a process has been put in place to accommodate the infected and affected who fall into this category.
Additionally, the Society is extremely concerned about the psychological impact the Inquiry will have on its members and others. Many will be traumatised by the giving of evidence and retraumatised generally by the Inquiry at large. We know that since the announcement of the Inquiry and launch, another 80 people have died. Currently a telephone helpline is in place which only runs for 6 hours a week. We are continuing to campaign the government and Inquiry to address this concern.
A significant aspect of the Inquiry for us here at the Society is that some of our actions during the early 80s will also be investigated. Upon medical advice, the Society advised members to keep taking the Factor VIII products which were contaminated. The Society itself lost three out of six of its own Trustees during that time as a result of following that advice. The Society has apologised for the harm caused in consequence of that advice and has committed to submitting itself to scrutiny during this phase of the investigation.
Over the last six months, members of campaign groups including the Society have made applications for “Core Participant Status.”A Core Participant can be represented by a legal team during the Inquiry, allowing them the ability to put forward questions to be asked at the Inquiry and potentially ask questions themselves . It also means they will have access to much of the evidence disclosed to the Inquiry .Nearly 1,300 Core Participants have been appointed thus far.
In September 2018, the Inquiry formally began with 3 days of public hearings. The first day featured a moving commemoration service with music and testimonials from those who had lost loved ones over the years. The ensuing two days were for Core Participants to make opening statements, including government bodies who are to be investigated such as the Department of Health. The Inquiry will recommence its work at the end of April 2019 with personal testimony from the infected and affected.
The Inquiry received significant public attention at its launch, with print and broadcast media present for all 3 days conducting interviews with the infected and affected. The Society itself gave a dozen interviews on the first day alone, including being live on BBC news. We continue to receive much media attention and are working to keep the Inquiry at the top of the political agenda during the current Brexit process.
The Inquiry has seemingly made a strong start and many hold out hope that justice will finally be delivered. It is expected to last 3 years or more and there will be many more challenges along the way. The Society remains committed to serving its members and supporting them through this demanding time in our history.