Infected blood scandal: How the victims and their lawyers are still seeking justice

When Des Collins and Dani Holliday of Watford-based Collins Solicitors went to the House of Commons for former Leigh MP Andy Burnham’s access to justice meeting on a cold day in January 2017, they did not expect it to result in them representing the largest group of core participants in the Infected Blood Inquiry.

The meeting was populated with various groups seeking public inquiries and investigations into scandals, with those affected by the Hillsborough disaster telling stories of how they successfully got a second inquest into the tragedy.

Here, the pair met Jason Evans, one of the most prominent campaigners of the infected blood scandal, in which more than 30,000 NHS patients were treated with contaminated blood products in the 1970s and 1980s. Thousands of people contracted HIV and hepatitis C through contaminated blood products and sometimes unknowingly infected partners. Many victims include haemophiliacs, and one particularly harrowing story saw at least 72 boys at Treloar College (a Hampshire boarding school that specialised in teaching haemophiliacs) die after staff treated pupils with contaminated blood.

Holliday tells The Lawyer: “Jason and another individual were telling their story about how the victims were still seeking redress, that there had been a cover-up and no justice had been done. We happened to get chatting outside and I gave him my card. I said, ‘If you think we can help, give us a ring’.”

Securing legal representation en masse was the next crucial step in a story that has already lasted for decades. It would see a group action launched, a public inquiry announced, and the fight for justice accelerate as campaigners battle tooth and nail for what they have suffered and continue to suffer. It is also a story that poses questions about the real challenges that vulnerable victims face when dealing with a complex and time-consuming legal system that only feels like it is working against them. This feeling is only exacerbated when the source of their pain is the same entity as the gatekeeper to their compensation: the UK Government.

Launching the group action

Evans, whose father was a haemophiliac, called the pair and told them his story. Collins says: “We get a lot of enquiries from people where their case might go nowhere. But Jason has a forensic mind. For every question I had, Jason had a piece of paper with the answer on it.” Holliday adds: “Jason was quite matter-of-fact and very much led by the evidence. He’s got a phenomenal amount from Freedom of Information requests and from trawling through the National Archives and then identifying what was missing from the archives.”

Evans told Holliday and Collins that other people within his campaign group had stories to tell. Within three weeks, at least 200 people had contacted Collins Solicitors, so they decided the best route would be to apply for a group litigation order (GLO). But there was one problem.

In the late 1980s, around 1,000 haemophiliacs and their families brought a group litigation known as the ‘HIV haemophiliac litigation.’ It claimed damages for personal injuries caused by the breach of statutory duty and negligence of the Department of Health and a further 222 defendants for treating them with a plasma drug called Factor VIII, which was imported from the US and contaminated with HIV.

The trial for the action was initially fixed for March 1991 for 26 weeks. For years, ministers, including Health Secretary Kenneth Clarke, insisted that the claimants had no case. In 1990, many claimants, represented in the action by 70 separate solicitors, were duped into signing away their legal rights and accepting settlements of as little as £20,000. The agreements said they could never cross the Government’s door again with any litigation. Victims who sought legal advice later were told it would be impossible to launch fresh proceedings under the settlements they had signed.

Holliday says: “However, we thought enough evidence was there and would subsequently come to light by using misfeasance in public office as a basis for overturning the settlements.” So, long after litigation had been considered an impossibility, Collins Solicitors applied for a GLO in July 2017, arguing that the undertaking agreed to by victims not to issue proceedings should be set aside on the basis that the Government had misrepresented the position.

Launching the judicial review

At the same time as Collins Solicitors was launching its GLO in the first half of 2017, a different kind of legal battle was being fought far to the West of Watford by Cardiff-based firm Watkins & Gunn. It would see a judicial review launched over the need for an inquiry into the scandal and the pressure the Government was facing continue to build.

In 2016, David Cameron announced a consultation for a revised benefits scheme for haemophiliacs. The organisation Haemophilia Wales asked the Welsh Government at the time whether the scheme applied to Wales, which confirmed it would. The organisation wanted further reassurance, so it sought legal advice.

Watkins & Gunn consultant and head of public and administrative law Michael Imperato tells The Lawyer: “They went to all the big firms in Cardiff and were shown the door because they all wanted money, at which point a barrister’s chambers in Cardiff sent them my way. I said, ‘What the Welsh Government are telling you is wrong. If this applied to Wales, all the consultation documentation would be bilingual for a start.’ It turned out I was right. We then talked about the scandal overall, and they said they had always wanted a public inquiry.”

Imperato told Haemophilia Wales that they should try to judicially review the government for not giving them a public inquiry: “We wrote a letter before action to the government asking them to give us reasons why there shouldn’t be a public inquiry. They wrote back and gave us reasons, to which we replied saying they were not valid reasons, and if they didn’t change their mind within two weeks, we would issue a judicial review.”

With the June 2017 general election ending in a hung parliament, Theresa May was facing attacks from all sides. With the Collins Solicitors’ GLO gaining traction after a BBC Panorama documentary, the threat of a judicial review from haemophiliacs in Wales, and May facing a possible defeat in a Commons vote on an emergency motion about the need for an inquiry – for once, the stars aligned for victims of the infected blood scandal. Hours before the potential defeat, the Government announced it would establish the Infected Blood Inquiry.

The Infected Blood Inquiry and compensation issues

The inquiry started collecting evidence in 2018, with former High Court judge Sir Brian Langstaff appointed chair. It was agreed between Collins Solicitors (which is also running a second group litigation against Treloar’s school on behalf of survivors) and the Government Legal Department that the GLO, which was successful in its application, would be put “on ice” until the inquiry’s final report. Compensation through the inquiry was favourable over litigation, and it was agreed that the GLO could disrupt the inquiry process.

Sean Brierley, who is a core participant in the inquiry and whose haemophiliac father passed away in 1991, tells The Lawyer: “When the inquiry was announced, there was a great deal of hope and expectation amongst the victims that we’d finally get to the truth. We were very, very lucky to get Sir Brian Langstaff, and he’s turned out to be very tenacious and driven towards getting the truth. But there’s been a big issue around the compensation.”

It has been estimated that victims are dying at a rate of one person every four days, which means getting compensation to people at speed is even more imperative. The Government commissioned Sir Robert Francis KC to conduct an independent report, and in the summer of 2022, the Government confirmed that about 4,000 surviving victims and bereaved widows would each receive interim compensation payments of £100,000. However, it was widely thought by those affected that this ignored other relatives, such as the children and parents of victims.

While Langstaff delayed the inquiry’s final report to this month, saying more time was needed to prepare “a report of this gravity,” he published recommendations for a full compensation scheme in April 2023, saying that the Government needed to set up a full compensation framework to include relatives by the year’s end.

Brierley continues: “Sir Brian delayed the report because he wants to do the proper process, which the campaigners appreciate. But he’s said that should not stop the Government from setting up compensation because the government has admitted liability.”

The government delays

The Government made no indication it would set up a body for compensation by year’s end as Langstaff had recommended, instead saying it intended to respond to his recommendations for compensation in full following the publication of the inquiry’s final report on 20 May.

Milners’ Ben Harrison, who represents 17 core participants in the inquiry including longstanding campaigner Carol Grayson, says: “For months there was no reaction to Sir Brian’s report whatsoever and as a result, the inquiry called hearings last July where they had half the Cabinet scrutinised. The party line at those hearings was that they couldn’t possibly implement a compensation framework without seeing the final report, which is absolute nonsense. Inquiry interim recommendations have been acted upon across a number of inquiries in the past.”

Imperato says: “There’s been enormous disappointment that Sir Brian’s report on compensation last year has been put on the back benches by the Government, it’s caused a lot of distress and anxiety amongst clients. They feel the Government is playing for time. Simon Hamilton, Chair of Haemophilia Northern Ireland, died just after Christmas, he will never see the light of compensation. It’s tragic.

“If they took Sir Brian’s advice last April, they could have been well underway by now. Setting up an organisation from scratch can take around four to five months. If it had started last summer, they’d now be in the position now where they’d have a full-time Chair who was properly appointed.”

Frustrated with the continued delay, campaigners worked hard to alert MPs, who instead sought to force the Government’s hand by making amendments to the Victims and Prisoners Bill. In December 2023, the Government lost the key vote on the amendments, the only vote it has lost since coming into power in 2016, and last week the Government made the key concession in the Lords, meaning the compensation scheme must be set up within three months of the law’s passing.

After the Government lost the vote in December 2023, it announced it would appoint an advisory group of clinical, legal and social care experts to advise the Cabinet Office on detailed technical considerations of responding to the inquiry’s recommendations on compensation. Browne Jacobson has since been awarded the contract to advise the group, and Professor Sir Jonathan Montgomery has been appointed chair.

Sources who spoke to The Lawyer highlighted that one of Langstaff’s recommendations was for a serving or former judge to chair the compensation system and pick who the people in the advisory group are.

Imperato adds: “The Government started setting this group up at the end of last year, and there was no kind of public appointment process. We still don’t really know what they’re supposed to do. They’re advising the Government, but are they the ones who will be setting the figures, entry points and parameters? If that’s the case, that’s a long way away from the framework Sir Brian had in mind.

“Sir Brian said that victims and their legal representatives should play a part and that it should be a collaborative process of setting all this up, and I can’t see that happening at all.”

There is also concern about how the appeals process might be handled after any compensation scheme is set up. Langstaff recommended that an independent tribunal be set up specifically to deal with infected blood compensation appeals if an individual wishes to appeal their award. Imperato explains: “But this isn’t going to happen. The Government says it will go to the First Tier Tribunal, which deals with all kinds of appeals and doesn’t normally deal with figures of this size, which will likely be in the region of half a million pounds or more.

“You’re going to have a victim who has got to go through that on their own without any legal help, as legal aid isn’t available for appearances at tribunals. So, you’ll have a vulnerable person arguing over hundreds of thousands of pounds in front of a Tribunal which has no specialisation of the issue, with no legal help.”

Another very real worry is that there could be disruption to the creation of the new compensation scheme if Parliament were dissolved or adjourned. Westminster is due to rise at the end of July for the summer recess, and it is widely expected that a general election will take place this autumn.

Harrison comments: “There’s a lot of press speculation that the scheme will be up and running by the end of the year. I think that rather depends on when the bill gets Royal Assent, and I can’t see that happening before June. With the possibility of an election, this could well go into next year. On the flip side of that, at least something is now happening.”

While litigation is always a last resort, how the Government has handled the compensation process has told us that a lot can happen between now and any full compensation package. Collins Solicitors may face challenges if their clients ever want to restart the GLO due to rules in the Inquiries Act. While any public documents can be used, plenty of documents given to an inquiry are never published. Collins says: “A lot of the disclosure we have as a result of representing core participants in the inquiry is held by us on a confidential basis. It would be to breach the confidentiality undertaking we’ve given to the inquiry to use it for the GLO. We’ve written to the inquiry and the Government Legal Department, and no one wants to address that problem.”

According to a lawyer who specialises in public inquiries, there could also be a potential conflict of interest as if they have individuals in the GLO who are not core participants in the inquiry, they could be holding information they can’t share with other clients.

Does the system need to change?

Last week, and with the inquiry’s final report looming, the Government confirmed further interim payments of £100,000 would also be paid to the “estates of the deceased infected people who were registered with existing or former support schemes”. At the weekend, it also announced a possible £10bn compensation packet, and that the full compensation scheme would be extended to bereaved children who have lost one or two parents.

Those infected and affected have been fighting for years, and challenges remain. But representing the victims has been an honour, says Holliday: “It’s genuinely a privilege to work with the clients we have. Some of the stories have been truly devastating, and some of the evidence we’ve heard has reduced us to tears. It will be good to bring people comfort and draw a line under it because it’s just been going on for so long.”

The hurdles victims have had to overcome could make anyone lose hope. Eversheds legal director Angharad Hurle, who represents 17 core participants in the inquiry including The Haemophilia Society, said: “It’s been over a year since the Chair recommended that a compensation scheme was set up correctly, and here we are 12 months later, and it’s still not actually been established. Until they actually receive any compensation, I think there’s always going to be an element of doubt and concern as against the backdrop of what these individuals have been through for so many decades, they’ve been promised things, they’ve been told things, and then things haven’t happened.

“But if there’s one thing I’ve learned about the people who have been infected and affected, it is that the hope that they have and the way they keep going is remarkable. They won’t give up.”

But the glaring point remains that if it were not down to the grit and determination of contaminated blood victims to use every weapon in their arsenal to force the government’s hand, they would never have even got to this point. Scandals have been on the news agenda in 2024, with the Post Office victims still fighting for compensation after decades of campaigning. Laws and processes are in place for a reason, but do those processes consider scandals of scale? Currently, it is down to the vulnerable victims of said scandals to persevere and to navigate a system where the odds are stacked against them.