Haemophilia campaigners lament Westminster approach to infected blood victims

Thousands of patients across the UK were infected with HIV and hepatitis C via contaminated blood products in the 1970s and 1980s.

About 2,400 people died in what has been labelled the worst treatment disaster in the history of the NHS – and is now the subject of the Infected Blood Inquiry.

When asked by inquiry counsel Sarah Fraser-Butlin why she thought their efforts had been resisted so far, Lynne Kelly of Haemophilia Wales said: “I think this deliberate attempt to cover up what happened.

“The Government doesn’t want to get to the truth.”

She explained how she was arguing for national policy in meetings of the Haemophilia Alliance, a UK-wide partnership.

However, there were no Welsh haemophilia doctors at the meetings, with those that were there saying “that isn’t really our problem”, contrary to the position of clinicians in Wales.

She told the inquiry: “My cousin had just died (in 2011), so obviously we’d lived through the experience of a family member dying.

“I felt that all the issues that I’d gathered from the patients in Wales regarding, obviously, lack of financial support, lack of provision for monitoring of hepatology, and there just wasn’t an appetite at those meetings for those issues to be covered.

“I went as a Welsh representative and my feeling was that they saw Wales as very much a side issue, and that was something that needed to be sorted out in Wales.

“There were people dying and they were trying to get to the meetings – they travel for miles and miles to get there expecting that there would be something done… minutes would never be circulated, we wouldn’t get an agenda, you’d be missed off the circulation list.

“I just felt that I was perceived as a bit of a troublemaker really because I go with my list of issues, I’d present on the issues that were affecting people in Wales, but basically they just move it on to the next item and say ‘oh well, that’s a Welsh problem’.

“I would say that Welsh Government had obviously been briefed by Westminster, so they didn’t feel there was any need for a public inquiry.”

Bill Wright, chairman of Haemophilia Scotland, was asked about the Penrose Inquiry – held north of the border and looking into Scottish infections which launched its final report in 2015.

Describing the situation, Mr Wright said it was “utterly exhausting”, adding: “That very much coloured our judgment when there were proposals coming about for this particular inquiry – and we learned so much from the Penrose Inquiry, not necessarily from its report.

“We weren’t actually funded to go and watch, we weren’t getting to see the inquiry on the web, we weren’t being funded to actually attend.

“The report was presented by the secretary to the inquiry … and there were people who’d come from Wales and England who hadn’t been core participants who were shouting ‘whitewash’.”

When asked if it started a different phase in Scotland, Mr Wright raised the response of then prime minister David Cameron who announced £25 million in funding and an apology – at the same time Mr Wright was speaking to the press in Edinburgh.

He said: “The prime minister was in London saying ‘I apologise’ – he didn’t actually explain what he was apologising for.

“He also said ‘well, here’s an extra 25 million’. This is the wrong way to do government. You have to engage with people.

“I asked questions ‘where does this figure come from? what’s it for? how’s it arrived at?’ – I never got an answer, no answer from the prime minister.

“I learned from a journalist that was at the press conference that day about all this when it was taking place hundreds of miles away – where’s the decency in all this?”

Haemophilia Northern Ireland’s Simon Hamilton is one of those who described the Penrose Inquiry as a “whitewash” and he wrote to Westminster MPs in the country to raise awareness of the issues.

He told the inquiry: “I would say haemophiliacs here have had less access to the political awareness and the political interaction that has taken place in Wales and in Scotland.

“People didn’t have a lot of hope. There’s a difference between hope and expectation, and hope and reality.

“Our Department of Health would have responded to the guide and direction from central government, from the Department of Health in England, so that was the process by and large.

“(The Penrose Inquiry) had not achieved the same, it had not served the people. It had not, perhaps it served government, but it didn’t serve anybody else.”

On the subject of Stormont and the collapse of the political situation in Northern Ireland, Mr Hamilton added: “We are not helped by keeping us in the dark over this period with many people became quite disillusioned, very distressed, despairing, losing confidence and faith in the system which is supposed to protect them.

“That’s not good for their mental health or anything else either, so there were negative impacts.”

When asked if financial recompense should be a devolved matter, all three representatives agreed – however Mr Wright added it should come with a qualification of “responsiveness and accountability”.

The inquiry before chairman Sir Brian Langstaff continues.