Today the Infected Blood Inquiry heard evidence from Lynne Kelly of Haemophilia Wales, Bill Wright of Haemophilia Scotland, and Simon Hamilton of Haemophilia Northern Ireland.
In commencing his evidence, Bill Wright, Chair of Haemophilia Scotland, said, “I cannot emphasise enough the importance of devolution in this whole story.”
Mr Wright went on to explain how the Scottish Health Minister Susan Deacon rejected claims for compensation in 2000 in a ‘patronising’ letter to campaigners. Documents presented by Counsel to the Inquiry revealed that she was prepared to take the issue to Court, despite acknowledging that it would look ‘unsympathetic’.
Mr Wright explained that the Scottish Parliament had been crucial to the Scottish victims and that any progress that was made in Scotland was due to the existence of the Scottish Parliament. He went on to describe how the Scottish Government commissioned the Ross report to look at financial support for victims of contaminated blood in 2003. A few months later the Skipton Fund was set up which did not take account of the findings of the Ross Report.
Mr Wright described how in 2007 the Scottish Health Minster Andy Kerr rejected calls for a public inquiry into contaminated blood. He said that such an inquiry would put major pressure on the blood transfusion service and would not add significantly to understanding of the issue.
When asked about the apology given by David Cameron and the announcement of £25 million for victims following the publication of the Penrose Report in 2015, Mr Wright described this as ‘a damned insult’, going onto say: “This is the wrong way to do Government. You have to engage with people, you don’t just throw money at people.”
Lynne Kelly, Chair of Haemophilia Wales, provided the Welsh perspective. She described how she joined the Haemophilia Alliance in 2011 but that the Department of Health officials and clinicians didn’t listen to patients concerns. At that time, interest in the infected blood community ‘petered out’. She described how the Department of Health wanted to sweep the whole infected blood cohort under the carpet.
Ms Kelly attended numerous meetings as a Welsh representative and her feeling was that they saw Wales as very much a side issue. She explained that all of the issues that she’d gathered from the patients in Wales regarding lack of financial support and lack of provision for monitoring of hepatology, and there just wasn’t an appetite at those meetings for those issues to be covered.
Ms Kelly described Haemophilia Wales’ campaign for a public inquiry which eventually, in 2017, resulted in a unanimous vote in the Welsh Assembly in favour of a public inquiry. Mrs Kelly described this as a real breakthrough.
In respect of the financial support schemes, Mrs Kelly described how Haemophilia Wales members didn’t want to get involved in tweaks to financial support. Rather, they wanted to get the truth and they wanted to know what had happened to their loved ones. They wanted justice and they wanted compensation.
She explained how Haemophilia Wales had opposed funds from the McFarlane Trust going to the Terence Higgins Trust as it was to be used for psychological support which was already in place in Wales. Mrs Kelly described this as yet another issue where in Wales they felt that their voices were not being heard.
Ms Kelly described her frustration when a review of services for people with bleeding disorders in Wales in 2011 showed that their top priority was access to consultant hepatology opinion, but when the funding announcement came, it was for psychological support. Mrs Kelly said it felt like an easy win for the Government.
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.”
Inquiry Counsel asked Simon Hamilton of Haemophilia Northern Ireland about his reaction to the Penrose Report in 2015. Mr Hamilton explained that he felt anger and that the inquiry had not served the people. Mr Hamilton described the Penrose Inquiry as a “whitewash”, and he wrote to Westminster MPs in the country to raise awareness of the issues. His view was that the Inquiry had perhaps served the Government but not anybody else. He described the feeling after Penrose that victims had just been beaten down.
He told the inquiry that victims in Northern Ireland have had less access to the political awareness and the political interaction that has taken place in Wales and in Scotland. Northern Ireland’s Department of Health would have responded to the guide and direction from central government, from the Department of Health in England and there was little distinct engagement with victims in Northern Ireland.
Mr Hamilton described the collapse of the Northern Ireland executive and the period between 2017 and 2020 where there was no Health Minster for Northern Ireland. He described that during this time people became disillusioned, distressed, despairing, loss confidence and faith in the system which was supposed to protect them.
All three witnesses made powerful closing statements. 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”.