Infected Blood Inquiry: Welsh families react after 'disgusting' wait for justice

  • ITV Wales' health reporter Katie Fenton has the story.

Victims and loved ones of those who lost their lives because of the infected blood scandal have welcomed the publication of an inquiry report into what exactly happened, with many urging the UK Government to hurry up and process compensation for those affected.

An inquiry into the biggest treatment disaster in the NHS has concluded that the scandal “could largely have been avoided” and there was a “pervasive” cover-up to hide the truth.

Deliberate attempts were made to conceal the disaster, including evidence of Whitehall officials destroying documents, the Infected Blood Inquiry found.

Patients were knowingly exposed to unacceptable risks of infection, the probe found.The 2,527-page report documents a “catalogue of failures” which had “catastrophic” consequences, not only among people infected with contaminated blood and blood products, but also their loved ones.

More than 30,000 people were infected with deadly viruses while they were receiving NHS care between the 1970s and 1990s, in a disaster described by inquiry chairman Sir Brian Langstaff as a “calamity”.

Sir Brian said “the scale of what happened is horrifying”, with more than 3,000 people dead as a result and survivors battling for decades to uncover the truth. Read more on the report findings here.

The report concluded that Wales and England failed to achieve “self-sufficiency” when it came to acquiring blood products, meaning it relied on other countries like the US. It said the UK should have achieved this.

  • 'I want to see recognition for everyone who has passed'

Kirk Ellis, who was born with haemophilia, received contaminated blood when he was 18 months old. He was diagnosed with hepatitis C aged 15.

Now 43, Kirk said: "It had a massive effect on my mental state. I went off the rails at 15 continuously for a good couple of years. I suppose I didn’t really settle down until I was around 30 because I didn’t think I could have a family.

"My attitude towards life was different to other people. I thought I might only have a year to 10 years to live.

"Seeing it in black and white gives us recognition. I want to see recognition for everyone who has passed."

  • 'I can be at peace'

The report references a baby who was treated with factor concentrates at the Cardiff Haemophilia Centre, University Hospital of Wales, in the "express knowledge that this carried the risk of transmitting hepatitis C and Aids".

That is what happened to Colin Smith, who was infected with hepatitis C and HIV as a baby before his death in 1990 aged seven years old.

Colin Smith died in 1990, five years after his parents were told he'd become infected with HIV. Credit: Family photo

Colin's parents, Janet and Colin, were both in London for the report's publication.

Mum Janet said: "I’ve had quite a few tears. I might not look it, but I’ve had Colin holding my hand, so I got through it.

"It is emotional but it’s been really lovely, actually. I didn’t realise there were so many people infected or affected and to see that hall completely full and all those candles, you know, it was beautiful. Sir Brian is an amazing man.

"I’ll be going to that cemetery tomorrow and I can tell Colin 'you’ve done it, darling'. I can be at peace. I can breathe a big sigh.”

Dad Colin said: "I think we pretty much got everything we’ve been saying for the last 35 years: what was done, what was hidden, what was ignored, I think it all came out today, so I think the government has a lot of answering to do.

"It’s not over yet. Most of us got what we wanted, justification we weren't delusional, we were right when we said people lied and destroyed evidence. Thousands of people died unnecessarily because the government acted slowly.”

  • 'It's bittersweet'

Sue Sparkes, whose husband Les died in 1990 after he contracted HIV and hepatitis C during treatment for haemophilia, said: “It’s a bit bittersweet because we have been fighting for so many years for this.

"The report is showing the government really badly. I know nobody will ever get time in prison but I’d love them to be stripped of their titles and all the money that they get given monthly, pensions, take them off them.

"Because they’ve done wrong and they know they’ve done wrong. They know they have, and even in the present day, the way the government has treated us is totally wrong."

Asked how her late husband Les would be feeling about the report's findings, Sue said: “I think Les would be over the moon.

"When he was told, he didn’t want anyone to know at all and we had to keep it quiet, and it’s only maybe the last six or seven years I’ve really been open about it.

"I was so proud of him and life has never, ever been the same since. When he was told, our lives were changed forever.

"Our two young children, they lost their dad when they were young… When my son got married, he wasn’t there, he didn't see my granddaughter being born… He’s missed out on all of that.

"It’s not fair, the children will hopefully be compensated. It’s not fair on all the children, the fatherless generation, a lot of them were really young when their fathers died.”

  • 'They need to pay compensation and stop making excuses'

Owain Harris, whose father Norman died aged 65 in 2012 after contracting HIV and hepatitis C from contaminated blood, said the details in the report were "overwhelming".

Father-of-two Norman, from Treorchy, was one of more than 3,000 victims to have died after receiving contaminated blood products from the 1970s to the early 1990s.

Norman Harris was given infected blood products while receiving treatment for haemophilia. Credit: Family photo

Son Owain said: "Saying sorry is a little bit too little too late, to be honest with you. They just need to pay compensation as soon as [possible] and stop making excuses. It is ridiculous they are still waiting to be compensated. Some of them have been campaigning for 40 years. It's disgusting.

"[My dad] was a campaigner himself so he would have not expected this day ever to come, I should imagine, because there were times where we didn't expect any of this to happen and there's been so much campaigning, the inquiry has been going on since 2017. I just think he'd be glad that people are talking about his story and other people's stories."

  • Contaminated blood distributed to Cardiff, Swansea and Carmarthen hospitals

The report also details how blood donations from a patient who had been admitted to hospital in Bournemouth with a "skin rash consistent with Kaposi’s sarcoma, leukopenia and anaemia" were used in a batch of Factor 8 which was distributed to Cardiff regional transfusion centre in 1984.

Four hundred vials were sent to Cardiff, from which they were also distributed in smaller quantities to Heath Park, Morriston and Carmarthen hospitals. The inquiry found this transmitted HIV to a number of patients in south Wales.

The inquiry found that not only were patients never informed of the risk of HIV and hepatitis C infection, but those who doctors suspected to have HIV were not told of this either.

  • Cardiff-based professor 'downplayed the risks of transmission'

One doctor who played an instrumental role in south Wales was Professor Arthur Bloom, a consultant who led Cardiff Haemophilia Centre at the time of the scandal. The centre was named after him following his death in 1992.

The report concluded that he "downplayed the risks of transmission despite knowing that one of his patients had Aids" in 1983, and despite press reporting concerns over a deadly disease.

Haemophilia treatment continued as normal, and patients continued to develop symptoms of Aids.

The report also said Professor Bloom “ought to have realised” that the developing number of Aids cases “were potentially only the top of a very much larger iceberg”.

It said: "If Professor Bloom had advised that there was a real risk that taking factor concentrates risked contracting Aids… events that followed might have taken a different turn."

  • 'This disaster was not an accident'

Chairman of the infected blood inquiry Sir Brian Langstaff, left, with victims and campaigners outside Central Hall in Westminster Credit: Jeff Moore/PA

Sir Brian said in a statement: “In families across the UK, people were treated by the NHS and over 30,000 were given infections which were life-shattering. Three thousand people have already died and that number is climbing week by week. Lives, dreams, friendships, families, finances were destroyed.

“This disaster was not an accident. The infections happened because those in authority – doctors, the blood services and successive governments – did not put patient safety first. The response of those in authority served to compound people’s suffering.

“The Government is right to accept that compensation must be paid. Now is the time for national recognition of this disaster and for proper compensation to all who have been wronged.”

The report highlighted how Wales was the first country anywhere to offer safe recombinant Factor 8 to all its patients, as opposed to the often contaminated plasma-derived Factor 8.

It recommends that the creation of a permanent memorial is considered in Wales, as well as the other UK nations.

  • Welsh Government reaction

Wales' health secretary Eluned Morgan said this was "the worst treatment scandal in the NHS" and while it pre-dates devolution, she wanted to apologise "to all those who were infected and have been affected by this terrible tragedy".

She said: "It is right that their voices have been heard and I hope that survivors and their families feel assured that the inquiry has taken account of their evidence and provided answers to their questions and concerns.

"The Welsh Government provided access to our records as part of the inquiry and current and former officials and ministers provided written and oral evidence as required."

Eluned Morgan said, while the scandal pre-dates devolution, she wanted to apologise "to all those who were infected" and affected by it. Credit: ITV Cymru Wales

She said the Welsh Government will consider the report and recommendations and it remains committed to working on a four-nations basis to respond to the recommendations, "with a view to achieving the best possible outcomes for beneficiaries and their families in Wales".

She added: "Welsh Government officials will work with the UK Government to ensure Welsh beneficiaries and their families are recompensed in keeping with the inquiry’s interim report on compensation.

"Our Wales Infected Blood Support Scheme (WIBSS) continues to provide support for known beneficiaries and their families. For people who believe they may have been infected before 1992, we have worked with the Welsh Blood Service to help answer any queries they may have.

"They can also access a home testing kit from the Public Health Wales website.

"I will provide further updates to the Senedd once we have had an opportunity to consider the inquiry’s recommendations."

  • ITV Wales' Alexandra Hartley looks back at how the UK's biggest ever inquiry came to be.

Key failures highlighted in the report include:

  • A failure to act over risks linked to contaminated blood – some of which were known before the NHS was established in 1948.

  • The slowness of the response to the scandal; for instance, it was apparent by mid-1982 that there was a risk that the cause of Aids could be transmitted by blood and blood products but the government failed to take steps to reduce that risk.

  • Tests on blood were not introduced as quickly as they could have been.

  • Patients and the wider public were given false reassurances.

  • There were delays informing people about their infections – sometimes for years – and they were told in “insensitive” and “inappropriate” ways.

  • Patients were “cruelly” told repeatedly that they had received the best treatment available.

  • People with bleeding disorders were treated without proper consent and research was carried out on them without their knowledge.

  • Children with bleeding disorders who attended Treloar College, where pupils with haemophilia were treated at an on-site NHS centre, were treated as “objects for research”. The report said these children were given “multiple, riskier” treatments. Other children with bleeding disorders were also given treatment “unnecessarily”.

  • Regulatory failures, including the licensing of dangerous products, and failure to remove them from the market when concerns were raised.

  • Instead of ensuring a sufficient supply of UK-made treatments for haemophilia, the NHS continued to import the blood clotting blood plasma treatment Factor VIII from the US – where manufacturers paid high-risk donors, including prison inmates and drug users. The UK blood services continued to collect blood donations from prisons until 1984.

  • In terms of blood transfusions, blood donors were not screened properly and there were delays in blood screening. Too many transfusions were given when they were not necessarily needed.

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