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A man who was gravely ill as a child after receiving contaminated blood has spoken up about how the scandal has affected his life.
Kirk Ellis, from Caerphilly, was born with haemophilia – a condition which affects the body’s ability to create blood clots; which is needed to help stop bleeding.
Mr Ellis, 39, received contaminated blood in 1983, when he was just 18 months old – contracting Hepatitis-C in the process – a virus which has caused Mr Ellis to suffer cirrhosis of the liver.
The contaminated blood scandal affected between 5,000 and 30,000 people in the 1970s and 1980s, and has been referred to as ‘the worst treatment disaster in NHS history’. Around 3,000 people died as a result.
When Mr Ellis was 12-years-old, his mother found out he had received contaminated blood as a baby. He then found out himself a few years later, aged 15 or 16.
“When I found out I went off the rails,” Mr Ellis admitted.
“I thought I had nothing to live for. I lost control.
“When I was 15 I was told I might only have a year to ten years to live.
“I was misbehaving, I was out drinking. I never saved money and I built up debt.
“It was only when my sister had her child I realised there was more to life than this and I started to settle down.”
He added: “I’ve not had a bad life but it hasn’t been easy. I allowed this to restrict me.
“I made my haemophilia worse. I didn’t trust doctors so I didn’t see them when I had bleeds. I did a lot of physical damage to myself by not looking after myself.”
But Mr Ellis has been able to turn his life around. Next year he is set to marry his partner, Elizabeth, who he has been with for nine years. Together, the couple have a four-year-old son.
He thanked Lynne Kelly, chair of Haemophilia Wales, for the support she has given him in recent years, and said he “would have been lost” without her support.
Recently, Mr Ellis won a landmark legal case forcing a government u-turn, meaning thousands of people affected by the contaminated blood scandal will be able to claim legal aid support.
He is now fighting for more support for people affected by the scandal in Wales.
While the victims have never formally been compensated, they have been receiving government support. However, the support took victims above the threshold to claim legal aid – but this has since been reversed thanks to Mr Ellis’ campaigning.
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Currently, Mr Ellis receives around £18,500 in support from Welsh Government each year.
But rates of support differ across the four nations of the UK and Mr Ellis is calling for parity in support across Wales, England, Scotland and Northern Ireland.
For example, in Scotland, widows and widowers of people affected by the scandal will receive long-term support, but this is not the case in Wales.
Mr Ellis said: “My partner wouldn’t get any payments after three years. I want widows included in the support because I want long-term support for my family in case something happens to me.”
He said this would give him “peace of mind” and explained he had been putting off getting a mortgage because he doesn’t want to risk leaving his family in debt if something happened to him.
He said the lower rates of support in Wales “makes me feel inadequate as a man to support my family”.
He added: “I feel that as health and support is devolved, Welsh Government has a moral and legal obligation to level up support with all the other schemes.”
Mr Ellis said he is in the process of issuing a judicial review against Welsh Government to call for more support for people in Wales who have been affected by the scandal.
A public inquiry into the scandal is set to make its recommendations next year.
A Welsh Government spokesperson said: “We continue to work with the other UK nations to achieve parity of support. We are waiting for a date for a meeting with the other Health Ministers in the UK to discuss these schemes.
“Our Wales Infected Blood Support Scheme (WIBSS) continues to support those infected and their families. We are committed to ensuring all those affected by this terrible scandal have their voice heard at the Infected Blood Inquiry.”
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