'Give us some peace of mind' - Welsh victims of infected blood scandal in renewed call for equal support across UK

Watch the full report by Richard Morgan

Despite his health problems, Kirk Ellis manages to be an active dad, finding plenty of time to play with his 4 year-old son Haydn.

But when he was a teenager, he was told he might only have a year to live.

A haemophiliac, as a baby he'd been treated with a product meant to improve his blood's clotting ability. Although years later, doctors told him the product had been infected with Hepatitis C, a potentially lethal disease.

He said: "Being told at 15 that you've got this virus that's inside you and that you could only be alive for a year, you feel 'well what have I got to live for?' So I didn't look after my physical health or my mental health. I self-destructed"

Against the odds, Kirk survived and went on to start his own family with partner Elizabeth.

But the Hepatitis left him with cirrhosis of the liver. 

The haemophilia - which he'd neglected during his younger years - means he needs operations on his joints, including a double hip replacement. 

He is now unable to work, and can't get life insurance, despite being just 39.

Kirk pictured as a teenager Credit: Handout

Despite the obstacles, he's determined to get a better deal for himself and his family, and for other victims of the infected blood scandal. 

He recently helped secure a change to the law which means infected blood survivors and their families can access legal aid.

Now, he wants the financial support packages across the four UK Nations to be "levelled up." 

At present, payouts vary from nation to nation.

"We've all got the same infections, we've all had the same mental and physical damage done to us. But we're all being treated unfairly" Kirk said.

"We'd just like the government to do what everyone has called for and level everyone up and give us a bit of peace of mind."

During the 1970s and 80s, 4,689 NHS patients were given Hepatitis C from infected blood products. 

The blood had been imported from the USA, where donors had included prisoners and drug addicts.  

Over 1,000 patients developed HIV, then an untreatable disease. Thousands more were infected with Hepatitis from blood transfusions. Since then, 3,000 people who were given infected products have died.

Sue Sparkes' husband Les, also a haemophiliac, was infected with HIV and died in 1990.

Because she lives in Wales, she's not entitled to any money from the support scheme - a contrast with Scotland, where widows and widowers receive a proportion of the payments made to their deceased partner.

Sue Sparkes' husband Les died in 1990 Credit: Handout

Sue said: "We really want the Welsh to support everyone like all the other nations, especially Scotland. Scotland has got a brilliant scheme and we would love to see that in Wales, because at the moment it's so hard to live."

"Our husbands couldn't get insurance or earn anything. We've been hung out to dry in Wales."

It's a view echoed by Lynne Kelly, Chair of Haemophilia Wales.

"Basically we're asking for a very straightforward approach. That the payments are levelled up as Sir Brian asked for in 2018. 

"And those payments must include payments to widows and widowers because there's existing support for widows and widowers under the Scottish scheme."

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) includes support for the bereaved. We are committed to ensuring all those affected by this terrible scandal have their voice heard at the Infected Blood Inquiry.”

A public inquiry - chaired by Sir Brian Langstaff - into how people came to receive infected blood donations, is due to make its recommendations next summer. 

It's thought compensation for victims could be one of the outcomes.

But the victims of the scandal say they shouldn't have to wait that long to receive proper parity of support across the UK.  

Kirk, Sue, and many others like them still face challenges every day because of what happened. 

They say the least they deserve is the same help as that enjoyed by counterparts elsewhere in the UK.