THOUSANDS of lives “continue to be blighted” by the infected blood scandal, a charity has said, as victims and their loved ones spoke out about the lasting effects of the scandal.

Infected people and their relatives have described the long term health impact, the “survivor’s guilt”, and the grief of losing relatives.

Thousands of people were given contaminated blood or blood products between the 1970s and 1990s in what is known as one of the worst treatment disasters in the history of the NHS.

The official probe into the scandal, the Infected Blood Inquiry, is set to publish its final report on May 20.

The Haemophilia Society said that the publication of the report “marks a seismic moment in the long fight for truth and justice for people with haemophilia”.

Up to 6,000 people with haemophilia and other bleeding disorders were infected with hepatitis and 1,250 of these were co-infected with both hepatitis and HIV.

Of the group who were infected with both hepatitis C and HIV, only around 250 are still alive today.

The sister of a popular local radio DJ who died after receiving a contaminated blood product has described how she still misses her brother almost 30 years after his death.

Amanda Patton’s brother Simon Cummings was infected with HIV through his treatment for haemophilia and died in 1996, aged 38.

“There’s no doubt that the haemophilia did have a big impact on him… but it never stopped him,” Ms Patton told the PA news agency.

Mr Cummings was one of the original presenters at an independent radio station in Surrey and Hampshire called County Sound.

“He became a very well known local personality and was incredibly popular,” Ms Patton said.

“Simon was just an absolute natural on the radio and everybody adored him. He had a fantastic sense of humour. He was wonderful.”

During his time as a radio presenter Mr Cummings decided to create a charity single – Everybody’s Got A Crisis In Their Life – and got some famous names to contribute.

“It features Simon on lead vocals with Cliff Richard and Justin Hayward and Rick Wakeman, and all sorts of other people,” said Ms Patton.

“Simon knew Cliff reasonably well, well enough that they occasionally socialised together. I met Cliff at Simon’s house a couple of weeks before Simon died. I just happened to be there when Cliff came to see him.”

Mr Cummings died in December 1996.

Haemophilia is an inherited disorder where the blood does not clot properly. Most people with the condition have a shortage of the protein that enables human blood to clot, known as Factor VIII.

In the 1970s, a new treatment was developed to replace the missing clotting agent, which was made from donated human blood plasma.

Manufacturers made the product by pooling plasma from tens of thousands of people – increasing the risk of the product containing blood infected with viruses including hepatitis and HIV.

Many patients welcomed this new treatment, which could be delivered by injection at home, as prior to its introduction patients required transfusions with plasma which had to be given in hospital.

Kate Burt, chief executive of the Haemophilia Society, said: “Radical change must result from this inquiry if we are to learn the lessons of the past and protect future generations from harm.

“For the sake of the thousands of people who have died and those whose lives continue to be blighted by this terrible scandal, it is vital that the inquiry’s recommendations are acted upon.”

Speaking ahead of the inquiry, a Government spokesperson said: “This was an appalling tragedy that never should have happened.

“We are clear that justice needs to be done and swiftly, which is why have acted in amending the Victims and Prisoners Bill.

“In addition, we have included a statutory duty to provide additional interim payments to the estates of deceased infected people.

“We will continue to listen carefully to the community as we address this dreadful scandal.”