Hepatitis C sufferers tell how 'manky' blood devastated their lives

Published on Wednesday 8 September 2010 18:01

SCOTTISH patients infected with hepatitis C or HIV through blood products have revealed the devastating impact on their lives as the first stage of a major inquiry ended.

The victims, who received the contaminated blood or blood products in the 1970s and 1980, told of long delays in getting their diagnosis, the stigma associated with their infection and the terrible symptoms.

Their testimonies came as the Penrose Inquiry into the blood scandal published its preliminary report, setting out the evidence it had gathered so far.

The 600-page report, produced after the inquiry team analysed over 80,000 documents and took more than 100 witness statements, also sets out the next stages of the investigation.

This includes looking at the use of commercial blood products in Scotland and the information given to patients after their diagnosis.

Lord Penrose and his team will also look at the introduction of heat treatment to inactivate hepatitis C in blood products in Scotland in 1987 - two years after it was implemented in England and Wales. But campaigners yesterday called for the inquiry to go even further, to include other possible illnesses spread in blood.

Hundreds of people in Scotland - many with haemophilia as well as other patients - were infected after receiving contaminated blood.

As part of the Penrose Inquiry, patients were asked to come forward to reveal their own experiences. Many patients with haemophilia - which means their blood does not clot - spoke of the positive effects treatment with new blood factor products had had on their lives, with one describing it as a "miracle cure".

But the majority of witnesses said they were not warned about the risks linked to the treatment at a time when less was known about hepatitis C and HIV and testing of products not possible. Elsewhere in the report, witnesses voiced concern that they were not being informed when they were being tested for hepatitis C and HIV.

One witness said he was invited for a hepatitis C test in 1996, but found his own medical records suggested he had been diagnosed in 1992. He claimed he had not been told then.

Patients reported "horrendous" side-effects from treatment for hepatitis C, as well as the stigma associated with their diagnosis.

One patient had to move villages for a "fresh start" after parents stopped inviting their children to play. Others reported problems getting insurance and financial problems caused by not being able to work.

Bruce Norval, a trustee of the Haemophilia Society and a victim of contaminated blood, said the inquiry should be widened to look at what other contaminants victims could have been exposed to through clotting products.

"There was all kinds of crap in that stuff.This stuff was manky, it was filthy, it was dirty and they knew it, but they still stuck it in the arms of children," he said.

Solicitor Advocate Patrick McGuire, of Thompsons Solicitors, the recognised legal representative of families and sufferers, said the report was "a milestone" for families after their struggle for answers.

CASE STUDY

Philip Dolan is not sure when he was infected with hepatitis C during his treatment for haemophilia.

While he may have been diagnosed as early as 1978, he was not informed until 1991 when he asked a consultant.

The Haemophilia Society trustee from Glasgow said: "That is the same for a lot of people - they did not know until years later."

Mr Dolan said he had suffered fatigue due to his condition, while getting insurance was also a problem.