New deal urged for UK blood scandal victims

• Infected patients' families need cash aid, says inquiry
• Ministers criticised for refusing to give evidence

The government will today come under pressure to forge a new compensation deal for thousands of people with haemophilia who were given blood tainted with HIV and hepatitis C, as a long-awaited report from an independent inquiry into the scandal is published.

More than a quarter of those infected as a result of blood transfusions have died in what Robert Winston described as "the worst treatment disaster in the history of the NHS". Many are terminally ill. The inquiry heard that widows and children have suffered as a result of a financial settlement that fails to meet their needs.

The report of the independent inquiry, set up two years ago by Lord Morris of Manchester and chaired by the former solicitor general Lord Archer, will be an exhaustive account of what went wrong in the 1970s and 1980s.



Haydn Lewis, infected with contaminated blood, tells his story Link to this audio
It will criticise organisations, rather than individuals, for mistakes and for acting too slowly to halt importations of infected blood from paid donors in the US, some of whom were drug addicts and prisoners with hepatitis C infection from needle use.

The inquiry heard evidence from Lord Owen, who called for Britain to become self-sufficient in blood while a minister in the 1970s and was dismayed by the lack of progress and also by the destruction of important documents after the scandal had become public.

It will demand action to prevent future blood scandals, raising the issue of variant CJD - the human form of mad cow disease. It is known that vCJD entered the blood supply through donations from people who did not know they were infected. Last week it was confirmed that one haemophiliac with vCJD from contaminated blood had died, although not from the disease.

Above all, the report will say that the government must now address the financial hardship of those with haemophilia and their families who have suffered as a result of tainted blood from the NHS. Compensation payments have been inadequate and some are living in poverty. People who became infected with hepatitis C, a potentially lethal liver virus, have been unable to get insurance except at prohibitive cost.

Campaigners welcomed the publication of the report, calling it the only real attempt to reveal the full scale of the tragedy. Chris James, chief executive of the Haemophilia Society, said: "Successive governments have shamefully refused to fund a public inquiry, and an independent inquiry held in public was the only way forward if the voices of those infected and the bereaved were ever to be heard. We are immensely grateful to Lord Archer and his inquiry team for their tireless endeavours to reveal the true depth of this disaster."

He called for the government to create a National Haemophilia Committee, a body that would help patients to participate in their treatment, and full healthcare provision for survivors in addition to insurance and compensation.

"There are vital lessons to be learned in ensuring that decisions are made in an open and transparent way that fully involves patients," he said.

About 4,800 haemophiliacs were infected with hepatitis C through blood transfusions in the late 1970s and early 1980s, and around 1,200 of those were also infected with HIV. Most of the latter - more than 800 - have died. At the time of the inquiry's launch, in February 2007, there had been 1,757 deaths. The numbers are steadily rising. Some of those who gave evidence have since died.

Carol Grayson, whose husband Peter Longstaff died after becoming infected with hepatitis C and HIV, hoped the report would provide closure for survivors. "It is going to be very emotional as there are lots of people who will not be there to hear the recommendations, but hopefully it will provide relief for some people who have campaigned for more than 20 years."

In spite of the scale of the tragedy, the government has consistently refused to hold its own public inquiry.

Today's report is expected to point to new evidence of what went wrong from thousands of documents that were eventually handed over by the government. It will also criticise ministers for refusing to give evidence. Those involved in the inquiry believe it will be hard for the government to dismiss its findings because it was set up and conducted by respected parliamentarians and is independent of vested interests.


New deal urged for blood scandal victims
• Infected patients' families need cash aid, says inquiry
• Ministers criticised for refusing to give evidence

The government will today come under pressure to forge a new compensation deal for thousands of people with haemophilia who were given blood tainted with HIV and hepatitis C, as a long-awaited report from an independent inquiry into the scandal is published.

More than a quarter of those infected as a result of blood transfusions have died in what Robert Winston described as "the worst treatment disaster in the history of the NHS". Many are terminally ill. The inquiry heard that widows and children have suffered as a result of a financial settlement that fails to meet their needs.

The report of the independent inquiry, set up two years ago by Lord Morris of Manchester and chaired by the former solicitor general Lord Archer, will be an exhaustive account of what went wrong in the 1970s and 1980s.



Haydn Lewis, infected with contaminated blood, tells his story Link to this audio
It will criticise organisations, rather than individuals, for mistakes and for acting too slowly to halt importations of infected blood from paid donors in the US, some of whom were drug addicts and prisoners with hepatitis C infection from needle use.

The inquiry heard evidence from Lord Owen, who called for Britain to become self-sufficient in blood while a minister in the 1970s and was dismayed by the lack of progress and also by the destruction of important documents after the scandal had become public.

It will demand action to prevent future blood scandals, raising the issue of variant CJD - the human form of mad cow disease. It is known that vCJD entered the blood supply through donations from people who did not know they were infected. Last week it was confirmed that one haemophiliac with vCJD from contaminated blood had died, although not from the disease.

Above all, the report will say that the government must now address the financial hardship of those with haemophilia and their families who have suffered as a result of tainted blood from the NHS. Compensation payments have been inadequate and some are living in poverty. People who became infected with hepatitis C, a potentially lethal liver virus, have been unable to get insurance except at prohibitive cost.

Campaigners welcomed the publication of the report, calling it the only real attempt to reveal the full scale of the tragedy. Chris James, chief executive of the Haemophilia Society, said: "Successive governments have shamefully refused to fund a public inquiry, and an independent inquiry held in public was the only way forward if the voices of those infected and the bereaved were ever to be heard. We are immensely grateful to Lord Archer and his inquiry team for their tireless endeavours to reveal the true depth of this disaster."

He called for the government to create a National Haemophilia Committee, a body that would help patients to participate in their treatment, and full healthcare provision for survivors in addition to insurance and compensation.

"There are vital lessons to be learned in ensuring that decisions are made in an open and transparent way that fully involves patients," he said.

About 4,800 haemophiliacs were infected with hepatitis C through blood transfusions in the late 1970s and early 1980s, and around 1,200 of those were also infected with HIV. Most of the latter - more than 800 - have died. At the time of the inquiry's launch, in February 2007, there had been 1,757 deaths. The numbers are steadily rising. Some of those who gave evidence have since died.

Carol Grayson, whose husband Peter Longstaff died after becoming infected with hepatitis C and HIV, hoped the report would provide closure for survivors. "It is going to be very emotional as there are lots of people who will not be there to hear the recommendations, but hopefully it will provide relief for some people who have campaigned for more than 20 years."

In spite of the scale of the tragedy, the government has consistently refused to hold its own public inquiry.

Today's report is expected to point to new evidence of what went wrong from thousands of documents that were eventually handed over by the government. It will also criticise ministers for refusing to give evidence. Those involved in the inquiry believe it will be hard for the government to dismiss its findings because it was set up and conducted by respected parliamentarians and is independent of vested interests.


http://www.guardian.co.uk/society/2009/feb/23/haemophilia-blood-hiv-hepatitis