From: TSS ()
Subject: Patients kept in dark on CJD risk, Blood donor died in disease cluster
Date: May 16, 2005 at 7:09 pm PST
Patients kept in dark on CJD risk
Blood donor died in disease cluster
BLOOD donated by a Yorkshire vCJD victim was given to patients who were not told of the risk to their health for seven years, it has emerged.
Matthew Parker died in 1997 at the age of 19 in Doncaster after contracting the illness, with his case attracting widespread publicity because he was part of a so-called cluster of three cases linked to the village of Armthorpe.
Before he was diagnosed, he had donated blood which was used to treat seven people. When it became clear he had contracted vCJD, medical authorities were told he had donated blood, but a deliberate decision was taken not to tell the patients.
Now his father, John Middleton, is demanding a public inquiry to determine why.
He told the medical authorities his son had donated blood at the time of his diagnosis but never made the fact public.
He has spoken out after discovering the deliberate decision was taken to avoid contacting those who had received his blood.
The patients would only have discovered the truth if they had attempted to give blood themselves. They would have been advised they were unsuitable but only told of their possible infection with vCJD if they specifically questioned the decision.
However, it is understood the health service overturned its policy last year following the death of a vCJD victim who may have been infected through a blood transfusion.
Those given blood sourced from Matthew, who was an unusual blood group, are believed to have been contacted privately and offered counselling.
Mr Middleton said: "As soon as I knew Matthew had vCJD I told them. The doctor seemed shocked and I gave them Matthew's donor card, which had a serial number on it which would have allowed them to trace the recipients.
"I left it in their hands, I couldn't tell them what to do, but I am shocked that they didn't contact the people involved.
"It is absolutely disgusting because I thought it had been my duty to report it for the sake of those people.
"Matthew had still been incubating the disease when he gave blood and my heart goes out to the people who were given it.
"I am not a scientist and I don't know what drugs might have been available.
"I think there should be an independent inquiry into what has happened. I would be happy to talk to anyone if there was an investigation," said Mr Middleton, who now lives in Cleethorpes.
The circumstances surrounding Matthew's blood throw open the debate on whether those affected by potential health problems should be told. It appears a new drug currently being tested on several vCJD patients including North Yorkshire teenager Holly Mills may be beneficial and Mr Middleton believes anyone potentially affected has the right to be told so they could explore possible treatments.
Mr Middleton spoke out about the situation as it was also revealed that the Armthorpe cluster could also have claimed the life of a fourth victim.
Matthew had grown up in Wickett Hern Road in Armthorpe, though he was living elsewhere at the time of his death.
Another resident of the same road, Sarah Roberts, 28, died three years after Matthew as a result of the same disease.
A third victim, Adrian Hodgekinson, lived in Harrogate but had been a regular weekend visitor to Armthorpe to see relatives for 14 years until 1986.
The information linking another victim to the district has been made available by the National vCJD Surveillance Unit in Edinburgh, which monitors the spread of the disease in this country.
Their records confirmed that four victims either lived in or had links with a five kilometre (three mile) area in Armthorpe.
Little information has been made available about the last victim, other than that she lived in Doncaster for a short period and had some connections with Armthorpe.
Although she is understood to have been in Lincolnshire at the time she died, she was registered to an Armthorpe GP for five years until 1993.
An inquiry was launched by health services into the Armthorpe cluster but failed to identify any direct links between the deaths.
No comment was available from the Department of Health about the situation last night.
16 May 2005
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