When you’re battling serious illnesses, having a letter land through your letterbox telling you you’re also at risk of the human form of Mad Cow Disease is the last thing you need.
But this was the situation faced by thousands of patients, most of them haemophiliacs who were given contaminated blood clotting treatments by the NHS before 1999.
Thousands of haemophilia sufferers all over the world were infected with diseases including HIV, Aids and Hepatitis C from contaminated blood supplied by the US in the 1970s and 1980s.
But health officials in this country later discovered that some of the contaminated blood was traced to donors who had died from variant Creutzfeldt Jakob disease (vCJD), the incurable brain wasting disease linked to BSE infected beef.
It left thousands who had been treated with the infected blood at risk of developing the disease.
Liz Carroll, chief executive of The Haemophilia Society, explains: “In the 1970s and early 80s, lots of people - around 6,000 people in the UK - were given contaminated blood products through their NHS treatment with blood products that contained a variety of viruses.
“Almost everyone who received this contaminated blood received hepatitis C and a huge number got HIV and AIDS. There were also people infected with hepatitis A and B.
“A number of people have subsequently been told that they have received blood products from people who have since died of CJD so are at risk of developing it themselves.
“Of the 6,000 people in the UK given the contaminated blood, only around 1,000 are still alive.It is almost guaranteed that if you had treatment for haemophilia during this time, you would have had one or more of these infections.
“We are still fighting for recognition today in Parliament. There has been no major compensation. A lot of people are living on the breadline and their health is incredibly poor.”
The scandal arose when blood products to treat the disease were manufactured from donations from infected people living in the US.
In America, people are paid to donate. But it later emerged that drug addicts, drunks and prisoners had donated blood for money and it contained a variety of deadly viruses.
Liz adds: “For those who have been notified that they are at risk of CJD, it has a massive impact on their lives.
“It is written on their hospital notes and when they go to the dentist. For many of them, it is terrifying. It is like living with a ticking time bomb.”
Liz explained that those treated for haemophilia in the 1970s and 80s, were at greater risk from contaminated blood as a new treatment was developed which was concentrated clotting factor replacement.
This meant the clotting protein was extracted after combining lots of blood donations.
Each bottle of treatment could contain 10,000 to 40,000 different people’s blood donations and some patients were getting through three or four bottles of these treatments every other day.
A Department of Health spokesman said: “We have thorough safety procedures in place to protect patients and there hasn’t been any evidence of vCJD transmissions through blood since 1999.”
The department also stated that successive evidence based measures have been taken to reduce the potential for the transmission of vCJD and other infections, through blood and that the incidence of vCJD in the UK remains very low.
They stated there is no evidence of any person to person vCJD transmissions via surgery or dentistry.
They also revealed that the UK’s annual mortality rate per million for all forms of CJD taken over the period 1993 and 2012 was 1.1 - lower than France, Spain, Germany and Italy, but higher than Ireland, Iceland and Portugal.