Edinburgh woman must live in darkness after receiving contaminated blood

Gill Fyffe before the transfusion; the author today; her autoimmune reaction to light. Picture: Neil Hanna
Gill Fyffe before the transfusion; the author today; her autoimmune reaction to light. Picture: Neil Hanna
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Evidence collated by an Edinburgh author who has to live in the dark after suffering a life-long sensitivity to light following treatment for hepatitis after an infected blood transfusion is being used as key information in a public inquiry into contaminated blood.

Gill Fyffe was 29 when she was given a contaminated blood transfusion at Ninewells Hospital in Dundee after the birth of her daughter, Lucy, in 1988.

It was not until seven years later that she was told she had hepatitis C, receiving a letter at home which informed her that she had received a contaminated transfusion. She subsequently underwent years of gruelling treatment which left her bedridden for long periods – and ultimately triggered an autoimmune response which now leaves her unable to spend any time in sun or electric light.

Fyffe, now 59, who was forced to give up her career as teacher Fettes College in Edinburgh as a result of the effect on her health, wrote a memoir, Lifeblood, which documents her personal experience and delves into the scandal which saw an estimated 30,000 people UK-wide given transfusions with infected blood, much of which had been taken from prisoners and used without proper screening.

Now the evidence she uncovered to write Lifeblood, which was published in 2015, is to be used by investigators working on a UK-wide public inquiry into the scandal.

During her research, she unearthed hundreds of newspaper articles, minutes of meetings, Hansard transcripts and reports from medical journals relating to the case, trawling through microfiche film in the British Library in London.

“Microfiche uses a very dim light in a dark room, so I was able to actually search for what I needed,” she said. “At the beginning, when I wrote Lifeblood, it was about the effect of a contaminated transfusion on one family, then my publisher pointed out that I needed to put it in context of what was happening and it eventually became the story of how a family has coped in the middle of this wider scandal.”

Fyffe, who will be interviewed for a personal statement to be used in the inquiry, says investigators recently spent eight hours at the basement home she shares with husband Stan – trawling through the four folders of documents – and have taken them away to use as key evidence in the inquiry.

It is estimated that about 3,000 Scots were infected with hepatitis C and HIV through NHS blood products in the 1970s through to the early 1990s.

Scotland has already held its own public inquiry into the tragedy, led by Lord Penrose, but this one, headed by Sir Brian Langstaff, includes victims from across the UK, will be more wide-ranging, taking into account the effect of the scandal on both those who are currently infected by blood-borne diseases and those who still suffer from their medical and financial consequences. The Scottish inquiry failed to make any recommendation of compensation for victims.

Previously, those infected with contaminated blood have been given two nominal payouts by the UK government, branded a “charitable donation”.

In contrast, the Irish government has paid out an average of £600,000 each to victims of the scandal, while in France, about 30 people, including blood centre officials, doctors and ministers, were prosecuted for criminal offences including negligence and deception.

Fyffe estimates that the financial impact on her family has been more than £1 million in lost salary and pension. “I am not a vengeful person, so I am not looking for anyone to be held to account, but we need to be compensated for the damage and as quickly as possible, she said.”

Some of those who were infected have not recovered from the disease, while more than 3,000 victims are known to have died as a consequence of their infection. A further 70 are known to have died in the past year alone.

She added: “I am very hopeful for this inquiry and am very impressed with the way they have handled it so far. The investigators are very switched on and understand the impact of what has happened to us all and the effect it has had.”

Daniel Carnell, spokesman for the inquiry, said: “I can confirm we are treating Gill and her family as significant witnesses. Our investigators will be taking witness statements from her in due course.

“The book itself won’t be used as evidence, but of course any background material or evidence that informed it might well do.”

It is expected that the public inquiry, which launches later this month, will take at least two years.

Lifeblood is available at amazon.co.uk for £12.99