Hospital records of patient with hepatitis ‘lost or destroyed’, inquiry hears
The loss or destruction of hospital records of a patient suspected of being infected with hepatitis C meant his compensation claim was rejected.
“Lost or destroyed” hospital records of a patient believed to have been infected with hepatitis C during an operation prevented him from receiving compensation, an inquiry has heard.
A groin injury, suffered while working as a logger in south-west Scotland, required surgery, during which the patient – known as Mr X – said he was given a blood transfusion.
Speaking under the condition of anonymity, the patient told the Infected Blood Inquiry that nurses joked with him after his operation in 1976 that he would be speaking with an American accent because the blood used for his transfusion came from America.
After being diagnosed with hepatitis C – which he said could only have come from that operation – he attempted to get his medical records from the Dumfries and Galloway Royal Infirmary, which, he said, told him could not find his details.
Despite support from a GP who backed up Mr X’s assertion that the infection must have come from a contaminated blood transfusion, his repeated attempts to get compensation from the Skipton Fund were rejected.
The fund, set up in the wake of the contaminated blood scandal, is supposed to provide non-discretionary, ex-gratia payments to those infected with hepatitis by NHS blood.
Mr X said that “the absence of medical records, where they are lost or destroyed”, along with a signed confirmation from a doctor that the infection was likely caused by medical procedures should automatically trigger the payment.
However, in practice, Mr X said: “It turns out that the Skipton Fund was a very discretionary fund, so it failed in its protocols, it failed in its set-up procedures and processes and failed miserably at being a non-discretionary fund.”
Mr X said he has given up on applying to The Skipton Fund. He said it had "failed miserably" in its remit to be an non-discretionary fund. He said a supporting letter from a medical professional should have been enough to trigger a payment. #InfectedBloodInquiry— The Haemophilia Society Public Inquiry Team (@HaemoSocUK_PI) July 10, 2019
He also said that he found “glaring” inaccuracies in his GP records that left him “flummoxed completely”, such as getting the number of children he has wrong, claiming his landlady was his partner and indicating he had taken drugs intravenously. He said these are false claims which he has had to fight to get corrected.
“I embarked on a personal crusade to right what I felt was wrongs,” he said, adding: “It was a dog’s breakfast in terms of factual accuracy.”
After three spells of treatment – one of which Mr X described as “like being napalmed from the inside out” – he was cured of the virus, although he was left with numerous health conditions including liver cirrhosis, heart problems and an enlarged spleen.
Concluding his evidence, Mr X called for treatment to “break the cycle” of hepatitis infection and said: “We have to look at serious elimination strategy of hepatitis C.
We have the expertise, we have the knowledge and we have the cure to actually eliminate hepatitis C from our midsts Mr X, Infected Blood Inquiry witness
“It’s within our grasp to do that – the Scottish Government in 2015 committed themselves to an elimination strategy and that seems to have lost its way.”
He added: “We have the expertise, we have the knowledge and we have the cure to actually eliminate hepatitis C from our midsts.”
Suggesting treating it the same “collective, immediate and sustained” way as foot and mouth was dealt with, he quipped: “I’m not saying we all get put on a big funeral pyre and burned, but we have got the ability to eliminate hepatitis C from our society.”
The inquiry also heard from the widow of a man who said his hepatitis C diagnosis and two failed spells of treatments caused him to spiral into alcoholism and his death at 45.
She described meeting “the love of my life” at the age of 14, marrying at 17, and going on to have two children together.
Her late husband had mild haemophilia – a condition impairing a person’s ability to form blood clots – and so occasionally needed treatment involving receiving transfusions.
She said that in 1995, the couple were ushered into a storeroom “the size of a tuppence” following what they thought was a routine blood test, to be told he had hepatitis C.
It later emerged that his hospital records from Glasgow’s Yorkhill site were also lost or destroyed.
Mrs Y also tearfully told the inquiry how her husband “became a different man” after his second attempt at treatment to cure the virus, and told his family that he did not want to burden them any more. He left their family home – which they lost due to debt – and became an alcoholic. She said this led to his death aged 45.
Following the evidence, inquiry chairman Sir Brian Langstaff said she had given “a powerful account of the destructive effects” hepatitis C and its treatment had physically, socially and financially on her family.
Another witness revealed to the inquiry she was given infected blood just 15 minutes after giving birth to her first child and ended up with hepatitis C.
Pauline Reid explained how there were “several years between being infected and being told” she had tested positive for hepatitis, a virus which triggered both physical and mental health problems.
She said in the maternity ward for the birth of her second child she “was treated like a leper” because of her condition.
“At that point, not knowing whether I had already infected my two children, I would have liked more children but I was very, very scared that a subsequent pregnancy could have led to the virus returning and staying,” she said.
Ms Reid said she was shocked to see some of her medical records just eight days before giving evidence, which she said made reference to “lengthy conversations that never happened” and tests she was not aware she had taken.
She added: “The records are completely factually incorrect.”
Pauline also recently got her notes from UKHCDO which she said were "completely factually inaccurate". She said there were no entries for the years - 1990 and 1994 - that her children were born. #InfectedBloodInquiry #Contaminatedblood— The Haemophilia Society Public Inquiry Team (@HaemoSocUK_PI) July 10, 2019
The day’s final witness, known as Mr Z, gave evidence about being infected with both HIV and hepatitis C during treatment for his severe haemophilia, which he was diagnosed with as an 11-month-old baby.
In his late teens, Mr Z was diagnosed with HIV, describing the news as “staggering”, but doctors failed to tell him he had tested positive for hepatitis C for 10 years after the virus was discovered.
After ending the first, ultimately unsuccessful course of treatment for his condition, Mr Z suffered several life-threatening health scares.
He said days before Christmas “my gullet burst in various places and I started spewing blood”.
Doctors managed to save his life but his organs began “shutting down from the inside out”.
Mr Z was later admitted to hospital again for a liver transplant but a few days after the operation it was discovered he had septicaemia in his heart, which had started to fail.
Due to the extremely high risk of the surgery needed to replace one of his heart valves, two surgeons refused to operate but a third agreed to do the procedure, although he gave Mr Z less than a 1% chance of survival.
Against the odds, he pulled through.
“Thankfully I’m still here today,” he said, adding “I had a young daughter and what kept me going was wanting to be able to walk her down the aisle.”
Through tears, he revealed that next month he would get that chance and see his daughter married.
The inquiry in Edinburgh continues.