‘Dad’s dying of AIDS.’
As soon as Mum uttered these words to me, I ran upstairs, flung open the bathroom door and threw up in the sink.
This devastating news came when I was just 15 years old in 1989. Just under seven weeks later, my 48-year-old dad died.
But it wasn’t until around a quarter of a century later that I truly realised the extent to which his story was part of a much bigger one.
He was one of the estimated 30,000 people in the UK who contracted HIV and/or hepatitis from contaminated blood products in the 1970s and 80s. It’s known as the infected blood scandal.
This week, the victims of what is widely regarded to be the largest medical treatment scandal in the history of the NHS finally received an apology from the Government – including the promise of compensation too.
Dad had haemophilia, which is a relatively rare condition that affects the blood’s ability to clot. He had a severe form of the disorder that meant he was prone to internal bleeds into his joints, sometimes making it difficult for him to walk.
He had to be very careful in his day-to-day life to avoid injury, he would bruise easily and cuts would just bleed and bleed.
As a child, it meant that we couldn’t play football together, run around or wrestle. Instead, we played snooker and he showed me how to do DIY around the house.
I didn’t know it at the time but he tested positive for HIV in 1985 after being treated with a blood product called Factor VIII, which helped his blood to clot. In the winter of 1987 he developed pneumonia, which likely marked the point at which his condition had progressed to full-blown AIDS.
Mum and Dad did everything they could to hide his diagnosis from me, including taking the labels off his pills in the kitchen drawer. In hindsight, I’m thankful I was shielded for so long.
Then on 9 July 1989, Dad tried to get up from the sofa in the living room and fell over. He ended up breaking his hip and that’s when Mum knew she had to tell me the truth about what was wrong with him, which was a huge shock.
Dad was taken off to hospital to have his hip repaired and was eventually transferred to the Queen Elizabeth Hospital in Birmingham. He never came home.
Near the end, I have a distinct memory of a consultant pulling Mum and I into a side room and rather bluntly saying: ‘Well, he’s dying’.
On the morning of Saturday 26 August – six weeks and six days after first going into hospital – Dad’s breathing was shallow and raspy. And then it stopped.
That moment is seared into my mind because instead of some kind of notional peaceful expression, his mouth was wide open as if he was letting out one long silent scream. Leaving the hospital that day, I felt empty and numb.
Life after that carried on, but it changed my mother immeasurably. She wasn’t infected herself, but her physical and mental health after Dad’s death was awful.
She wasn’t really living, she was just existing. As a result, our relationship became strained.
Mum died at the age of 58 in 2010 – 21 years after her husband.
It wasn’t until the mid-2010s that I realised Dad wasn’t alone in his suffering. I heard more and more stories through social media – particularly Twitter – about how I wasn’t alone, and many others had been infected with HIV and/or hepatitis through contaminated blood products.
When the inquiry for the infected blood scandal was announced in 2017, I decided to do some proper digging. That’s when I found a medical report confirming Dad’s diagnosis for both HIV and hepatitis C – the latter I had no idea about.
I also found paperwork related to litigation from 1990 that confirmed things like when Dad was tested and even batch numbers of the blood products he received. It was settled out of court and Mum received a payment, which I think went towards buying our council house.
I was never a campaigner, but I was so shocked by it all that I started sharing my dad’s story on social media.
This week, the long-awaited infected blood inquiry report was published, which said that victims had been failed ‘not once but repeatedly’ by doctors, the NHS, and the Government. As a result, Prime Minister Rishi Sunak said: ‘I want to make a wholehearted and unequivocal apology for this terrible injustice.’
I appreciate the apology, but it is far too late in being made – and it also needs to be backed up with action. And quickly.
Following the publication of this thorough and utterly damning report, not only was there an apology from the PM, but also a reported £10 billion of funding has been allocated to the victims and families of those affected by the scandal.
I welcome these measures, but it doesn’t bring back my dad.
He never saw me graduate or get married. He never got to meet his granddaughter. But I also never had the chance to take him down to the pub to buy him a pint or come to him for advice if I needed it. I could’ve used his DIY skills, as I definitely didn’t inherit that from him!
No amount of money will change the suffering that my family – and so many others – went through. If we could wave a magic wand, everyone who has been touched by this tragedy would choose to make it such that this had never happened to them.
We would choose to have our lives and our loved ones back – forget about the money.
I want to pay tribute to the many people who have campaigned on this topic for many years, often those who have been infected or affected by this scandal. I would also like to acknowledge the tireless efforts of Dame Diana Johnson, who co-chairs the All-Party Parliamentary Group on Haemophilia and Contaminated Blood, as well as Chair of the Infected Blood Inquiry, Sir Brian Langstaff.
I believe that there needs to be accountability.
Whether it is those in the Government or the civil service who withheld crucial information and made decisions in the best interests of the public purse rather than patient safety, or clinicians in the NHS who treated their patients as research subjects and gave them blood products that they were aware may infect them with deadly diseases – all and any evidence of wrongdoing should be looked at and prosecutions should follow where appropriate.
Developments this week in this decades-long scandal are not the end of it. For anyone involved in this, there’ll never be complete closure.
The apology from the Government and opposition benches, along with the promise of some financial redress, means we can at least try to close a chapter of this story and move on with the rest of our lives.
As told to James Besanvalle
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