‘My parents died in the infected blood scandal, but I won't get a penny in compensation’

My family was destroyed by the infected blood scandal. From the early 1980s up until today, at least 2,400 people in the UK have died after receiving blood products during the 1970s and 1980s infected with HIV and/or Hepatitis C, including both my parents.

Last month, Sir Brian Langstaff, chair of the ongoing inquiry, recommended that surviving victims and their spouses should receive provisional compensation of £100,000 each. The Government has said it will urgently consider these recommendations.

But people like me - the children or close relatives - won’t get a penny. Not yet. With the inquiry due to last another six months, there’s no guarantee we ever will.

While I’m pleased that finally - after a 30-year campaign - some will be compensated, it’s a bittersweet victory. It only adds to my anger at the Government and pharmaceutical companies, who knew about the infected blood products, but did nothing to stop it. My parents’ deaths, and the others were an avoidable tragedy.

My father, Stephen, was born with haemophilia and received regular infusions of Factor VIII, a blood-clotting protein, on the NHS. He was diagnosed with HIV and Hepatitis C in 1985. I was only 18 months old. It didn’t take long for doctors to conclude that he had caught both viruses from the Factor VIII blood products.

Both he and my mother were very good at concealing it from me and my two half-brothers (from Mum’s previous relationship), who lived with us (in a house kept spotless to prevent infection). We had a normal, happy upbringing and would have day trips to the New Forest and holidays in Weymouth, although I remember Dad always walked with crutches. I was also brought up never to hug him, as simply knocking him could cause a bleed (something they must have been very worried about once they knew he had HIV and Hep C).

Eventually, Dad, a former engineer and sales rep, became too ill to work. His illness also put a huge strain on his relationship with Mum, so he went to live with his parents, before he inevitably deteriorated and was taken into hospital. I didn’t see him again before he died.

Dad had unknowingly passed on both infections to Mum. She didn’t find out until 1991. For her, the end came very fast. In August 1993, just a few months after she became sick, and only eight days after Dad passed away, she died too. She was 40 years old, and Dad was just 36. I was nine and my half-brothers were 13 and 17.

I was too young to understand what was happening, but I do have a vague recollection of visiting her in hospital and of being cuddled by her. I remember my uncle and aunt moving into our house to look after us. We received a phone call to say she had died, and I remember bursting into tears on hearing the news, but I must have blocked a lot of it out.

My parents’ deaths, though, tore our family apart.

I was sent to live with my aunt and uncle, leaving my school and all my friends. My half-brothers went to live with their biological father. After that, I only saw them a few times a year. At the end of each visit, I’d have to be dragged away in tears. I didn’t understand why we couldn’t be together anymore, why everyone I loved and everything I knew had been taken away from me.

At my new school I learned to brush away questions about how my parents had died. I’d been instructed not to tell anyone because of the stigma. It was only years later that I confided the truth in some close friends and was relieved not to be judged.

I coped by burying my head in schoolwork, partly because I didn’t want to be any trouble. Home life wasn’t easy - taking me into their family put a lot of strain on my aunt and uncle’s marriage, and, of course, they received no financial assistance. At 18, I left school, left home and started full-time work in retail.

Had my parents still been alive, there’s little doubt that I would have gone to university and had a professional career. By now, I would have bought my own home. Instead, I’m renting and, at the age of 38, am only just starting my degree in forensic science. My parents were too young and too sick to get insurance or to save anything before they died.

Being orphaned has affected every aspect of my life. Beyond the lack of financial security, I grew up with no emotional security - no hugs when relationships failed, no unconditional love. I’ve had to become fiercely independent, which in turn has made it hard to form relationships. This isn’t helped by the fact that, as a carrier of haemophilia, which is passed down the female line, I have chosen never to have children.

Joining the Infected Blood Scandal Campaign, after I saw a Panorama about it, has really helped me. I’ve met people who understand what I’ve been through and it’s given me a voice. I'm now seeing a therapist and working through long-buried feelings. I have created my own family network, made up of my half-brothers and friends. I’ve worked hard not to let my parents’ deaths destroy or define me.

You can’t put a figure on what I have been through. Even if I am eventually offered a £100,000 interim compensation payment, no money can ever compensate for the loss of my parents - or for the life I should have had.

As told to Hilary Freeman

Listen to Bed of Lies, a Telegraph podcast on the Infected Blood Scandal on Apple Podcasts, Spotify or wherever you listen to podcasts.