MEMBER SUBMISSION

By The Unheard Voice

My dad lived for years with HIV. That was devastating enough. But in 1997, his medical records show something changed. They record that his HIV had progressed to AIDS, with a diagnosis date of 15 February 1997. 1-3553 NHD Record.pdf

What I did not understand until recently was how significant that progression had been. Dad’s records include AIDS-indicator illnesses and record a CD4 count of 50 around the time of the diagnosis. Years later, I found myself reading those records and finally beginning to understand what had been happening to him.

I cried for hours.

I had spent years trying to understand his battles with HIV, hepatitis B and hepatitis C. I thought I had reached a point where nothing else in his medical history could shock me. I was wrong.

I began asking myself questions I may never be able to answer. Did Dad know his HIV had progressed to AIDS? Was it properly explained to him? Was he frightened to tell us? Did the stigma surrounding AIDS make it impossible for him to say the words? I simply do not know.

What I do know is what I witnessed.

For several years after the AIDS diagnosis, Dad could still socialise and maintain parts of his normal life. Then things changed dramatically. By around 2006, he barely went out. He suffered terrible thrush and struggled to eat. He became extremely thin and withdrawn.

Then he fell into a coma.

We were told that this could be the end. He was initially being treated in Kent, but his case was taken up by specialists at Guy’s Hospital in London and he was transferred there urgently.

I followed him to London while my brother was away working. At the same time, I was trying to hold down a full-time job and look after my three-year-old child. Dad was treated in high dependency, and when he eventually woke up, he had a tracheostomy, was being tube-fed, could not speak and was delirious.

He looked incredibly weak. He looked like a different man.

That was the defining moment for me.

He eventually returned home, but the dad who came home was not the man he had been before. His personality changed. He looked frail. In the middle of summer he could sit in the house with the heating turned up to around 30°C because he could not seem to get warm.

He coughed and choked while eating. His lungs were badly affected. He could no longer keep up with the life he once had.

By the end of his life he weighed around six stone. He relied on a mobility scooter and had become extraordinarily weak. I watched a proud, strong family man become a ghost of the man I had known.

His record ultimately lists pneumonia as his cause of death in July 2011. 1-3553 NHD Record.pdf

So where is AIDS in the compensation calculation?

I want to be very clear about something. I am not minimising HIV. HIV itself caused enormous suffering, fear and stigma, particularly for people infected during the contaminated blood scandal.

But HIV and AIDS are not medically interchangeable.

AIDS is the most advanced stage of HIV infection, when the immune system has been severely damaged and people can become vulnerable to serious opportunistic illnesses. My dad’s records show that progression happened to him.

So I have a simple question.

Where does the compensation scheme specifically recognise what happened when HIV progressed to AIDS?

Current Government guidance sets out compensation for HIV within the infection-severity framework and provides core awards for injury, social impact, autonomy, care and financial loss. It also provides supplementary awards for certain severe health conditions.

What I cannot readily identify in the published scheme is a separate, clearly labelled award for progression from HIV to AIDS.

If that additional deterioration is already fully captured somewhere in the calculation, then families should be shown exactly where. If it is not, I want to understand why.

Because the distinction was not academic in my dad’s life. We lived it.

This is also about what families were told

There is another part of this that I find difficult to comprehend. I have only recently discovered the AIDS diagnosis through medical records.

My brother and I lived through Dad’s deterioration, but we do not remember being told that his condition had formally progressed to AIDS.

That does not prove Dad himself was never told. I cannot make that claim. But it leaves a painful unanswered question.

What did he know, what was explained to him, and what did he carry alone?

The Infected Blood Inquiry did examine AIDS and the experiences of people with haemophilia. It documented failures around risk, communication and the treatment of infected people. So the issue of AIDS itself was not absent from the Inquiry.

My question now is about what happened afterwards.

How has that history translated into compensation?

“HIV changed his life. AIDS changed the man I knew.”

That is the simplest way I can describe it.

The Government has apologised for the infected blood scandal. But for families like mine, the process of understanding what happened is still continuing decades later.

We are still discovering medical information. We are still piecing together fragmented records. And we are still asking whether every stage of the suffering experienced by those who were infected has actually been recognised.

I am not asking anyone to take my word for the medical history. The records are there.

AIDS. 1997. A CD4 count of 50. AIDS-indicator illnesses.

Those facts changed the way I understood the final years of my dad’s life.

Now I want an equally clear answer about the compensation scheme.

Where is that progression recognised?

— Sarah, member submission

— The Unheard Voice