Diana and Mike’s story
Diana and Mike’s son Stuart was diagnosed with HIV at the age of six.
When they left the small hospital room where they’d been told of his diagnosis, Stuart demanded to know what had been said about him.
“We weren’t going to lie to him,” said Diana. “We always told our children the truth, so rightly or wrongly, we told him what the doctor had said.”
The couple believe that Stuart, who had severe haemophilia, was first infected through contaminated blood products in 1981 with non A non B hepatitis, later called hepatitis C.
Diana said: “Stuart lived with this. He lived with the knowledge that he had both HIV and hepatitis C and that he had to be careful about who was near if he had nosebleeds.”
She remembers having to reassure him when he got shingles aged 13 that he was not going to die. For the couple, who also have a daughter, coping with Stuart’s declining physical and mental health was extremely difficult. They saw him go from a happy little boy to a “bitter and sad” young man who was “destroyed” by his infections. Stuart died at the age of 27.
As parents we’ve been forgotten. It’s as if Stuart was insignificant, and he wasn’t insignificant. He was our precious boy, our son.Diana
Diana had counselling twice. Once, a few years before Stuart died and then through the hospice which cared for him in his final months, which she believes was helpful as she could talk honestly about feelings which she had kept hidden to protect her family.
Mike said: “We’re lucky. We’re very close and we talk a lot. There are people in this situation that haven’t got that. There are people who are desperate to have someone to talk to.”
Speaking out in support of The Haemophilia Society’s campaign for long-term specialist psychological support, the couple believe that more help will be needed as the Infected Blood Inquiry moves on with its investigations.
Diana said: “Initially, we were sad but not angry. I am more angry now and I don’t want that to eat me up. If you go down that path it can be soul destroying – that’s when we’ll probably need psychological help. “
When following the inquiry gets too much, the couple withdraw – sometimes to their caravan in Devon.
Diana said: “We don’t watch all the inquiry stuff because if we did I think it would destroy us. You have to have some balance. We have a daughter and grandchildren who need us. We’re quite strong people but it does get you down, there’s no denying it.
“All the way along we’ve not had any real help. We’ve had nothing. We’ve just got on with it, we’ve counselled ourselves in one sense – we’ve talked. Now the inquiry is opening up old wounds for everybody.”
Diana and Mike are determined that their loss and suffering will finally be acknowledged as a result of the inquiry.
Diana said: “As parents we’ve been forgotten, it’s as if our children were superfluous. That’s how it’s made me feel, as if Stuart was insignificant. And he wasn’t insignificant, he was our precious boy, our son.
“He should have grown and had a family and been happy instead of eaten up with sadness and bitterness which is what it did to him – it totally destroyed him.”
Find out more about The Haemophilia Society’s campaign for long-term psychological support for people infected as a result of the contaminated blood scandal and their families.