Sussex garden designer hopes to honour infected blood victims

During the 1970s, Simon Cummings was one of 6,000 people with haemophilia treated with contaminated clotting factors containing HIV and hepatitis viruses. He died in 1996 at the age of 38 after contracting HIV.

While the public inquiry, the results of which were published this year, was taking place, Simon’s sister Amanda Patton felt she “needed to do something that I could contribute”.

She hopes to create a memorial garden at next year's Chelsea Flower Show, marking the deaths of the haemophiliacs who died.

Amanda, who lives in Storrington, said: “One of the things I found incredibly frustrating is the general lack of awareness – more haemophiliacs have died from infected blood than people in 9/11. The scale of it is just not understood by the vast majority, even though we have had all the publicity. I think this is because we don’t have a defining image – we don’t have the burning building, or the crowds being trampled, so all the public can take away is nameless victims of a nameless number. By calling it Simon’s garden, we can make it personal and engage the public with the story behind the garden.

“There is the huge potential that unless the findings of the inquiry are taken on board, this tragedy could happen again to another group of people. It’s deeper than creating a pretty space.”

The glass pavilion will feature the names of the haemophiliacs who died from infected blood (Image: Amanda Patton) The focus of Amanda’s design is a glass pavilion engraved with the names of the haemophiliacs who died. She hopes this will ensure the “sheer number will hit home” as well as being a “safe, healing and uplifting place”. After the show, the garden would be remade into a permanent memorial in the grounds of St Botolph-without-Bishopsgate in the City of London. Amanda chose this site because the previous rector of the church lost his son, who was a haemophiliac, to infected blood.

She said: “Of approximately 30,000 given infected blood, one sixth were haemophiliacs. It hit the community so hard, it wiped out 90 per cent of that generation of haemophiliacs.”

The garden must be independently funded and Amanda is in a “race against time” to keep the project going. She hopes a commercial sponsor will step forward.

She said: “We need the funds to be at least promised within a week. We’re up against the wire – we need a miracle.”

Simon was lead presenter of County Sound, an independent radio station in Guildford and was a well-loved figure. He was Amanda’s only sibling, born only 16 months apart.

Amanda said: “He never let his haemophilia get him down and never even let the infection get him down which is incredible because it took his life. He was a total inspiration. We were very close. The garden would be such an amazing way to honour him and the people who lost their lives.”

 Simon interviewing Keith Allen from the band The Searchers at Treloar School in his capacity as a presenter on County Radio (Image: Amanda Patton) Simon was diagnosed in 1984, having taken the blood clotting Factor VIII since the late 1970s. Amanda said the diagnosis was initially “played down” but within a year Simon and others were being told they had two years to live.

She said: “He tried to save us from what I think he knew. I was in complete denial. I thought they would find a cure. What came out at the inquiry was that the treatment Simon was given never should have been licensed.

“He would have been 66 a week ago. He was taken from us so young and nothing will ever bring him back.”