Thousands of UK haemphiliacs have died from being given blood contaminated with lethal viruses in their treatment; my brother Simon was one of them. And yet so few people know about it, nor have any comprehension of the the scale of the disaster.
I want to change this by creating a powerful visual image of the tragedy to be exhibited as a Show Garden at the RHS Chelsea Flower Show, a prestigious event with far-reaching impact.
See at the end of this post for how you can be involved!
Simon had severe haemophilia, which is an inherited bleeding disorder. He died 28 years ago aged just 38 after contracting AIDS and hepatitis C from his treatment. He was one of almost 5,000 men, women and children with haemophilia and other bleeding disorders in the UK who were infected with deadly viruses in the 1970s and 80s. More than 3,000 people have died – as many as at 9/11 – and yet few people have heard of this tragedy which is widely acknowledged to be the worst treatment disaster in the history of the NHS. Today, our voices are finally being heard thanks to the Infected Blood Inquiry which has just concluded a 6-year investigation into what went wrong to allow this to happen. The Inquiry findings were published on the 20th May.
Unlike other disasters, we have no one defining image that enables the public to empathise with the scale of the tragedy; instead much of the suffering has been behind closed doors, in part due to the stigma that accompanied AIDS in the 1980s and 90s. Simon’s Garden will give us that image through creating a powerful and beautiful garden telling the story of the tragedy that has devastated our community which will allow us to communicate to a wider audience the enormity of the impact it has had on so many.
The focus of the garden is the glass pavilion, representing the transparency of the Inquiry. It will be etched with the signatures of those lost and will form the basis of the permanent memorial following display at Chelsea. Simon died before the internet, before mobile phones. I have very few photos of him and so what is precious to me is the birthday cards I have kept that he signed.
Three states of water – agitated, dark and bottomless, and healing tears – will represent the emotions we have all felt, while the planting will include small white and pale yellow flowers, representing the ‘lights’ that will be put out, in amongst an increasing number of black leaves and flowers as you progress through the garden.
My brother was a much loved local radio presenter on County Sound Radio in Surrey and Hampshire; many people still remember him though none would have known at the time how or why he died.
In the late 1980s, Simon made a charity record along with Cliff Richard, Justin Hayward, Rick Wakeman and others. Called ‘Everybody’s Got a Crisis in Their Life’, it’s possible this could be performed at Press Day but you can have a preview on YouTube!
Crowdfunding
I am now looking to fund the garden through crowdfunding, the details for which you will find here: Chelsea Flower Show – Infected Blood Inquiry
