Chelsea Flower Show - Infected Blood Scandal

by Amanda Patton in London, Greater London, United Kingdom

Chelsea Flower Show - Infected Blood Scandal

Total raised £2,880

£300,000 target 46 days left
0% 5 supporters
This project will only be funded if at least £300,000 is pledged by 6th July 2024 at 3:12pm

To create a garden at RHS Chelsea Flower Show telling the story of victims of the Infected Blood Inquiry to engage public support & empathy

by Amanda Patton in London, Greater London, United Kingdom

Thousands of UK haemophiliacs have died from being given contaminated blood in their treatment...

and yet few people know about it...

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.

This is a two-centred approach to fundraising; to those within the haemophilia community, if everyone were able to chip in just a little, we can do this and create a beautiful garden to tell our story to a huge audience.

To those outside our community, please read our story and help us if you can.  Our story needs to be told to prevent anything like this happening again.

Contaminated blood scandal

My name is Amanda Patton and my adored brother Simon Cummings died nearly 30 years ago at the age of 38.  He need not have died.

Simon was born with severe haemophilia, an inherited bleeding disorder mainly affecting males with the females carrying the disease to the next generation. Haemophilia affects the blood’s ability to clot, leading to massive bleeds into joints which is exceedingly painful, and which can lead to a permanent deformity of those joints.  A wonder drug, Factor VIII, was introduced in the late 1970s and early 1980s which allowed haemophiliacs to lead a more normal life by temporarily replacing the missing clotting factor.  What began as a miracle, however, became a death sentence when it was discovered that this treatment was riddled with highly contagious and life-threatening viruses including hepatitis C and HIV.

Cheap imports of blood from American donors, many of whom were known to be high risk, were used to create this Factor VIII.  More than 3,000 UK haemophiliacs have subsequently died as a result of contaminated blood used in the manufacture of their treatment – this is more people than died at 9/11, and yet few people know of the disaster, nor of the enormous scale of the tragedy. As a community, we have been campaigning for justice for over 40 years, to understand how and why this could have been allowed to happen and to continue to happen even when the risks were known.

The Infected Blood Inquiry

Despite a national public Inquiry, the Infected Blood Inquiry, which is coming to the end of a 6-year long investigation, many people know little of the disaster, nor are they aware of the injustices this huge group of people has suffered; we have no defining image for the public to empathise with.  With the stigma surrounding AIDS in the 1980s and beyond, many haemophiliacs kept their infections hidden and so our tragedy has largely fallen under the radar.  However, it is clear from the outrage at the treatment of Post Office workers how the public can align very quickly when exposed to compelling subject matter. 

 Sir Brian Langstaff, Chair of the Infected Blood Inquiry, has described this as "the worst treatment disaster in the history of the NHS"

As a garden designer who has previously exhibited at the Royal Horticultural Society’s Chelsea Flower Show, I know just how much public awareness can be generated through creating a garden at the Show.  Creating a powerful visual representation of the tragedy which is both compelling and beautiful will inspire empathy and engagement with visitors and viewers alike and bring this important chapter of NHS history into the public arena.

For our community, the garden could allow the healing process to start.

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When I speak to people about the contaminated blood scandal, the initial reaction is often to say no, they don’t know of it, followed by – oh yes, I think I’ve heard something.  For a tragedy that has affected so many people, this is disheartening to say the least!  When caught up in a tragedy far larger than any one of us, what we want is to be listened to, to be heard.  This is what we have been missing, but this disaster has implications beyond our community.   Without this Inquiry exposing what went wrong, there are no guarantees for future groups of people not to face a similar fate, so we are fighting not just for ourselves and our loved ones who were taken from us, we are fighting for the failings that the Inquiry has highlighted so that no-one else has to suffer like we have. 

The big idea - the RHS Chelsea Flower Show

While named for my brother, Simon's Garden, the garden is for all haemophiliacs and their families caught up in this tragedy.  By telling the story through the eyes of my brother's and my own experiences, I am telling the story familiar to all of us affected and infected.

The garden takes us on a conceptual journey from those early frightening years, through pain and loss, ultimately to a place of reflection and hope. 

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Thousands of tiny white and pale yellow flowers will represent the lights - the people - that have been put out, gradually replaced with dark flowers and foliage as you progress through the garden as the horror of the situation becomes apparent.

What are the benefits?

The British Royal Family have a private viewing of the Show where they visit selected gardens, meeting the teams responsible for bringing the exhibit to life – and as we are all aware, haemophilia had run through the British royal family so this is likely to be of particular interest to them.

The show attracts 140,000 visitors annually and has a worldwide reach of nearly 2.5 billion, while 600 press and more than 120 celebrities attend the event. Press coverage had a combined circulation of 84 million and was worth approximately £10m in advertising value equivalency (figures from 2022).

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The Royal Horticultural Society

The RHS have seen the design and recognise its importance and would like to see it brought to fruition.  I have therefore submitted the design for inclusion in the 2025 show. This is held in the Royal Hospital grounds in Chelsea, in the penultimate week in May.

From the original RHS selection panel:

"The panel were moved by the strong and meaningful message behind your garden...they had a very positive initial response to the application and look forward to reviewing it fully...once funding has been secured."

The design

Through a conceptual use of colour, texture, light and movement, the garden follows the journey from frightening diagnosis of infection with potentially lethal viruses through an increasingly difficult path. A dark focal point marks the outcome for the thousands for whom this ended in tragedy; for those left behind it brought questions which we hope will be answered in the Inquiry. I have used water to convey emotion, from churning anxiety through deep, bottomless grief and finally to the falling but cathartic water of tears, with poignant words highlighted in light in the falling water - these words provided by the infected and affected community as to what this Inquiry means to us. Water replaces mortar in a brick surface that extends into the dark pond, the levels of both equal - the emotions being close to the surface - while still and churned water sit adjacent to each other with seemingly no division.

The transparency of the Inquiry is represented by a glass pavilion, light-filled and etched with signatures of those lost. This sits as a focus at the heart of the garden, though reached by a tortuous path. Beyond this, the garden becomes a force for healing and moving forward.

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Like many of the community, my brother died before the internet, before mobile phones and digital cameras.  I have precious few photos of him, so what I cherish are the birthday cards that I have kept that he signed.  I therefore want to use his signature, along with the signatures of as many others as can be involved, etched into the glass panels of the pavilion.  I hope that the number of signatures will go some way to express to the public the sheer scale of the disaster.  While Chelsea will tell the story, following the show I intend to relocate the garden to a permanent location, where these panels can form a moving centrepiece to a memorial garden for the haemophiliacs.

Simon Cummings

My brother Simon was a well-known and well-loved local radio presenter in Surrey and Hampshire, broadcasting from 1982 until the October of 1996 when, unknown to him as he left the studios, he gave his last broadcast.  He died two months later.

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 here on YouTube! 

The team

I have previous experience of building at Chelsea and other RHS garden shows and have won numerous industry awards for my design work, which now spans a career of 25 years – sadly I came to this after my brother died.  Construction will be with experienced Chelsea contractors so we are all in safe hands.

The cost and timeframe

I am looking to raise around £300,000 which would allow me to build a small garden at the show.  However, if I can raise a further £100-150,000 we can build the garden on Main Avenue and it is these gardens that generate the most publicity.   I am fundraising on an all or nothing basis, meaning that if we don't hit the target, you will be refunded in full. 

I have applied to create the garden at the 2025 show.  This means I need full funding in place by September this year.

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