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 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. 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 published its report in May this year following 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 beautiful and meaningful garden 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 would allow the healing process to start.
The big idea - the RHS Chelsea Flower Show
While named for my brother, Simon's Garden is for all the haemophiliacs and their families caught up in this tragedy.
The focus of the garden is a glass pavilion, made from glass panels etched with the signatures of those lost. As my brother Simon died before digital cameras and the internet, all I have left are the birthday cards that he wrote on so these are incredibly precious to me. It’s intended that these panels, arranged into a pavilion for the show, will be re-erected at St Botolphs without Bishopsgate, a place of significance to our community, into a permanent memorial garden after the Show. Being glass, they also emphasise the transparency of the Inquiry, and are set as both the focus and the destination of the garden.
I have used water throughout the garden to express emotion and emphasise the story; a rill runs from the front of the garden to the pavilion, leading us there in a direct route, though the actual route to the pavilion is windy and narrow in places. A pulsed fall of water falls from the zig-zag frame at the entrance to the garden; by being pulsed rather than continuous, it emphasises both the continuing number of people affected and dying, and the very long time that we have been waiting for justice.
From the front (the main vista) the pavilion will ‘sit’ partially in water, which will give wonderful reflections. Two of the entrances are approached over water, with sections of brickwork set into water rather than mortar; the water and brickwork are at exactly the same level, emphasising that our emotions are very close to the surface. Finally the healing wall (wall of tears) will feature a textured surface where the water falls irregularly over it; this is located in a quiet and enclosed space off the pavilion.
There is a secondary access to the garden from the end of the long vista; this will allow wheelchairs into the garden and pavilion during the show (the public are not allowed on the garden).
The planting at the front of the garden will be partially into gravel, and here there will be a few very dark irises within the mix, reinforcing that there are troubled times before the route to the Inquiry. The central section of garden is designed as a stylised ‘orchard’ – the blossom and new spring flowering offering hope. There will be multi-stemmed crab-apple trees, underplanted with soft and textural bulbs with ornamental grasses and flowers, in warm rich shades of reds, oranges and burgundies; the effect will be jewel-like and uplifting.
The planting at the rear is designed as a winter garden, as it is in the depths of winter that we need most comfort and this area of the garden surrounds the pavilion. While it will also be planted with spring interest, it will show the public that a winter garden can be designed in a smaller space without compromising the garden through the rest of the year – I believe this is a first at Chelsea and will draw media attention because of that. My colour scheme is also unusual for Chelsea, which tends to be dominated by pinks and blues, so this too should get us attention.
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).
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 by the wonderful Landform who have vast Chelsea experience so we are all in safe hands.
The cost and timeframe
Funds for the garden are being channelled through the Haemophilia Society. I am looking to raise a total of £450,000 to build the garden as a full-sized Show Garden on Main Avenue; these gardens 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. My brother's widow has already pledged £100,000 to the garden, so we are looking to raise the additional £350,000 needed to go ahead.
However, I'm also excited to share that Albion Stone, a UK quarry of beautiful Portland Stone, have gifted us the large percentage of the hard landscaping materials we need. This includes us benefitting from their new and innovative product of Heritage Portland Stone® Bricks which have all the practical elements of clay bricks but with a fraction of the embodied carbon, giving them one of the lowest carbon footprints for any building materials. This is the first time they will be seen at Chelsea and I am so thrilled we can use them! A big thank you to Albion! Thank you too to Vande Moortel who have gifted us the clay bricks we will use in the paths, and to Alison Crowther who is loaning us one of her beautiful oak sculptures. It's so gratifying to have so much support from within the industry. And of course, all these gifts will help to keep the cost down so we may not need as much as I've specified. Anything over will help pay for the relocation to St Botolphs.
I have applied to create the garden at the 2025 show. This means I need full funding in place by September this year.