Robin Hutchinson and son Ross

Robin Hutchinson is in incredibly good spirits. We meet at FUSEBOX on Kingston’s riverside, a venture he spearheaded, which has transformed an historic basement into a thriving arts hub. It only opened last summer (with Edward, Duke of Edinburgh, officially cutting the launch ribbon) and the venue is already a huge hit with young artists and musicians.

We are surrounded by the latest project that Robin has been involved in – a trail through the borough reflecting on its music heritage. There are mannequins wearing street fashion from through the decades. There’s a record player on the table where visitors can listen to albums connected with Kingston.

It is a small example of just how much of an impact Robin has had on the borough, and there’s no shortage of examples – some quirky, some with a very serious purpose – all of which have the aim of bringing people together in some way. One of my first stories I covered at T&L many years ago was following a procession around Surbiton, led by Robin and his wife Ann, as well as two people dressed as giant guinea pigs. It was all part of the legend of Lefi, the goat boy – a myth completely made up by Robin and friends.

Robin is a familiar face around Kingston – instantly recognisable by his Gandalf-like beard (his observation, I hasten to add). He is the director of The Community Brain, which puts together a range of projects ranging from tackling food poverty to bizarre endeavours such as Bread Golf on the Thames; he’s the chair of Creative Youth, organisers of the international arts festival FUSE International and FUSEBOX, and is associate animateur at the Rose Theatre, having been a founding trustee and director. Oh, and he’s in a band, the Reptiles.

Robin, 65, realised he was feeling very tired. It would be understandable given all of the above. But there was more to it than that. A routine eye test revealed elevated blood pressure.

Robin says: “I was feeling more tired than normal but I just thought this is what old age feels like. Ann suggested I go to the doctors but being a typical man, I didn’t. Then the optician picked up on the high pressure and suggested I get a blood test.”

Things quickly escalated. Further tests revealed problems with his kidneys and he was told to get to hospital immediately. “I was suddenly on a trolley bed, being told that my kidney function is at 3%. Even without any prior medical knowledge, you know that’s not good.”

Remarkably, he had been carrying on as normal up until that point. “I was told I should either be in a coma or bed-bound. They said they only knew of one other person able to do this and that person was a marathon runner – it goes to show it’s not down to fitness,” he laughs.

“They didn’t want to put me on dialysis as my body was still working and they didn’t want to disturb this – even though they had no idea how it was working.”

It soon became clear though that a spell in hospital was not going to help rebuild kidney function any further than 9% and that a transplant was the way forward.

Family and friends stepped up to see if they would be a suitable donor. It was Ross, 41, his eldest son of five children, who tested first and he was found to be a match.

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I speak to Ross later. He is based in the North East, working as a weather presenter for Tyne Tees. He said the decision to donate was easy and he is incredibly pragmatic about it all. “I was very comfortable with stepping forward. I am one of those dull non-smoking, non-drinking vegetarians, so the odds were in my favour. It made sense that it should be me.”

“I did some research and found that donations from living donors have a slightly higher success rate. It also meant that someone else would get the kidney that Dad would have got from a deceased donor. That made my mind up.”

For Robin though, it was hard to deal with the idea. “Obviously, it was an incredible thing for him to do. But I didn’t know how to cope with the thought that it was going to be Ross. It was not the order of how things should be. It felt like I should be the one donating something to him.

“My comfort is the statistic that if you have donated a kidney you are likely to live longer than someone who hasn’t as you will be given tests yearly, which picks up any health problems early.”

The operation was scheduled for 16 November 2023. Ross’s kidney was removed and taken by ambulance from Newcastle to St George’s in Tooting. The kidney was then transplanted in to Robin. His body then had to adjust to three kidneys. “It did feel weird at first but it is amazing how quickly the body heals itself. Your other organs make room to accommodate this extra kidney. I also had a huge Frankenstein-like scar, but it now just looks like badly applied make-up.”

Ross was back at work after six weeks, and Robin is full of energy and back to organising his many projects. “By coincidence, both of us now have our kidney function working at 55% and it should continue to go up.”

The week I meet Robin, he has just learned that he will only need to see the consultant every six weeks to check on his progress, having had countless frequent check-ups since the operation. “I had forgotten what it is like to actually feel well,” he says.

Both Robin and Ross have high praise for the NHS teams in Newcastle, Kingston and Tooting. Says Robin: “The NHS is under immense strain but once you are in the system it is fantastic how they deal with you. This would have bankrupted us in America. We have to keep fighting for the NHS. Clapping outside during pandemics is not enough.”

Robin has been keeping everyone updated on his progress via his social media posts, Ross’s operation was announced on air to explain to viewers why he wouldn’t be presenting for a while. They have been touched by the reactions they have had from people, often strangers.

Their openness has widened the conversation on kidney transplants. But Ross is keen to stress that donating your kidney is not going to be the answer for everyone in this position.

“I was fine with it. But no one should feel pressured.” He adds that if it will cause you a huge amount of stress, you’re better being there as a support for the person that needs the transplant rather than being a donor.

And while Ross was comfortable with his decision, he hadn’t fully considered the emotional impact on those around him. “When I had the operation, my other half was there, as was my sister, they were feeling the emotions for all of us. But I knew I was in safe hands and the success rate for this kind of operation is so high. Even so, I’d advise others in this situation to have the conversation early with their loved ones so that by the time the operation comes around, they are as comfortable with it as you are.”

Recently, Ross was able to drive long distances again. He went to see his father. “Dad finally had some colour back. He had looked so grey and unwell before. I hadn’t appreciated how he’d been surviving so long on broken organs…”

Throughout it all, Robin has been supported by Ann, who he says has been incredible, and very practical. “She is human and of course she has had her moments, but she is of the mindset that we face what we are dealt with.”

Robin and Ann originally met through a pantomime Robin was casting. “We met on April Fool’s Day. I’m born on Halloween. She was born on St Patrick’s Day. We got married on Friday 13^th in 2000, and were the only wedding in Swanage that day…”

Ann is a teacher with SENCO responsibility in a primary school. “In another life I must have been so good to have got her in this life. She is amazing.”

Robin is continuing with his updates on social media. They are often funny, many times poignant. He says his aim was to show a range of emotions. “I have treated this with some humour but wanted to show others who are facing difficult situations, both the positivity but also the fragility. There are times when you feel desperate and times you can laugh at it if that is what you decide you want to do.”

Follow Robin and Ross

Instagram: @homagedefromage

X: @Ross_Hutchinson

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