We need organ donor ‘opt-out’ system urgently – The Guardian

The Guardian, Monday 7 July 2014

Seven years ago, the government ordered a review of the UK’s organ donation system. Figures showed that the rate of demand for organs was far outstripping supply, leading to hundreds of needless deaths every year. The Organ Donation Taskforce found that countries using a presumed consent, or “opt out”, system had far higher donation rates. The United Kingdom was not in the top 10. Tragically, nothing came of the review. Since then, 7,000 people – including children – have died. With recent advances in science have come increased potential, and demand, for transplantation. The gap is today greater than ever.

Despite laudable registration campaigns, the opt-in system can no longer be expected to fulfil its purpose. Organs are donated from just 1% of the numbers of deceased each year, while healthy organs from half a million people are cremated or buried. As a result, being on the transplant waiting list has become a game of Russian roulette. For example, if you’re waiting for a liver, there is a 20% chance that it won’t reach you in time. For heart patients, the figure is even higher. Children suffering kidney failure are having, in some instances, to wait for five perilous years.

In Wales, they are finally moving forwards. After a period of careful public consultation and debate, an awareness-raising programme is underway ahead of the implementation of a new “opt out” system next year. Those who object to organ donation can rest assured – as can their relatives – that their wishes will be respected under the new system.

For now, there are 7,000 people in the UK – many young children among them – waiting for a lifesaving transplant. While we wait for the rest of the country to catch up with the Welsh, we can at least ensure we are properly registered on the NHS’s donor database. For details, go to http://www.organdonation.nhs.uk.

Ed Goncalves
Director, KidneyKids UK


Confession time – I’m selfish…

This time last year I was at Guy’s Hospital being given an anaesthetic I was told would make me have vivid dreams. They were right. I scored the last minute winner in the cup final at Wembley. (It was a 40 yard screamer, in case you were wondering). Meanwhile a few miles across London, at Great Ormond St Hospital, my 9 year old son Luis was being prepped for surgery to receive one of my kidneys.

Today is obviously an important anniversary for my family. It’s brought back a lot of difficult memories about the roller-coaster road leading up to the Big Day. It’s also led me to conclude that my decision to donate a kidney was essentially a selfish one.

Many parents will tell you they love their children more than words can express. For me, the thought of possibly losing one of them was completely unbearable. I may dither about whether to have honey or marmite on my toast. This decision, though, was the ultimate no-brainer. I signed the form stating that, if there was a last-minute problem with Luis, my kidney could go to someone else. But secretly I only wanted it to go to my son.

I feel very privileged and fortunate to have been in a position to help my son. With a new kidney, Luis can play with his friends, go swimming, and eat what he wants. He no longer has unsightly catheters implanted in his body. He is released from the ordeal (and constant – and dangerous – infections) of dialysis.

Every parent who has a child with a life-threatening condition will tell you how desperately they wish they could do something to help them. I had the chance to stop Luis’ suffering and give him a relatively normal life again. What parent on Earth wouldn’t want that ‘superpower’?

But this was the easy bit. All I had to do was to lie down, have a little sleep, sit in bed for a few days, then lie around not doing anything for several weeks and let other people open doors for you.

The tough bit was done by Luis, a 9 year old boy who composed himself with yoga and Arthur Ransome books to take himself into an operating theatre for major surgery (one of 10 operations he had in a year), knowing he would wake up with tubes and wires all around him.

The tough bit was also done by Luis’ twin Joe, who watched his brother coming in and out of surgery on multiple occasions, saw what dialysis really means for a young child, who had to be sent away because his own family couldn’t look after him, who had to care for his Dad (often in visible pain) when he was discharged, and who all the while is left wondering: “Will it happen to me?”

The toughest bit of all was probably done by my wife Siobhan. She was the one who coaxed Luis through the pain and fear. Who negotiated – and sometimes argued – with endless nurses and consultants to get her son a better deal. Who had to send her other son away, and wave her husband off – not knowing for certain if she would see him again. Who was there when he woke up in Recovery Room, surrounded by a phalanx of medics. And who didn’t eat or sleep for days, so she could be constantly by his side.

So I confess, I had it easy. And I was selfish.

But at least I know I can score a great cup-winning goal.


The Night Before…

On March 18 last year I remember feeling very nervous. It wasn’t to do with the fact that I had been in an all-day management meeting. Nor was it to do with the fact that I would be having surgery next day.

It was about whether Luis would finally be able to have his transplant.

We had been waiting 10 months, having been told the process for a live donor would take no more than 6 months. There had been a previous attempt at the transplant exactly a month before – aborted at 10.45pm the night before when Luis had suddenly developed liver problems.

The successive delays had led to new complications and infections linked to dialysis – which in turn caused further delays. Luis now had a heart problem – he had an unresolved blood clot on one side, and a metallic stent in the other.

The journey to transplant day had been a rollercoaster ride. At one point we had been told there might never be a transplant – unexplained antibodies suggested his body would automatically reject any new organ. At last, it was decided to push ahead and try – but not before the words ‘HIGH RISK’ had been written in large letters in Luis’ surgical file.

I bade my colleagues farewell – one of them gave me an unexpectedly heart-felt hug – and made my way by bus to Great Ormond Street Hospital to join Luis and Siobhan. The three of us had dinner together in Luis’ hospital room before Siobhan left so Luis and me could spend the evening together, just the two of us.

Luis and me squeezed into his bed and settled down to an evening of Scooby Doo DVDs, which we watched until late into the night. Then we read for a while until Luis fell asleep. I stayed in his bed with him.

 I set my alarm for 5am to make sure I didn’t miss the hospital transport that would collect me and take me to Guy’s Hospital. Eventually, I fell asleep.


World Kidney Day

Tomorrow is World Kidney Day. So below I’m reproducing the blog post I wrote almost exactly 1 year to the day that my son received a kidney from me. I hope it helps to highlight the importance of World Kidney Day.



So this is it. The big day. Our hopes and dreams for a better life for our precious son come down to the next few hours.

Right now I’m giving Luis a cuddle in his bed. He is sleeping peacefully. We stayed up til late watching a movie. I’ve been in his bed with him all night giving him a cuddle.

In 30 minutes Siobhan will arrive at the start of what promises to be a long day for her and Luis. In 1 hour, a hospital car will take me from Great Ormond Street Hospital to Guy’s Hospital. By 8.30am I should be in theatre.

At 12.30, when the kidney arrives at GOSH, Luis will be getting ready to go to theatre. By 1.30pm, the transplant should be under way. All being well, Luis should be out by 7pm.

I hope to be sufficiently awake and coherent tonight to post an update on how everything has gone. Your ongoing support, positive thoughts and prayers for Luis on his big day are gratefully received.

So for now, I’m signing off. Wish us luck.”

KidneyKids website is live

It’s been a busy week or so!

We created a closed Facebook forum for families of children affected by kidney disease/failure. 60 families joined up in a matter of days. We’ve got a couple of hundred followers on Twitter, and our website went live today…and that’s before we’ve formally launched!

I’ll keep you posted with developments and news of the launch. In the meantime, check out the website at http://www.kidneykids.co.uk, and don’t forget to follows us on Twitter @kidneykidsuk.

PS you can also like our public Facebook page to show your support: http://www.facebook.com/kidneykidsuk

A smile for kids on dialysis

Luis’ twin brother Joe, who watched him and other children at Great Ormond Street Hospital go through the ordeal of dialysis and prolonged hospital admissions, is launching his own campaign to help them.

Joe, aged 10, is creating a jokebook for children to while away the hours and put a smile on their faces. His project began almost accidentally during an emergency trip to hospital, when he began making up and cracking jokes to help cheer people up. Soon, he was illustrating his own jokes in a large notebook.

Joe hopes to make his new jokebook available to every child in Britain who is on dialysis – and is asking them to supply their own jokes for future editions.

To find out more, visit http://www.facebook.com/joesjokes