In a couple of weeks time, my 11 year old son and I will be competing in the UK Transplant Games for the very first time. As my friends among LDV readers will know, my son is a remarkable boy in many respects. Some say he is a ‘chip off the old block’. I rather think he’s in a league of his own.
His story is dramatic, yet sadly not unique. Three years ago, around his 8th birthday, he was suddenly diagnosed with kidney failure. It was the second time in that he faced a battle for life. As a baby, he and his twin brother were extremely ill with severe twin-to-twin transfusion syndrome. They are one of only a small number of twins to have both survived this condition.
Most of the following year was spent in Great Ormond Street Hospital, including birthdays and Christmas. He suffered multiple major infections, complications and assorted emergencies, and underwent 10 operations in as many months. An attempted transplant was aborted at the last minute due to liver problems.
Finally, on March 19 2013, we had a new ‘green light’. I went first, at London’s Guy’s Hospital, in the morning. At lunchtime, my kidney was rushed across town to GOSH. My son then walked calmly into theatre reading ‘Swallows and Amazons’. The surgical team waited for him to finish his chapter and for him to tell them he was ready.
The operation, I’m glad to say, was a success. It’s now two years on from that day, and the nail-biting weeks that followed to see if it had taken. He had got his childhood back.
But this is where the story gets really interesting…
Whilst in hospital, my son met a number of children in similar situations. However, some had been on the transplant waiting list for up to 5 years. Most didn’t have a compatible or sufficiently fit living relative, while others had rejected previous organs (the average lifespan of a transplanted kidney is 12-15 years).
What they needed a kidney from a deceased donor. And there simply wasn’t one available.
So, just 6 weeks after his own transplant, my son took matters into his own hands. He launched a national campaign of his own. He wrote to hundreds of leading public figures – starting with politicians – urging them to lead by example and sign up to the new online NHS Donor Register (sadly the old donor card is no longer accepted). At the age of just 9, he was going on live radio and being interviewed by the press to make the case for reform.
His campaign took off faster than even he had expected. Within a few weeks, he had won the public backing of David Cameron, David Blunkett, Andy Burnham, Hillary Benn, as well as our own Simon Hughes and Tom Brake.
He was invited to address a lobby event for MPs organised by the NHS during National Transplant Week. He reduced many in the room to tears with his story. MPs broke off from official engagements in order to be photographed with him.
As a result of his courage and determination, Kidney Kids was born – the first UK-wide charity to support children, and their families, who are fighting kidney disease and failure. It has connected children, siblings and parents from every corner of the UK. Living with kidney disease is terrible, but feeling you are fighting a battle alone is many times worse.
One thing that quickly became clear in early discussions was that the current donor registration system needed radical overhaul. There is a big gap between the number of organs needed and the number of available donors. Three people will die in Britain today because the transplant organ they need won’t reach them in time. That’s 1000 avoidable deaths every year.
Moreover, there is also a big gap between the number of people who are willing to donate organs, and the actual number of people registered as donors. The vast majority of people – over 90% – say they are willing to have their organs donated after their death to someone in need, according to polls. Yet under the current system, only a minority – around 30% – are on the list of consenting donors.
So has the time come to consider switching from an ‘opt in’ to an ‘opt out’ system in the UK? Several countries in Europe have already done this. Scotland is considering it. And, later this year, the system will be introduced in Wales for the very first time.
The introduction of the ‘opt out’ system in Wales this December follows lengthy public consultation and an awareness-raising campaign. Under the new system, the right of those who object to organ donation, for whatever reason, is protected. Their wishes and freedom to choose will be respected in full.
The debate as to whether ‘opt out’ should be rolled out in the UK is not new. A review of the current system was ordered by the government 8 years ago. The Organ Donation Taskforce found that countries using a presumed consent, or “opt out”, system had far higher donation rates. Britain was not in the top 10.
However, nothing came of the review. And tragically, another 8,000 people – children among them – have since died whose lives could have been saved.
There is now a new challenge. The gap between the potential number of lives saved and the number of available organs is likely to grow yet further. Thanks to recent advances in science, there are now growing opportunities for performing life-saving transplantation procedures for serious conditions.
There are many laudable registration campaigns, not least by the NHS Blood and Transplant unit. The British Transplant Games was set up to help promote greater awareness of the need for organ donors.
However, the opt-in system in and of itself can no longer be expected to bridge the current gap, much less address the growing deficit. Organs are currently donated from just 1% of deceased people each year, while healthy organs from half a million people are cremated or buried.
As a result, if you’re waiting for a liver, there is now a 20% chance that it won’t reach you in time. For heart patients, the figure is higher. Being on the waiting list is today an increasingly risky game of Russian roulette. There are currently 7,000 people in the UK waiting for a lifesaving transplant.
That is why I, and many other families whose children have received or are waiting for life-saving transplants, firmly believe the time has come to replace the current donor registration system. We hope that Liberal Democrats everywhere will join our cause.
In the meantime, we can all do 2 things: first, ensure we are properly registered on the NHS donor database; second, we can raucously cheer on the brave and brilliant – and often downright bolshy – children who, like my son, will be competing at the British Transplant Games this summer.
* Ed Goncalves is Director of KidneyKids UK and was Lib Dem candidate for Rugby at the 2015 General Election
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22 Comments
I have no problems with an ‘opt-out’ system. Hope this gets put to Parliament this term.
Let’s take a look at this proposed legislation change.
A young motorcyclist has just had an accident. He never bothered to engage with the register, or un-register process as far as transplants were concerned. He has a serious head injury, and is in an ambulance on his way to hospital.
Whilst his heart is beating, his next of kin, are his mother and father. On the journey to hospital, his heart stops. Under this proposed changed legislation his next of kin now becomes *The State*.?
Questions :
~ Is that draconian legislation change appropriate, or even liberal, now that the young man’s views cannot be ascertained?
~ Will ‘The State’, who has taken forced ownership of the body, now pay the funeral costs of the bits it doesn’t want to harvest?
~ Will there be provision for the mother and father to take The State to court, if they can show that their son would not have wished his organs taken, despite his not engaging with the un-registering process?
~ Just because *you* may be ok to have your organs harvested, is it not a tad draconian to switch the assumption, and force it on everyone unless they engage with this registering process?
Norman Lamb just tweeted to say he agrees with switching to ‘opt out’. Thank you very much
Ed, I am full of admiration for your son and all you have done as a family to highlight this. I agree with you.
Tim Farron just tweeted to say he also agreed. Shall we take this to conference??
As someone who has carried an NHS donor card for over 40 years I very much agree with opt out, I always have.
This time last year I was lucky enough to benefit from a stem cell transplant thanks to the NHS and their brilliant staff.
It was also thanks to the Athony Nolan organisation who tracked down my donor (a young man from Germany who had to go through a 5 hour operation to donate the stem cells from his blood).
I learned that Germany provides most of the donors for the people in the UK lucky enough to have this treatment.
Don’t tell UKIP.
I agree completely with John Dunn. Although this seems to be a good idea on first reading, there are profound ethical questions raised by it. I am reminded of the case of a baby who was born profoundly disabled last year, because his mother decided not to have an abortion. Seconds after he died, he was whipped away by staff to remove his organs. In that case, at least the parents gave consent.
In this case it is worse – No informed, freely given consent.
If a person who dies has forgotten or never got around to registering objection, dies – the state will ‘presume consent’ – and take out their organs.
Just imagine the effect on relatives in finding this out – in what sense also is this giving any respect to the body of the person who had died? The state simply removes organs ‘for other uses.’
Why should this party remove the principle of ‘informed consent’? The answer it seems is utilitarian reasons. That to me, is not ethical.
Instead, there should be renewed efforts to launch a national information and education campaign to inform people about organ donation. Let people decide for themselves – it’s their body and their right to give informed consent.
Ed, can I suggest that you talk to Alex Cole-Hamilton in Scotland. He put a motion to Scottish conference, I think. I can put you in touch via email if you like.
Like others, i’d be concerned about the ethical issues at hand, specifically the idea that the state has automatic rights to your body upon death. This obviously has other grave implications and the end point of such an assumption is not necessarily a pretty one. It seems to be a basic violation of property rights.
That being said, I am indeed an organ donor myself, and have done so through informed consent, and would encourage others to do so too. There is a lot more can be done to improve the voluntary register, I would suggest integrating it with almost every government service and application as a choice. Sign up for a driving license? Get asked. Passport? Get asked. Benefits? Get asked.
It’s not perfect, and I sympathise with those on the register, but neither am I convinced the right answer is the state assuming ownership of my body without my informed consent.
Andrew Emmerson
I couldn’t agree more. I remember as a child there was an enormous national campaign launched and organ donor cards were widely available and heavily subsidised on the media. This method gives people a chance to be informed before giving their consent. I think the publicity has been sadly lacking in recent decades,
I do wonder how those who might advocate the right of a woman over her own body to have an abortion for example, could possibly reconcile themselves to the principle of presumed consent by the state over each person’s individual body. People are fallible – they forget, they do not get around to opting out. What are we saying by pushing for opt outs? Sorry, you forget or delay and the state has the right to take your organs seconds after death…
Informed consent is absolutely essential, not presumed consent.
Each person’s body is their own. It does not belong to the state.
To be fair to Ed Goncalves,.. this sort of proposed legislation seems to crop up every few years, and I accept that it is suggested for very worthy and humanitarian reasons, but unfortunately, it is seen only through the lens of emotion. Only until you view it through the lenses of,.. ethics, legality, and just plain logic, do you see what an illiberal ‘can of worms’ it opens?
And,…If you’re still not convinced how bad an idea this is,.. is it not worth going back to 2001, to the time when the grotesque events unfolded around the Alder Hey scandal?
http://news.bbc.co.uk/1/hi/1136723.stm
Andrew Emmerson has the best answer, when he suggests getting organ donation forms printed on the back of *every* government document. In fact why not go further on Andrews excellent idea, and get other consumer based companies on board with this,…. printed on the back of milk cartons?,… Printed on the back page of Christmas cards,.. Birthday cards,.. etc?
Ed, it was your living kidney donation that saved your son. Focusing on trying to increase deceased organ donation is not the best way to solve the shortage of kidneys for the 80% of the people on the organ waiting list who are waiting for a kidney. (The other 20% are waiting for other organs.)
Living donation is the best option for everyone concerned.
There have been over 400 kidney donations by strangers in the UK so donating is not dependent on having close friend or family ties with kidney patients.
Why not promote living (altruistic or otherwise) organ donation? The chances of dying in the right circumstances to donate after death are 1% regardless of consent issues so living donation is the most practical solution to the organ shortage.
See you at the British Transplant Games!
Ed, what a fantastic, inspiring and moving article. I have long been in favour of moving to an opt-out system. I believe that it is coming, and when we eventually do introduce it, people will soon afterwards be asking, ‘did we ever NOT do this??’ I understand the concerns of people like John, Helen and others, but surely their excellent ideas about putting ads on all government papers and milk cartons could work equally well with an opt-out system (with such adverts inviting/reminding people to opt OUT, instead of in). In addition, yes by all means lets have a massive government information campaign telling people they can opt out if they want to, with funding given to churches and other groups to run their own campaigns if they want to. Make it a question on the national census, and the electoral registration system, and have a tickbox on driving licence and passport applications. Have as many safeguards as you want. But lets start saving some of those thousands and thousands of lives that will otherwise be needlessly lost.
Politically, there is a great opportunity for our party here. We need to claim this issue and make it our policy before someone else does. I say, take it to conference.
@ TonyJ
With respect, this is not about the worthiness of the transplant program. This is a serious legal step change being proposed, about who owns your body up to the point of death, and consequently, who owns the cadaver, in the seconds and hours into death? Just because you are ok with organ donation, does not give you [or the State], the right to ‘automatically enlist’ everyone else? These are not trivial or academic questions, which are being belligerently put as obstacles in the way of someone who justifiably needs a heart and lung transplant. Do not use emotion as a guide to legislation. Consent is the legal,.. and liberal way forward.
I would rather see a major campaign on television and and on printed advertising to encourage people to sign up as donors, and I say that as a registered donor. Far too few people know or think about organ transplantation.
It would seem at least worth trying such a campaign before taking the illiberal step of changing the law to give the state so.e kind of assumed right over our bodies in case of an unfortunate early death.
I am totally opposed to this. My own brother is alive because of a heart transplant. I carried a donor card from a being a teenager and switched to the donor database when that was created. However if we move to an opt out system I shall do just that and opt out! That for no other reason than to push back against an increasingly overbearing state.
Ed, no wonder you are so proud of your son. He truly is a remarkable young man.
I would have moved heaven and earth to get a transplant for one of my children had they needed one. I would and they would do the same if one was needed by one of my grandchildren. The idea of those children waiting for transplants is saddening.
Reluctantly though, I don’t think that I can agree that the way forward is an ‘opt out’ approach, (for reasons already given). In my opinion, there really needs to be a massive sustained campaign to stimulate consideration of ‘opting in’.
Your post has reminded me to get all my family and friends to look into putting themselves on the register if they haven’t already done so. Life is so busy for people these days, so without reminders of the value of such a move, people probably don’t have the idea at the forefront of their minds and fail to put it on their ‘to do’ list.
I am fairly positive that your son’s story will in itself have increased the number of people prepared to opt in.
Great post Ed. I followed your story at the time. Your son is inspirational.
Of course there are moral issues about moving to an opt-out system but I think it’s clear that this is now the best way to go.
Let’s try to make this party policy and save more lives.
I believe in recycling, so please re-use any part of me when I stop using it..
– actually I am thinking we should have the recycling symbol tattoo on our wrist, where it can be easily spotted, instead of carrying some card or logging onto a cumbersome database.
Well done Ted and young Ted. Away in Italy at the moment but will make contact on return.
For the record I had a liver transplant just over four years ago in Edinburgh and will be eternely grateful to the family of the donor. It has allowed me to walk three daughters down the aisle, and a bit less profoundly, to vote for our next Leader.
In my case it was sudden non-alcoholic liver failure. On the waiting list for over fifteen months – over twenty emergency admissions to a & e. Third time lucky – first two matching organs not suitable. Not a lot of fun for me and infinitely worse for the family. My pal Jim. Hume MSP was a great support as were colleagues on Scottish Borders council and of course Mike Moore.
The labour MSP Anne mactaggart – with Jim and cross party support – has a bill before holy rood now. Happy to send details. Two things I ask for …. Before ruling out this change try to get the facts from Anne’s bill. Second – it would be great if a lib dem mp could introduce a similar bill at Westminster. Norman lamb would be the perfect sponsor.
Also it’s time we tackled the root causes of alcohol and obesity. If we can ban smoking in public places we can apply that to alcohol. Boris got that right on the tube so why not the trains ? Time to tackle minimum pricing as well. It did not help when a recently retired lib dem mp supported a reduction in spirit duty in last year’s budget.
Enough for now – with the editor’s permission a fuller article to follow. … And sorry, john Dunn your views would not have been especially welcome in ward 206.
‘alcohol. Boris got that right on the tube so why not the trains ‘
I hadn’t realised this, but it came to my notice when my local line was transferred from Abellio to TfL Rail two months ago. Among the new notices in the carriages was the ban on drinking alcohol or carrying open alcohol containers.
Agree with others, an opt-out system isn’t the panacea it is being made out to be.
Remember in this country, as we don’t carry id cards, nor are we tagged or chipped:
1. How can we determine that any given body isn’t from someone who has opted out?
2. Are foreign nationals who visit this country, without a passport in their pocket, deemed to have automatically opted-in?
With an opt-in and donor card approach, we have much greater certainty over what an individual person’s wishes were (although it isn’t improbable for a donor card to be slipped into an accident victim’s pocket…).