Anne, 51, donated into the UK Living Kidney Sharing Scheme in order to allow her brother to receive a kidney transplant. She shares her story below.
I am a mother of two children – Liam who is 28 and Nicole, 26-years-old. I am married to my husband Olly and we all live in the small town of Yate just outside Bristol. I am the second eldest of four children. I work as an Administrative Assistant in a local School.
My younger brother, Ross, was on the NHS waiting list for a kidney and so needed to be on daily/nightly peritoneal dialysis. As a family some of us were tested to see if we were a match for Ross; our dad was a direct match but after lots of tests there were complications so he was unable to donate. I then received a call from the Donor Team at my local hospital to ask if I would consider donating through the UK sharing system. I didn’t hesitate to put myself forward.
After a few months of various scans and blood tests we then received the amazing news that I had been matched with someone and a match had been found for Ross!
My brother lives in Leeds so on the day of the surgery I had my operation in Bristol and he had his in Leeds. My procedure was completed in a few hours followed by a three-night stay in hospital. For the month leading up to the surgery I was eating healthy, not drinking any alcohol, and getting lots of exercise to make sure I was in the best shape for the operation.
I was told that the recovery time would be around six weeks, however three weeks after the surgery I went on a cruise around the Med. (This holiday was booked well before the operation and I felt fine to go, so we did.) The holiday was a great help in my recovery as I spent the whole week relaxing.
Since the surgery I don’t feel any different, I live my life exactly the same way I did before I donated.
I would recommend becoming a living kidney donor to anyone who is able to. It’s such an easy thing to do, yet you are literally saving someone from a life of dialysis. to everyone to put themselves forward for donation, it’s such an easy thing to do yet you are giving someone back their life.
Rich, a GP living in Nottingham, donated his kidney as part of a chain, meaning three people no longer require dialysis.
Emma donated her kidney to a stranger eight years ago after first seeing a story about non-directed donation on TV four years previously.
She says: “I decided at Christmas time in 2015 that I would make an appointment to see my local Transplant Team at the Churchill Hospital in Oxford. The team there were amazing and supported me every step of the way.
“After months of assessments and tests, I was given the go-ahead to proceed with the donation and less than a month later I donated my left kidney to an anonymous recipient.”
Emma considers the donation process as a “great life experience” and says that she was happy to help someone who needed the kidney more than she did. In fact, she states: “I’d do it again if I could!”
Emma’s main words of advice are “do your research and definitely speak to your local transplant team”
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More than 1,000 people in the UK have now donated a kidney anonymously to a stranger on the transplant waiting list as a living donor since the law was changed to allow this in 2006. This is known as non-directed living kidney donation.
Neil Cheetham, 59, from Devon became the 1,000th non-directed – or altruistic – living kidney donor in 2023 and his donation took place at University Hospitals Plymouth NHS Trust.
Neil said: “I had a close friend who needed a kidney transplant. Ultimately, sadly, he was unable to receive a kidney, but it made me realise that there are many people whose life could be transformed by living donation. I met a local man who had already donated a kidney to a stranger many years ago and he helped to guide me to through the process. I have no regrets at all. I’m as healthy as ever, regularly cycling, walking and climbing. Just six months after the donation I visited Norway to climb there. It feels good to have been able to help someone in need.”
Bob Wiggins, Chair of charity Give a Kidney, said: “There are currently most than 5,500 people in the UK in need of a kidney so we’re encouraging everyone to consider if you could be a living donor. Many people still don’t know that any healthy adult can volunteer as a living donor. Thanks to these 1,000 donors countless lives have been changed for the better. Not only that, but together this group has already saved the NHS millions of pounds over the cost of keeping the recipients on dialysis treatment.”
We are delighted to announce that the Make Your Mark campaign and Donate a Kidney website have officially launched today as part of the Robert Dangoor Partnership for Living Kidney Donation.
The national campaign and website will raise awareness of living kidney donation and help more people understand what it means to be a living donor, as well as supporting and guiding prospective donors and their friends and family through their donation journey.
The website will also support the NHS as Transplant Units now have access to new resources for living kidney donors and a place where those considering donating can be referred to for further information and advice before starting their journey.
Please take some time to have a look around the site and make your mark by following and spreading the word!
You can also find Donate a Kidney UK on X, Facebook, Instagram and LinkedIn using the handle @donateakindeyuk
We look forward to sharing further updates with you as we continue to develop this life-changing programme with the goal to help shorten the waiting list, save lives and improve the wellbeing of countless people.
We would also like to say a huge thank you to supporters and colleagues at Give A Kidney who have been involved in the lead-up to the launch as your help and support is hugely appreciated.
Give a Kidney has joined forces with Kidney Research UK to deliver the Robert Dangoor Partnership for Living Kidney Donation, made possible by businessman and philanthropist David Dangoor CBE. David is particularly invested in raising awareness of living kidney donation having previously donated a kidney to his brother Robert.
The programme has been created to raise awareness and encourage more people to consider donating a kidney during their lifetime. The programme will be working closely with support from NHS Blood and Transplant.
Together, the two charities will endeavour to help more people understand what it means to be a living donor, as well as supporting and guiding them throughout their donation journey.
The Need for Living Kidney Donation
Worldwide, kidney disease is the tenth most common cause of death. The number of people developing kidney disease in the UK is growing significantly, driven by risk factors such as diabetes, heart disease and high blood pressure, alongside health and economic inequalities. Despite ongoing work to encourage kidney donation from both living and deceased donors, around six people die each week in the UK waiting for a transplant.
A kidney transplant is the very best treatment option for people with end-stage kidney disease, however, people wait an average of three years for a transplant. For many, the wait is even longer than that.
Enabling more transplants could help patients with kidney failure to come off or avoid life-limiting dialysis treatment, whilst a Kidney Research UK report published in 2023 found that increasing rates of transplantation, specifically from living donors, would not only improve outcomes for patients but would also be cost-saving for the NHS.
For a kidney transplant to be successful, a potential donor needs to be a suitable blood and tissue match for the recipient. The chance of finding a suitable match for people on the deceased donor transplant list is higher from a donor of the same ethnicity. Currently, people from Black and Asian backgrounds are more likely to need a transplant but less likely to donate, so patients often wait longer for a suitable donor to be found. Living donation enables potential donors to come forward and be tested, increasing the opportunities for everyone waiting for a transplant.
Impact of the initiative
The Robert Dangoor Partnership for Living Kidney Donation will launch in January 2024 with a portal to help support people who want to learn more about living kidney donation. The website will take prospective donors and their families through each stage of their donation journey, from the first stages of considering donating through to their surgery and support after leaving the hospital.
To accompany the new site, a nationwide promotional campaign will be launched to further raise awareness of living kidney donation.
The campaign will highlight the impact that donations have on recipients and their lives, sharing stories and experiences of previous donors and healthcare professionals.
About David Dangoor
David DangoorCBE is a British businessman and philanthropist. He spent his early life in Baghdad as part of Iraq’s Jewish community, arriving in the UK with his parents and his brothers in the 1960s, where he was educated at Carmel College and Imperial College London.
He then worked as a systems analyst at IBM, before joining the family property business.
David’s philanthropy is focused on healthcare/medicine, education and promoting inter-faith harmony.
In 2019 David donated a kidney to his brother Robert, whose kidneys had been damaged by medication for another illness. Sadly, Robert died in 2022 and David and his family wanted to do something positive in his memory.
Discussing the project, David Dangoor said: “The growing rate of kidney disease here in the UK and across the world means that every day, lives are lost to this awful condition.
“Having donated a kidney to my brother, I know first-hand that it is perfectly possible to do this and to carry on living a normal life.
“Through this programme, I hope that more people can learn about the possibilities of living donation and may be inspired to take that step and change the life of someone living with kidney disease. Our ultimate vision is that no one should die waiting for a kidney.”
Get involved
The Robert Dangoor Living Kidney Donor Programme wouldn’t be possible without the help and experience of previous living kidney donors and supporters of the cause.
More information will be available early in 2024 on how you can contact the programme team and support this life-saving cause.
I first came across the concept of altruistic kidney donation – or non-directed kidney donation – while reading a book on ethics in my last year at university. As soon as I saw the words on the page, I knew that this was something I was going to do. I read hurriedly on, scared I’d come across some factor that might prevent me from donating but the more I learned about donating to a stranger, the more certain I became that it was right for me.
I decided to think about it for a year, which morphed into three years due to the Covid pandemic. I researched the topic extensively, including accounts of people suffering from kidney failure. It’s a brutal situation for them, so I felt determined to go ahead.
After a year of medical tests, I was approved to donate and a match came up instantly. By then, I had informed my close family: they were all immediately supportive apart from my mother who was terrified. It took some patience to bring her to my point of view. I took six weeks off work, told my extended family and went ahead.
Donating was remarkably easy: I was put to sleep and when I woke up it was done! I spent four days in hospital and then about a month living like an old man and taking constant naps. By the time I returned to work it would often feel like it was all a dream, then I’d reach for the scars on my stomach and remember it was real.
Day to day, life has not changed at all with one kidney. In the long-term, it shouldn’t have any major impact on my health. I feel I paid an absurdly small price given how much I was able to help others.
This seems to be not an uncommon experience: I met another altruistic donor who gave at 65 who said it has changed very little to his life in the last decade. The worst part about donating a kidney is you can only do it once. I feel there is a lack of awareness about the possibility of donation, how great the benefits are and how surprisingly easy it is.
I feel deeply grateful to all the medical professionals who enabled me to donate as well as to my fellow donors in my chain. At this point in my life, donating is the best thing I’ve ever done.
We were delighted to welcome old friends and more recent donors to our recent Supporters’ Event in the beautiful setting of the Crypt in the Green, St James’s Church in Clerkenwell, London.
Guests heard an interesting update on the new Living Kidney Donor Programme from Emma Hotchkiss, Programme Lead, and Eoin Buckley, Marketing and Communications Manager, both from Kidney Research UK.
Lisa Burnapp, Associate Medical Director, Living Donation and Transplantation at NHS Blood and Transplant was sadly unable to be with us, however she updated guests on the latest in living kidney donation via a video link.
Dennis Carver gave a summary of the hugely successful Transplant Tour which raised £34,000 for our charity this year and guests were the first to hear that there will be a new Tour in 2024! So if there are any cyclists out there, please get in touch as Dennis is looking for new riders for a new route next year.
Our final guests to present were members of the Black Living Donor Choir, all of whom have donated a kidney to a family member. They shared the importance of raising the profile of living kidney donation within in the Black community.
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Our huge thanks go to everyone involved in the recent Transplant Tour that has raised to date more than £34,000 for our small charity.
It was an extraordinary undertaking by Dennis Carver, who organised the event AND who has donated a kidney to a stranger and the team, including supporting members.
The Tour called at seven transplant units from Edinburgh to Oxford and received a wonderful reception at each unit from staff and volunteers. Mayors were also in attendance at Newcastle, Sheffield and Leeds, as well as Olympic cyclist, Ed Clancy OBE.
We are so grateful to each and every one of you!
If you would like to donate, the team page is still live.
Through our partnership with Kidney Research UK developing a new living donation programme, we are looking for a driven and passionate living kidney donation relationship manager who will play a pivotal role in developing and stewarding relationships to raise awareness of living kidney donation and increase the number of people considering living donation in the UK.
Details:
Contracted to Kidney Research UK Peterborough office with the flexibility for hybrid working
Salary £29,000 – £34,000 FTE depending on experience
Full time: 37.5 hrs per week or will consider part time (minimum of 30 hours)
Be a part of an energetic and vibrant team who are driven by the desire to improve the lives of people living with kidney disease. Our vision is the day when everyone lives free from kidney disease.
As the living kidney donation relationship manager, you will be the first point of contact for prospective living kidney donors, living kidney donors, kidney patients, kidney recipients and their friends and family. With full training and access to healthcare professionals you will provide high quality personalised support, information and advice or signposting to other services on a range of subjects relating to living kidney donation. You will also be responsible for the recruitment and management of a small team of volunteers.
You’ll have experience in providing information, advice, and support in a virtual setting with the ability to communicate clearly, think on your feet, make decisions, and take appropriate action.
If you are interested in the position, please complete the online application form and submit your CV, together with a supporting statement, outlining why you are interested and how you feel you meet the requirements.
We are committed to providing equal opportunities for everyone and encourage applications from all sections of the community.
Closing date: Tuesday 31 October 2023
Interviews will be held on Wednesday 8 November 2023
We’re delighted to announce that we have been awarded significant funding for a new five-year programme around living kidney donation.
Kidney Research UK, the country’s largest kidney research charity, will join forces with the Give a Kidney team to deliver the programme. Together, the two charities will deliver the UK-wide programme, from helping more people understand what it means to be a living donor, to supporting them throughout their donation journey.
The programme has been made possible thanks to the vision and support of businessman and philanthropist Dr David Dangoor, who has personal experience of living kidney donation, having previously donated a kidney to his brother Robert.
Kidney Research UK and Give a Kidney will also be working with NHS Blood and Transplant throughout the planning and delivery of the programme.
Worldwide, kidney diseases are the tenth most common cause of death and in the UK more than 5,000 people are currently on the waiting list for a kidney transplant, which equates to over three quarters of people waiting for a transplant. Despite ongoing work to encourage kidney donation from both living and deceased donors, around six people still die each week waiting for a transplant.
Bob Wiggins, Chair and Trustee of Give a Kidney, said: “This is a milestone moment for Give a Kidney and one which is the culmination of much of the work undertaken over the past years by ourselves and our previous staff and trustees. This programme will allow us to amplify much of the work we already do to raise awareness and support potential donors, but with significantly increased resources behind it and will also give us the opportunity to take a significant step forward with new activity. We are thrilled to be working in partnership with Kidney Research UK who bring a wealth of expertise, knowledge and skill to the new programme.”
Dr Dangoor, who is known for his philanthropy in areas including education and health, said: “The growing rate of kidney disease here in the UK and across the world means that every day, lives are lost to this awful condition. Having donated a kidney to my brother, I know first-hand that it is perfectly possible to do this and to carry on living a normal life. Through this campaign, I hope that more people are able to learn about the possibilities of living donation and may be inspired to take that step and change the life of someone living with kidney disease. Our ultimate vision is that no one should die waiting for a kidney.”
Sandra Currie, Chief Executive of Kidney Research UK said: “Donating a kidney is literally giving someone the gift of life and many people may still not be aware that they could donate a kidney to a loved one or a stranger and carry on living a normal life. We are committed to driving progress in kidney health in the UK and to transforming treatments for patients, and receiving a kidney donation transforms the life of the recipient. We know that an increase in the number of living donors coming forward could make a lifesaving difference to kidney patients across the UK, and significantly reduce the waiting time for many. We are all so grateful to Dr Dangoor for making this campaign possible.”
Work is now underway to develop the programme, and new resources for donors, in collaboration with key stakeholders and the wider donation and transplantation community.
Many years ago I worked for Social Services and had two clients who both required organ transplants. One, an older gentleman who had had a kidney transplant which had enabled him to continue working; the other, a young man who was waiting for a heart transplant. He died before a heart became available leaving a wife and two young children.
Since then I have known people who have had kidney transplants so know what a life-changing experience it is for them. I also know mothers who wanted to donate for their children and the great disappointment when they were not able to. I always wondered why only family members could donate so when I picked up a Give a Kidney leaflet about non-directed living kidney donation I immediately knew that was what I was going to do.
Unfortunately the Covid pandemic slowed things up a bit but once I had my initial meeting with the transplant team, things moved very quickly to get my various tests done. One of the team at Give a Kidney was able to talk me through the various stages, which was a great help as I had not told anyone except my husband what I was doing.
I found the whole process of going through the tests interesting and everyone was so friendly and encouraging but I never felt pressurised into going ahead with the operation.
I was originally going to donate into the UK Kidney sharing scheme to trigger a chain of transplants, but unfortunately the chain was unable to proceed. Instead, I donated directly to an individual on the transplant waiting list.
On the morning of my operation, my living donor nurse visited me on the ward and walked down to the operating room with me and visited me each morning while I was in hospital. I felt great the day after the operation but unfortunately was sick the following day and nauseous for a few days afterwards.
Once home my recovery was quite quick and a few months later I was back to doing everything I had done previously. The response from friends and family since the operation has been very positive and having been told that the kidney had been successfully transplanted into the recipient I am so pleased and feel lucky that I am well enough to have been able to donate a kidney.
I work as a Research Manager in a large London university. I have been a blood donor since I was 17 and participate in many research trials at work and I have always enjoyed helping people in this way. It felt very natural to enquire about altruistic donation. In fact, quite a few people were not very surprised when I told them I was doing it! I did consider waiting a few years, but after some consideration, I decided that right now was a good time for me – I had no dependents to look after during the recovery process and was able to work from home, instead of rushing back to the office.
From my initial enquiry, the whole process took just under nine months. I found the whole work up and tests incredibly interesting and I feel quite the nephrology expert now! Tests included blood and urine tests; an ultrasound; MRI scan; ECG test; chest x-ray; and glomerular filtration rate test. I also had a telephone consultation with a psychiatrist and an interview with a representative from the Human Tissue Authority.
During the test checking how evenly my kidneys worked, the team was unsure if I would be able to continue – the test showed that my right kidney did over 60% of the work. This is usually a reason that donation cannot go ahead. However, the team decided to perform the MRI scan, to see if this revealed any reason for my left kidney being less strong. The test showed that the kidney was fine anatomically and would be suitable for donation, though this would mean I was classified as a ‘complex donor’. Luckily however, I was matched in my first run in January, to go into the kidney sharing scheme.
It was then a wait for a suitable surgery date. I found out two weeks before it was scheduled – it then felt very real, arranging sick leave with work and letting friends and family know the date. Yet this anxiety calmed in the days before my surgery, and I felt mentally prepared and fully supported on the morning of the surgery. I was staying with family who live close to the hospital – unfortunately in a case of spectacularly bad timing, my parents were on a flight whilst I was in theatre! I imagine that is not a flight they will remember fondly…
It was my first time staying in hospital and I was looked after very well, from the staff that took an inventory of the belongings on arrival, to the anaesthetist that reassured me on having general anaesthetic for the first time. I woke up a little confused, but luckily not in a huge amount of pain. I stayed in hospital for just one night. I was informed that the kidney had started working straight away in the recipient, which was a huge relief.
I was told my kidney was highly admired when it was removed which was a lovely compliment!
The first week out of hospital was tiring, and I struggled with a lot of bloating due to the strong painkillers, but once I was on light painkillers only, I felt much better. I started back at work two weeks after the surgery, but working from home only so I could rest when needed, and on shorter hours.
I had hand-assisted laparoscopy surgery: two small incisions on my left hip and a slightly larger one in the middle of my abdomen. They have all healed well – though not having a bath for two weeks was tough! I took a daily photo to check they were healing OK, and it is fascinating to look back and see how the body heals in such a short space of time.
My friends, family and colleagues were incredibly helpful, kind and generous, and I have really appreciated how supportive people were during my recovery. People have been really interested in the process. It’s been great being able to bring more awareness about non-directed donation. My living donor coordinator passed on a message from the recipient the day after the surgery to say thank you – that was lovely to receive, and I am so pleased that everything went to plan. I have even more respect and admiration for the coordinators, nurses, doctors and surgeons who make transplants possible.
For me, the experience has been extremely positive – the donor team were incredible, always keeping me well informed and easy to contact when I had queries.
They always made sure I had even the smallest bit of information, so that I was able to make a considered and informed decision. Everyone at the hospital was excellent during my stay. I have also learnt a lot about myself and my own health as well – and would do it again in a heartbeat (if I had another kidney to spare!)
I would strongly encourage anyone with an interest to get in touch with their local living donor team – you are never under any obligation to go through with the donation, but if you decide to go ahead, you won’t regret it.
GP Rich, donated his kidney to a stranger in 2022, after reading about ‘effective altruism’ in an economics book.
I live in Nottingham, but originally from Halifax in West Yorkshire. I moved down to Nottingham for medical school in 2007 and I finished my medical school training there and did my junior doctor work in Mansfield and Derby and qualified as a GP in 2017 and I’ve been a GP since working in and around Nottingham.
I first heard about non-directed altruistic kidney donation in 2017 in a book about economics, ‘Who Gets What and Why’ by a Nobel Laureate called Alvin Roth, and he talked about different types of markets and in particular matching markets. This was the first time I came across kidney donation to strangers and it was in an American context and it just sparked my interest.
I found it quite unusual that I was in the medical profession myself and didn’t know about this until I came across it in an economics book and when I looked it up online on the NHS website and found that we have a similar scheme in the UK and indeed we have for for a few years now.
I’d just qualified as a GP and I had a new job and wanted to get settled into the profession but it never disappeared, it was always in the back of my mind. It was something that for some reason I was just compelled towards doing right from the the moment when I discovered it in in the economics book. I was amazed that I hadn’t heard about it before and that I didn’t know anybody who had done anything like that and for some reason it it just struck me like this is something that will feature in my life at some point but at that point it was not the right time because of my new job.
Then two years later when I felt more settled into my clinical role it just became more of an appropriate time for me to go ahead. So I re-made contact with the donation team at my local hospital, Nottingham City hospital and advised them: “I’ve thought about it for two years now and I’ve spoken to lots of friends and loved ones about it and it seems like it’s something that I want to proceed with”. That’s when appointments were made and investigations were booked and it went from there.
After I returned to the UK from Ukraine that’s when I asked them to continue with the build-up and I was put into a matching run and matched in an altruistic donor chain with three recipients. Leading up to the operation I had some more blood tests met with the surgeon again met with the anaesthetist for a pre-op assessment and the op went ahead. Very soon after the operantion, I was able to get out on on walks every day, going uphill gradually increasing the speed and the distance that I walked.
In recent weeks leading up to the operation I was quite keen to proceed and almost excited to just do this thing because I’d been wanting to do it for so long. Now that it has happened it feels quite normal. I certainly don’t feel like a different person; I feel very satisfied that I’ve finally done this thing and I was lucky enough to match into an altruistic donor chain of three people. We’ve we’ve heard from the hospitals in which the recipients had their donations that they’re doing very well and that’s the only reason that I decided to do this in the first place. That obviously brings an immense feeling of satisfaction as those people, whoever they are, no longer need dialysis three times a week and they can hopefully go about their lives in the way that they that they they would do whatever that involves for them. So that brings me a great sense of satisfaction but beyond that I feel just like I used to. It certainly doesn’t feel like a big thing to me.
People have said things like ‘you’re very brave’ or ‘very generous’ but it certainly doesn’t feel like anything unusual to me and I think that’s a part of the message that I wanted to put out there which is I’m a 34 year old guy, I’m pretty normal – I like football I’ve got friends, I’m a normal guy and this is something that a lot of people might realise that maybe that is something that they want to do in their own lives as well.
I’d say that donating a kidney to a stranger is is a big deal but a temporary big deal and it’s something that normal people just like me can do in a section of their lives and it can bring a huge amount of benefit to the people that receive the kidney and all their friends family and loved ones. So you don’t need to be a superhero, you don’t need to be a mega star of any sort – this is potentially available to a large number of people and I recommend that people think whether or not it’s something that they can incorporate into their own lives.
Funraising Tours is organising the Transplant Tour, a 500-mile cycle ride from Edinburgh to Oxford, to raise funds for Give a Kidney. The Tour will commence on 17 September and take six days. En route, it will call in at transplant centres in Edinburgh, Newcastle, Leeds, Sheffield, Manchester, Birmingham and Oxford.
For more information or to sign up to the Tour, visit Funraising Tours.
In this webinar we will be going right back to the basics of living kidney donation. Our panel, made up of Give a Kidney Trustees, will be answering all those questions you wanted to ask but were afraid to! This is a fantastic opportunity for anyone with any interest in living kidney donation – whether you are just thinking about whether to donate or maybe you might need a transplant in the future and are considering living donation.
Our wonderful team of experts will start off by asking and answering a series of pre-arranged questions aimed at those with little to no knowledge of living kidney donation. The panel will then be able to answer any questions you may have (although, for obvious reasons will not be able to give specific clinical advice for individual cases).
We know that the process of thinking about donation can be very daunting, and many people have lots of questions and concerns before, during and even after the process. We hope this event will be an opportunity to ask them in an informal and friendly setting. You can choose to remain anonymous should you wish to, and there’s no pressure to ask, if you just want to come along to hear the answers to other people’s questions. The session will be recorded as it will be used as an educational resource in future.
