Welcome to the Dteg website [The Donor Transplant Education Group] - author Graham Brushett
NAVIGATING THIS WEBSITE:
I fully understand that the subject of this website will not appeal to everyone. Most of us do not want to consider our mortality until we are close to dying. Despite this fact 30% of people in the UK (2016) have given this subject significant thought. They have signed the Organ Donor Register organised by NHS Blood and Transplant (NHSBT). This act lets the people close to them know that when they die their organs and tissue can be given to other people to improve or save their lives. I am asking you to consider doing the same.
The home page of this website is designed to introduce the reader to four people. Four people who have had their lives dramatically affected by the donation and transplantation process as it is carried out in the UK. My story is briefly touched on first. I am the tremendously fortunate beneficiary of a heart and kidney transplant. Following me is Hannah. She is desperately waiting for a heart transplant (2016). Very sadly Hannah's survival depends on a person like Jemima. Her parents said 'yes' to donation after Jemima's unexpected and untimely death in 2012.
Finally two year old Hassan Malik completes the home page. Tragically and needlessly he died waiting for a heart transplant in 2006. He is one of the many people who have died avoidable deaths in the UK waiting for a life saving transplant. He is the reason why I urge people to view this website and decide what they would want for their friends and family members in relation to donation and transplants or transfusions. Any of the people mentioned on this page could be you or a person you love. How would you react?
I would like you to challenge your conscience and I ask you to carefully discuss the possibilty of donation with the people who matter to you. My motivation is simple. I want fewer people in the UK to die prematurely as they wait for a life saving treatment such as a blood transfusion, bone marrow transplant or an organ transplant procedure.
In the nostalgic black and white photo above can you spot the tissue and organ donors? Or maybe these finely honed athletes have all received transplants to keep them alive?
You simply cannot tell.
This unlikely group raised a lot of money for the Bolton Breast Scanner appeal over 20 years ago. We played a 'Squashathon' for 24 hours. So presumably we were all pretty fit people. The author of this website is pictured second from the left. My fellow team players at Markland Hill Tennis Club back in 1987 would probably dispute how fit I was! But nobody, including me, would have anticipated that I would need a simultaneous heart and kidney transplant operation 19 years later at the age of fifty-one. But that is exactly what was needed to keep me alive in June 2006. The point that I am making is that even very fit people like the great rugby player, Jonah Lomu, can go into premature organ failure and need a life saving transplant.
I started this website about eight years ago. I have added various sections in a piecemeal manner. My 2016 New Year's resolution is to bring the website up-to-date and reorganise it. In August 2005 I was listed for a heart transplant. Ten months later in June 2006 I actually received a simultaneous heart and kidney transplant. Curiously, I was the only person in that year to have these two organs implanted in the same operation. The picture to the left shows me about 3 weeks after my 14 hour opration carried out by Professor Yonan and his team. I was kept in an induced coma for nearly three weeks because I began to bleed systemically. I am so grateful to my donor and his family. Thanks goes to all the blood donors that supplied the 50 units of blood I needed to survive the transplant procedure. Their acts of humanitarian kindness are immeasurable.
I knew very little about the donation and transplant process prior to being listed. So, after my operation, I carried out considerable research to learn why so few people benefit from the life transforming medical procedures that saved my life in 2006. My intent has always been to help people understand more about the process of donation and transplantation in the UK. This is not a clinical/medical guide, but hopefully a discussion of issues that all people can understand and perhaps influence to improve our transplant rates in the UK. In the last 9 years I have been a lay member of the Organ Donation Taskforce clinical sub-committee on Presumed Consent. This led to my membership of the UK Donation Ethics Committee. For over five years I was the chairman of the Bereavement and Donation committee at the Salford Royal Foundation Trust hospital; one of the best hospitals in the country. In addition I served on the Donation committees at the main hospitals in Bolton, Wythenshawe (UHSM) and Preston (the University Hospital Lancashire). My journey through the transplant process can be read in the 'Recipient Experiences' section of the website. [Link to my transplant journey web page]
It has been a very interesting journey to discover what C21st medicine can achieve in the UK when it works at its best, but this is not always the case.
There are a range of challenges in creating a website that discusses transfusions and transplants. It is not a very high profile subject today. The life saving benefits of these procedures are largely now taken for granted in the twenty-first century by a public that expects health care providers to deliver medical miracles on a routine basis.
Not everyone accepts the desirability of improving or saving lives by sharing and exchanging bodily materials. There are religious and cultural reasons that alienate people from participating in the donation and transplant process.
The social context in which these medical processes are carried out evolves as values and attitudes change in relation to social solidarity and civic responsibility. Legal reform can alter the landscape of what is permissible within society. Ideas that were once regarded as immoral or unethical can become legitimate and accepted behaviours or vice versa e.g. slavery, capital punishment, smoking in public, gay rights, apartheid etc. The development of medical expertise can make feasible what was previously seen as unthinkable e.g. cancer survival rates, open heart surgery, dialysis following kidney failure, retrieving a heart from a deceased person and transplanting it into another human being to keep them alive.
I do talks and presentations to many students each year in sixth form colleges and university to encourage young adults to open their minds to the positive benefits of donation, transplants and transfusions. (I also address meetings of health care professionals, WI groups, Rotarians etc.) My bias on this subject is obvious. My life has been extended by 10 years (so far - 2016) thanks to 50 units of blood/platlets plus a heart and kidney transplant. I think the vast majority of people would want the same successful outcome as me if one of their major organs failed prematurely. Regrettably too many people in the UK die each yearbecause British attitudes arre not as supportive towards donation as they could be.
My motivation behind this website and talks is to minimise needless and avoidable premature deaths. Why? When I have been so close to death back in 2006 it helps you to realise how precious life is. Quite simply life and health are the most precious entities we all desire. Forget the bangles and designer labels, the fast cars and exotic holidays. They are worthless if you are dying.
My view is simple. If life is the most precious thing you have, saving a life is probably the most precious thing you can do. In my view, to save a life is the most humanitarian and benevolent act we can all carry out. The donation of blood, stem cells, tissue, bone marrow and organs save lives. Virtually everyone can do this great deed. But so few actually do in the UK.
What would you want for yourself or a person you love? Would you want your life saved through donation? This is clearly a matter of conscience and compassion. I use the table below in my talks with the public to encourage a discussion of how compassionate we are in modern Britain. How do you respond to the 12 ideas? Try to clear your mind of any prejudices or pre-conceived ideas you might have about life saving activities. Try to work out your own stance on each question. Incidentally, very few people can say 'yes' to all 12 points.
I'm guessing that you have weighed up each option. OK, it is a hypothetiical exercise. None of us adamantly know how we might react in reality. Would I jump from a big ocean liner to save a person from drowning? Probably not. But if it was my son and I stood a realistic chance of saving his life without losing mine I would do all in my power to help him. If expert support was available, rationally, I would hope they would do the job better than me and much more quickly.
We will all react differently to the situations outlined in the table. If my mother needed a liver lobe to survive I would be the first in the queue. But I am not a tissue or blood match to my mother. No-one in my family is a match. So we would depend on a complete strangers either to be a living donor, (there were 38 living liver lobe donors during 2014-15) or a deased liver donor. (There were 919 deceased liver donors in the same year.) But the demand for organs always exceeds demand. We are all dependent on the generosity and benevolence of each other. This becomes very apparent when discussing the 'Compassion' table. My concept of compassion is very 'elastic'. For example I do buy the 'Big Issue' when I'm shopping in Manchester, but only one! If I was really compassionate I would offer the homeless 'Big Issue' seller the spare bedroom in my home. Selfishly my level of compassion limits me to buying one 'Big Issue' when I could do so much more.
Most students who I discuss these issues with would definitely give a pint of blood to the person sat next to them. But very few donate blood to the NHS. Some even say they would donate a kidney to a friend in their group. Or to a relative. But they struggle with the idea of donating a kidney to a complete stranger. Yet about 100 people do this each year in the UK.
After a lot of thought some students accept that donation after death is the least problematic approach to donation, because they will know nothing about it. They would be dead. Yet in the UK just 31% of the population are registered to be donors after death (about 21 million people) and just 0.2% of deaths in the UK occur in circumstances enabling organ donation after death to take place. In the audit period 2014-15 the UK had 1,276 deceased organ donors.
The big question is what would you want for your family? I would want a loved one to receive a life saving transplant or transfusion. So I feel I have a responsibilty to positively endorse donation. Reciprocity is essential if we want fewer people to die waiting for an organ transplant. But would you say 'yes' to donation if a relative died in circumstances where this is posssible. How compassionate are you?
Please consider the circumstances of the two young people below. Please put yourself in the position of the families involved. What if either of them was your daughter, best friend, sister, auntie or next door neighbour? What would you want for them?
Hannah volunteered to help the NHS Blood and Transplant (NHSBT) education team to promote education for young people about the process of organ donation and transplants in the UK. This is a very generous act considering that Hannah has been diagnosed with heart failure and has been kept alive for the last 3 years by a left ventricular assist device. This pump is commonly known as an LVAD. It is a pump to help the left side of the heart pump oxygenated blood and valuable nutrients around the body to support the function of other vital organs. The device is battery operated and is used as a 'bridge to a transplant'. It is not a substiutute for a heart transplant, but it can temporarily support a person with heart failure.
Hannah is now 21 years old and she lives in Portsmouth desperately waiting for a heart transplant. Hannah was always fit and healthy, but then everything changed as she finished her second year at university. Aged 19, she suddenly lost her appetite, felt sick, lost weight and couldn’t get her breath. Tests revealed that her heart was three times the size it should be, which was a complete shock to Hannah, and she was rushed into intensive care at Harefield Hospital, where she was diagnosed with dilated cardiomyopathy. Her heart was too badly damaged to function effectively.
With the LVAD fitted she has been able to return to work. But life is really tough for her. Hannah has already had four false alarms for a transplant, where the donor hearts were not perfect matches, but considers herself lucky because she can lead a relatively normal life. She graduated from the University of Winchester and is now a full time administrator in the Probation Service. But along with hundreds of other people waiting she knows that only a heart transplant gives her a real chance of leading a normal life. She is in a very stressful situation.
To find out more about Hannah please visit the NHSBT education section at the following web page. Click on the following link: [The NHSBT web link] Hannah discusses her situation in the video footage below that she put together with NHSBT. I cannot imagine what it must be like to be called four times for a heart transplant. I was lucky following my second call. I sincerely hope 2016 brings her early joy.
I sincerely hope that most people that have read about Hannah's situation would want the very best for her, namely a heat transplant as soon as possible. But for that to happen a person has to die in hospital that matches the tissue type and approximate size of Hannah. The potential deceased donor must have been on a mechanical ventilator so that oxygen supplies are sustained to the vital organs up to the point when the medical team believe that no further medical treatment will save the patient's life.
Tragically a brain aneurism led to the premature and untimely death of Jemima in March 2012. The medical team at the Bristol Royal Children's Hospital declared Jemima brain stem dead four days after her brain haemorrhage caused her to collapse. The mechanical ventilator continued to supply oxygen to Jemima's vital orgnas even though legally she had been confirmed dead. The medical team is then able to discuss the possibility of tissue and organ donation. Jemima's parents. Harvey and Sophy Layzell will have been devastated by the death of their daughter. It is a very traumatic time to discuss the very sensitive subject of donation.
I cannot begin to know how they must have felt. The nature of my talks to students requires me to think about the same situation with my own son. He has told me he would want to be a donor after he dies. He has signed the Organ Donor Register. I believe I would honour his living wish to be a donor even though I would be beside myself with grief. Jemima's parents supported her wish to be a donor. The family had previously had a conversation about the subject and Jemima had made her positive wishes known. This conversation is vital because relatives can then make their decision about donation in the certain knowledge of what the person wanted.
Nearly 60% of families support the request for donation after following brian stem death, but this falls to 50% when a person's death has been caused by cardio-respiratory failure
What would you say in these circumstances? Have you discussed this with your friends and family? When families do not know what the wishes of their loved ones are, they tend to say 'no' to organ donation after death. Whereas 90% of families say 'yes' if they knew that their deceased relative had signed the Organ Donor Register.
Regardless of the circumstances of the death it is invariably a stressful time. It must be very difficult to discuss very sensitive issues such as organ donation at such a tragic time for the medical staff and the next of kin. Jemima's parents took the compassionate and humanitarian view, saying 'yes' to organ donation.
Since Jemima's death her heart has gone to a five-year-old boy, a 14-year-old was given her lungs and her liver was split between two boys, aged ten months and five. Two people, aged 19 and 24, received her kidneys, a 40-year-old man was given her pancreas and her small bowel has changed the life of a boy aged three-and-a-half. Two further people had their sight restored through corneal donation.
Harvey and Sophy Layzell said: 'Jemima was lovely - clever, funny, compassionate and creative.'
'She was a brilliant artist but planned to be an author and left many poems, songs, stories and also serious thoughts about her life and the world's problems and delights.'
'She also thought about and discussed death and said of her wish to be an organ donor when she died. Eight people have benefited from vital parts of her beautiful young healthy body, including five young children.'
'Jemima was much loved, was fiercely loyal and cherished her many friends and sister Amelia.'
'She has left a lasting legacy and example to others, by being an organ donor.'
I have spoken to many donor families over the last ten years since my double transplant. Not a single family has ever regretted saying 'yes' to donation. They agree with Jemima's parents that donation allows a lasting legacy with which to remember their loved one. This is perhaps the only positive action to grow out of such tragic circumstances.
You can read more about Jemima by clicking on the following link: [The Daily Mail link].
Jemima's parents have set up a trust to honour her memory. Please take the time to visit their wesbite by clicking on the following link: [The Jemima Layzell Trust link].
I would like to thank this special family for what they have done for society and for so many recipients and their families. Their decision has transformed so many lives.
The picture to the right shows Hassan Malik. He had developed a form of pneumonia that had seriously damaged the left side of his heart. His parents, Yasir and Shanaz, took him to the local hospital in Carlilse where is quickly became apparent that Hassan needed the specialist cardiac support that could only be found at Great Ormond Street in London or the paediatric heart experts at the Freeman Hospital in Newcastle.
In the picture you can see that Hassan has been attached to a Berlin Heart pump by the cardiac team led by Mr Leslie Hamilton in Newcastle. It is just visible beneath Hassan's hand. Shanaz (his mum) is smiling because the pump is buying the medical team time to help her only child. To give Hassan a future life he really needed a heart transplant as quickly as possible. The Berlin Heart pump is a vital, but only a temporary measure, while the family wait for a matching heart from a deceased donor. The pump is merely a bridge to a transplant.
Ominously Hassan required a second Berlin Heart pump procedure. No heart had become available that would match Hassan in terms of his size and tissue type.
Tragically Hassan died during the second procedure leaving his family devastated. The medical team caring for Hassan hoped that they could give him a great future, but British society did not respond quickly enough or in sufficient numbers. Even today, ten years on, the demand for organ transplants exceeds the supply. As a result deaths occur that are needless and avoidable. If a suitable heart had been donated Hassan may still be alive today. I simply do not want this tragedy to happen to you or someone you care for.
I am very grateful to Sue and Richard Cansdale for allowing me to refer to Hassan's story that first appeared in the book entitled "Transforming Lives" in September 2006. This was produced after Sue and Richard suffered the death of their 22 year old daughter in 1998 when she was involved in a road accident. Sue and Richard agreed to the donation of two of Zoe's heart valves that helped two little girls. Her corneas helped to restore the sight of a 24 year old man.
You can purchase their lovely book by going to their website called the Legacy of Life. Please click on the following link: [The Legacy of Life charity web link].
The Donor Transplant Education Group
Which consent and registration process is best for organ donation in the UK?
1. Why is legal and medical consent so important?
2. Why change the opt-in system?
3.To Opt-out or Opt-in?
4. Alternative consent systems
a. Routine Salvaging
b. Priority consent
c. The Israeli system - preferred consent
d. Conditional consent
e. A Social Contract
f. Mandated Consent
More donors needed?
Challenging Transplant Issues
Solid Organ Donation
Human Tissue Donation
How to become a Donor
1. Denise Darvall - first heart donor
2. Leroy Hobden -kidney
3. Matthew Ferguson - multiple organs
4. Living kidney donor Maggie
5.The Herrick twins - kidney
6.Charlotte Pestell - eggs
7.Mark Jackson - sperm
8.Barbara Ryder- kidney
9.Charlotte Newall - blood donor
10.Laura Ashworth - multiple organs
11.Daniel Harrison - tissue donor
12.Adam Rogers - multiple organ donor
Heart recipient stories
Lung recipient stories
Kidney recipient stories
Liver recipient stories
Other recipient stories
Waiting and hoping
And time ran out
The Organ Donation Taskforce - ODT