We've been working hard on Dexter and Sam’s current storyline, examining the reality of organ donation. It's such an important issue, and a topic we felt needed to be highlighted and tackled - and we were determined to demonstrate the process in the most accurate way we possibly could.

We consulted experts with a wealth of experience at every step of the way. Here we speak to Khali Best (aka Dexter Hartman), Timothy F Statham (OBE), Chief Executive of the National Kidney Federation, and Lisa Burnapp, Lead Nurse, Living Donation at NHS Blood and Transplant, about the storyline, and the research behind it.

Khali: The thing is about Dexter, if someone needs his help, he’s always there. This is the first year that Dexter has spent with his Dad and he has all these thought running through his head… Will he die? Would it be my fault if he did? Will I ever get to see him again? He doesn’t want to lose his dad again... Ultimately, is giving your kidney to your dad to save his life a good thing? Yes it is!

For this storyline I researched how someone would be after that sort of operation - for example, their mannerisms and how much energy they would have. I also found out how many people don’t donate... I think everyone should help everyone!

Could you explain a bit about diabetes and the effect it can have on the kidneys? Why has this happened to Sam?

Lisa: Over a period of time, usually many years depending upon how well the diabetes is controlled, abnormal or persistently high blood sugar levels can cause irreversible damage to blood vessels, particularly the smaller blood vessels in the body. The kidneys have a large and intricate blood supply and are very susceptible to this type of damage because the nephrons (functional units) are served by this fine network of small blood vessels. When the blood supply is damaged, nephrons stop working properly and so kidney function deteriorates over time. When all or most of the nephrons stop working properly, the patient needs dialysis or, ideally, a transplant to replace kidney function.


What would the quality of life for someone on dialysis be like?

Timothy: Some patients on dialysis have a good quality of life. However, generally the quality of life on dialysis is deemed very poor; most people on dialysis do not feel well and they are restricted in what they can do between dialysis sessions (every second day). They are frequently too ill to work or cannot get employment – many live on benefit. One thousand end stage renal patients a year in the UK choose not to go onto dialysis, or to give up dialysis because it makes them feel so wretched. They are then put onto Conservative Care which manages their death.

Some patients do live for twenty five years or more on dialysis – but they are the exception. The average life expectancy for someone on dialysis is between six and eight years. Many do not do well on dialysis and die in the first year. Without a transplant the patient will stay on dialysis until they die. Three thousand people die each and every year in the UK in need of a kidney. A transplant lasts on average 10 years, then the patient will go back onto dialysis whilst they wait for another transplant.


What is the procedure for family members donating organs?

Lisa: Apart from the benefit to the recipient, the most important aspect about living kidney donation is that it is as safe as possible for the person donating, both in the short and long term. In the short term, the donor must be fit and healthy to undergo major surgery. In the long term, provided that the person is carefully assessed and informed, there is no more risk to them of future illness or kidney problems than for anyone else.

Timothy: A great deal of care is taken when dealing with donating organs... as much as nine months is allowed to ensure there is no coercion and no money changing hands.

Lisa: A great deal of information is provided and explained to all potential donors, even before detailed medical testing is performed. The tests and consultations are designed to assess general health as well as provide specific information about the kidneys. The procedure is basically the same for everyone but will be tailored to the age, health and needs of the donor as appropriate. The risks are very clearly discussed; some risks relate to the individual donor and are discussed on this basis - everyone is different and has different needs.

All donors have the right to withdraw at any stage in the process and will be supported by the transplant team to do so if necessary.

Timothy: If someone does decide to back out then this decision is never revealed, it is simply said that the donor was not suitable.

Lisa: The most important thing is that no family member should feel under pressure to donate and should have the time and space to make the right decision for them.

Is it dangerous for someone to live without one kidney?

Timothy: No. Some people are born with only one kidney. You can live perfectly normally with one kidney, but it is vital that the one kidney is protected from injury and from illnesses that might damage it, or from inherited conditions that may harm the organ. For the recipient of a transplant, with only one new kidney, it is also important to avoid infections or cancer – all of which are more likely because of the immunosuppression medicine taken daily. Fail to take that medicine and you lose the kidney.

After Dexter has his operation, he runs into complications. Is that a common occurrence for patients involved in a donor operation?

Lisa: All operations carry some risk and it is no different for living donation.

The most common risks are usually relatively minor and can be treated appropriately. These include wound, urinary tract and chest infections, which occur in approximately one in three (33%) donors. More serious complications, such as bleeding that requires blood transfusion or blood clots, occur in approximately one in 50 (2%) donors and again the medical team is experienced in dealing with such situations quickly and appropriately.

Why do you think it’s a good thing for EastEnders to be tackling this storyline?

Timothy: To have a soap covering organ donation is fantastic and gives the issue much more publicity than anything else we can do. We need donors; people are dying every day because there are not enough.

Lisa: EastEnders is a well-watched prime time TV drama and we are thrilled that they are covering the topic of organ donation on the show. The fact that they are exploring organ donation in a Black family is especially helpful.

Timothy: Diabetes is much higher in The Black, Asian and Minority Ethnic (BAME) community than it is amongst the indigenous white population – about four times as high.

Lisa: This community in particular are also more susceptible to illnesses such as kidney disease and heart disease, which may result in organ failure and the need for a life-saving transplant. We hope that this portrayal of organ donation will help to raise awareness in those particular communities.

On average, individuals from BAME communities wait longer than the rest of the population for organ transplants. The latest figures suggest that on average Black and Asian patients will wait a year longer for a kidney transplant than a white patient. Three out of ten patients waiting for a kidney are from BAME communities.

Kidneys from living and deceased donors are allocated according to many factors. Blood and tissue type are important considerations and donors and recipients from the same ethnicity are likely to match more closely. As only a small percentage (5%) of deceased donors are from BAME communities, this can delay a suitably matched organ being found for BAME patients waiting on the national transplant list.

We hope that this EastEnders storyline inspires people to want to become organ donors, either while they are alive or after their death. Around three people die each day across the UK due to the shortage of organs and there are about 10,000 people in the UK in need of a transplant. We urge everyone to join the NHS Organ Donor Register and talk to their family about their decision so that those around you know what your wishes are in the event of you potentially being a donor after your death. For further information and frequently asked questions, please visit the living donation pages at www.organdonation.nhs.uk

What advice did you give the story team while they were researching this topic?

Lisa: We worked with the story team to ensure that the content of the story was as factually correct as possible. EastEnders has such a high viewership; it is essential that we get the key points of the story correct. For many people, this will be the first time that they hear about living kidney donation in such depth, so we need to make sure that what they see on TV reflects the real life processes.

EastEnders is a TV drama, and while we are keen to stick as closely to real life as possible, we appreciate that in this context, there is a need for artistic licence and stories need to progress quickly. For this reason we accepted that some of the aspects of the storyline escalate faster and were portrayed more dramatically than they would be in reality.

Timothy: I gave a lot of advice; the most important being that the choice is transplant or dialysis, not necessarily transplant or death. I also explained that, due to the fact this is on a television the timeframe has been shortened as compared to reality.

Lisa: Working with the team at EastEnders has been a positive experience and we look forward to seeing the public reaction to the storyline in the upcoming weeks.

If you have been affected by this storyline please explore what further resources are available in our help and information.

Comments

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  • Comment number 36. Posted by Elaine

    on 22 Oct 2013 11:04

    Please read the letter sent to my MP
    We need a full explanation as to why Eastenders producers have been allowed to transmit such an appalling mockery of kidney failure. We as kidney patients demand a full apology not only from the BBC but also someone who should be fighting our corner Mr Timothy Statham.

    I am writing as I am extremely angry at the disgraceful distortion of the truth regarding kidney failure and transplantation as portrayed in the recent episodes of Eastenders. I understand that it is only a drama but there are now so many soaps using this theme that I feel that it is time that there was a stop on television and media being allowed to distort the truth just for the sake of a dramatic impact and to boost audience ratings.
    I challenge you to step into the street and ask people what do they know about dialysis or kidney transplantation. How do you or the NHS expect organ donation to rise if people are not informed of the true nature of the illness or how transplantation works. We don’t just need organ donors we need intelligent donors.
    In most of the tv shows Eastenders, Hollyoaks Desperate Housewives and Waterloo Road, they portray characters having kidney failure and then receiving a transplant or the offer within a few days or weeks. This is not the case and I feel that the public need to be informed and not mislead about kidney failure .
    In the case of Eastenders they have recently shown a man say that he has a choice about going on dialysis which is not the case, he chose to have a transplant ! Yes who wouldn’t !!!
    If only this were true. I was diagnosed with FSGS in 2001 and refused to be put on the list by Dr Naik until 2006 and only then 6 months after my kidneys had failed ! To see such a misrepresentation of the truth is unbearable. I am not the only kidney patient who has been deeply upset by this story line. In addition to the character having a choice about going on dialysis, his son is then suddenly able to give him his kidney in the time scale of around a week ! Again for real kidney patients there is a long 6-9 month wait !
    Then the father in the soap becomes seriously ill but he is still allowed to undergo the operation. I recently lost a dear friend who had been on dialysis for years, he was called for a transplant but turned away due to the simple fact that his heart rate was too high. Five months later he died. I am fighting for the truth in his memory. if nothing else I would like the BBC to admit that they did distort the truth and apologise for misleading the public and discrediting the suffering that real kidney patients and their families have to go through.
    The point that I found most shocking is that the BBC state that they took advice from Doctors and the NKF a Timothy Statham who should be working for the patients not against them, allowing our dreadful illness to be used as titillation for the BBC viewers again and again, heightening their dramas at our cost!
    If the storyline had been cancer I am sure that they would not be able to extend the truth in such a way, nor would doctors and federations set up to help patients advocate and generate the misrepresentation. Could it be because Kidney failure is suffered by a smaller number of people and therefore, we have no one to fight our corner that the media can run riot with our horrific reality ?
    There are many kidney patients who have been deeply upset by the misrepresentation by Eastenders as seen on the BBC Site I hope that you will be able to raise the question as to why the BBC are allowed to

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  • Comment number 35. Posted by Roy Manaer

    on 22 Oct 2013 10:55

    I am a dialysis patient awaiting a transplant. I have been following Eastenders for many years and I am a dialysis patient awaiting a transplant. I have been watching Eastenders for many years and was absolutely dismayed at the inappropriate way in which you handled the transplant story line. Most of your story lines address situations over several months with a positive outcome, but This very sensitive topic was rushed through over 2 - 3 weeks and you gave the impression to viewers who may be considering donating to family, friends or even strangers, a very frightening insight, focusing on sensationalising the story line instead of the positive outcomes and the gift of life to the recipient.

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  • Comment number 34. Posted by cj

    on 21 Oct 2013 20:27

    As a living donor kidney transplant patient i am very disappointed and some what angry at the Eastenders coverage of Dexter/Sam Kidney Tx story. If you can not give it the time it deserves then dont do a story.

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  • Comment number 33. Posted by klawson

    on 18 Oct 2013 22:53

    Tonights episode just gets worse and worse Sam was in the pub today have I missed somethingwhat a joke

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  • Comment number 32. Posted by Lad

    on 18 Oct 2013 18:05

    Luckily all my friends and colleagues seem to think im doing a pretty good thing as a live donor for my wife. The Eastenders scriptwriters cant have messed this storyline up more if they tried. 90 % negativity all the way. Im sure the Nurse and Chief Exec feel let down also, I cant imagine they agree with how the plot has been acted out.

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  • Comment number 31. Posted by Nasira

    on 18 Oct 2013 09:57

    I was very disappointed with this story line. My family went through the tests and donation process last year and it took us nearly 12 months to go through the initial tests through to the operation. We had numerous visits to the hospital followed by meetings with the consultants before a date for the operation could even be pencilled in. The turnaround in three weeks from tests to donation as shown on the programme was totally unrealistic and this gives a false impression to anyone that might currently be in that situation. The BBC really needs to research into topics such as these more comprehensively and give a true reflection of what is expected or not show the storylines at all. If anything, there should have been a contact number at the end of the programme for anyone that needed additional information.

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  • Comment number 30. Posted by h9k

    on 18 Oct 2013 09:02

    I was quite disappointed with this who bodged together storyline.
    As an ex-diabetic and kidney failure patient i found the almost jokey way that his illness was visualised by his dizzy spells and fainting quite pathetic.
    You clearly have done NO research into what it is like to be both diabetic and have kidney failure.

    This is made more obvious but the way he suddenly found out that he had a kidney problem and that is was suddenly really ba.
    This problem is very progressive and generally takes years, from discovery of the issue to being on a transplant list. I know everybody is different but in my case my kidney function was about 60% when i was diagnosed. I.e. that was when i started to feel like something was wrong. It then took 2 years for my level to come down enough to be added to the transplant list.
    I was lucky enough to have a kidney and pancreas transplant after 10 months of being on the list and am now doing well. I spent 30 years being diabetic and i can tell you that even after a few years you should know the signs when you are not well which make his sudden 'oh i am diabetic' routine even more annoying.
    Please fire whoever researched this and get somebody on board to actually look into subjects before falsely splatting them all over telly. You do more damage than good when you bodge it like this.

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  • Comment number 29. Posted by nunez52

    on 16 Oct 2013 14:37

    It seems that the Transplant folk are to be congratulated on a) raising the BAME issue and b) at least showing that transplants actually work (or do they? we shall see)
    That thereafter the congratulations must stop. It seems as though no one at the Beeb has remembered the fiasco of Tracey Barlow's magical transplant form her 'conveniently killed off' Mums hubbie. What a disgrace that was -- it put kidney disease knowledge back 10 years! It was disaster for renal disease.
    But no one either looked or listened - a common problem these days. If someone had just stopped and thought for a minute about the very false image that the current script is portraying of ESRF.
    In short IF the advisers could not have had a better level of control over the input they should have withdrawn their support altogether.

    This current story line is a travesty and a disgrace. If you cannot better the source of information to the EE fans - best to keep out.
    The joy of participating will be shortlived but the trials of those with ESRF - either those dialysising and thus waiting on 'the List' or those who may be thinking about Live related donoring, will go on For a great deal longer than the miserly 3 weeks shown to date.
    But good luck to those brave souls who continue on down their path - hopefully to restored health

    Transplantation does work. But this programme has not helped one bit.

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  • Comment number 28. Posted by Claire B

    on 16 Oct 2013 13:45

    This is the first time I have ever commented on a storyline but this kidney storyline has made me
    feel so let down and I am really tempted to switch off. I'm relieved others feel the same as me I am
    also waiting for a transplant from my dad and the tests take months not days and believe Eastenders should not tackle a storyline as serious as this if they are not going to do it justice.
    any other storyline drags on for months. Also the characters do not connect with me and feel
    Eastenders has lost its way.

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  • Comment number 27. Posted by Whitcombe16

    on 14 Oct 2013 19:48

    After watching Eastenders tonight I am absolutely furious. My brother who is 17 years old had a transplant last year from watching Eastenders they made out it was so easy. For a start they all should have a plan before having the operation AND tonight I saw SAM out of his bed going to visit Dexter... HE should of be been in isolation. I cannot believe he was out of bed. People who have just had a transplant is highly likely to get diseases/illness (cold, chicken pots) and because the immune system is very weak (after killing the white blood cells to ensure the body accepts the kidney) they are high at risk of becoming ill and therefore should be in the isolation room only seeing immediate family members NOT running around the hospital seeing other patients!!! Eastenders you need to rewrite your script and get a better researcher. Why don't you go to Renal ward at Bristol Children's hospital and then you will understand the reality of what kidney failure and kidney transplant is like.
    Disappointing Eastenders.

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