Researching organ donation

Friday 11 October 2013, 20:31

 EastEnders Backstage Team EastEnders Backstage Team

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!

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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.

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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.

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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

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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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  • rate this
    +2

    Comment number 1.

    I am disgusted with the way the storyline was portrayed it was completely unbelievable and an insult to us people who have to live with this disease everyday . You have let us down and have put people who are considering live organ donation off . I'm not usually a person who would complain but you could have done this storyline justice !! If it was a cancer story line you would have dragged it out for months yet organ do organ donation gets 3 weeks ???? FUMING

  • rate this
    +5

    Comment number 2.

    Apparently we all could look forward to a great Autumn on the show ??? were half way in and there has been nothink great happening,Phil's car crash was dull , Peggy's return was a disappointment. and the current kidney transplant story is boring .Storylines need to move quickly ??? ummm that is why we have had the same stoyline between Janine and Michael dragging on for weeks just like the Lola custody battle storyline [ witch by the way was one of the worst storylines the show has ever done ] they say it is the first time people night hear about kidney donation so it's essential we get the key points across. ??? I have seen no scenes with Dexter sitting down with the doctor and go in to depth about the process .I have learn't no more about Kidney donation .Just another bad written storyline.

  • rate this
    +3

    Comment number 3.

    As someone who has had End Renal failure - Stage 5 with kidney working at 5% percent only and also had a live donor transplant you had generalised the disease and not explored it fully. Instead you have shown people that ESRF is nothing, just a walk in the park, instead of the trials they go through when having dialysis, feeling worse after when going home and waiting for an average of year or 2. Even though I had a life donor from my brother the tests and transplant took a year and a half, not 3 weeks! You really haven't developed the script that it is needed for this and by doing this, you just generalised it and people will forget which is a shame as organ donation is so much needed.

  • rate this
    +3

    Comment number 4.

    In the beginning I was pleased that Eastenders were doing a storyline on organ donation, but by the end of it I was extremely disappointed. It doesn't take three weeks for the entire process, it takes at least 6-8 weeks and the donor has to have extensive tests before the operation goes ahead and they have to see a psychologist. They can't just speed the whole process up because the recipient doesn't want dialysis, it was so unrealistic. If they were hoping that it would persuade more people to become altruistic donors, I can't imagine they succeeded. They didn't give enough information about life after donation and they didn't promote enough that living with one kidney is possible and would likely make no difference to your life. Overall, I think they let people who suffer everyday with kidney disease down and they were better off without this dismal depiction of their experiences.

  • rate this
    +2

    Comment number 5.

    i have suffered end stage renal failure myself and i am and have been on dialysis for ten years now. i feel the show has shown dialysis in a really bad light and the same goes for organ donation. all the negativity that has been portrayed in this storyline about the donation of kidneys is making the hard work thats been done to raise awareness and encourage people to become donors take a step backwards. there doesnt seem to have been many positive comments made about what dexter is doing for his father, only about the poor quality of life that he will have with one kidney. and i agree about the time scale of the storyline, other storylines get dragged out for weeks/months but this one seems to be getting rushed through. also, at the end of the programme i was dissapointed to see there was no "if you have been affected by the issues brought up in this episode" and no help or advice lines.

  • rate this
    +1

    Comment number 6.

    As someone who has gone through Renal failure, Dialysis and a Transplant, I find this storyline totally unrealistic and will probably put some people off going on the organ donation register It could have been handled a lot better but it's just rushed if only real life Renal Patients could get transplants this quickly!! Also why isn't the Organ donation register details show at the end of each episode ? Where as when other illnesses or issues are dealt with then a number is shown at the end of the show it's as if you don't want to raise awareness or something

  • rate this
    +2

    Comment number 7.

    There are 5 transplants in my immediate family, live donors and dead ones and the way you have shown this on eastenders is diabolical. If the bbc want to highlight live donor transplants they will have to do better than this as its my opinion that all you have done is put people off , I have been involved in some way with all my relations transplant and it certainly took a lot longer than that to get transplant and also you have now made it that live donors take a turn for worse which will just put anybody off being a live donor, I am not saying that it doesn't happen but you could have had a successful one so maybe other people would donate. There is no way you have done kidney transplantation any favours in fact you have made things worse

  • rate this
    0

    Comment number 8.

    I'm just at a loss to know why the BBC gets it so wrong when it comes to kidney disease, dialysis and transplanation. First Holby City tried it and failed miserably and now Eastenders. What a huge disappointment this has been - another waste of time. Patients with renal failure have been let down by the BBC - shame on all of you responsible for putting this programme on air.

  • rate this
    0

    Comment number 9.

    As a transplant patient I think this story is totally incorrect
    Milions of people watch this program it takes months of blood test and health
    Checks for the doner heart checks scans and consolations with doctors to make
    Sure you really want to donate.
    And the way dexters been behaving they would never let him donate
    And with Sam needing dialysis and refusing it he would be dead within a month
    I know some people will say it's not real it's only a tv program but with some thing
    As delicate as this they should get it it right I just hope it turns out ok for both of them
    If something happens to dexter it would put people off donating

  • rate this
    0

    Comment number 10.

    i've only just had a transplant 3mths ago and my brother had his 6mths ago and all i can say is what ever hospital they go to has an amazing kidny transplant walk in clinic if only it was that easy in real life. my brother had a live donor and if i remeber right it took him months before it happend and he had loads of tests and blood tests meetings with all sorts of proffesional not one dr appointment and then op! It annoyed me how rush this story has been and the no if you been affect bit at the end that they do for others! also kidney diease is hell to live with and any doctor that would let a man that sick not fully realize who it means not to have dialysis aslo whats wrong with pd and hd? if he was as ill as they showd him surly they would have explained how his heart would beat irraticaly and speed up from the pottasium and how the phosphate would harded the blood vessels and the fluid would drown him whilst making him so tired he'd just sleep but nope he seemed ok part from passing out twice dispite being really ill and with out treatment. i'm 26 was on pd at kidney function 2% i didnt eat, drink or move i just slept its all i could do. surly that shows how poorly this has been done! waterloo road managed to do it so much better! This is the second time i feel they have frightend people from transplants this and holby shame in waterloo rd he didnt get a transplant that could have been the bbc's saving grace.

  • rate this
    +1

    Comment number 11.

    As a living donor this storyline has made me ashamed to be a lifelong fan of EastEnders. Timothy states that, "I gave a lot of advice; the most important being that the choice is transplant or dialysis, not necessarily transplant or death," yet it was made to appear that the only way Sam could survive would be to have a transplant. I believe that dialysis was mentioned in a passing comment atone stage but never touched upon again. A storyline involving diaysis for a few weeks whilst Dexter went through the testing process would have been a little more realistic. IT also would have shown the audience why a transplant is a much better treatment option than being hooked up to a machine for so many hours a week.

    Obviously this is all redundant when one considers the fact that the counselling/psychology session - which all living donors have to have before their donation can be approved by the HTA - would have picked up on the fact that the relationship with his dad was practically non-existent and definitely not a healthy lifelong affair.

    Yes, it is good when a soap acknowledges chronic illnesses other than the obvious, but it's not good when they portray them in such a way that trivialises the issue for those that live with it day-in and day-out. In this case it made live donation look far too easy, it gave the impression that without a transplant Sam would die and it didn't address the other options available.

    To be honest, if I was Lisa or Tim I would be embarrassed to admit that I had worked with the EastEnders team on this storyline. I'm embarrassed to be a fan of the show and can't wait for this storyline to crawl under a rock and be forgotten. It would have been such a better storyline if it had been done with well-established and loved characters and we could have seen it through from beginning to end and actually educated folk as well as entertained them.

  • rate this
    0

    Comment number 12.

    Disgusted Holby was rubbish at kidney donation and now eastenders talk to people that live with renal failure and the months it takes for testing for living donors and years for a deceased donor and the uncertainty of life day in and out different options of dialysis and how it effects marriages families. Having waited over three years and tried all sorts of dialysis. The toughest four months of my life have been trying to keep my gift of life from rejection.

  • rate this
    0

    Comment number 13.

    I feel you have rushed this storyline and done the subject no justice at all. I was on dialysis for 11 years until I got a transplant this year. But if I was just about to start this would have terrified me , also Dexter would never have been rushed in this way to be a donor it can take months to get all the tests and counselling not weeks . I'm upset that living donors will now be scared off. It's just all so unrealistic , I feel you have missed the chance to help people with CKD.

  • rate this
    +1

    Comment number 14.

    i agree with everything that has already been said, the bbc should be ashamed of how they have portrayed kidney disease and the transplant/donation process. i hope they are going to right this in the coming weeks.

  • rate this
    +1

    Comment number 15.

    I have read all the previous blogs and agree with each and every one of them - Eastenders, you have let us down. My husband is currently going through tests to go on to the "paired pool" list as he is not a direct match for me (which I think makes him one amazing human being). The testing and the counselling is so so important - the lack of time information and consideration given to Dexter to help him make this decision and to make sure he is completely aware of everything and 100% fit I found quite distressing as I know how much time and care has been shown to my husband and that in turn is comforting to me . . . Definitely got this one wrong Eastenders.

  • rate this
    +1

    Comment number 16.

    Eastenders needs stop showing this storyline in a negative way. Sam should live after dexter donates his kidney. this will encourage people in the future to donate kidneys, as they will know this transplant is not as dangerous as people think. if this storyline stays negative then people will be scared to commit to a kidney transplant, which will lead to people like sam not getting a new kidney...this will make these people die and you could say that Eastenders are to blame.

  • rate this
    +1

    Comment number 17.

    As an Eastenders viewer I feel no connection whatsoever with any of these three characters. Quite honestly, I wouldn't care less if they got killed off tomorrow. Why have their pictures even been used to head the Eastenders website? They are pointless boring characters who need to be axed as soon as possible. I love watching characters like Ronnie, Roxy, Kat, Phil, Max, David and even Lauren. Characters like this are the only ones keeping me tuning in. I hate Tamwar, Poppy, Fatboy, Carl, Alice and I really hate watching the Hartman family as you can see, they are so boring to watch. I can't wait for EE to axe a lot of these characters because I'm getting fed up here. After that brilliant couple of weeks showing Phil's car crash and the return of Ronnie Mitchell, Eastenders has already gone down hill through focusing on this stupid kidney donation storyline. Truthfully, I just don't get it. I've watched EE for years and it upsets me to see it doing so badly. It has never been third in the ratings. Yeah, occasionally Corrie would beat it, but Emmerdale is different and more serious matter. Time to do something fast in my opinion. Let's just hope and see if Dominic Treadwell Collins can improve things, because I'm starting to get annoyed now! Also you need better advertisements in my opinion! When Ronnie and Roxy first arrived in the square the promotion was brilliant. You need to take inspiration from some of the adverts shown around this time.

  • rate this
    +1

    Comment number 18.

    My mum is due to give my brother her kidney after a year of tests & for the record there was no hesitation from her to do so. My brother was diagnosed last October 12 and has been in dialysis since Jan 13. He is very lucky to be having the transplant after just over a year. As a family members I have found it very difficult to watch this disappointing storyline as I feel that all you have done is frightened thoses patients on the transplant list & their families. Of course we know all the risks involved but we are trying to remain positive at this difficult and frightening time but you have just added to the anxiety. I agree with the other comments we are trying to get my people on the donor register but I think you will have scared those people off with all the negatively shown so far. It would have been nice if you could have dragged this storyline out like all the others mundane storylines to at least show what patients really go through. Lets hope Eastenders has not done too much damage for Organ Donation.

  • rate this
    +2

    Comment number 19.

    I expect Sam will coming bouncing back onto the square all better. A bit like Tracey Barlow on coronation Street, who never takes a tablet, or mentions going to the clinic and has no side effects from her medication ! Wish my Tx was that good !

  • rate this
    +1

    Comment number 20.

    This storyline was poorly researched and I believe it will set back the great work that live donor co-ordinators do to attract BAME donors. I donated my kidney 2 months ago, and although Dexter's emotions were in line with what I was feeling, the real pain and emotions come from AFTER the surgery. I'm shocked that he had slipped into a coma and needed a transfusion...you have made it look 10 times more dangerous than it really is. It's a clean operation, and you go through months of tests to make sure everything goes smoothly. It's difficult enough to get BAME groups to carry a donor card, yet alone to decide to give someone the gift of life as a live donor. You should take more responsibility for your storylines and how impressionable Eastenders can be for some people. Thanks for putting live donation back 20 years instead of highlighting the gift of life that it actually is.

 

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