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.