Interviewer: Quentin Cooper
Interviewees: Mr Andrew Ready, Trustee and Lead Surgeon of TLC, Dr Shazia Shabir, Consultant Nephrologist at University Hospitals Birmingham and TLC volunteer, and Dr Dwomoa Adu, Consultant Nephrologist at Korle Bu Hospital, Accra, Ghana, and TLC Trustee
Welcome to this TLC podcast in which science journalist, writer and TLC Patron Quentin Cooper is joined by the TLC team to discus the ethical concerns surrounding living donor transplantation. They discuss topics including operating on a fit and healthy person (the donor operation), unique ethical challenges that arise with transplantation, rewards and coercion, the Human Tissue Authority, family pressures, the need for an independent Ethics Committee, potential members of a Transplant Ethical Committee, the option for the donor to pull out of the transplant, examples of ethical hurdles that may arise in a transplant case, the global issue of organ trafficking and The Declaration of Istanbul.
Special thanks to the Creative Media team in Birmingham for the recording of this podcast.
Long Term Care of the Recipient After Transplantation
Interviewer: Quentin Cooper
Interviewees: Dr Lukas Foggensteiner, Consultant Nephrologist at University Hospitals Birmingham and TLC volunteer
Welcome to this TLC podcast in which science journalist, writer and TLC Patron Quentin Cooper is joined by the TLC team to discus the long term care of the recipient after a living donor kidney transplant.
They discuss topics including the prognosis for a transplant recipient, monitoring of the patient, the risks of acute rejection, long term complications, post transplant diabetes, the need for multi disciplinary care and the long term benefits of transplantation.
Special thanks to the Creative Media team in Birmingham for the recording of this podcast.
Care of the Recipient in the First Six Months After Transplantation
Interviewer: Quentin Cooper
Interviewees: Dr Shazia Shabir, Consultant Nephrologist at University Hospitals Birmingham and TLC volunteer.
Welcome to this TLC podcast in which science journalist, writer and TLC Patron Quentin Cooper is joined by Dr Shazia Shabir to discus the care of the living donor transplant recipient in the first six months after transplantation, and how the care changes over this time.
They discuss topics including the concerns during first 48 hours after transplantation, dialysis after transplantation, frequency of monitoring, routine for pain management, how long it takes for a recipient to return home after transplantation, information and support needed by the patient when returning home, medication needed by patients in the short and long term, clinic visits, dietary requirements of the patient following transplantation, check ups and tests for kidney function, blood glucose etc, side effects of the medications, how long it takes for a patient to get back to ‘normal life’ and back to work, pregnancy and fertility following transplantation, how the patient feels after 6 months of transplantation, renal counselling and anxiety following transplantation.
Special thanks to the Creative Media team in Birmingham for the recording of this podcast.
Nursing Care of the Recipient Immediately After the Transplant Operation
Interviewer: Quentin Cooper
Interviewees: Paulette Williams-Jones, Senior Nurse at University Hospitals Birmingham and Lead Nurse for TLC, Mr Andrew Ready, Trustee and Lead Surgeon of TLC
Welcome to this TLC podcast in which science journalist, writer and TLC Patron Quentin Cooper is joined by the TLC team to discus the nursing care required for a patient after having a transplant.
They discuss topics including what happens when a patient wakes up after a transplant, how patients feel after a transplant including pain levels and analgesia, key monitoring of the patient after the transplant, concerns of the patients, building a rapport with patients, the importance of adapting to local conditions, the importance of teamwork and the challenges faced all over the world.
Special thanks to the Creative Media team in Birmingham for the recording of this podcast.
Preparing the Operating Theatre for a Living Donor Kidney Transplant
Interviewer: Quentin Cooper
Interviewees: Gordon Evans, Operating Department Practitioner (ODP) at University Hospitals Birmingham and TLC Volunteer
Welcome to this TLC podcast in which science journalist, writer and TLC Patron Quentin Cooper is joined by TLC ODP Gordon Evans to discus preparing the operating theatre for a living donor kidney transplant.
Special thanks to the Creative Media team in Birmingham for the recording of this podcast.
Interviewer: Quentin Cooper
Interviewees:Dr Adnand Sharif, Consultant Transplant Nephrologist at University Hospitals Birmingham and Secretary of Medical and Ethical Campaign Group: Doctors Against Forced Organ Harvesting, and Mr Nick Inston, Clinical Service Lead for Kidney Transplantation at University Hospitals Birmingham and Clinical Lead for TLC.
Welcome to this TLC podcast in which science journalist, writer and TLC Patron Quentin Cooper is joined by the TLC team to discus the preparation of the patient for living donor kidney transplantation.
They discuss topics including the benefits of living donor kidney transplantation over cadaveric transplantation, assessing someone who could benefit from a transplant, contraindications to transplantations including cancer, what happens to the failed kidneys during transplantation, the position of the transplanted kidney, the logistics of having 2 operations (donor and recipient) one after the other, the optimum time for a patient to have their transplant, preparing patients physically and emotionally for a kidney transplant, managing expectations and the multi disciplinary team approach to the work up of the patient.
Interviewer: Quentin Cooper
Interviewees: Mr Andrew Ready, Trustee and Lead Surgeon of TLC, and Dr Lukas Foggensteiner, Consultant Nephrologist at University Hospitals Birmingham and TLC volunteer.
Welcome to this TLC podcast in which science journalist, writer and TLC Patron Quentin Cooper is joined by the TLC team to discus the key role of the living kidney donor and their management before the transplant.
They discuss topics including who can be a living kidney donor, the medical tests and assessments that need to be undergone, the acute and long term risks of the donor procedure, managing expectations of the donor and the recipient, the donor work up, the practicality of donating a kidney, the choices of the donor through the different stages working up to the transplant and the experiences of the donor after the transplant.
Special thanks to the Creative Media team in Birmingham.
Interviewer: Science journalist and facilitator Quentin Cooper. Interviewees: Founder and Chief Executive of the Transplant Links Community Dr Jennie Jewitt-Harris, Nick Inston Lead Surgeon of TLC, Professor Paul Cockwell Lead Nephrologist for TLC and Andrew Ready: Medical Director, Trustee and Lead Surgeon of TLC.
Welcome to this TLC podcast, in which the team discuss the global problem of Renal Failure globally, the profile of a typical person with kidney disease, the importance of an early diagnosis, steps we can take to reduce our risk of developing kidney failure, the stages of kidney failure, the two types of dialysis (Peritoneal and Hemodialysis), the vital role of the kidneys, the economic factors involved in treating a patient with kidney failure, why some countries do not yet have a kidney transplant program, the percentage of patients who receive the treatment they need, why kidney failure is a ‘hidden epidemic’, the importance of providing patients with the option of transplantation as well as dialysis and the difference that TLC and transplantation can make to a country.
Hello, I’m Quentin Cooper, welcome to this TLC podcast. Now just in case you’ve somehow got here without being too aware of what TLC is, it stands for Transplant Links Community: a charity set up by a group of British doctors in 2007 to save the lives of children and adults suffering from kidney failure in low and middle income countries by performing transplant operations and teaching key skills to local surgeons. If you want to know more about TLC itself, what in the world it does and where in the world it does it then that’s all covered in another of these podcasts, but in this one we’re going to focus on what TLC has been set up to combat: kidney disease. And by ‘we’, I mean founder and Chief Executive of the Transplant Links Community Dr Jennie Jewitt-Harris, Nick Inston Lead Surgeon of TLC, Professor Paul Cockwell Lead Nephrologist for TLC and Andrew Ready: Medical Director, Trustee and Lead Surgeon of TLC.
00:55 Quentin
Andrew, let’s begin with the basics, how big a healthcare problem is renal failure and how does this vary globally?
01:02 Andrew
Well without putting specific numbers on it I think it could be said that chronic kidney disease is globally is a very significant health problem. In every country in the world there is probably a growing group of people who are developing kidney disease and in many of those it will progress to what we call End Stage Renal Failure (ESRF) and that is where both kidneys have ceased to function and at that point either some very specialised treatment is required and I think we’ll be coming on to talk about that, or if that isn’t available then unfortunately they will die. It is that simple. The number in every country is now very significant and I think constitutes a real healthcare crisis. Around the world it probably differs in it’s aetiology, in the cause, but there are some principle problems like diabetes and hypertension which are prevalent throughout the world which are some of the major causes. But a common factor is that whatever the cause, it will progress towards this end stage situation and those are the patients who I think at the moment the facilities in many parts of the world are lacking to support and so there is a disproportionate number of people dying from renal failure in low- and middle-income countries as opposed to what we would colloquially call the developed world where most patients with renal failure will receive treatment and very few people die of the renal failure itself because they receive treatment such as dialysis and transplantation.
02:40 Quentin
So Paul, it’s worth stressing it’s the same disease around the world but it’s not the same probable outcome.
02:48 Paul
Yes that’s right. So if we look at the developed world we find that around 1 in 7 of the adult population have Chronic Kidney Disease and as Andrew has just said that usually sits with other chronic diseases and of course chronic diseases in combination are going to be the big challenge for the healthcare systems over the next 30 years or so, but it sits with the other chronic diseases of Diabetes, high blood pressure, cardiovascular diseases in particular, and those diseases come together and we’ll get kidney problems. The kidneys are usually a marker of what’s going on elsewhere in the body, so the small blood vessels in the kidneys start to respond to disease elsewhere and start to respond in a way that causes damage within the kidneys themselves.
So when that happens in the developed world you find that people are identified relatively early and the Diabetes is treated accurately in most cases and their blood pressure is controlled and as a consequence of that the disease itself (whilst it’s an important part of the problem the patient has) is not necessarily at high risk of going on and developing End Stage Kidney Disease where the kidneys have failed and treatment is required to keep the patient alive by dialysis or transplantation.
In low- and middle-income countries we just don’t know how much kidney disease there is. We think there is an equivalent amount of kidney disease to that which is seen in the developed world but there’s no real population level information on that. As a consequence, there are big international drives at the moment with surveys going on in low- and middle-income countries to try and identify both the amount of kidney disease and the infrastructure to support its management, it’s care when people have it and where there is information it looks as if the overall amount is the same, there’s few patches where there is information, but the infrastructure to support the care of people with kidney disease is absent in a large majority of low and middle income countries.
05:05 Quentin
So there isn’t the infrastructure, there aren’t the procedures, there aren’t the skills and there isn’t even the data to know about the scale of the problem.
05:12 Quentin
Jennie before we talk a bit more about what we do about this is there anything we can actually say in terms of the profile of a typical person with kidney disease, how is it affected in terms of age, gender, income, part of the world, or as best as we know is it widely distributed across all of the above?
05:31 Jennie
I think it’s quite widely distributed. There are many different causes of kidney failure and it doesn’t discriminate according to where we live or even what age we are. It affects both adults and children and everyone across the world.
05:49 Quentin
Paul as I understand it you can get kidneys suddenly stopping functioning fairly rapidly, acute kidney failure, or over a longer period which is CKD – Chronic Kidney Disease. And acute kidney failure sounds like the greater problem, is that right?
06:09 Paul
Acute kidney failure is likely to be the greater problem in younger people in low- and middle-income countries, but acute renal failure itself where you get sudden decline in kidney function then impacts on Chronic Kidney Disease. So people who get an acute illness, they get septicaemia, often lose kidney function. Most people who get it will recover some kidney function but don’t necessarily recover back to normal so they’re left with Chronic Kidney Disease and they then become more vulnerable to having a subsequent drop in kidney function so they ultimately end up with complete kidney failure. Acute kidney injury as it’s known (the medical term for this is acute kidney injury) is also a huge global problem because the large majority of acute kidney injury in the low- and middle-income countries is not accurately managed and certainly younger people die of acute kidney injury because they die of kidney failure in low- and middle-income countries because there is no dialysis treatment in the large majority of low- and middle-income countries for the large majority of people who get acute kidney injury, whereas in the developed world you get treated with dialysis treatment if your kidneys stop completely and usually then after a period of time with dialysis the kidneys will recover for most people who get acute kidney injury. So you’re right Quentin; it’s a big international problem. Again, like with chronic kidney disease it’s difficult to quantify. We don’t know what the figures are like but there’s no doubt it contributes to the death of a significant number of younger people.
07:48 Quentin
Nick it is worth stressing this point at the risk of hammering it home too much: what you get is bad but where you get it may be even worse and it’s that lack of the procedures, the infrastructure, the awareness, the severity of the condition, the health services, the skills etc that can turn what can be in one country possibly a mildly debilitating condition into a fatal one.
08:10 Nick
Absolutely. And in terms of Chronic Kidney Disease in the Western World this is often picked up on blood tests early on before anyone has any idea they’ve got chronic kidney problems. And the progression to what we call End Stage Kidney Disease where you need dialysis, where you need some form of renal replacement therapy such as a transplant is picked up early and that’s slowed down and a lot of patients now in the Western World will not end up at End Stage Renal Failure despite having what we call Renal Failure or Chronic Renal Failure and the stages of that which we can classify. If that’s not picked up in, as we’ve said, the low- and middle-income countries, these patients might end up with chronic renal failure where it was otherwise avoidable with programmes such as screening programmes and the like, so, you’re absolutely right, it’s not only the severity of the disease but what we want to do is stop people getting to end stage, but if people do get to end stage, replace that renal function with either dialysis or with a transplant.
09:01 Quentin
However early you get a diagnosis though that’s not of much use unless there is something going to be done to act upon that diagnosis.
09:08 Nick
Sure, but some of that is life-style modifications, some of that is management of such things as hypertension, high blood pressure, Diabetes and some of the other causes, and some of the causes in the lower income countries in the developing world are not the same as the ones we see in the Western World and these are often diseases that could be treated earlier and we could avoid people getting to the point of End Stage Renal Failure.
09:31 Quentin
We should probably, before we get onto things like dialysis and transplants to: are there things that any of us can do to lower our chances of being affected by kidney disease?
09:42 Paul
There are simple things: following a healthy lifestyle, eating a balanced diet, particularly avoiding a lot of added salt to diet, avoiding processed and fast foods, avoiding fast carbohydrates. There’s a great deal of evidence coming out now that fructose, corn oil, corn syrups contained in foods are foods which are associated with vascular damage, in particular damage of the cardiovascular system but also the kidneys that leads to accelerated kidney disease. So just following a healthy lifestyle, taking exercise and eating healthily.
10:17 Quentin
And what kind of foods will have fructose in them?
10:24 Paul
Things as simple as going and ordering a coffee from your local coffee shop that’s got some syrup added to it, soft drinks, fast foods of any sort that you buy either from a take away outlet or fast foods that you can buy from a store that you then go home and cook which are pre-heated. There’s a huge amount of public health risk in those foods that is only now being recognised as having big implications of how they contribute both to the onset and also the progression of chronic diseases including Chronic Kidney Disease.
10:58 Quentin
Just to be clear though, if you were to avoid all those said foods but still have a balanced and healthy diet and exercise, would that guarantee that you would not be affected by kidney disease or are these just things that can be seen as markers and signs that you’re probably going to increase your odds?
11:13 Paul
Never believe a doctor who guarantees things absolutely, but it would lead to a far lower risk of you first developing a problem and then a far lower risk if you have a problem of that problem progressing when you have it.
11:28 Quentin
Nick without being too graphic what are the usual stages of the disease as somebody goes slowly from having a fully functional kidney, to kidney failure.
11:37 Nick
Paul may add to some of this because as a surgeon I’m not always involved in the earlier stages but for many patients they won’t know any symptoms or signs of Chronic Kidney Disease until the later stages and that’s until we get towards end stage kidney failure and it’s one of those reasons that we mentioned before about acute presentations and chronic presentations that many patients may be very close to end stage and then have something like an infection or something that pushes them over the edge whilst they may have had kidney disease for many years which has been undetected and that’s one thing that in the Western World we tend to have the benefit of knowing what’s happening.
12:15 Quentin
So the body is kind of compensated and we’ve propped ourselves up in various ways so the underlying problem does not become clear
12:20 Nick
So actually we’ve got a lot of redundancy in our kidney function; this is why we can do live donor transplantation, we can remove one kidney from someone and they’ve still got perfect function from a kidney point of view to last them throughout the rest of their lives without any harm to them. It’s somewhere around about 10% of your kidney function that you start to get problems really that need us to start thinking about dialysis. People vary in terms of how they respond but tiredness, people get itchy, you can get symptoms of itch, and people generally feel pretty unwell to be honest. You can imagine this is a bit like a very bad hangover in that you’re full of toxins that you’re not getting rid of and that’s what dialysis does really, we wash people’s blood to remove those toxins.
13:00 Quentin
Paul it may be a naïve question but if you get kidney disease is it both your kidneys always, or can it just affect one?
13:09 Paul
It’s not a naïve question, it’s a very common question; it’s always both kidneys so as Nick says, you could take a lot of overall kidney function out before you get right down to having symptoms associated with loss of kidney function. For reasons that are associated with the complexity of the kidneys, kidneys are quite complex organs in terms of how they function and how they’re positioned anatomically, we have duplicate organs, it’s not uncommon for people to be born with a single kidney or people to have different contributions to kidney function from each kidney and for the large majority of people it’s not a problem which is one way of thinking about how much kidney function and kidney reserve we actually have; we have a lot of reserve. You need to take a lot of that reserve out before you get to the stage where you’re at major risk. And there is one of the good things potentially about chronic kidney disease that if you get the healthcare structures right and you say ‘that group of people are at high risk because they have diabetes and high blood pressure, let’s monitor their kidney function and then manage the risk for those individuals’. Therefore you can stop a lot kidney disease progressing if you identify it early.
14:20 Quentin
Nick, when somebody has renal failure what actually happens that leads to death? We’ve talked about cleaning the blood, but you can’t just say you die of dirty blood.
14:29 Nick
Absolutely. In essence you do but there are two essential functions of the kidneys. One is to remove toxins and the other is to remove fluid. Whilst renal failure sounds like the kidneys have completely packed up some patients still pass normal amounts of urine and don’t have particular problems with fluid balance, but other patients but other patients don’t pass any urine at all. If we don’t pass any urine at all we build up fluid and that’s the purpose of dialysis is that at intervals we have to remove that fluid and remove that toxin. The toxin that actually kills people on the whole is what we call Potassium, which is very toxic to the heart and creates rhythm disorders in the heart. But there are other toxins in there that make people feel dreadful. The purpose of dialysis is to remove those and remove the fluid. The way we do dialysis: there’s two ways. We can do it either through a tube in the abdomen called Peritoneal dialysis, or access to the bloodstream (Hemodialysis) as I’ve alluded to ‘washing the blood’. We have to take the blood out of the patient and put the blood back into the patient via a machine that removes those toxins and removes some of that fluid, and that’s at intervals. We tend to do it three times a week here; some people do it at home and do it more regularly. Often because of the resource issues in low income countries patients don’t get it quite so often so they’re running at a much more toxic state which is not good for them long term.
15:49 Nick
The other form is peritoneal dialysis. So peritoneal dialysis is a tube inside someone’s abdomen and we use the natural barrier in someone’s abdomen to use that as a dialysis membrane and that actually allows the toxins to move across. We pour fluid into the abdomen and remove the fluid with the toxins. Not everybody is suitable for that. It also needs a relative level of infrastructure and a high level of hygiene to prevent infections. Both forms of dialysis are at risk of infections and those infections can be quite serious.
16:18 Quentin
Is one better than the other if all things are equal in terms of economics?
16:23 Nick
The right dialysis is right for the right patient at the right time, so peritoneal dialysis may not last a lifetime; most patients will go through a range of different dialysis solutions for what they need at their time of life and that’s different for every patient really.
16:39 Quentin
Andrew we’re talking about this almost in isolation but won’t a lot of patients who are needing dialysis and have renal failure, they’ll also have some of the related problems we’ve been talking about before like hypertension and anaemia and bone disease that also need to be treated.
16:52 Andrew
Absolutely and I think one of the misconceptions about Chronic Kidney Disease is that it’s just a disease of the kidneys. What we know is that the kidney has a number of functions and as the kidneys fail the other functions also start to decline. So the kidney has an effect not only on purifying the blood of the products of metabolism but it also has an impact on blood pressure control so most of our patients as they move towards increasing stages of renal failure will develop increasing problems with hypertension. The kidney also produces Erythropoietin, which is part of its endocrine function; it’s the thing that drives red blood cell production so most of our patients also as they develop kidney failure will become increasingly anaemic. Now in the past that was always a very difficult anaemia to treat It was pretty resistant to treating just with iron like many other anaemias will respond and it’s only since the ability to produce Erythropoietin and provide that for our patients that that part of the problem has been at least partly resolved.
18:01 Andrew
The kidneys also have an important role in bone metabolism through the metabolism of Vitamin D so again, as that starts to fail, many of our patients will develop abnormalities in their Calcium and Phosphate balance which is represented clinically in the development of certain bone problems. So you can see that as patients develop renal failure their general health will decline. They become increasingly tired, they have fluid balance problems, anaemia problems, so again the treatment of patients in that part of their disease as they are approaching end stage, they are requiring increasing medical input so the resources required to treat people as they develop renal failure become that much greater.
18:48 Quentin
You’re not just dealing with the kidney problem; you’re dealing with the related problems as well.
18:50 Andrew
You’re dealing with a whole body disease. It’s something that affects most parts of the individual and to treat them successfully all of those things have to be treated and managed in a very coordinated way and that’s where as surgeons we don’t get very much involved and people like Paul become very skilled in all of these various aspects of treating the various systems of the body. And of course if you’ve got hypertension and renal failure you’re likely to have accelerated cardiovascular disease as well. So these are very complicated patients that need very complex medical and surgical input because from the surgical point of view all the dialysis that they require also needs surgical input in terms of placement of dialysis lines, placement of peritoneal dialysis tubes into the abdomen and formation of vascular access for hemodialysis so they’re very complex patients that need a lot of infrastructure.
19:48 Quentin
And Jennie we’ve focussed obviously on the medical complexities of dialysis, I mean dialysis sounds like it’s better than not having dialysis, but there are also economic factors as well.
19:59 Jennie
Yes dialysis is very expensive. Most patients need it 3 times a week and each time there are a lot of consumables that have to be used and in the countries that TLC works in, in low and middle income countries it can cost £50, we often hear quote $100 per session for a patient to have a session of dialysis which places it out of the financial reach of an awful lot of the population and sadly many patients families really struggle to pull the money together, sell their homes and so on in order to put the patient through dialysis and keep them alive and sadly the average time to run out of money is about 3 months so the life expectancy is actually based on the availability of the funds for dialysis rather than the natural course the disease.
20:55 Quentin
And you’re putting all that money not into curing the problem but in simply offsetting the consequences.
21:00 Jennie
Simply really keeping them alive, not even really returning them to a decent quality of life so without the option of a transplant at the end of that series of dialysis it’s quite a hopeless situation which is why it’s so important that transplantation becomes available.
21:17 Quentin
So why, if there are such compelling medical and financial arguments in favour of transplants, is it that there are many places where dialysis is available and that’s the final option effectively?
21:31 Jennie
The main reason is partly historical because of the way that transplantation has evolved in other countries but the main reason is a lack of the skills in those countries, that the local doctors and surgeons and nurses don’t have the skills to run a kidney transplant programme but actually probably have the infrastructure and the will to do so and that’s where TLC comes in; it’s all about skill transfer in order that transplant programmes can be developed.
21:59 Quentin
Paul do we have any figures on what percentage of people get the treatment they need?
22:05 Paul
If we look at the Caribbean countries that Transplant Links has been doing work in our estimates vary but for low- and middle-income countries in the Caribbean probably about 25% of people genuinely get proper treatment with dialysis of their End Stage Renal Failure and that’s if you look at the assumed rates of End Stage Renal Failure in the population against the numbers of dialysis places that are actually available on these relatively small islands in terms of population but high islands in terms of the amount of kidney disease there is. If you look at Sub-Saharan Africa then it’s less than 1%. It will only be people who can pay for it, properly pay for it will have it as a sustainable treatment in the long term.
23:01 Quentin
When you say ‘they get dialysis’ do you mean for a couple of months or for as long as they need it for?
23:09 Paul
So the only people who have it for as long as they need it for are people who can pay for it. You’re talking about a treatment that as Jennie says is costed as between 50,000 and 100,000 US Dollars a year. It’s not just about the dialysis treatment, it’s about the other costs associated with that as well. So what’s happening in many countries is that people will find enough money to go into a commercial dialysis unit to pay for a single dialysis treatment and they may only have enough money scratching together from their family to pay for 2 or 3 treatments a month whereas in fact people need at least 3 a week. So you’re barely having enough to keep alive. That’s sustainable for about 3/4 months; the family will run out of money, the individual with kidney failure dies. The majority will never get that far; they never get access to a dialysis unit or have the finance to give them access to a dialysis unit and you get a very small percentage of the population in those countries who when they get kidney failure have enough money to be able to afford to pay for it in the long term. There’s very, very little in the way of publically funded dialysis in many low- and middle-income countries because it’s such an expensive treatment to live with.
24:25 Quentin
I think in the last figures I saw which were for 2015 there were well over a million deaths from kidney disease globally. Are all of those theoretically preventable if you had the right treatment?
24:37 Paul
So if you look at a death certificate with the causes of death listed the 1A cause of death if you’ve got a fully functioning healthcare system should never be kidney disease. It should never be acute kidney injury or chronic kidney disease if everything else is in line because the kidney failure is a secondary consequence of what’s going on elsewhere and if you support the kidney function and you have ways of supporting it with dialysis and transplantation it shouldn’t be what people die from. Unless people are very elderly and the decision is made by the patient and their family that they’re slipping away and the kidney failure is, if you ultimately die of kidney failure, a relatively gentle way to die if you’re elderly with Chronic Kidney Disease because the waste products will make you sleepy and you tend to slip away over weeks if you don’t get dialysis treatment. But outside of that, people shouldn’t die of kidney failure, shouldn’t die of acute kidney injury and shouldn’t die of chronic kidney disease.
25:35 Quentin
Andrew what are the problems in extending what we know about treating kidney disease to these low- and middle-income countries?
25:45 Andrew
I think the first problem is actually the awareness of kidney disease as an entity. I think we’re not the only people who have found that the knowledge and awareness of kidney disease is often very low and it is not a surprise in as much as even in the UK when we talk to people not directly involved with the work that we do we find the knowledge about kidney disease is actually very poor and largely the only people who know about it are the people who it impacts upon so if you transfer that experience into the countries that we’re talking about it’s not surprising that within the communities and within certainly the political framework of that country, kidney disease is often not really very much thought about, particularly if many people are not actually getting as far as diagnosis. So people will be out in the community, they will die but it’s not necessarily related to kidney disease, it may be death due to cardiovascular disease, which actually was due to kidney disease.
26:53 Quentin
Yes I was going to ask about this – the sort of flip side of what Paul was saying you shouldn’t be having kidney disease as the cause of death but also similarly you may not have kidney disease as the cause of death when it actually is; it’s not what ends up on the death certificate.
27:05 Andrew
That’s why one of our nephrology colleagues who works in Africa has called it a hidden epidemic, because it’s there but it’s often not seen. So I think the first thing that has to happen is the raising of awareness that it’s there. I think we’re seeing the tide turn; I think that is starting to happen now in more and more countries there’s a recognition of kidney disease in the population. I think things like the international invent of World Kidney Day has had an impact internationally recognising that this is an international problem. So I think that there’s a growing awareness. There’s also now an awareness that actually it’s not right that people should be dying of kidney disease in half of the world when they’re not dying of kidney disease in the other half as Paul said. In this country, people shouldn’t have on their death certificate ‘cause of death: Chronic Kidney Disease’ and we’ve long since gone past the point where we’ve felt it’s inappropriate for people to die when treatment is available.
In other parts of the world, for all those reasons we’ve spoken about that message is now getting through but I think it is starting and I think once the awareness has continued to grow then I think the other mechanisms will kick into place, albeit perhaps slowly and hopefully we can help that process through projects like Transplant Links can actually start a momentum for those patients being diagnosed, recognised and actually getting as far as the options of treatment.
28:34 Quentin
Jennie I was going to say, is this part of what Transplant Links is all about, not just providing the skills to the surgeons and treating the individual patients but by the very act of engaging with these countries is to raise the awareness and make a hidden epidemic one that people are far more aware of.
28:49 Jennie
Yes absolutely I mean our work hopefully helps to raise the bar and raise visibility of the problem that kidney failure poses and it also has meant that senior ministers and so on have had to engage with the problem of kidney failure in order to give approval or not for their transplant programmes to go ahead in each country. In an ideal world there would be as much focus (if not way more) on prevention and also preventing the progression of kidney disease once it has started, so Transplant Links transfer of skills tends to focus on the end stage and hopefully less patients ultimately will get to that end stage. But in doing so we’ve at least helped to raise awareness of it as a problem.
29:39 Quentin
And there’s no point in coming up with solutions for an ideal world, you’ve got to come up with solutions for the one we’re actually in.
29:43 Jennie
Yes, exactly. And we’ve come up with solutions for the bit we know.
29:47 Quentin
Nick, how much of a dent can Transplant Links make in these figures? How much of a difference can they make to awareness?
29:53 Nick
Well very much so, I think one thing we haven’t touched upon is that it’s not transplants or dialysis; transplantation is the best form of renal replacement therapy. Dialysis, whilst, as you alluded to earlier, is better than not being on dialysis for a lot of patients, it’s still not an ideal situation and we know that survival of patients on dialysis is much less than patients who get a transplant. One way of getting a patient back to normal function is by performing a transplant. If that transplant is performed in a family which we’ve heard renal failure doesn’t affect just the individual but affects the whole family and the finance of the whole family, what can be seen and what can be demonstrated in many countries is that actually a family can get back on their feet and people can get back to work and get back to contributing to society, get back to supporting themselves and supporting their own families so I think that message has to come across that transplantation really is a gold standard here, not saying that we should be doing dialysis everywhere but we should be aiming to get people transplanted and hopefully get people transplanted before they need dialysis which is the cheaper and better option all round.
30:55 Quentin
And not just a gold standard that’s available in some distant land that there can be actually added on to the health service in that country wherever it may be.
31:01 Nick
And I think one of the key things that we’re trying to do is to actually show and change that idea that this is ‘too technological, too expensive, too whatever-else’; actually it’s the best solution for most patients with renal failure in that situation.
31:13 Quentin
Right, well how TLC are doing this and the details of their existing transplant programme and how it can be enhanced and expanded can be found in another of these podcasts but that is where we leave this one giving, I hope, a good global overview of kidney disease. Thanks again to our panel: Drs Jennie Jewitt-Harris, Nick Inston and Professor Paul Cockwell and Mr Andrew Ready. Thanks also to Samuel Fox and the production team and yourselves for listening. Now, if you haven’t already, go and seek out the other TLC podcasts.
Interviewer: Science journalist and facilitator Quentin Cooper. Interviewees: Dr Nick Inston: Consultant Transplant Surgeon and Clinical Lead at TLC, Mr Andrew Ready: Consultant Transplant Surgeon and Medical Director of TLC, Dr Jennie Jewitt-Harris: Founder and Chief Executive of TLC and Dr Dwomoa Adu: NHS nephrologist and lead nephrologist for Ghana at TLC.
Welcome to this TLC podcast, in which the team discuss the challenges and life saving benefits of developing transplant services around the world. They particularly focus on the severity of renal failure in Sub Saharan Africa and the outlook for patients with renal failure, the financial burden of dialysis, the relative cost of a transplant programme, the ethics involved in establishing a transplant programme, cultural barriers that might slow the progress of a transplant programme, the need for a sustained and coordinated approach, the need for governmental support and the need for a multi disciplinary team. Special thanks to The James Tudor Foundation for sponsoring the production costs of this podcast and to the Creative Media team in Birmingham.
On The Road: Developing Kidney Transplant Services in Barbados
Interviewer: TLC Project Manager Aimee Jewitt-Harris. Interviewees: Consultant Nephrologists Dr Nerissa Jurawan and Dr Lisa Belle, working in the Queen Elizabeth Hospital, Barbados.
Welcome to this ‘On The Road’ TLC podcast, in which TLC Project Manager Aimee Jewitt-Harris is joined in the Queen Elizabeth Hospital, Barbados by Dr Nerissa Jurawan and Dr Lisa Belle: two consultant nephrologists who play instrumental roles in the development of a living donor kidney transplant programme in Barbados. They discuss the burden of kidney failure in Barbados, the options that patients have had in the past for renal replacement therapy, what life is like on dialysis, the benefits of transplantation over dialysis, the partnership between TLC and the Queen Elizabeth Hospital in Barbados, the hurdles involved in developing a kidney transplant programme, the need for support on a governmental level, the need for a multidisciplinary team within the hospital, advice for centres who are thinking of developing a programme, the vision for the transplant programme in Barbados, the need for a cadaveric programme and the governmental legislation to support it, and our local sponsors Elegant Hotels and Republic Bank Barbados who’s support has been invaluable in the development of the programme.
Transplant Links Education 