July 22, 2025 • 27 mins
Dr Sunil Daga opens up about the urgent need for more kidney donors, the rise in dialysis patients, and why research must better reflect the UK’s diverse communities. This episode explores how building trust and breaking down barriers can lead to more equitable care for all.
Views and experiences shared in this podcast belong to the individuals and do not constitute medical advice. For medical advice please contact your pharmacist, GP or dial 111. In an emergency please dial 999.
This podcast was recorded and produced by Under the Mast– creative audio productions and was presented by Caroline Verdon
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Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:07):
Medical breakthroughs,the research journey.
Hello and welcome.
I'm your host, Caroline Burden,and you are about to join me on
a journey into the fascinatingworld of medical breakthroughs,
but not just any breakthroughs.
We are diving into thepersonal stories, the setbacks.
(00:30):
That you will not believe.
This moment behind the cutting edgeresearch happening right here at
Leeds Teaching Hospitals NHS Trust.
Coming up in this episode,
women in certain cultures,they may not feel empowered to
ask a men to donate a kidney.
We see commonly in a woman who's noteconomically active, who's uneducated.
(00:54):
They don't feel empowered toask a kidney from somebody who's
working and economically active.
We also see parents in certain culturesnot comfortable asking their children.
So when people aren't making the mosthealth positive choices, you have
to ask yourself why, and that's whatthis research project is all about.
(01:15):
My name is Sunil Daga.
I'm a consultant nephrologist, andI'm also the living kidney donor
lead for Lee Teaching Hospital.
Kidney disease is a silent disease.
Often individuals don't get,uh, any symptoms until the
kidney drops below percent.
That's the nature ofthe disease, I'm afraid.
Um, and what's also shockingis the condition that causes
(01:38):
kidney disease are also silent.
So for example, diabetes, highblood pressure, or obesity.
We know at the moment about one in 10individuals over age of 35 have moderate
to severe amount of kidney damage.
That's shocking.
One in 10 and it's moderate to severe.
(01:58):
That's correct.
And the way we define moderatekidney disease is anything less
than 60% o of kidney function.
So, so that's the realitywe are facing, I'm afraid.
And that's only going to double in next10 years because of all the other health
issues increasing in prevalence in
in the society.
I was reading, I think it was a paperperhaps, that you'd written with the
(02:19):
predictions in it for the future andthe number of times you were expecting
that to increase in the next 10 years.
Was it 400%?
That's correct.
And that number comes from researchundertaken by one of the largest research
charity in the UK called Kidney Lisa, andprediction model is percent in demand of.
(02:43):
Which affects severely of individualslife, but also puts a lot of
pressure on healthcare systems.
So we are staring at a 400% increaseddemand of dialysis in the next
10 years.
And in practical terms, for patients,what does dialysis look like?
I mean, on its most basic level, youare hooked up to a machine, but how
often are patient's having to come in?
(03:03):
How long are they hooked up for?
Well, is dialysis lifesaving treatment and.
Before somebody gets a kidneytransplant, dialysis is, uh, extremely
demanding on an individual's life.
Really.
They have to come to ahospital every other day.
They need to have thetreatment for four hours.
(03:24):
And if you put together the traveltime, it's generally six to seven
hours of that time every other day.
And that's the most prevalent way ofdoing dialysis is to coming hospital.
A small proposal of individualscan also do dialysis at home, but
that's a very small proportion.
So majority of individuals, I'm afraid,will be spending time in hospital for
(03:46):
this life saving treatment, uh, untilthey get a kidney transplant Now.
I don't have to do dialysis.
This is really important to knowbecause often people say to me, well,
transplant is a last result, isn't it?
When the dialysis not going good?
Well, actually that's not true.
The truth is if, if you arefit for transplantation.
(04:07):
Kidney transplantation should be thefirst choice, the first treatment
somebody with kidney disease gets.
But unfortunately, only 5% or 10% of themax, uh, individuals would get a kidney
transplant even before they need dialysis.
So about 90% of individuals in the UKwill, I'm afraid, end up on dialysis
(04:28):
and, and a fair proposal of thoseindividuals could have been avoided.
If a timely process was forward,a timely support was given to
these patients and they could haveavoided the dialysis treatment.
And why is that timely supportnot being received at the moment?
A variety of reasons, really.
Some of them is patient factors,some of them is the system factor.
(04:53):
So when somebody.
Not knowing about kidney disease to reallyunderstand what the kidney disease is, to
understand that the kidneys are packing.
Uh, often individuals would bethinking more or less about dialysis,
and I'm afraid the healthcareproviders also try to support what.
(05:15):
Uh, their thinking andwhat their choices are.
Um, when it comes to kidneytransplant, there are two broad ways.
One can get an organ.
One would be through thenational waiting list.
So this is after somebodydies and they donate an organ.
And often patients would choose thatbecause they don't want the load one to
(05:36):
go through a major operation for a loadone to donate one of the kidney they
tests.
Be uncomfortable.
To take that as the first choice,and I think that's one of the
major, major reason, to be honest.
The second reason is about one infour individuals start dialysis,
(05:59):
not even known to renal service.
So there is a delay in.
Referring to secondary care, there is adelay in presenting to the kidney service.
So we don't really have time to preparethem for transplant, because often
the biggest thing in front of us is,is their safety and the dialysis is
of course a lifesaving treatment.
(06:20):
So those are the two major things that.
Dictates what actually happens,whether it's dialysis or transplant.
Now, in an ideal world, the individualswith kidney failure or or at risk
of kidney failure should be inthe services and well advanced.
So they have, uh, understoodwhat the kidney disease means.
(06:40):
They had enough time to consider variousoption, and most importantly, start
thinking about kidney transplantation.
That's what.
Supporting those complex conversation andcomplex decision making is at the moment.
The resources we have in NHS is very muchwhat you would describe as one fit model.
(07:06):
Uh, whereas we know we look after diverseindividuals, uh, not only diversity in
race or ethnicity, but also diversityneeds of health literacy, how they can
understand and process information.
The language needs, but also,you know, a group of indigenous
may have, um, a barriers on theculture, uh, on the cultural
(07:29):
norms or faith might be important.
So when it comes to a transplantationwhere you accept and all them
from other humans, you could seethat is a, a range of things that
comes into that, um, decision as.
Having an appendix taken out,which becomes just a little easier,
(07:49):
uh, decision making, isn't it?
And this is where your researchlies at the moment, isn't it?
Yes, absolutely.
So, uh, again, you know, the researchis done by a multidisciplinary team.
Uh, we really wanted to havediverse views, the researchers who
directly care for the patients,and, and also we observe that.
(08:12):
If you, if the patient is lookedafter by a transplanting center
like Leeds, they do better ascompared to, for example, patients
looked after in a referral center.
What I mean by referral center meansthat this is another kidney centers where
they don't perform kidney transplant.
So the current research we are doing isactually working with colleagues in Brad.
(08:34):
This one teaching hospital.
Researchers to, to understand those, uh,to explore those decision making needs.
And we, we, we had, you know, supportfrom two major charities of our region,
the Leads hospital charity, as well asKidney Research Yorkshire, to enable us
(08:57):
to work that multidisciplinary team tosupport a researcher who then actually,
uh, went out and, and undertook anumber of interviews of both staff.
The patients who have gonethrough this journey of decision
making, and that's where thisresearch becomes really important.
Um, because so far within uk, nobody hastaken that deep dive in to understand
(09:23):
both a transplanting center, a referralcenter, and all the peoples who are
involved in the decision making.
What we really wanted to do was thisresearch resembles our clinic patients.
Often when research happens, the researchcan be of convenience where they go and
(09:44):
recruit patients that are easy to recruit.
Yeah.
Uh, often, uh, there are barriersin recruitment for research as well.
Uh, the on top of, you know, the,the barriers I mentioned about.
Decision making when it comes to research.
Those barriers, I'm afraid,compounds and, and, and can be even
more challenging, um, as compared
(10:05):
to the clinical environment.
Presumably that's because it's mucheasier to approach people who speak the
same language as you and who you know,are affluent enough to perhaps have time
in order to be able to dedicate to this,which is a privilege in, in itself.
Uh, well, absolutely because as,uh, you know, for certain groups of
(10:25):
individuals when, when you talk aboutresearch, it's very different than when
you talk about clinical treatment ina clinic, really, because certainly
the trust becomes a, a major issue.
You know, sometimes patientsread stories about how some
individuals Guinea pig and how.
(10:47):
So trust becomes a really important thing.
And, and as you quite rightly said, ableto relate to the researchers and able to
communicate and build that rapport is,is it takes even more time than actually
in a clinical environment where they knowthat they're going to see a doctor, a
nurse, and they're gonna talk about this.
Uh, whereas research Iin, in its own sense.
(11:07):
It's, it's a little bit morethan the clinic, isn't it?
You need to know thatpersonal perspective.
You want to know about the culturalnorms, the faith, the various dynamic
said it's different than what aclinical consultation would be, and
thankfully, only couple of people whowe approached actually declined because.
Uh, what we really have is a diversegroup of individuals within the
(11:32):
research team who can speak multiplelanguage, who understand the cultural
norms and who already have hadrapport, rapport with these patients.
All of those, uh, you know, played inour favor thankfully, but you can, you
can see how sometimes that can be reallyhard if all of those are not there
to facilitate a reset of this kind.
(11:53):
I don't think I've ever really thoughtbefore about how biased research
can be because if you can only speakto the people that you are able to
converse with, then obviously that'sgonna be skewed from from the get go.
Yeah, that, that's one of our, um,major, uh, problem really because the
(12:15):
research patients look very differentthan the patients we carry in the clinic.
Yeah.
Often the research, as you quiterightly said, will be affluent people
who are already engaged in the healthalready doing great, and then, then
to test a medicine, for example.
(12:36):
Results.
You can't apply to the widerange of individual ccs who has
a number of different barriers.
You know, whether from economic barriers,you know, able to come to the clinic in
the timely way, able to take medicine,able to look after themselves, other
health beliefs, you know, other things.
So.
I'm afraid research at the momentdoesn't reflect the, the patient's
(13:00):
group that we serve doesn't present inthe clinic, and hence it is it comes
back to the researcher to try really,really hard, as best as they can.
To, to assemble the research as clinic.
And that's, I think,the biggest challenge.
And I'm really proud that, uh, in,in our multidisciplinary research
group, we were able to get there.
(13:22):
We got a third of individuals in thisresearch who does not speak any English.
Uh, we got a third of individualswho, uh, come from socially
deprived areas as we call and thing.
That was a equal representationon, on the sex of the individual.
(13:43):
So we wanted to make sure 50% of theparticipants are women, um, because
they're also underrepresented inresearch and more so in the kidney
side of, uh, research, to be honest.
And.
In, you know, in terms of what you,you've learned from the research, what
does the care look like that peoplereally, genuinely need compared to the
(14:07):
care that they're currently receiving?
What, what are the differences?
Yeah, so I'll divide, I'll this by.
Of individuals.
The first group of individualswere healthcare worker who
providing the in patient.
(14:28):
Just like you described, they don'thave those skillset to actually, um,
support everybody that comes to the door.
They are able to support, um,you know, as, uh, if I want to
stereotype typical white, uh,middle class male African person.
They do struggle, uh, in terms ofsupporting despite of their best
(14:51):
intentions, and they just don't havethe skillset, whether it's a cultural
awareness, whether it's a faith awareness,whether, um, the language barriers.
So those are our more lying fruitin a way, is to actually embed.
Or learn a little bit more about acultural nuances in, in, in the, in
the group of patients that we see,you know, using, um, staff who already
(15:16):
understands those cultural norms orhave a specific role where individuals
of those needs could be supported.
You know, for example, um,understanding the faith needs and.
That trust chaplain, for example.
Um, those things came as a realneed from the healthcare worker.
They also wanted theirresources that they give out.
(15:39):
For example, at the moment,um, for somebody who is
waiting for kidney transplant.
The video is one hour long video and allin English language, they're really trying
to get that dubbed in different languages.
Mm-hmm.
So, um, you know, let's sayour second biggest population
speaks older or, or Punjabi.
(16:00):
So they are trying to translate that.
So those were the needs thatwe, um, got, um, through the
healthcare worker, uh, perspective.
We then went on to talk to this diverse,uh, underserved groups of individuals.
Uh, now the, the patients that weinterviewed had three different outcome.
(16:20):
A, a third of the patients weresuccessful to get a living kidney donor.
A third of the patient wagedand were successful to get a
kidney from a deceased person.
And a third of the still waiting.
Different and such individual
(16:42):
expect, know, need.
Tailor the information.
One of the things we are thinkingabout is, is having a, a video
resource in different languagethat is culturally adapted.
That's one way to do it.
The second thing we have doneas a result of this research.
I used to have an evening conversation,so when the family can come with a
(17:07):
patient who's ready for kidney transplant,and we had an open conversation, uh,
on a, you know, a San E uh, and thatactually helped, helped them as well.
So getting outside the clinic,setting clinic norms to sort of build
that and have that conversation.
So those two things are,are main sort of working.
(17:30):
For individual person, we may have toempower them to, for example, to ask
for somebody to come forward to donatea kidney, because at the moment, the
healthcare worker can't go and knockthe door of their friends and family.
It comes back to the patients to takethat initiative and the patient then
design those individuals who may donate.
(17:55):
Sign post to.
So you could see there is already abarrier that the healthcare worker,
uh, aren't able to easily overcome.
But what we're trying to do is tosupport the patients who needs a
kidney transplant, to empower them to,to really, um, I mean this involves
anything from coaching to mentoring.
So quite a different approach thanwhat you would expect in, in, in
(18:19):
a clinical environment, you know,interaction with the patients
and a, and a healthcare worker.
And
so is the the goal to be able tohave that more individualized care?
Well, absolutely.
That is the goal.
Um, I, I think we would have totake some baby steps first because
the diversity and, and, andthen needs of different groups.
(18:44):
Are are quite different.
So we're gonna go withour biggest group first.
So, you know, within, for example,within white Caucasian, we're gonna
be focusing on health literacy, globalsocioeconomic status, how we support them.
And then, uh, thinking about.
non-English language or ethnic minoritywill be thinking about, you know,
(19:05):
providing a video that's, um, focusedon the cultural norms, the faith aspect,
and not also the linguistic aspects.
So you're absolutely right.
It, it is gonna be a tailored approach.
Uh, I'm afraid.
We will not be able to help everybodystraight away, but it'll be incremental.
Yeah.
You know, um, helping, youknow, the biggest group and
(19:28):
the biggest group that way.
And when you talk about, um, you know,how, how culture plays a role in this,
what, what do you see practically, whatare the learnings on a practical sense?
So one of the things, uh, we see is womenin certain cultures may be less empowered.
(19:49):
They may not feel empowered to ask, uh,for example, a man to genetic kidney.
We see that as a culture of silence.
Um, the culture is about justtolerating just coping with a disease.
But, but not to us.
I mean, we see this commonly in a, um.
(20:09):
Underserved woman who's not economicallyactive, who's uneducated, they don't
feel that that that power tacticsor power dynamic, they don't feel
empowered to actually, for example,ask a kidney from, uh, somebody who's,
who's working and economically active.
Mm-hmm.
That's just, just an example.
Um, we also see parentsin certain cultures.
(20:33):
Not comfortable asking theirchildren to donate a kidney.
It becomes, even interestingly, um,so for example, Hindu fate, they
would not want, uh, a kidney from thedaughters because they feel that the
daughter I is a gift that they need todonate to the husband in total ti and
not, you know, taking the kidney out.
(20:53):
The daughter.
Yeah.
So those are certain cultural, uh.
Yeah, that's really interesting becauseunless you address those, you are never
going to see a difference in outcome.
Yeah.
Well the first thing is tounderstand that those exist.
Yeah.
And to support them.
(21:14):
Uh, and that, you know, um, this issafe because, you know, we will not
allow anybody to donate a living kidney.
They have to go through a stringent test.
Uh, that's, so one of the emphasis we'redoing is that education that, you know,
giving them that reassurance that theliving kidney donation is going for 70
years, you know, seven decades result.
(21:37):
We know who can safely donate thiskidney and live a healthy life.
So those things are reallyimportant from education.
We'll come around by, you know, having,uh, for example, a, a role model.
So we have patients and peer support whohave gone through the similar things.
(22:00):
Mm-hmm.
So sometime it's almost like,you know, getting them those.
Together, uh, particularly the peers whoare from the same culture, same religion.
You could have a chatand have a conversation.
Yeah.
Sort of, you know, outside NHS.
So we do use other charities.
We use other patient groups, uh, and wetry and match those peers with a patient
(22:21):
based on those characteristics really.
It's genuinely fascinating, thework that you are doing and just
from listening to you, it's veryeasy to see the difference that.
Uh, absolutely.
We really, um, have just only startedto understand what is required, and
(22:42):
we now actually started to focuson, uh, you know, no lying fruits,
but also focusing on developing moreresources so the individuals are
coming to Leeds, uh, or, or around thereferral centers are supported as well.
As well as we can.
We need is all this in a timely five?
(23:05):
A transplant of individualswill start with dialysis.
If you look at all the kidneytransplant that happens in Leeds,
one in three comes from living kidneydonation and, and about 50% of them
is after they've started dialysis.
So we are, you know, informingour, uh, healthcare worker, our
(23:25):
processes, uh, through this free,if we can support them early and can
translate those opportunities into.
Before the need of dialysis, then that isreally good for individuals with kidney
failure, but but also really good fortheir, um, you know, health economy.
Now you'll be thinking, well, whywould dialysis be a, a, a, an issue?
(23:48):
You know, what's what, what is theprice you pay if you are stuck on
dialysis and you wait for a transplant?
Well, what we know is a dialysis isas good as 15 to 20% of your kidney.
The dialysis machine is onlyworking four hours every other day,
whereas a kidney is working 24 7.
Usually after kidney transplant, youget about 30 to 40% of your kidney
(24:12):
function, and if you're lucky, you canget about 50% of the kidney, so dialysis.
Is a life saving treatment,but it has its own limitation.
The limitation being that the toxinlevels are still high, this individual,
and that's what causes damage to theirheart, damage to their blood vessels.
And we see a lot of people on dialysisas a result, suffer with heart attack and
(24:37):
stroke, and they become no longer fit.
So be before.
Hence if you have a kidneytransplant before the of dialysis,
that is the best case scenario.
Yeah.
Um, but I'm afraid often individuals,because of various concern, they
(24:59):
will choose dialysis and I onlythink about asking a living kidney
donation when things aren't goingright and it can be too late.
You don't have to wait.
And can anyone, um, applyto be a living kidney donor?
(25:20):
Is there like a, a register?
How does it work?
Now there is no register for aliving kidney donation if, if
anybody's interested to donate akidney either to somebody that they
know, or some individuals actuallycome to NHS and say they want to
donate a kidney to a stranger.
So in UK about one in 10 living kidneydonors actually donate to a stranger.
(25:46):
So.
Donor team at the, at the transplantcenter, uh, to express the interest that
you are keen to donate a kidney, eithersomebody that you know, or to strangers.
There is no national registerfor this sort of thing.
So I'm afraid, uh, it is aboutapproaching the clinical team who
(26:09):
then sends a health questionnaire,which is usually like a triage.
You know, they ask variousquestions, um, and sometime, you
know, just through the clear.
This individual ate kidney.
So then we don't put them throughvarious tests and once they pass the
question state, they are then invitedto come to the transplant center
(26:30):
where we, uh, you know, assess themwhere we put them through the test.
And that's, that's when we know ifthey could donate kidney or they
need to look after themselves more.
And so what, what does the, thefuture look like in terms of the
next, the next level of research?
Yeah, so I think the, the biggestchallenge next is we now know what,
(26:51):
uh, this group of individuals, um.
WW would, would help.
We now need to do further research toactually show that those are effective.
Yeah.
As often as you say, researchleads to more research and, and,
and that very much applies tothis particular piece of research.
(27:12):
So we, we, we've done the first stage.
We understand now we need to try and findthings that actually makes difference.
Things that.
Actually are going to get a patientperson from A to B and and in
this instance increasing in livingkidney donor transplantation.
More to come is what I would say.
And that's about all we'vegot time for on this episode.
(27:33):
But if you would like to findout more, you can find the
details in our show notes.
Medical Breakthroughs.
The research journey is an under the.
Medical breakthroughs,the research journey.
Hello and welcome.
I'm your host, Caroline Burden,and you are about to join me on
a journey into the fascinatingworld of medical breakthroughs,
but not just any breakthroughs.
We are diving into thepersonal stories, the setbacks.
(00:30):
That you will not believe.
This moment behind the cutting edgeresearch happening right here at
Leeds Teaching Hospitals NHS Trust.
Coming up in this episode,
women in certain cultures,they may not feel empowered to
ask a men to donate a kidney.
We see commonly in a woman who's noteconomically active, who's uneducated.
(00:54):
They don't feel empowered toask a kidney from somebody who's
working and economically active.
We also see parents in certain culturesnot comfortable asking their children.
So when people aren't making the mosthealth positive choices, you have
to ask yourself why, and that's whatthis research project is all about.
(01:15):
My name is Sunil Daga.
I'm a consultant nephrologist, andI'm also the living kidney donor
lead for Lee Teaching Hospital.
Kidney disease is a silent disease.
Often individuals don't get,uh, any symptoms until the
kidney drops below percent.
That's the nature ofthe disease, I'm afraid.
Um, and what's also shockingis the condition that causes
(01:38):
kidney disease are also silent.
So for example, diabetes, highblood pressure, or obesity.
We know at the moment about one in 10individuals over age of 35 have moderate
to severe amount of kidney damage.
That's shocking.
One in 10 and it's moderate to severe.
(01:58):
That's correct.
And the way we define moderatekidney disease is anything less
than 60% o of kidney function.
So, so that's the realitywe are facing, I'm afraid.
And that's only going to double in next10 years because of all the other health
issues increasing in prevalence in
in the society.
I was reading, I think it was a paperperhaps, that you'd written with the
(02:19):
predictions in it for the future andthe number of times you were expecting
that to increase in the next 10 years.
Was it 400%?
That's correct.
And that number comes from researchundertaken by one of the largest research
charity in the UK called Kidney Lisa, andprediction model is percent in demand of.
(02:43):
Which affects severely of individualslife, but also puts a lot of
pressure on healthcare systems.
So we are staring at a 400% increaseddemand of dialysis in the next
10 years.
And in practical terms, for patients,what does dialysis look like?
I mean, on its most basic level, youare hooked up to a machine, but how
often are patient's having to come in?
(03:03):
How long are they hooked up for?
Well, is dialysis lifesaving treatment and.
Before somebody gets a kidneytransplant, dialysis is, uh, extremely
demanding on an individual's life.
Really.
They have to come to ahospital every other day.
They need to have thetreatment for four hours.
(03:24):
And if you put together the traveltime, it's generally six to seven
hours of that time every other day.
And that's the most prevalent way ofdoing dialysis is to coming hospital.
A small proposal of individualscan also do dialysis at home, but
that's a very small proportion.
So majority of individuals, I'm afraid,will be spending time in hospital for
(03:46):
this life saving treatment, uh, untilthey get a kidney transplant Now.
I don't have to do dialysis.
This is really important to knowbecause often people say to me, well,
transplant is a last result, isn't it?
When the dialysis not going good?
Well, actually that's not true.
The truth is if, if you arefit for transplantation.
(04:07):
Kidney transplantation should be thefirst choice, the first treatment
somebody with kidney disease gets.
But unfortunately, only 5% or 10% of themax, uh, individuals would get a kidney
transplant even before they need dialysis.
So about 90% of individuals in the UKwill, I'm afraid, end up on dialysis
(04:28):
and, and a fair proposal of thoseindividuals could have been avoided.
If a timely process was forward,a timely support was given to
these patients and they could haveavoided the dialysis treatment.
And why is that timely supportnot being received at the moment?
A variety of reasons, really.
Some of them is patient factors,some of them is the system factor.
(04:53):
So when somebody.
Not knowing about kidney disease to reallyunderstand what the kidney disease is, to
understand that the kidneys are packing.
Uh, often individuals would bethinking more or less about dialysis,
and I'm afraid the healthcareproviders also try to support what.
(05:15):
Uh, their thinking andwhat their choices are.
Um, when it comes to kidneytransplant, there are two broad ways.
One can get an organ.
One would be through thenational waiting list.
So this is after somebodydies and they donate an organ.
And often patients would choose thatbecause they don't want the load one to
(05:36):
go through a major operation for a loadone to donate one of the kidney they
tests.
Be uncomfortable.
To take that as the first choice,and I think that's one of the
major, major reason, to be honest.
The second reason is about one infour individuals start dialysis,
(05:59):
not even known to renal service.
So there is a delay in.
Referring to secondary care, there is adelay in presenting to the kidney service.
So we don't really have time to preparethem for transplant, because often
the biggest thing in front of us is,is their safety and the dialysis is
of course a lifesaving treatment.
(06:20):
So those are the two major things that.
Dictates what actually happens,whether it's dialysis or transplant.
Now, in an ideal world, the individualswith kidney failure or or at risk
of kidney failure should be inthe services and well advanced.
So they have, uh, understoodwhat the kidney disease means.
(06:40):
They had enough time to consider variousoption, and most importantly, start
thinking about kidney transplantation.
That's what.
Supporting those complex conversation andcomplex decision making is at the moment.
The resources we have in NHS is very muchwhat you would describe as one fit model.
(07:06):
Uh, whereas we know we look after diverseindividuals, uh, not only diversity in
race or ethnicity, but also diversityneeds of health literacy, how they can
understand and process information.
The language needs, but also,you know, a group of indigenous
may have, um, a barriers on theculture, uh, on the cultural
(07:29):
norms or faith might be important.
So when it comes to a transplantationwhere you accept and all them
from other humans, you could seethat is a, a range of things that
comes into that, um, decision as.
Having an appendix taken out,which becomes just a little easier,
(07:49):
uh, decision making, isn't it?
And this is where your researchlies at the moment, isn't it?
Yes, absolutely.
So, uh, again, you know, the researchis done by a multidisciplinary team.
Uh, we really wanted to havediverse views, the researchers who
directly care for the patients,and, and also we observe that.
(08:12):
If you, if the patient is lookedafter by a transplanting center
like Leeds, they do better ascompared to, for example, patients
looked after in a referral center.
What I mean by referral center meansthat this is another kidney centers where
they don't perform kidney transplant.
So the current research we are doing isactually working with colleagues in Brad.
(08:34):
This one teaching hospital.
Researchers to, to understand those, uh,to explore those decision making needs.
And we, we, we had, you know, supportfrom two major charities of our region,
the Leads hospital charity, as well asKidney Research Yorkshire, to enable us
(08:57):
to work that multidisciplinary team tosupport a researcher who then actually,
uh, went out and, and undertook anumber of interviews of both staff.
The patients who have gonethrough this journey of decision
making, and that's where thisresearch becomes really important.
Um, because so far within uk, nobody hastaken that deep dive in to understand
(09:23):
both a transplanting center, a referralcenter, and all the peoples who are
involved in the decision making.
What we really wanted to do was thisresearch resembles our clinic patients.
Often when research happens, the researchcan be of convenience where they go and
(09:44):
recruit patients that are easy to recruit.
Yeah.
Uh, often, uh, there are barriersin recruitment for research as well.
Uh, the on top of, you know, the,the barriers I mentioned about.
Decision making when it comes to research.
Those barriers, I'm afraid,compounds and, and, and can be even
more challenging, um, as compared
(10:05):
to the clinical environment.
Presumably that's because it's mucheasier to approach people who speak the
same language as you and who you know,are affluent enough to perhaps have time
in order to be able to dedicate to this,which is a privilege in, in itself.
Uh, well, absolutely because as,uh, you know, for certain groups of
(10:25):
individuals when, when you talk aboutresearch, it's very different than when
you talk about clinical treatment ina clinic, really, because certainly
the trust becomes a, a major issue.
You know, sometimes patientsread stories about how some
individuals Guinea pig and how.
(10:47):
So trust becomes a really important thing.
And, and as you quite rightly said, ableto relate to the researchers and able to
communicate and build that rapport is,is it takes even more time than actually
in a clinical environment where they knowthat they're going to see a doctor, a
nurse, and they're gonna talk about this.
Uh, whereas research Iin, in its own sense.
(11:07):
It's, it's a little bit morethan the clinic, isn't it?
You need to know thatpersonal perspective.
You want to know about the culturalnorms, the faith, the various dynamic
said it's different than what aclinical consultation would be, and
thankfully, only couple of people whowe approached actually declined because.
Uh, what we really have is a diversegroup of individuals within the
(11:32):
research team who can speak multiplelanguage, who understand the cultural
norms and who already have hadrapport, rapport with these patients.
All of those, uh, you know, played inour favor thankfully, but you can, you
can see how sometimes that can be reallyhard if all of those are not there
to facilitate a reset of this kind.
(11:53):
I don't think I've ever really thoughtbefore about how biased research
can be because if you can only speakto the people that you are able to
converse with, then obviously that'sgonna be skewed from from the get go.
Yeah, that, that's one of our, um,major, uh, problem really because the
(12:15):
research patients look very differentthan the patients we carry in the clinic.
Yeah.
Often the research, as you quiterightly said, will be affluent people
who are already engaged in the healthalready doing great, and then, then
to test a medicine, for example.
(12:36):
Results.
You can't apply to the widerange of individual ccs who has
a number of different barriers.
You know, whether from economic barriers,you know, able to come to the clinic in
the timely way, able to take medicine,able to look after themselves, other
health beliefs, you know, other things.
So.
I'm afraid research at the momentdoesn't reflect the, the patient's
(13:00):
group that we serve doesn't present inthe clinic, and hence it is it comes
back to the researcher to try really,really hard, as best as they can.
To, to assemble the research as clinic.
And that's, I think,the biggest challenge.
And I'm really proud that, uh, in,in our multidisciplinary research
group, we were able to get there.
(13:22):
We got a third of individuals in thisresearch who does not speak any English.
Uh, we got a third of individualswho, uh, come from socially
deprived areas as we call and thing.
That was a equal representationon, on the sex of the individual.
(13:43):
So we wanted to make sure 50% of theparticipants are women, um, because
they're also underrepresented inresearch and more so in the kidney
side of, uh, research, to be honest.
And.
In, you know, in terms of what you,you've learned from the research, what
does the care look like that peoplereally, genuinely need compared to the
(14:07):
care that they're currently receiving?
What, what are the differences?
Yeah, so I'll divide, I'll this by.
Of individuals.
The first group of individualswere healthcare worker who
providing the in patient.
(14:28):
Just like you described, they don'thave those skillset to actually, um,
support everybody that comes to the door.
They are able to support, um,you know, as, uh, if I want to
stereotype typical white, uh,middle class male African person.
They do struggle, uh, in terms ofsupporting despite of their best
(14:51):
intentions, and they just don't havethe skillset, whether it's a cultural
awareness, whether it's a faith awareness,whether, um, the language barriers.
So those are our more lying fruitin a way, is to actually embed.
Or learn a little bit more about acultural nuances in, in, in the, in
the group of patients that we see,you know, using, um, staff who already
(15:16):
understands those cultural norms orhave a specific role where individuals
of those needs could be supported.
You know, for example, um,understanding the faith needs and.
That trust chaplain, for example.
Um, those things came as a realneed from the healthcare worker.
They also wanted theirresources that they give out.
(15:39):
For example, at the moment,um, for somebody who is
waiting for kidney transplant.
The video is one hour long video and allin English language, they're really trying
to get that dubbed in different languages.
Mm-hmm.
So, um, you know, let's sayour second biggest population
speaks older or, or Punjabi.
(16:00):
So they are trying to translate that.
So those were the needs thatwe, um, got, um, through the
healthcare worker, uh, perspective.
We then went on to talk to this diverse,uh, underserved groups of individuals.
Uh, now the, the patients that weinterviewed had three different outcome.
(16:20):
A, a third of the patients weresuccessful to get a living kidney donor.
A third of the patient wagedand were successful to get a
kidney from a deceased person.
And a third of the still waiting.
Different and such individual
(16:42):
expect, know, need.
Tailor the information.
One of the things we are thinkingabout is, is having a, a video
resource in different languagethat is culturally adapted.
That's one way to do it.
The second thing we have doneas a result of this research.
I used to have an evening conversation,so when the family can come with a
(17:07):
patient who's ready for kidney transplant,and we had an open conversation, uh,
on a, you know, a San E uh, and thatactually helped, helped them as well.
So getting outside the clinic,setting clinic norms to sort of build
that and have that conversation.
So those two things are,are main sort of working.
(17:30):
For individual person, we may have toempower them to, for example, to ask
for somebody to come forward to donatea kidney, because at the moment, the
healthcare worker can't go and knockthe door of their friends and family.
It comes back to the patients to takethat initiative and the patient then
design those individuals who may donate.
(17:55):
Sign post to.
So you could see there is already abarrier that the healthcare worker,
uh, aren't able to easily overcome.
But what we're trying to do is tosupport the patients who needs a
kidney transplant, to empower them to,to really, um, I mean this involves
anything from coaching to mentoring.
So quite a different approach thanwhat you would expect in, in, in
(18:19):
a clinical environment, you know,interaction with the patients
and a, and a healthcare worker.
And
so is the the goal to be able tohave that more individualized care?
Well, absolutely.
That is the goal.
Um, I, I think we would have totake some baby steps first because
the diversity and, and, andthen needs of different groups.
(18:44):
Are are quite different.
So we're gonna go withour biggest group first.
So, you know, within, for example,within white Caucasian, we're gonna
be focusing on health literacy, globalsocioeconomic status, how we support them.
And then, uh, thinking about.
non-English language or ethnic minoritywill be thinking about, you know,
(19:05):
providing a video that's, um, focusedon the cultural norms, the faith aspect,
and not also the linguistic aspects.
So you're absolutely right.
It, it is gonna be a tailored approach.
Uh, I'm afraid.
We will not be able to help everybodystraight away, but it'll be incremental.
Yeah.
You know, um, helping, youknow, the biggest group and
(19:28):
the biggest group that way.
And when you talk about, um, you know,how, how culture plays a role in this,
what, what do you see practically, whatare the learnings on a practical sense?
So one of the things, uh, we see is womenin certain cultures may be less empowered.
(19:49):
They may not feel empowered to ask, uh,for example, a man to genetic kidney.
We see that as a culture of silence.
Um, the culture is about justtolerating just coping with a disease.
But, but not to us.
I mean, we see this commonly in a, um.
(20:09):
Underserved woman who's not economicallyactive, who's uneducated, they don't
feel that that that power tacticsor power dynamic, they don't feel
empowered to actually, for example,ask a kidney from, uh, somebody who's,
who's working and economically active.
Mm-hmm.
That's just, just an example.
Um, we also see parentsin certain cultures.
(20:33):
Not comfortable asking theirchildren to donate a kidney.
It becomes, even interestingly, um,so for example, Hindu fate, they
would not want, uh, a kidney from thedaughters because they feel that the
daughter I is a gift that they need todonate to the husband in total ti and
not, you know, taking the kidney out.
(20:53):
The daughter.
Yeah.
So those are certain cultural, uh.
Yeah, that's really interesting becauseunless you address those, you are never
going to see a difference in outcome.
Yeah.
Well the first thing is tounderstand that those exist.
Yeah.
And to support them.
(21:14):
Uh, and that, you know, um, this issafe because, you know, we will not
allow anybody to donate a living kidney.
They have to go through a stringent test.
Uh, that's, so one of the emphasis we'redoing is that education that, you know,
giving them that reassurance that theliving kidney donation is going for 70
years, you know, seven decades result.
(21:37):
We know who can safely donate thiskidney and live a healthy life.
So those things are reallyimportant from education.
We'll come around by, you know, having,uh, for example, a, a role model.
So we have patients and peer support whohave gone through the similar things.
(22:00):
Mm-hmm.
So sometime it's almost like,you know, getting them those.
Together, uh, particularly the peers whoare from the same culture, same religion.
You could have a chatand have a conversation.
Yeah.
Sort of, you know, outside NHS.
So we do use other charities.
We use other patient groups, uh, and wetry and match those peers with a patient
(22:21):
based on those characteristics really.
It's genuinely fascinating, thework that you are doing and just
from listening to you, it's veryeasy to see the difference that.
Uh, absolutely.
We really, um, have just only startedto understand what is required, and
(22:42):
we now actually started to focuson, uh, you know, no lying fruits,
but also focusing on developing moreresources so the individuals are
coming to Leeds, uh, or, or around thereferral centers are supported as well.
As well as we can.
We need is all this in a timely five?
(23:05):
A transplant of individualswill start with dialysis.
If you look at all the kidneytransplant that happens in Leeds,
one in three comes from living kidneydonation and, and about 50% of them
is after they've started dialysis.
So we are, you know, informingour, uh, healthcare worker, our
(23:25):
processes, uh, through this free,if we can support them early and can
translate those opportunities into.
Before the need of dialysis, then that isreally good for individuals with kidney
failure, but but also really good fortheir, um, you know, health economy.
Now you'll be thinking, well, whywould dialysis be a, a, a, an issue?
(23:48):
You know, what's what, what is theprice you pay if you are stuck on
dialysis and you wait for a transplant?
Well, what we know is a dialysis isas good as 15 to 20% of your kidney.
The dialysis machine is onlyworking four hours every other day,
whereas a kidney is working 24 7.
Usually after kidney transplant, youget about 30 to 40% of your kidney
(24:12):
function, and if you're lucky, you canget about 50% of the kidney, so dialysis.
Is a life saving treatment,but it has its own limitation.
The limitation being that the toxinlevels are still high, this individual,
and that's what causes damage to theirheart, damage to their blood vessels.
And we see a lot of people on dialysisas a result, suffer with heart attack and
(24:37):
stroke, and they become no longer fit.
So be before.
Hence if you have a kidneytransplant before the of dialysis,
that is the best case scenario.
Yeah.
Um, but I'm afraid often individuals,because of various concern, they
(24:59):
will choose dialysis and I onlythink about asking a living kidney
donation when things aren't goingright and it can be too late.
You don't have to wait.
And can anyone, um, applyto be a living kidney donor?
(25:20):
Is there like a, a register?
How does it work?
Now there is no register for aliving kidney donation if, if
anybody's interested to donate akidney either to somebody that they
know, or some individuals actuallycome to NHS and say they want to
donate a kidney to a stranger.
So in UK about one in 10 living kidneydonors actually donate to a stranger.
(25:46):
So.
Donor team at the, at the transplantcenter, uh, to express the interest that
you are keen to donate a kidney, eithersomebody that you know, or to strangers.
There is no national registerfor this sort of thing.
So I'm afraid, uh, it is aboutapproaching the clinical team who
(26:09):
then sends a health questionnaire,which is usually like a triage.
You know, they ask variousquestions, um, and sometime, you
know, just through the clear.
This individual ate kidney.
So then we don't put them throughvarious tests and once they pass the
question state, they are then invitedto come to the transplant center
(26:30):
where we, uh, you know, assess themwhere we put them through the test.
And that's, that's when we know ifthey could donate kidney or they
need to look after themselves more.
And so what, what does the, thefuture look like in terms of the
next, the next level of research?
Yeah, so I think the, the biggestchallenge next is we now know what,
(26:51):
uh, this group of individuals, um.
WW would, would help.
We now need to do further research toactually show that those are effective.
Yeah.
As often as you say, researchleads to more research and, and,
and that very much applies tothis particular piece of research.
(27:12):
So we, we, we've done the first stage.
We understand now we need to try and findthings that actually makes difference.
Things that.
Actually are going to get a patientperson from A to B and and in
this instance increasing in livingkidney donor transplantation.
More to come is what I would say.
And that's about all we'vegot time for on this episode.
(27:33):
But if you would like to findout more, you can find the
details in our show notes.
Medical Breakthroughs.
The research journey is an under the.
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