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.

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This podcast was recorded and produced by Under the Mast– creative audio productions and was presented by Caroline Verdon

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 fascinating world of medical breakthroughs,

but not just any breakthroughs.

We are diving into the personal stories, the setbacks.

That you will not believe.

This moment behind the cutting edge research 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 not economically active, who's uneducated.

They don't feel empowered to ask a kidney from somebody who's

working and economically active.

We also see parents in certain cultures not comfortable asking their children.

So when people aren't making the most health positive choices, you have

to ask yourself why, and that's what this research project is all about.

My name is Sunil Daga.

I'm a consultant nephrologist, and I'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 of the disease, I'm afraid.

Um, and what's also shocking is the condition that causes

kidney disease are also silent.

So for example, diabetes, high blood pressure, or obesity.

We know at the moment about one in 10 individuals over age of 35 have moderate

to severe amount of kidney damage.

That's shocking.

One in 10 and it's moderate to severe.

That's correct.

And the way we define moderate kidney disease is anything less

than 60% o of kidney function.

So, so that's the reality we are facing, I'm afraid.

And that's only going to double in next 10 years because of all the other health

issues increasing in prevalence in

in the society.

I was reading, I think it was a paper perhaps, that you'd written with the

predictions in it for the future and the 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 research undertaken by one of the largest research

charity in the UK called Kidney Lisa, and prediction model is percent in demand of.

Which affects severely of individuals life, but also puts a lot of

pressure on healthcare systems.

So we are staring at a 400% increased demand 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, you are hooked up to a machine, but how

often are patient's having to come in?

How long are they hooked up for?

Well, is dialysis life saving treatment and.

Before somebody gets a kidney transplant, dialysis is, uh, extremely

demanding on an individual's life.

Really.

They have to come to a hospital every other day.

They need to have the treatment for four hours.

And if you put together the travel time, it's generally six to seven

hours of that time every other day.

And that's the most prevalent way of doing dialysis is to coming hospital.

A small proposal of individuals can 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

this life saving treatment, uh, until they get a kidney transplant Now.

I don't have to do dialysis.

This is really important to know because 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 are fit for transplantation.

Kidney transplantation should be the first choice, the first treatment

somebody with kidney disease gets.

But unfortunately, only 5% or 10% of the max, uh, individuals would get a kidney

transplant even before they need dialysis.

So about 90% of individuals in the UK will, I'm afraid, end up on dialysis

and, and a fair proposal of those individuals could have been avoided.

If a timely process was forward, a timely support was given to

these patients and they could have avoided the dialysis treatment.

And why is that timely support not being received at the moment?

A variety of reasons, really.

Some of them is patient factors, some of them is the system factor.

So when somebody.

Not knowing about kidney disease to really understand what the kidney disease is, to

understand that the kidneys are packing.

Uh, often individuals would be thinking more or less about dialysis,

and I'm afraid the healthcare providers also try to support what.

Uh, their thinking and what their choices are.

Um, when it comes to kidney transplant, there are two broad ways.

One can get an organ.

One would be through the national waiting list.

So this is after somebody dies and they donate an organ.

And often patients would choose that because they don't want the load one to

go through a major operation for a load one 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 in four individuals start dialysis,

not even known to renal service.

So there is a delay in.

Referring to secondary care, there is a delay in presenting to the kidney service.

So we don't really have time to prepare them for transplant, because often

the biggest thing in front of us is, is their safety and the dialysis is

of course a lifesaving treatment.

So those are the two major things that.

Dictates what actually happens, whether it's dialysis or transplant.

Now, in an ideal world, the individuals with kidney failure or or at risk

of kidney failure should be in the services and well advanced.

So they have, uh, understood what the kidney disease means.

They had enough time to consider various option, and most importantly, start

thinking about kidney transplantation.

That's what.

Supporting those complex conversation and complex decision making is at the moment.

The resources we have in NHS is very much what you would describe as one fit model.

Uh, whereas we know we look after diverse individuals, uh, not only diversity in

race or ethnicity, but also diversity needs 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 the culture, uh, on the cultural

norms or faith might be important.

So when it comes to a transplantation where you accept and all them

from other humans, you could see that is a, a range of things that

comes into that, um, decision as.

Having an appendix taken out, which becomes just a little easier,

uh, decision making, isn't it?

And this is where your research lies at the moment, isn't it?

Yes, absolutely.

So, uh, again, you know, the research is done by a multidisciplinary team.

Uh, we really wanted to have diverse views, the researchers who

directly care for the patients, and, and also we observe that.

If you, if the patient is looked after by a transplanting center

like Leeds, they do better as compared to, for example, patients

looked after in a referral center.

What I mean by referral center means that this is another kidney centers where

they don't perform kidney transplant.

So the current research we are doing is actually working with colleagues in Brad.

This one teaching hospital.

Researchers to, to understand those, uh, to explore those decision making needs.

And we, we, we had, you know, support from two major charities of our region,

the Leads hospital charity, as well as Kidney Research Yorkshire, to enable us

to work that multidisciplinary team to support a researcher who then actually,

uh, went out and, and undertook a number of interviews of both staff.

The patients who have gone through this journey of decision

making, and that's where this research becomes really important.

Um, because so far within uk, nobody has taken that deep dive in to understand

both a transplanting center, a referral center, and all the peoples who are

involved in the decision making.

What we really wanted to do was this research resembles our clinic patients.

Often when research happens, the research can be of convenience where they go and

recruit patients that are easy to recruit.

Yeah.

Uh, often, uh, there are barriers in 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

to the clinical environment.

Presumably that's because it's much easier 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

individuals when, when you talk about research, it's very different than when

you talk about clinical treatment in a clinic, really, because certainly

the trust becomes a, a major issue.

You know, sometimes patients read stories about how some

individuals Guinea pig and how.

So trust becomes a really important thing.

And, and as you quite rightly said, able to 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 know that they're going to see a doctor, a

nurse, and they're gonna talk about this.

Uh, whereas research I in, in its own sense.

It's, it's a little bit more than the clinic, isn't it?

You need to know that personal perspective.

You want to know about the cultural norms, the faith, the various dynamic

said it's different than what a clinical consultation would be, and

thankfully, only couple of people who we approached actually declined because.

Uh, what we really have is a diverse group of individuals within the

research team who can speak multiple language, who understand the cultural

norms and who already have had rapport, rapport with these patients.

All of those, uh, you know, played in our favor thankfully, but you can, you

can see how sometimes that can be really hard if all of those are not there

to facilitate a reset of this kind.

I don't think I've ever really thought before about how biased research

can be because if you can only speak to the people that you are able to

converse with, then obviously that's gonna be skewed from from the get go.

Yeah, that, that's one of our, um, major, uh, problem really because the

research patients look very different than the patients we carry in the clinic.

Yeah.

Often the research, as you quite rightly said, will be affluent people

who are already engaged in the health already doing great, and then, then

to test a medicine, for example.

Results.

You can't apply to the wide range 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 moment doesn't reflect the, the patient's

group that we serve doesn't present in the 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.

We got a third of individuals in this research who does not speak any English.

Uh, we got a third of individuals who, uh, come from socially

deprived areas as we call and thing.

That was a equal representation on, on the sex of the individual.

So we wanted to make sure 50% of the participants are women, um, because

they're also underrepresented in research 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 people really, genuinely need compared to the

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 individuals were healthcare worker who

providing the in patient.

Just like you described, they don't have 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 of supporting despite of their best

intentions, and they just don't have the skillset, whether it's a cultural

awareness, whether it's a faith awareness, whether, um, the language barriers.

So those are our more lying fruit in a way, is to actually embed.

Or learn a little bit more about a cultural nuances in, in, in the, in

the group of patients that we see, you know, using, um, staff who already

understands those cultural norms or have 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 real need from the healthcare worker.

They also wanted their resources that they give out.

For example, at the moment, um, for somebody who is

waiting for kidney transplant.

The video is one hour long video and all in English language, they're really trying

to get that dubbed in different languages.

Mm-hmm.

So, um, you know, let's say our second biggest population

speaks older or, or Punjabi.

So they are trying to translate that.

So those were the needs that we, 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 we interviewed had three different outcome.

A, a third of the patients were successful to get a living kidney donor.

A third of the patient waged and were successful to get a

kidney from a deceased person.

And a third of the still waiting.

Different and such individual

expect, know, need.

Tailor the information.

One of the things we are thinking about is, is having a, a video

resource in different language that is culturally adapted.

That's one way to do it.

The second thing we have done as a result of this research.

I used to have an evening conversation, so when the family can come with a

patient who's ready for kidney transplant, and we had an open conversation, uh,

on a, you know, a San E uh, and that actually 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.

For individual person, we may have to empower them to, for example, to ask

for somebody to come forward to donate a kidney, because at the moment, the

healthcare worker can't go and knock the door of their friends and family.

It comes back to the patients to take that initiative and the patient then

design those individuals who may donate.

Sign post to.

So you could see there is already a barrier that the healthcare worker,

uh, aren't able to easily overcome.

But what we're trying to do is to support 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 than what you would expect in, in, in

a clinical environment, you know, interaction with the patients

and a, and a healthcare worker.

And

so is the the goal to be able to have that more individualized care?

Well, absolutely.

That is the goal.

Um, I, I think we would have to take some baby steps first because

the diversity and, and, and then needs of different groups.

Are are quite different.

So we're gonna go with our biggest group first.

So, you know, within, for example, within white Caucasian, we're gonna

be focusing on health literacy, global socioeconomic status, how we support them.

And then, uh, thinking about.

non-English language or ethnic minority will be thinking about, you know,

providing a video that's, um, focused on 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 everybody straight away, but it'll be incremental.

Yeah.

You know, um, helping, you know, the biggest group and

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, what are the learnings on a practical sense?

So one of the things, uh, we see is women in certain cultures may be less empowered.

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 just tolerating just coping with a disease.

But, but not to us.

I mean, we see this commonly in a, um.

Underserved woman who's not economically active, who's uneducated, they don't

feel that that that power tactics or 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 parents in certain cultures.

Not comfortable asking their children to donate a kidney.

It becomes, even interestingly, um, so for example, Hindu fate, they

would not want, uh, a kidney from the daughters because they feel that the

daughter I is a gift that they need to donate to the husband in total ti and

not, you know, taking the kidney out.

The daughter.

Yeah.

So those are certain cultural, uh.

Yeah, that's really interesting because unless you address those, you are never

going to see a difference in outcome.

Yeah.

Well the first thing is to understand that those exist.

Yeah.

And to support them.

Uh, and that, you know, um, this is safe 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're doing is that education that, you know,

giving them that reassurance that the living kidney donation is going for 70

years, you know, seven decades result.

We know who can safely donate this kidney and live a healthy life.

So those things are really important from education.

We'll come around by, you know, having, uh, for example, a, a role model.

So we have patients and peer support who have gone through the similar things.

Mm-hmm.

So sometime it's almost like, you know, getting them those.

Together, uh, particularly the peers who are from the same culture, same religion.

You could have a chat and have a conversation.

Yeah.

Sort of, you know, outside NHS.

So we do use other charities.

We use other patient groups, uh, and we try and match those peers with a patient

based on those characteristics really.

It's genuinely fascinating, the work that you are doing and just

from listening to you, it's very easy to see the difference that.

Uh, absolutely.

We really, um, have just only started to understand what is required, and

we now actually started to focus on, uh, you know, no lying fruits,

but also focusing on developing more resources so the individuals are

coming to Leeds, uh, or, or around the referral centers are supported as well.

As well as we can.

We need is all this in a timely five?

A transplant of individuals will start with dialysis.

If you look at all the kidney transplant that happens in Leeds,

one in three comes from living kidney donation and, and about 50% of them

is after they've started dialysis.

So we are, you know, informing our, uh, healthcare worker, our

processes, uh, through this free, if we can support them early and can

translate those opportunities into.

Before the need of dialysis, then that is really good for individuals with kidney

failure, but but also really good for their, um, you know, health economy.

Now you'll be thinking, well, why would dialysis be a, a, a, an issue?

You know, what's what, what is the price you pay if you are stuck on

dialysis and you wait for a transplant?

Well, what we know is a dialysis is as good as 15 to 20% of your kidney.

The dialysis machine is only working four hours every other day,

whereas a kidney is working 24 7.

Usually after kidney transplant, you get about 30 to 40% of your kidney

function, and if you're lucky, you can get about 50% of the kidney, so dialysis.

Is a life saving treatment, but it has its own limitation.

The limitation being that the toxin levels are still high, this individual,

and that's what causes damage to their heart, damage to their blood vessels.

And we see a lot of people on dialysis as a result, suffer with heart attack and

stroke, and they become no longer fit.

So be before.

Hence if you have a kidney transplant before the of dialysis,

that is the best case scenario.

Yeah.

Um, but I'm afraid often individuals, because of various concern, they

will choose dialysis and I only think about asking a living kidney

donation when things aren't going right and it can be too late.

You don't have to wait.

And can anyone, um, apply to be a living kidney donor?

Is there like a, a register?

How does it work?

Now there is no register for a living kidney donation if, if

anybody's interested to donate a kidney either to somebody that they

know, or some individuals actually come to NHS and say they want to

donate a kidney to a stranger.

So in UK about one in 10 living kidney donors actually donate to a stranger.

So.

Donor team at the, at the transplant center, uh, to express the interest that

you are keen to donate a kidney, either somebody that you know, or to strangers.

There is no national register for this sort of thing.

So I'm afraid, uh, it is about approaching the clinical team who

then sends a health questionnaire, which is usually like a triage.

You know, they ask various questions, um, and sometime, you

know, just through the clear.

This individual ate kidney.

So then we don't put them through various tests and once they pass the

question state, they are then invited to come to the transplant center

where we, uh, you know, assess them where we put them through the test.

And that's, that's when we know if they could donate kidney or they

need to look after themselves more.

And so what, what does the, the future look like in terms of the

next, the next level of research?

Yeah, so I think the, the biggest challenge next is we now know what,

uh, this group of individuals, um.

WW would, would help.

We now need to do further research to actually show that those are effective.

Yeah.

As often as you say, research leads to more research and, and,

and that very much applies to this particular piece of research.

So we, we, we've done the first stage.

We understand now we need to try and find things that actually makes difference.

Things that.

Actually are going to get a patient person from A to B and and in

this instance increasing in living kidney donor transplantation.

More to come is what I would say.

And that's about all we've got time for on this episode.

But if you would like to find out more, you can find the

details in our show notes.

Medical Breakthroughs.

The research journey is an under the.