The Rest is Kidneys

CKD Coding does not need GCHQ or Enigma machines

• North West London Kidney Care • Season 1 • Episode 4

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The Rest is Kidneys podcast series is brought to you by Imperial College Healthcare NHS Trust and North West London Integrated Care Board (NWL NHS)

In this episode, consultant nephrologists Jeremy Levy and Andrew Frankel from Imperial College Healthcare NHS Trust are joined by Dr Kuldhir Johal, a GP and interim cardiovascular and renal lead. 

Together, they discuss a critical aspect of chronic kidney disease (CKD) management in primary care: the importance of accurate coding to improve diagnosis and patient outcomes.

This episode focuses on how CKD remains underdiagnosed due to gaps in coding, confidence among healthcare providers, and primary care capacity. Dr Johal explains that CKD affects a significant portion of the population, but proper diagnosis often lags. 

The discussion explores strategies to bridge this gap, like integrating albumin-to-creatinine ratio (ACR) testing into regular health checks for high-risk individuals. The speakers emphasise the collaborative tools and resources being developed to make CKD management a standard, streamlined practice in primary care.

Three Main Takeaways:

1. Early Detection through Comprehensive Testing

For patients at risk of CKD, such as those with diabetes, hypertension, or cardiovascular disease, a complete kidney health check should include both GFR (glomerular filtration rate) and ACR tests. These tests allow for early CKD detection and timely interventions to slow disease progression.

2. Accurate and Consistent Coding

Consistently coding CKD diagnoses in primary care records (with both EGFR and ACR codes) is essential for monitoring patient health, ensuring continuity of care, and ultimately improving CKD detection rates and patient outcomes.

3. Patient Involvement in Diagnosis

Engaging patients in their CKD diagnosis and educating them on kidney health empowers them to make informed decisions and adopt lifestyle adjustments that support kidney function, underscoring the value of proactive, patient-centred care.

Resource Links:
NICE GUIDELINES [NG203] chronic kidney disease: assessment and management Overview | Chronic kidney disease: assessment and management | Guidance | NICE

Northwest London CKD guidelines for primary care Chronic kidney disease (nwlondonicb.nhs.uk)

The purpose of this podcast is to inform and educate health care professionals working in the primary care and community setting. The content is evidence based and consistent with NICE guidelines and North West Guidelines available at the time of publication.

The content of this podcast does not constitute medical advice and it is not intended to function as a substitute for a healthcare practitioner’s judgement.

Produced by award-winning media and marketing specialist Heather Pownall of Heather's Media Hub

Welcome to North West London Kidney Care Podcast, a bite sized podcast where chronic kidney disease management is made easy for healthcare professionals in primary care.

Jeremy Levy
So hello! I'm Jeremy Levy, and I'm a consultant nephrologist at Imperial College Healthcare, NHS Trust.

Andrew Frankel
Hello and good morning, Jeremy. I'm Andrew Frankel. I'm also one of your colleague consultant nephrologists at Imperial College Healthcare, NHS Trust. And in this episode, we're going to be talking about coding in primary care, which is a very important topic, because we know that CKD, chronic kidney disease, affects 8-10% of the population. However, when we look at the data, we are hugely under-diagnosing this. So I'm going to introduce now Kuldhir, Dr Kuldhir Johal.


Dr Kuldhir Johal
Thank you Andrew, and thank you Jeremy, and thank you for inviting me to the podcast. I'm a GP by background. I'm also the interim cardiovascular and renal lead. And it's so true, there does appear to be quite a lot of un-diagnosed, but it's a question of, what are we diagnosing? When we look at QOF, which is part of the national data set, in March 2024 we know it was only picking up 3.5% of patients identified with CKD, but in North West London, that's only at 2%.

Jeremy Levy
That's amazing. It seems amazingly low Kuldhir, because from all the published data, isn't it true that about 10% of people we think out there have got chronic kidney disease? So that's a sort of massive under representation, isn't it, in primary care coding. And just for anybody out there who isn't working in primary care now, or isn't quite sure, coding is what we're referring to, it means adding a diagnosis to a patient's record, a patient's label in their health record on the IT system. And we're not doing that just because we're obsessed about coding and putting labels to things, but if we can identify people who've got chronic kidney disease, it allows us to know what's out there, But also for the individual person, it means we can call them back to do all the things we've been talking about in other podcasts. So coding is really, really, really important. So Kuldhir, from your experience in primary care, do you have any thoughts about why we've got this massive discrepancy? Possibly 10% of people with chronic kidney disease, but in North West London, only 2% labelled as such?

Dr Kuldhir Johal
Well Jeremy, I think it's probably fair to say that a large number of healthcare professionals, GPs, including clinical pharmacists and nurses working primary care, have some degree of, shall we say, lack of confidence? Personally, in the beginning, I used to find it quite scary to make a diagnosis of CKD because of the implications. But it's important to address this problem because the fact it affects not just the individual practices, but individual people. And how can this be influenced by policies and financial incentives? We know, a few years ago in QOF there was an incentive that diagnosis was better, and the number of uACRs being undertaken was larger, and that's been evidenced in the recent study. But how can we improve the outcomes on a larger scale where we want to address this?

Andrew Frankel
So I agree with you Kuldhir, we have this CKD public health emergency on the one hand, but on the other hand, we really need to upskill primary care clinicians, and give them confidence in relation to the management of CKD, but also give them some financial incentive so that we can influence outcomes. And I understand that chronic kidney disease, CKD, was recently added to the North West London locally enhanced service. Can you tell us a little bit more about this Kuldhir please?

Dr Kuldhir Johal
Of course. The biggest shift in the CKD needs to be in relation to how it's coded from stages one to five, by including a uACR, and and the number of people being affected with CKD, three to five, requiring an annual review. Whilst this is still very recent, I must say that I am already noticing a mindset shift, and the key is to discuss the importance of kidney health with the at risk population, particularly patients affected by diabetes, hypertension and cardiovascular disease.

We know in the London Kidney Network guidelines, which has been titled ‘Guidelines on CKD in Primary Care’, emphasises that CKD coding should include both the blood EGFR and the urine values relevant to the CKD detection. It's an excellent resource to help improve our understanding of what we need to do, along with the North West London CKD guidelines. The intervention undertaken early can only slow the progression of the kidney disease, but more importantly, it's about the kidney health of an individual.

Jeremy Levy
So that's really exciting, really, that we've really got this emphasis on properly recognising early kidney disease. Because, of course, many of you all know out there that in terms of kidney damage, often way before there's a change in the kidney function, the EGFR, you often get low level proteinuria. And so that's why that urine ACR, the albumin to creatinine ratio, is a really good, and possibly the best way, to detect early chronic kidney disease when the kidney function is still preserved. And that's why those early stages, stage one and stage two of CKD, are actually very important, so we can recognise that early stage with protein leaking out, when the kidney function still looks very good.

And we really need to change our mindsets, all our colleagues' mindsets, to be thinking about screening with ACRs, as well as the blood test, the creatinine, the EGFR, otherwise we're going to miss people. And of course, we're not talking about screening the entire population. We're talking about screening those people who are at risk, diabetics, the hypertensive, the people with vascular disease.

And we also know these early treatments you just touched on, and we've talked about in other podcasts, that they can reverse and improve those early signs of damage, and albuminuria can be often completely reversed with the therapies that we've got available, and that has a massive impact on progression, doesn't it? So this early detection is really important.

Andrew Frankel
So Jeremy, can I emphasise something that you've said, which is that we're not talking here about a siloed CKD screening service, because there's substantial management overlap between CKD, diabetes, and all forms of cardiovascular disease, and I know practices are completely overwhelmed with the current demand on them, but what we shouldn't do is duplicate work, and much of this screening can be undertaken as part of the management pathway of these other diseases, Kuldhir, is that correct, In your mind?

Dr Kuldhir Johal
Absolutely. In fact, the National CVD PREVENT data up to March 2024, already tells us that patients who've got diabetes because of what we know in relation to the care pathway, already have regular uACR checks. But when we actually look at the same data in relation to hypertension alone, the uptake for uACRs is as low as one in four. But if we can achieve 80-90% of those same patients having a blood test, why can't we just ask them to do a urine test at the same time? To check both the kidney and the cholesterol levels? We know these in themselves can be very much a key route to the early intervention in slowing down the progression.

Don't forget other simple measures may involve weight management, sugar control, blood pressure control, and cholesterol control. That's the everyday bread and butter of primary care. Making adjustments in this will make a big difference. It isn't extra work. These are the patients you're actually already seeing on a regular basis. The majority of CKD patients will be managed under other long term conditional recall systems, such as diabetes, hypertension and cardiovascular disease. As you've already mentioned, it's the same person.

Jeremy Levy
That's really important, Kuldhir. Just thinking about myself actually, my hypertension is really well controlled. I have blood tests, I've never been asked to give a urine test, and I’m going to do that this afternoon, given I've completely forgotten to do that. But what are the other (apart from persuading patients like me to behave and GPs to actually think about doing it), what are the other challenges in primary care, particularly around this new coding guidance?

Dr Kuldhir Johal
I can't answer the question without mentioning capacity. Having said this, clinicians are not only GPs, we work in teams. We are very fortunate to have knowledgeable, advanced clinical practitioners, including nurses and pharmacists, and they represent a key resource. There is also the operational aspect. When you haven't done something before, you need to develop very detailed standard operating procedures. We've got a number of these across North West London, which different boroughs are happy to share. We then need to think about how we implement this and transfer the learning. Who is already doing this? How can we learn from each other? How can we adapt? If you answer the question more from a clinician's perspective, the insecurity of explaining the CKD diagnosis is a common theme, particularly when there is evidence of disease for a few years prior to the conversation. Don't take me wrong. Clinicians understand that everybody should have a quality discussion about their new diagnosis of CKD, which should always be discussed with the patient, but also making them aware about their kidney health and the precautions they need to take. Sick health advice, for example, even when to use non steroidal, anti inflammatory drugs. I know they’re areas that you've covered in your other podcasts.

Ideally, the discussion should be supported by high quality patient information resources, tailored to patient needs. We've got a number of excellent examples in North West London. During the short consultations when we also need to discuss diabetes, hypertension and smoking, it can be very challenging in the time commitment. But don't forget, you work as a team, particularly when you say chronic kidney disease, it is scary to the person affected just as much as it is to the clinician. But I think that's where we're getting the mind shift.

Jeremy Levy
I think that's all so important, Kuldhir, and so true. I think clinicians out there are a bit frightened to add the label. They're worried that they didn't add it before, so will the patient think that they've missed it before? And there's this whole phrasing, and suddenly people have got this label of chronic kidney disease. We have to do this in secondary care as well quite a lot. For me, when I start talking about it, I always explain that chronic doesn't mean terrible. It just means it's been there for a long time, and the kidneys are working not quite as well as they should be, and chronic, in one sense, is much better than acute. It's not just sudden and devastating, and that's very important.

And people often think stages mean they've got cancer, because they're used to hearing about stage and cancer, and reinforcing that isn't the case, and this is just a way of thinking about how bad or how good their kidney function is, when they've got a little bit of damage, but all of those are the things we need to overcome on there. And for us, there is also this argument, just to say, that chronic kidney disease is there, we must tell people about it, because they'll start to see their own medical records. And actually, it's even more frightening for words to suddenly appear that they're not aware about.

Andrew Frankel
Jeremy. I think that you and I, as representatives on this podcast for secondary care, need to be clear that we in secondary care also have to take some responsibility for this, and we need to all be working in a much more integrated and collaborative manner. We started that in North West London in a number of ways. And we have a very strong educational program, ‘Know Your Kidneys’, which is linked to primary care. We have educational videos that are translated in various languages, and so we have a lot of resources. But Kuldhir, do you think that the majority of clinicians in North West London are aware of this? And do you think this, these first steps are beginning to help?

Dr Kuldhir Johal
I believe it is beginning to help, purely because I've heard colleagues say it's a welcome paradigm shift in their approach, as one colleague eloquently put it. By increasing awareness it is about understanding how even the local nephrologist can support, and we've got excellent methods of how we can do that locally, but it's a continuous journey.

Jeremy Levy
And what else is out there that can help support clinicians, Kuldhir? I know we've changed sort of bits on the software just to make life as easy as possible, haven't we, but can you just remind us what else there is for clinicians out there?

Dr Kuldhir Johal
Absolutely. Within North West London, we've got two clinical systems in primary care, EMIS and  SystmOne. Within these systems, we've actually managed to create a single view of when you see a patient, you can get a clear idea of, do they or don't they have CKD, as well as a very clear guide within the systems themselves. It will tell you when the blood test was up to date, as well as urine test, it also helps you to do the correct coding. The coding itself is also aligned to the QOFs coding set. This in itself, helps to manage the patient clearly, with clear steps of what to do next, as understanding it's not just about the coding, it's about the clinical care and the quality improvement.

What we've also done is created some very supportive searches, which allows this to become business as usual. You've already indicated that this was part of an incentive to initially improve on the quality of the coding, but because it's now becoming business as usual, we want to make sure these tools are sustainable and long term, so patients are recalled in a timely manner, the ambition truly would be to ensure that all patients who need to have CKD screening, we hit the 80-90% as we do for diabetes, why not for hypertension and cardiovascular disease as well.

Andrew Frankel
Kuldhir, thank you so much for joining us. So if I would highlight three takeaway points… We need to be offering not just GFR, but ACR, as part of a kidney health check, to all patients who are at risk of CKD, in particular patients with cardiovascular risk factors such as hypertension. And then we need to code these individuals, both in relation to their EGFR, their G code and their ACR, their A code. And finally, of course, we have to involve the patient. We have to discuss the diagnosis and the coding with the patient, and make them aware of their kidney health and what can be done by us, but more importantly by themselves, in terms of improving their outcomes. Thank you so much.

Jeremy Levy
Thanks, Kuldhir.

Dr Kuldhir Johal
Thank you.


All information is fully consistent with NICE and North West London guidelines. You can find out more in the show notes and contact us with any suggestions or questions, send us a text using the text function at the top of your show notes.

In our next episode, we will be covering pharmacological therapy of CKD RAASi therapy, should doses be maximised, even if the blood pressure is in range, we know these agents can reduce renal function and lead to hyperkalemia. What are the practical tips to prescribe safely, but at the same time, minimising the number of visits to the surgery. Thank you for listening. Please subscribe to the show and we will see you next time.