Power to the People: Educate to Empower

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

In this episode, Professor Jeremy Levy, Dr. Andrew Frankel, and clinical lead kidney nurse specialist Joana Teles discuss how to effectively educate and empower patients with Chronic Kidney Disease (CKD), focusing on delivering a CKD diagnosis with clarity and reassurance, addressing common misconceptions, and encouraging patient engagement during short consultations. Joanna highlights the importance of framing discussions around ‘kidney health’ rather than ‘kidney disease’ and shares practical tips for encouraging patients to take an active role in their care. Resources like the Know Your Kidneys education programme are vital tools for patient learning and support.

The discussion highlights that there are practical steps to help reduce fear and unnecessary worry so that patients can be reassured and empowered. For example, it is important to explain that the term ‘chronic’ describes the duration of the condition rather than its severity and to clarify that CKD stages are not comparable to cancer stages. To encourage patient involvement and understanding, Joana continues by outlining actions such as having regular ‘kidney health checks’ to monitor kidney function, protein levels, and blood pressure. The benefits of commonly used medications, such as Ramipril and SGLT2 inhibitors, are also explained. The conversation concludes by stressing the value of simple, actionable steps, such as keeping track of medications and bringing blood pressure readings to appointments, which can help patients feel more confident and engaged in managing their kidney health.

Top Three Takeaways:

1. Use clear, reassuring language to explain CKD and focus on maintaining kidney health.
2. Promote regular "kidney health checks" and educate patients on lifestyle and medication management.
3. Encourage small, actionable steps to increase patient engagement, such as participating in education programmes like Know Your Kidneys.

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.

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Transcript

The Rest is Kidneys makes kidney disease management easy.  The Rest is Kidneys is for primary care clinicians.  The Rest is Kidneys is NICE consistent, short and sweet. Welcome to the Restless Kidneys brought to you by the Northwest London NHS Kidney Care Team.

Jeremy Levy

Hello. I'm Professor Jeremy Levy, a Consultant Nephrologist at Imperial College Healthcare.

Andrew Frankel

Hello, I’m Andrew Frankel, another Nephrologist working at Imperial Healthcare NHS Trust.

Joanna

Hi, I'm Joanna. I'm a kidney nurse specialist, and I also work at Imperial College Healthcare. And in the last three years, I've had the privilege to be leading the CKD education across North West London for both healthcare professionals and patients.

Jeremy Levy

Hi, Andrew and Joanna, it's great that you're both here. In this episode today, we're going to be talking about how to educate and engage people affected by chronic kidney disease, what it means for people, and how we as healthcare professionals should be explaining all of this, and Andrew and Joanna have been leading on this very effectively. I'm just going to hand over to Andrew, and then we'll have some specific topics that we're going to cover in the next 10 minutes.

Andrew Frankel

Yes, Jeremy, I'm sure anyone from North West London in primary care, would be aware of the fact that Chronic Kidney Disease identification and management, is now being prioritised, and supported financially via a locally enhanced service. Consequently, we're seeing improved rates of appropriate CKD identification and coding.

However, a real challenge that is being reported to us by many GPs, is the fact that they need to inform people about their new diagnosis during what is often a very short consultation. That is what we want to focus on in this podcast, and hopefully at the end of this topic, you will feel more confident on how to inform your patients about CKD, and how to guide them to the services available.

Jeremy Levy

So I agree, Andrew, and that's a really important topic, not just frightening people, but more and more people are suddenly seeing a diagnostic label, aren't they? On their notes, and on their records that suddenly says Chronic Kidney Disease. So Joanna, how do we explain Chronic Kidney Disease, CKD, to people without frightening them?

Joanna

Thanks Jeremy, and I often bring this question, either in the clinic or even during our group sessions, during Know Your Kidneys educational program. When I'm trying to explain CKD to someone, I break these into three questions; What is Chronic Kidney Disease? So what is the definition? What does it actually mean for the person affected? And what can we do about it?

So if we start with the first one, what is Chronic Kidney Disease? I tell people that Chronic Kidney Disease happens when the kidneys are not working as well as they should, or they’re damaged. So in other words, this may cause their function to be worse than expected, or it may mean that the kidneys are leaking protein. It's very important to clarify that healthy kidneys don't leak protein. And the language is important. It's particularly important to explain that chronic doesn't mean severe, and this is the key to not frightening people. Chronic doesn't mean severe, it just means the damage has been there for many months, and sometimes even years. This is a silent disease, meaning that people don't experience any symptoms. Symptoms only really come when people have very advanced kidney disease, stage five. So when we’re explaining a diagnosis, it's a good opportunity to bring in the stages, and use that to reassure people, and say you actually have CKD stage two, or three, out of five. Again, the language used is very important. The word stage is often associated with cancer by the general public, and this has been fed back to us by many people in the program. So it's important to clarify that CKD is not cancer, and stages are only a guide to help us understand how much the disease has worsened.

Jeremy Levy

So I completely agree Joanna. I think three things from that, that staging issue is really important, using the word damage as well as disease, because for many people, this isn't an overt disease, they've just got damage in their kidneys. And so those are really important tips.

Joanna

Thank you, I completely agree. And the other thing is to remind people, just because there are no symptoms, what is the problem? There is a problem, and the problem is the increased risk of cardiovascular events such as heart attacks and strokes, as well as the risk that the disease can gradually get worse, many times unnoticed, all the way to kidney failure. But whilst this is a problem, we can do something about it. And whilst this may sound scary, the key is to reassure people that through lifestyle and kidney treatments, we can slow down the progression of kidney disease, and in many cases, we will actually prevent kidney failure, and almost more importantly, prevent cardiovascular complication. And this really takes us to the third question, so what can be done about it?

The foundation of most long term conditions is based on a healthy lifestyle, and CKD is no different. We already had a full episode dedicated to this topic, so I'm not going to repeat, but whilst guidance is not kidney specific, it is important to reassure people that this is important. I don't know if you've had this experience in clinic, but often people know that it is important to exercise, but then they don't know if they can actually exercise with kidney problems, and they ask us in clinic. So it's important to reassure them that they can and they should.

When we then start moving into the medication review, and considering initiating ACE inhibitors and ARBs and SGLT2s. Now, again, we've already had two episodes dedicated to this therapy, so I will simply focus on the language, and here to help in building a relationship of trust, it is important to reassure people that the Ramipril (that they may be starting, or may actually be already taking), is known as a kidney treatment. So it is also helpful for the blood pressure, but it's also a kidney treatment to protect their kidneys and their heart. And for the glyflosins, the conversation is very similar.

Jeremy Levy

So that's really helpful Joanna, and that last bit you just touched on, that people often think that the drugs they are on, are just for blood pressure, or just for their heart, and actually reminding them that that's important, but these are helping their kidneys as well, and that we're not doing nothing. And those are all the things that I go through as well, but we're all limited with time, aren't we? And I'm finding more and more people have Googled Chronic Kidney Disease before they arrive. Often they've got very frightened, because they just got told they're approaching dialysis and they've got stage five Chronic Kidney Disease, and that all makes it a bit harder in many senses. Some people even Google it before they've left the conversation with you. And there is information available isn't there, from CKD charities, but again, most of that's tailored to people heading for dialysis and transplantations. Andrew, I don't know what you think about where you think people should learn more about Chronic Kidney Disease?

Andrew Frankel

Yes. So the message for primary care is that the vast majority of the conversations you're going to have, are not about dialysis and transplantation, but are about those other factors that can be improved in relation to cardiovascular disease. And you need to get the right educational material. If you don't get that message right, people will be frightened.

What is really helpful, and I hope this will be appreciated by you all, is that in North West London, we have a patient education service called Know Your Kidneys, that gives people a real opportunity to learn more, and share experiences, and ask questions online. And referral to that educational program is now directly available from your primary care system, whether that's EMIS or SystmOne.

Joanna

I absolutely agree, please use our Know Your Kidneys education session. This has been growing, we run it monthly, and the level of engagement is really increasing. Now, whilst Andrew mentioned that the available referral is directly from EMIS and SystmOne through education and through a text message. My experience is that what really helps people to attend is to give them the leaflets in clinic, at least at the moment, for our population. So do familiarise yourself with our Education Kit, and the leaflet for referring people to Know Your Kidneys.

Jeremy Levy

So yeah, I've attended one of Joanna's sessions, and they're fantastic. We can all thoroughly recommend them. If any of you are hearing noise in the background, Andrew's cat is learning some things about kidney disease as well, because it's such an important topic…

Andrew Frankel

I apologise for my cat and my squeaky chair!

Jeremy Levy

So Joanna, thinking about how we engage people in their own care. And this is true for lots of chronic diseases, isn't it? How do you think we can tackle that, in this short consultation, short for us in clinic, short for GPs, and practise nurses? How can we tackle trying to get people engaged on this topic?

Joanna

Thanks, Jeremy. I guess the tricky bit in the question is, how do we do this in a short period of time? Because that's really the limitation. And whilst we know that the discussions about lifestyle changes usually require longer and multiple appointments, and to do it effectively, we really want to be using motivational interview approaches, and really multiple reviews as well.

We can also start engaging during short consultations. For example, questions like, how important is losing weight for you? Or stopping smoking for you? Or how confident do you feel you can actually do it? These are helpful guides to start a conversation, and as a guide if people don't recognise the importance, there is no point in making a behavioural change. Or if people recognise the importance, but they actually have zero confidence they can actually do it, again, there is no point in making an action plan. We would need to work more on motivation, but this requires time.

Having said this, over the years, and particularly through my experience doing Know Your Kidneys, I'm becoming aware that engaged and motivated people often don't know how to navigate the healthcare system. For example, people would easily, and rightly so, assume that health systems are connected, such as the GP records and secondary care. So I always think that a good point to start when talking about engagement is covering the basic steps, particularly during short appointments. So I'll now take you through some examples that can be helpful tips to start promoting engagement during short consultations.

So for example, if you're telling your patient that you've got CKD or you're doing your CKD review. Instead of saying at the end of the consultation that you're going to be seen in 12 months or in 6 months, you could say that from now on, you should be seen every 6 to 12 months. And the difference in the language is very subtle, but the difference is in the message. Instead of telling them the next appointment, we’re explaining the frequency of when they're supposed to be seen. And what this actually changes; It empowers the patient to contact the team if the appointment doesn't come through in the expected time, not necessarily in the next time, but any subsequent times thereafter.

Another suggestion is to say that every six months, or every year, whenever you come for your kidney health check, you should come and do a urine ACR. Again, this empowers the patient, and levels up the patient with the medical professionals. It almost gives them permission that if at the next appointment, the nurse or the doctor doesn't ask them for a urine, to remind the team and say, this is expected, shall we do this. Now we often approach checking blood pressure at home as a binary; people either do it or they don't. When actually, there's multiple steps into doing it effectively. Many people already check their blood pressure at home, and it's not uncommon, and I'm sure it will be the same for you. It's not uncommon for me to review people in clinic who tell me, oh yes, I checked it, and I gave the reading to the GP, can't you see it on the system? Or “Yes, I check it. I do it every week, but I didn't bring the results”. So clearly, you encourage the people and find out what's the next step that we need to get more engagement, and make sure that they bring the blood pressure results to the appointment and show it to the doctors and nurses.

What I often tell during Know Your Kidneys is, have your diary with your blood pressure results, with your medication, and every time you go to any appointment, it doesn't matter which type of appointment, you show them the blood pressure readings, ask them to take notes, and you keep it back for your next appointment. That's your own records.

Again, during 10 minute appointments, you're not going to expect any clinician to be explaining to people, in a tutorial, to check their blood results online. But the reality is, many people already do that, and even though they have access and they’re IT literate, they don't know, they get overwhelmed with many results. So another easy tip to drop during a short consultation, maybe if you're talking about kidneys, you may as well say, Oh, you check your blood results online. The EGFR is the number that you're looking to assess your kidney health. So I hope this gives you some helpful tips to promote engagement during short consultations.

Andrew Frankel

Those are really helpful Joanna, and I particularly like the concept that's central to that, which is the kidney health check; the blood for GFR, the urine for albumin, and the blood pressure assessment. And if individuals with CKD understand that they need a kidney health check, and what it entails, that makes it much easier for them to navigate their own healthcare through the system.

Joanna

I actually agree with you Andrew, and we are focusing more and more on kidney health rather than kidney disease. Especially as we screen, and as we start embedding kidney health checks as part of discussing risk of kidney disease. So we are really promoting the language of kidney health. And as much as I think it is a fair reflection, to say that healthcare professionals have a tendency to think about engagement with a focus on clinical outcomes, not always appreciating the small steps. And I hope this is a good opportunity to think about all these small steps, and promoting engagement, so that each person will be at a different level.

One thing that I think has been quite remarkable, is when I finish each Know Your Kidney session, which is a group session. At the end, we ask the group to share, you know, after today, what is the one thing that you're likely to change, to be more involved in your care? And you get the expected answers, as in, I'll try to lose weight, or eat more healthy, or check my blood pressure. But we also have other remarkable comments that are equally as important, such as, from now on, I'll take a picture of my medication so I always have it with me, or I will check with my GP when my next appointment is, or I will do a urine sample. So all of these small nuances also show increased engagement. And I think that's really important.

Andrew Frankel

Joanna, that's incredibly helpful, and really summarises the work you've been undertaking over these last three years. And I think the three key points to remember when informing people about CKD diagnosis, we need to break it down to, what it is, what does it mean, and what can we do about it? And then encourage them to get educated and activated, and particularly encourage them to attend the Know Your Kidneys education session.

The second thing is that language is important. We should say Chronic Kidney Disease, rather than just kidney problems, or kidney function, or not use words such as renal, and explain what the stages mean and that they are not related to cancer. Be really clear about the medications that are available and we are using to treat Chronic Kidney Disease, and how they differ in some respects from what people may perceive as their primary purpose, such as blood pressure treatments such as Ramipril, or diabetes treatments such as SGLT2 inhibitors.

And we need to engage people to transform their lifestyle and understand that's going to take longer, and will require a number of appointments over the years. But give them useful tips, tell them where to go to get advice, get information, and use this concept of the kidney health check so that they can become the master of their own health care management plan. Jeremy, any final thoughts from you after that summary?

Jeremy Levy

No, your last sentence, that issue that we're talking about kidney health and not kidney disease, even though we might have labelled somebody as having chronic kidney damage or disease, reinforcing this is all about maintaining kidney health, I think is a really useful place to end. And it changes the whole nature of that dialog with patients. We're keeping them healthy. We're not managing a disease. And that changes the whole mindset about what people may do about it.

Andrew Frankel

Thank you very much, Jeremy, and thank you so much, Joanna.

Joanna

Thank you.