For Kidneys Sake

Kidneys vs Heart: The Battle HF Nurses Navigate Every Day

• North West London Kidney Care • Season 1 • Episode 25

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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 of For Kidneys’ Sake, Prof Jeremy Levy and Dr Andrew Frankel are joined by heart failure specialist: Carys Barton, Consultant Heart Failure Nurse and the first nurse to chair the British Society for Heart Failure. Together they unpack what heart failure nurses actually do, why they’re the “glue” in a complex system, and how they navigate the tricky intersection between heart failure and chronic kidney disease, from acute and community services to virtual care and palliative support.

They explore HFpEF, HFrEF and 'mildly reduced' EF, potassium panic, diuretics wrongly labelled 'nephrotoxic', and the art of accepting creatinine rises without reaching for the stop button. Carys is unapologetically pragmatic, championing rapid optimisation, potassium binders over drug withdrawal, and educating patients and families as the true game-changer. If you look after patients with heart failure, CKD, or both, this is 25 minutes of high-yield insight. Tune in and share it with your cardiology, renal and primary care colleagues.

 Top 5 Takeaways

1. Heart failure nurses provide essential continuity: linking hospital, community and primary care.
2. HFpEF matters: half of patients have it, yet many services still don’t see them.
3. Creatinine rises are expected: look for trends and new baselines, not panic points.
4. Potassium needs context: don’t stop life-saving meds for a single reading over
5. Rapid optimisation works: starting all four pillars early is safe, even in CKD. 

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

Andrew Frankel 
And I'm Andrew Frankel, a colleague of Jeremy's, also at Imperial College Healthcare NHS Trust, and welcome to another episode in our podcast series for kidneys sake.

Jeremy Levy 
Andrew, it's a pleasure to be with you again. And today we want to talk more about managing heart failure in people with chronic kidney disease, CKD. And really importantly, we're having this conversation with a nurse colleague, Carys Barton, who also works at Imperial. We're not always looking only for Imperial people, but she happens to be a national leader and happens to be also working at Imperial. And Carys is a consultant heart failure nurse and more importantly, is the new chair of the British Society for Heart Failure and the first ever nurse in this role.

Carys welcome. We're really impressed and it's really nice to have you here.

Carys Barton
Thank so much for inviting me. love to talk about heart failure, so this will be interesting. Thank you.

Andrew Frankel 
So yes, welcome Carys. We've talked about heart failure before in episode 9 of our first season with another of our colleagues, Dr Dominique Auger This time of course we know we're talking with a specialist heart failure nurse and many people who listening will know that across the UK much of the day-to-day work of managing heart failure is done by community heart failure nurses, not by doctors.

So let's just set the scene, Carys. Can you tell me what heart failure nurses actually do, and what do you think are the main issues in relation to kidneys and CKD?

Carys Barton
Okay, so we have acute and community heart failure nurses. In fact, at Imperial, we are an integrated service, so we're very lucky. I think that's the best model of care. We care for our patients as inpatients and then follow their journey all the way back into their homes and beyond. So heart failure specialist nurses play a central role in delivering high quality person-centered heart failure care across hospital and community settings.

They are absolutely central to how we care for people with heart failure. They assess, optomise medications, keep a close eye on fluid balance and kidney function, and help people understand their condition and manage it day to day. They are absolutely the glue that holds the system together, coordinating between hospital and GP and community teams, discharges are safe from hospital and preventing avoidable admissions through rapid access and support. We also do a lot of palliative care and end of life care, but we also lead on research pathway design and service improvements. So their impact goes way, way beyond ⁓ just the clinic room. also fair to say that we are the consistent healthcare professional for these patients with their families across home, primary, secondary, and now virtual care settings. One of the biggest challenges we face is kidney disease, as you've just mentioned there.

Heart failure and chronic kidney disease go hand in hand, and when the kidneys struggle, everything becomes much, much harder for us and the patients. Diuretics don't work as well, fluid builds up more quickly, and it can limit how fast we can introduce and increase key heart failure medications. Our patients are prone to high potassiums. Acute kidney injury, but that's an interesting conversation, isn't it? I think that's a of a phrase that's kind of thrown about a bit too often.

But especially during infections and when they're dehydrated, and getting the balance right and the treatment to help the But not so much the kidneys, it's a constant and careful dance. But that's where we really excel, monitoring, adjusting and supporting people through a condition that affects multiple organs, not just the heart.

Jeremy Levy 
That's really, really helpful, Carys. I think that continuity is so important, which we've sort of lost in some aspects of the medically doctor-driven healthcare and it seems that that's come back in with heart failure nurses. I'm going to move us on to some specific topics. I want to clear up one issue because in my mind, or certainly when Andrew was young, heart failure was really simple. It was just heart failure. And now it seems to be much more complex. So really tell nephrologists and everybody else out there listening, is there really...

crudely a difference in the heart failure management of what we now call HFpEF and HFrEF. Or aren't they really treated the same way?

Carys Barton
⁓ Jeremy, that was harsh. We're all mature, experienced clinicians here. So heart failure isn't just one condition, it's a syndrome. So it's a collection of signs and symptoms. And the type someone has really matters to what treatment is best evidence. Having said that, the symptoms for the patients remain the same. They don't particularly care in that regard what type of heart failure they have. But the first is heart failure with reduced ejection fraction where the heart's pumping and ability is weakened.

And this group benefits most from our proven life-saving medications and in some cases advanced devices as well. There's the heart failure with preserved ejection fraction and that's where the heart squeezes normally but is stiff so it doesn't fill properly. So the same kind of issue occurs, there's not enough cardiac output. Treatments focus more on managing blood pressure, weight, atrial fibrillation and other comorbidities. But having said that,

NICE have just released their new heart failure guidelines and they do recommend two therapies specifically in HFpEF regardless of those comorbidities. So that's exciting for us to have things to treat these patients with. We then have this mildly reduced ejection fraction. I have my thoughts on that, but it's a group that still gains benefit from the core heart failure drugs and shouldn't be overlooked. If someone is symptomatic, they should be treated.

We have right-sided heart failure, often linked to lung disease or high pressures in the lungs, which presents more fluid in the abdomen and legs. Also remember, we can have acute or chronic or acute on chronic heart failure, which shapes how urgently people need to be treated. But it does matter. The type responds differently to medications, has different risks, and requires a personalised management plan.

And understanding the type of heart failure and the etiology of that heart failure is key to giving the right treatment to the patients at the right time for the best outcome. I have to say in here though, mentioning HFpEF services, as you've given me a platform to sit on my high horse here, I'm going to point out that lots of services are not commissioned to see patients with heart failure with preserved ejection fraction. And that is absolutely tragic and it's an absolute travesty because these patients, take up about 50 % of the cohort of heart failure patients. They are frequent flyers for hospital admission, they're multiply comorbid, and now we have therapies to treat. So if you've got any commissioners listening here, please think about commissioning heart failure services for PEP.


Andrew Frankel 
I don't mind you talking to the Commissioner through us, that's absolutely fine. And I really do need to step in here because I'm used to Jeremy referencing my age. Although I have to say that in a recent conversation with Jeremy, I did get my age wrong and Jeremy is still trying to work out whether I was lying or dementing, but never mind. Carys let me ask you my question. In the patient with CKD, when you start treating heart failure,

You often see this change in creatinine and GFR. You know, I know you already referred to the fact that we bandy the word acute kidney injury around perhaps too much, but you see this change. And I'm sorry for sounding like a psychoanalyst, but tell me a little you and your colleagues feel about this. When do you get worried?

Carys Barton
Okay, so Andrew, you're not dementing. You have cognitive overload, as we all do. But when optimising RASSi therapies in patients, loop diuretics, and even SGLT2 inhibitors, we anticipate a drop in EGFR and a rise in creatinine. And we tend to check renal bloods 10 to 14 days post increase or initiation. We also know that checking this sooner may paint a worse picture as we wait for the normalisation, so we try very hard not to check it during that time.

A rise of about 30 % in your creatinine is probably acceptable. However, even in greater rises, I think we have to be pragmatic and take a holistic sort of individualised approach with these patients in being able to assess risk versus benefits in these patients. As the risk of reducing RASSi even stopping it, which is really common outside of renal cardiology teams, will carry absolutely dire consequences.

The latest NICE guidelines actually say to consider lower doses and EGFR less than 45, but again, I'd be pragmatic as these are renal protective drugs. And in this context, we really must put the term nephrotoxic in the bin. If someone has highly symptomatic HFREF and fluid overload, they ultimately want to feel better and for longer. So since we have SGLT2 inhibitors now, we're working more closely with our renal metabolic teams. This podcast is a complete example of that.

So we've got that phone a friend option as well, which I think we must absolutely collaborate and work much closely together now.

Jeremy Levy 
Carys, that's really good to hear, it? I mean, Andrew and I will be absolutely delighted to hear how, I mean, not necessarily relaxed, but comfortable you are with those changes in GFR.

Andrew Frankel
Jeremy, we get a lot of referrals in for people through our service who have been optimised for heart failure from GPs with changes in kidney function.

And I think what you've said really does reinforce the answer I often give, which is it doesn't matter as long as they've reached a new baseline. And it's about rechecking to see actually are they at a baseline or are they truly on a progressive decline? And I think for me, that's a key factor that determines how one intervenes. Sorry, Jeremy, I did interrupt you.

Jeremy Levy 
No, no, no, I completely agree. it's so good to hear this and so good to hear the way that heart failure nurses are thinking about this as well. The other topic that we get lots of queries about, which is going to clearly overlap, is this issue about blood potassium's caries. And particularly when nowadays we're adding the MRAs, the mineral or corticoid antagonists, together with renin-angiotensin blockade. And we watch the potassium's rise, which exactly as you mentioned before, is sort of completely predictable.

But then the potassium starts to rise into the high fives, 5.678 and in primary care that causes lots of unhappiness. Our heart failure nurse is comfortable with this because we really do know that in GP land, in primary care, that we get endless referrals as well for people with potassium that are rising and again drugs being stopped. So again, what do you as your teams think about the potassium issue and when you get worried?

Carys Barton
So ⁓ I completely agree and we get very frustrated about this. Andrew's just alluded to, in fact, it's about trend as well, isn't it? what is the trend for this patient? So don't just look at a one-off spurious result. Have a look at the trend for that particular patient. So many patients have their meds stopped due to a rise in creatinine and very commonly a rise in potassium, even if it just hits over five.

And funnily enough, they get all their meds stopped, nobody tells the heart failure team and they get admitted to hospital with decompensated heart failure, who would have guessed? And we know that admission with a decompensated heart failure carries a 10 % mortality risk and an increased mortality risk in the following, the year following admission. So we absolutely do not want this. This is also costly to the NHS, but costly to society, costly to the patients. It's frustrating for us and we are rarely able to optomise therapies to the previous doses.

thereby reducing the patient's long-term outcome. So if I've sent somebody in on a high dose of Entresto, for example, and they get them stopped, I very rarely get them back on the higher dose again. We don't panic about serum potassium until it starts to hit the sixes. And even then, we start to think, well, did it get taken at the GP practice? Did it ride in a bus? Did it go over all the speed bumps on the way to the hospital? In which case, we've got some, you know, we have hemolysed potassiums.

And the patient's trend, like I said before, should absolutely be taken into account because they can be spurious. And, you know, when you've got somebody that's got a potassium of six and actually it was 4.5 the week before and you haven't changed anything, you've got to question that, haven't you? even when genuine and they have got hyperkalemia, we absolutely would prefer to put in a potassium binder to stopping or these therapies because there is significant risk for these patients if we do stop them or reduce them.

Jeremy Levy 
That's great to hear your threshold a bit like Andrew and mine. In our brains six is worrying and not even worrying but might give us cause for thinking not five which is what sometimes happens out there in the community.

Andrew Frankel
So, Carys, we had a session right at the beginning of our podcast talking about education and how in primary care it's sometimes quite challenging for primary care clinicians to talk about chronic kidney disease. And we had a wonderful session from Joana Teles giving us great advice about how to approach this. I imagine for you, you have a similar approach for heart failure. But when you get heart failure and CKD, that can be quite challenging bit of a balancing act of sort of what are you going to tell the patient. Do you have any thoughts about your approach here?

Carys Barton
So educating patients and carers is absolutely vital. I'm going to segue a little bit to say that back in 2001 there was a ⁓ randomised control trial that evidence significant benefit from heart failure nurses by optimising therapies, but also by educating patients in self-care, informing your patients, letting them know often the first time they see CKD is on their letter and it causes complete panic to them. And you have to rationalise this with them and explain it very carefully with the pragmatism that we've been talking about.

But if you were under the care of the heart failure nurse in 2001, you are five times less likely to get admitted to hospital. And that's when we did not have all of these therapies. We only had a couple. So that would suggest that education was significantly important. You know, I think we over-medicalise things a lot these days. And actually, we need to empower these patients. This is just as important as the treatments we have now to educate these patients and have them take care of themselves as well. They are the one constant in their care.

So we ensure our patients, even when they're stable and discharged, have a contact number for information on when to escalate concerns. And we also importantly tell them if anyone changes their meds outside of the heart failure or the renal team, you must contact us. And I've had patients turn up to ED saying, no, no, no, no, you can't do that. You've got to contact Carys on the heart failure team. She's going to manage that. And actually, that can be really, really helpful. Because if you turn up to ED with a potassium of six, they're really, really busy and they stop there, you know, they stop their drugs and everything, they just send them out. You can see that's the quickest and safest thing they have to do. They're very much under pressure. But as I said, we have all of these problems. But CKD is put on quite arbitrarily at times, I feel, on people's notes. And we have to be really careful in explaining that to our patients so that they understand what the context of that really means.

Jeremy Levy 
And while you're on topic of education, when we were talking earlier, you said a very interesting thing for me about the educating families around the patient with heart failure. Tell us something about that and what your thoughts are about that. But it's not just the patient with heart failure, is it?

Carys Barton
It is not, and actually we're missing opportunities. And if COVID has taught us anything, it's about the collaboration, isn't it? And the way that we work better together and making every contact count. These patients often come along with their family members who may actually have, maybe genetically predisposed to some of these things as well. And actually, by the time they're in my clinic, they have heart failure and actually the horse has bolted.

But there are lots of modifiable risk factors that we need to be thinking about here. We need to be thinking about obesity as a pandemic in the UK now, in fact, worldwide. Diabetes management, can we reach out to our practice nurses? CKD management, can we get that much earlier on? How do we empower people to look at that better? For one example, we do urinary ACRs now. We've been terrible at doing that in heart failure. Really, really awful. I hate to say it, but heart failure nurses probably don't do we, do they? But now we're getting much better at that, and we're much better at correlating that with eGFR and saying, actually, is this patient at risk? Should we be doing something now a bit sooner? So I think if a captive audience ⁓ in your room,make sure that you pass that information on and try to make this different for the future generations.

Jeremy Levy 
That's really helpful, Carys. For the last couple of minutes, let's go back to couple of medicines and I want to ask about diuretics, which you mentioned earlier, because very often they get labelled in this setting of heart failure and CKD, they get labelled as nephrotoxic, but they really help people feel better, don't they? What are your thoughts about that?

Carys Barton
So we always say that diuretics are not a prognostic medication, which in fact, I suppose in reality they're not, but actually they kind of are, because they're going to keep you out of hospital and keep you going, aren't they? So it's kind of a strange thing to say. But in someone who's fluid overloaded, they need diuretics. There's no option. They have to have them. No one wants to be admitted, kept in hospital, or even, God forbid, die, because we're trying to keep the kidney numbers looking good.

It can be a juggling act, but often offloading patient actually improves kidney function and people need to understand that as well. I also have to say it's really important to down-tie trait diuretics when the patients are euvolemic. Dehydration is not a good thing for the kidneys. And I have patients discharged into the community setting and they come back and see me, you know, sometimes years later and they've been taking, you know, frusemide 120 twice a day and you're like, how on earth did that happen? When you're completely euvolemic So they are really important key drugs. They make patients feel a lot better. They keep them out of hospital. The numbers are the numbers. People need to feel well.

Andrew Frankel 
That is again incredibly useful, and it just shows how the world has changed because 15 years ago, I think cardiologists and nephrologists used to be at war over diuretic dosage. We are no longer in that situation. We all recognise how we use diuretics correctly and indeed we did a whole podcast diuretics and kidney disease and so that's really helpful that we are now working together and giving the same messages. 

Jeremy Levy 
And then I think really finally, to wrap this up in this fantastic discussion, we know that heart failure teams now really want to start your prognostic drugs and we know this whole family of drugs that you're using really very rapidly and essentially want to bang in there and get everything going. In patients with heart failure and CKD, do you see this as a problem or not at all and you're very happy to manage it?

Carys Barton
No, very happy to manage it. think we've again through COVID we've been very pragmatic. This is where the rapid optimisation really started. And now I'm really pleased to say that our national guidance is actually mirroring the ESC guidance, which we understand the aggregate benefit of these drugs. We used to go up in an algorithmic way on say an entire ACE inhibitor before we gave an MRA, by which point. You've run out of kidney function, you've run out of blood pressure, you've run out of everything, and that's the only drug that they're on. But we understand that aggregate benefit is better. And also, if you think about it from a pragmatic perspective as well, not only is this better for the patient, but if all four pillars can be started on a patient if they're admitted to hospital rapidly, this takes huge pressures off services in the community. I mean, we've got this pandemic of heart failure coming our way. It's set to double by 2040.

We have to make sure that we are doing this in a pragmatic, clever, making every contact count way. Now there was a big trial called StrongHF where it was run everywhere apart from the UK, I think, that showed that actually it was safe, and it was safe in people with kidney disease. But it was run by physicians, which is great and good, but I'm quite sure all the physicians in the UK would bulk at the thought of seeing somebody every week for six weeks to optomise them.

So we rerun it here in St. George's led on that with nurses doing it. And again, it's proved to be very safe, very effective. What used to take us six months to a year can now take six weeks. How could that not be good for everybody? Especially when you know that the impact of these drugs can kick in between two and six weeks. We're depriving our patients if we don't get them optimised rapidly. And we are good at it. We're not as scared of it as we used to be. And that's such a good thing.

Andrew Frankel 
So we have a lot to learn from the cardiac world in the renal world given that we also now have a number of drugs that we need to get patients optimised on. So Carys, that has been a really wonderful session. It's been great to hear from you. Perhaps you could let us leave with your three key takeaway messages.

Jeremy Levy
three key takeaways, Carys. And we know you can talk for another half an hour about heart failure.

Carys Barton
I know, I know, I was gonna say I thought this was cruel actually to only give me three, but I've got it down to three. So I'm going to say do exactly what we're doing right now, collaborate and communicate with other services. I know more about renal disease and more about diabetes than I've known in my 40 year career. I know you can't believe it, 40 years, but there you go, there we have it. ⁓ Educate patients and carers in their disease management. They are the constant one person.

That's always going to be the conduit for all of the information. They're going to know what we've said, what the GP said, make sure they know how to take care of themselves and how to escalate concerns rapidly. So because these people will peak and trough. And Jeremy's probably not gonna love me for my third one because it's that plea to the commissioners again, please commission services for heart failure with preserved ejection fraction. And actually, Jeremy, you should be supportive for me on that because a lot of these patients are renal patients.

Jeremy Levy 
Very supportive of Carys. Delighted for you Whatever you want to talk about. That's been a really fantastic conversation, Carys. I'm personally thrilled that you're now running the British Society for Heart Failure. You're a dynamic leader with much to say and it's been really great having a conversation with you.

Carys Barton
Thank you so much for having me.

Andrew Frankel 
Absolutely, absolutely, Carys Thanks very much.

Carys Barton
Thank you, you're welcome, I've enjoyed it.


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Dr Andrew Frankel

Host
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Prof Jeremy Levy

Host
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Joana Teles

Co-host
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Heather Pownall

Producer