Follow up Pacemaker care. Remote Monitoring - does it work for you?

Here in the UK, some hospitals still only provide home monitors to patients with a serious heart condition or dangerous arrhythmia that requires close surveillance.  If a pacemaker patient is stable, they might only receive a routine in person annual check instead.

Fortunately, most of us today have some form of home monitoring which when working well can certainly help to save time, money and give our doctors early warning of a deteriorating heart condition or of a pacemaker malfunction.  

Does home monitoring give you reassurance that nothing important will be missed between hospital visits?  

Do you know what your health care authority or hospital policy is with regard to who should receive face to face pacemaker checks and who will receive remote checks annually or even perhaps less frequently?

Introducing home monitoring, without adequate follow up and explanation of how it actually works can be stressful for patients, particularly vulnerable, elderly patients who may struggle with new technology.  In the absence of face to face appointments, I know many members feel that they have been abandoned and that if something bad happened they would be strictly on their own. To be told “if you hear nothing back from us following a transmission, you can assume that all is well” is hardly reassuring, especially if a patient is experiencing symptoms.  Some members don’t receive notification for example when their monitors are not transmitting data, due perhaps to their extended absence on holiday (!) without advising their clinic, or due to a faulty monitor.  Either way, it doesn’t inspire confidence, does it?

Unfortunately not all elderly patients can confidently set up and manage monitoring equipment or always notice when things go wrong, particularly in the absence of regular face to face appointments when they can be fully assessed by a clinician. 

Recently I have seen some concerning remarks from members about their difficulties with home monitoring and I thought it would be helpful to discuss this important subject again. I know many members would like to know how to better manage this part of their care.  Any comments, suggestions, advice on what you have found helpful, will be welcome, although I fully appreciate monitoring care will be different depending where we live and how our health care is managed, paid for?  Thank you all


29 Comments

Monitoring

by H van Dyk - 2024-01-08 06:04:06

Last time I met with the pacemaker technician, I asked him about the home monitoring. He told me this was not for me, because my condition was very stable.
However, I make it a habit to check my blood pressure a couple of times per week. And also my heartbeat. Medication is important too. I never forget or skip that.

Home monitoring

by piglet22 - 2024-01-08 06:23:18

Gemita

You know my views on this subject

On your two questions

Reassurance

Negative. The combination of old pacemaker, old monitor (GSM/NFC), no face to face and approaching replacement fills me with foreboding.

Add to this an emergency replacement PM in 2016 despite 3 monthly face to face and no monitor reporting of PVCs, my confidence in my health trust cardiology is rock bottom. Nearly 10 weeks now and no results from an  echocardiogram.

Yes, I feel cut off and a part of an NHS experiment in just how far you can stretch the meaning of remote.

Policy

If there is one, patients have no say in it and the whole thing is a one sided attempt to cull certain groups of patients from routine healthcare.

Virtual clinics only took 10 to 15 minutes once a year and were pretty poor quality having to ask for information, but now, apparently, pacemaker patients aren't worth 10 minutes a year of their time.

Saying that they will only contact you when changes are apparent is wrong.

Anyone with a heart condition lives with it every second. Just why they can't afford 10 minutes to tell you all is well, is beyond me, and smacks of an uncaring attitude. I wonder what they do sometimes.

On top of this is the reliability of the home monitor.

I'm on the second one after the first failed to charge the reader and this second one also went into some error condition recently.

The hospital has done nothing on both occasions and it has been left to me to contact Medtronic in the Netherlands.

Not once have they followed up to see how I am getting on with the change of policy.

Fortunately, I'm reasonably clued up on technical issues and cope reasonably well with power cuts, equipment, including pacemaker, failures etc., but many will be blissfully unaware of what is going on.

I'm currently taking this up through my MP and the hospital Patient Liaison Service.

I know the NHS is struggling, but cutting services like this is a dangerous and cavalier way of doing things.

home monitoring

by new to pace.... - 2024-01-08 08:40:06

Thank you Gemita for bringing up this topic.

Here in the US well at least for me here in Florida.  I have the Medtronic Bedside monitor.  Has a round green light which goes off at dark.  When i received the monitor at home called them and they helped me set this up.  I also went on the Carelink site and set up the  email notification for after the quartly transmission.  Had my sister go on this site to set up text message to  her(healthcare suroggate).  That the transmission was successful.

  Nightly monitoring  and also quarterly.  Which i am told is for Medicare to be billed (in therory because  the EP's signs the report electroniclly).  This is done automaticly around midnight,  but sometimes is not transmitted until later.  If i am going to be away for what ever reason do notifiy the Cardiologist's office.  Just as a precaution. Knowing the infromation is stored in my pacemaker and will transmit when i return to the bedside monitor.

I also go into the Pacemaker Clinic once a year where the reader(hockey puck) is put on the pacemaker.  I also see the Cardiologist once a year not at the same time.  Have not seen the EP since my implant in 2019.

Only one time did the Cardilogist's office contact me after being notified by the monitoring company that i was having many high episodes.  If, they had asked me first would have told them was having a reaction to a supplement and had stopped taking.  But no, so had Echo done. 

After i receive the email notice that the transmission was successful, I contact the Pacemaker Clinic and ask for  a copy of the "log events" and Summary.  Which i then go an pickup.

I am one of those seniors who does not have a smart phone yet.  So for me this bedside monitor works.

new to pace

Any system based on 'if you don't hear from us, assume that it's all OK' is fundamentally bad.

by crustyg - 2024-01-08 09:27:38

It ought to be obvious to anyone that telling people - especially patients in a healthcare setting - to assume that everything is OK if you don't hear from us is a disaster waiting to happen.

I could spend an hour listing actual UK NHS adverse events where this foolish approach has led to patient harm.  Or just remind people of the Herald of Free Enterprise, which sank because the captain set sail without positive assurance that the bow doors had been closed.  To be fair to him, he'd been badgering upper management about a CCTV display on the bridge that would show the bow doors, but was refused.

But we should be careful to disentangle remote monitoring from 'assume it's OK'.  They aren't the same and don't have to go together.  It's perfectly possible to implement remote monitoring that has a positive assurance step - send a copy of the PM report to the patient after each remote monitoring session.  Not appropriate for everyone, but at least every patient would know that something has been done, and hopefully reviewed/checked.

I think it makes sense to have low risk, simple cases monitored remotely (simple-minded == me?) and save time and money and clinic time for more complex or rapidly evolving cases.  And I can imagine a system where - gasp - the EP-team ask the patient 'Would you like or prefer remote monitoring?.  Patient choice - in PM-land?  Shock, horror!

Kinda Frustrating - Lack of Feedback

by DoingMyBest - 2024-01-08 10:07:42

I only know my Merlin home monitor works because I've had an occassion to be on the phone with the pacemaker clinic and was instructed to do a download while they watched the result. Otherwise, there is no feedback until a 3-month remote interrogation. In the several months I've had it, I've only been awake once when a blue light was flashing, indicating an automated transmission was in progress.

In this modern age of technology, this is really pathetic. They could easily add feedback systems - a text message, an email, a phone app, a patient portal through the web. There are any number of ways this could be implemented. SOMEBODY SEEMS TO THINK ITS NOT WORTH THE TIME, EFFORT AND EXPENSE to implement simple feedback systems for us. They seem to have the attititude that extra information will only cause more worry and result in more burden on the doctors. I think this cuts both ways. Too little information also causes more worry.

If it's only a matter of money, how about offering feedback as a subscription? I know that wouldn't be popular with everyone, but at least then you'd have a choice.

Wouldn't it be nice if people from the pacemaker companies monitored our discussions here. In my dreams!

 

Home Monitoring & Alert Settings

by Penguin - 2024-01-08 10:20:05

My comments are about the parameters used to programme alerts and events.  How these parameters are programmed really matters. They need to be appropriate (and achievable if there is a persistent problem) so that the pacing clinic can see what is happening to the patient.  It's worth discussing them with your EP. 

Relying on home monitoring entirely, isn’t a great idea IMO. There is a lot that devices can miss or misreport due to various factors such as programming, limitations of the device itself, recording capacity and reporting formats. I've lost count of 'events' that devices have flagged up over the years which pacing techs later dismissed as device error.  Misreported or missing data causes misunderstandings, dispute and dissatisfaction.  Human beings are the component that makes sense of programming and data as they can intercept and avoid / explain much of this.

In your shoes Piglet, with little human communication / interpretation on offer,  I wouldn’t be happy either.  

I also agree with H.Van Dyk about when HM is / isn’t useful.

Edited for length / sense.

Remote Monitoring

by akaDM - 2024-01-08 10:24:37

I don't have a home monitor and don't see one being helpful. More likely to produce something to worry about than allay anxiety. My condition is stable. I monitor pulse & blood pressure myself. Only need occasional check to monitor for potential deterioration - which is possible but likely to develop slowly if it happens.

I'm not at all convinced that remote monitoring is cheaper than annual checkups. I'd see its prime function as being for patients with volatile or potentially volatile conditions which would need a timely response.

works for me

by Tracey_E - 2024-01-08 10:26:31

But I am in the US, not UK. If something feels off, I initiate a download then email the NP to let her know to look for it and she gets right back to me. Sometimes she updates me after a download, sometimes she forgets. Since I am stable and not particularly worried about it, I usually forget to follow up and ask.

I've only had an issue once, and she called me as soon as she saw it.

I realize I'm not "normal". I've been paced a long time, am very stable, am confident in my care, and don't give the pacer a thought most of the time. When something comes up, my experience has been that my team is responsive. For years, I went in for quarterly checks, and any time anything came up, they had to call the rep to meet me at the office. I much prefer this way, a time saver all around. 

Remote Monitoring can b3 helpful

by Graham Harry - 2024-01-08 13:43:34

I have myMerlinPulse app on my phone which uploads data to the hospital once a day for my 4 month old St Jude Gallant CRT-D. The hospital has set red flags for certain conditions and unless these flags are exceeded the data is not checked. However when I attend for a check up (5 times so far!) it is really useful that the technicians can interrogate the data to see what has happened in the past. Also I can phone up the clinic and ask questions about the data where they are are always helpful. I'm not saying it's perfect but it's reassuring I think. I was told that if the hospital had more staff the data could be checked more often but we know that's not going to happen. 

I am stable but...

by USMC-Pacer - 2024-01-08 14:01:19

All I have for a monitor is the app on my phone from Medtronic - MyCareLink

It's a good thing I am stable as this app has failed 3 times since I've used it starting in March. All 3 times required Medtronic customer support to fix it and tell me it's my connection issues when every time it was on their end. After 20 questions about what phone I have, what operating system, last time it was updated.. I may need a new phone yadayadayada.. I have the iPhone 14 so it's not that. Always comes back to them...One of the times, the rep told me they haven't had a connection with my device for over a week... "And you are just calling me now?"  rant off

Anyway, my clinic is very responsive to my needs. I upload a remote quarterly and have the report on the portal within hours. When I call witha  question / issue I receive a call back that same day sometimes within minutes.

 

Thank you all for your helpful feedback.

by Gemita - 2024-01-08 16:03:22

H Van Dyke and akaDM  I am no longer nightly monitored, only on an “as needed” basis and I control when to transmit data depending on my symptoms.  My rhythm disturbances are well controlled.  Fortunately I was invited to attend clinic frequently over the last year or two for Settings adjustments.  

I much prefer face to face appointments when I can ask questions and get some decent feedback. Machines can get it wrong.  For example a pacemaker ECG ideally needs to be read by a qualified cardiologist or technician to determine/confirm the stored rhythm disturbance present before safely treating.  

I agree it is important to self monitor blood pressure and heart rate when these appear out of control.   I too am not convinced that remote monitoring is a cheaper option compared to face to face appointments, certainly not if the department is well staffed and patients receive good follow up.

Piglet your lack of care has been dismal and I am glad you are fighting back not only for yourself but for others who may not be able to do so.  I am glad you are taking this up with your MP and hospital Patient Liaison Service.  As you say, a heart condition requiring pacing support is usually for life and can progress over time.  It is important that we treat any new symptoms promptly before our condition deteriorates or causes other symptoms like syncope. 

I hope your appointment in February is helpful and that your consultant will give you copies of your echocardiogram report and anything else that you request and will have the time to answer a few more questions on PVCs and what more can be done to control these through perhaps pacing adjustments either now or with a new device?

New to Pace.  You seem to have a well controlled monitoring system out there.  I didn’t realise (or remember) you were nightly monitored as well as quarterly, so a lot of data.  Over here too, we don’t usually see an EP unless our rhythm disturbances deteriorate. 

Yes I too received several calls in the past during or after high rate arrhythmia episodes and it gave reassurance that they were actively watching for significant tachy arrhythmias.  Despite not having a smart phone, you certainly have good access to all your data (from which I have benefitted too), so please keep it coming.

DoingMyBest, I see you are not getting decent feedback.  I agree with you “too little information” causes more in the way of concern than too much.  I can deal with a lot of information and attempt to make sense of it but too little information makes me question everything and in the long run causes more work for my team.  Like Piglet, I have waited months for the results of my “sub optimal” echocardiogram.  I have now received a copy, but it needs to be explained.   

I believe people from pacemaker companies are indeed members of this Club, so will see our discussions!  I wouldn’t mind paying a subscription to have some valuable feedback occasionally from pacemaker companies or medical professionals.  Fortunately I am freely receiving this from my pacing clinic already when I email them with questions. 

Crustyg, I couldn’t agree more. If I had waited for my husband’s blood test results instead of assessing the patient and calling an ambulance when he was last poorly, he would have gone into kidney failure from Sepsis. 

I have been extremely fortunate with my pacing clinic.  They are respectful and always answer my questions, although I have struggled to get copies of my pacemaker records in the past as I think you will know.  I now have MyChart through Guy’s & St. Thomas’ hospital which allows me to securely and easily access my health records, so I am hoping access will improve. 

I am all for letting the patient decide whether home monitoring is right for them, or at least letting them know how they can access information whenever they wish.

Tracey_E, remote monitoring works well for you;  you are clearly stable and if I may say, you seem to have a truly caring team watching over you.  What a success story for pacing and for home monitoring but then who wouldn’t want to treat you and to find out what keeps you motivated. I am sure you can be a challenge with your settings though and have needed adjustments over the years to keep up with your activities. Long may it continue

Penguin, I have to say you have exposed the difficulties with home monitoring and with our devices.  They are only as good as the information contained in them. Our doctors clearly set up algorithms/parameters that have to be met before data can be stored, recorded and reported on.  There is clearly limited space to store everything on our devices and it can be disappointing to learn what cannot be reported.  Clearly any ongoing patient symptoms should matter more than any data contained in the device logs and we need to act based on our symptoms at any given time.  To send a transmission to our clinic for analysis when we are feeling unstable will not get us the emergency help we might need!

Graham, I am so pleased that you are receiving good care.  Clearly your heart condition and need for a defibrillator helps you to get the support you need and your alert settings are there to help keep you safe. Your support sounds perfect to me and you are clearly a patient who wants to understand what is going on and that must be a delight for your team. Thank you for your challenging questions.

USMC-Pacer, Medtronic, I am surprised they haven’t got this sorted and even more surprised that you were not alerted that no transmission had been received for over a week.  Who monitors these things?  It should have been picked up.  I use a special Reader to connect to the App (also have an iPhone 14), since I do not have a blue toothed enabled pacemaker.  You seem to have problems with the monitoring equipment rather than with your excellent team and why doesn’t that surprise me?  I am glad you are stable after your recent surgery.

Gemita

by USMC-Pacer - 2024-01-08 17:35:13

Rhythm Management out of Washington DC does the monitoring for my clinic wihich is here near Boston. I have no idea why they chose them. They also keep sending me bills for the quarterly checks which are covered by my insurance. I told them last time if it continues, I will discontinue their service and report to my clinic directly. That fixed that issue :)

Interesting and timely discussion

by piglet22 - 2024-01-08 18:32:39

In an ideal world, we would have face to face regular clinics backed up by active home monitoring.

There are two ways to look at home monitoring. One is the first above, the other is money.

Here in the UK, it's largely money.

Primary care is still reeling from Covid and cardiology services weren't slow to follow suit.

The new policy of download and callback on problem only is a dangerous step too far.

You could go for a decade without seeing or hearing from anyone.

Home monitoring has done nothing for me. It missed debilitating PVCs for starters 

If you have a modern pacemaker, active monitoring and regular quarterly face to face clinics, then you are quids in.

The UK NHS is struggling and today marks the end of another 6 day strike by junior doctors.

The only losers in this are the patients, as ever.

Doctors want a 35% pay rise.

This is a direct result of government and central banking mismanagement of inflation.

The UK should be a prosperous developed country but it's not.

Home monitoring is a symptom of that and should serve as a warning to others.

When I read about quarterly clinics, seeing the rep, reports on your settings and conditions, this is the stuff of dreams.

The reality is just get on the best you can and hope that nothing goes wrong.

 

Manufacturer's Advice Requested Please

by Penguin - 2024-01-09 06:18:57

When HM first came out, I think I remember reading that it was not intended to replace in person clinic checks and that these should continue at least annually. 

This was a long time ago and I can't claim to have read it accurately nor can I quote a source.

However, after reading this thread I would like to know what the current advice is from manufacturers re: Home Monitoring and the frequency of in person checks? Does anyone know? 

The stuff of dreams?  Lack of feedback?  Monitors not working.

by Gemita - 2024-01-09 06:20:39

We still have some way to go, don’t we?  But we can all make a difference if we keep up the pressure, keep challenging our teams, keep asking questions, keep learning.

Face to face cardiology/EP appointments and regular in person device interrogation is becoming the stuff of dreams in many parts of the UK, but for any acute illness I am still fortunately able to get early appointments with consultants or to attend A&E.  

What is becoming more important for me now, is to receive “adequate” feedback from any investigations/monitoring that I may have, so that I can try to prevent a deterioration in my condition.  

We all have to work harder to take care of ourselves, to “prevent” disease and this is what most of us are already doing by leading healthier lifestyles and actively monitoring blood pressure, heart rate, glucose and other conditions.  I will also continue to request access to my health records to help manage and understand my condition, health records that cannot generally be withheld.  

We are making a difference, but we cannot afford to let our guard down

Believe the recommendation is still for an annual in person check

by Gemita - 2024-01-09 06:39:55

Penguin, 

It would appear that more clinics in the UK are now annually checking "remotely".  Last summer I was told by my clinic that I would need to be seen in clinic because of continuing intermittent AF episodes with a rapid ventricular response rate and some non sustained VT episodes), otherwise I might have been given a follow up appointment for an annual remote check only.  This is worrying, especially for those of us with older devices.  I will ask my clinic and update this thread

Response just received from Guy's & St. Thomas' Heart Devices Clinic

by Gemita - 2024-01-09 07:23:11

Hi Therese,

There is no consensus from the manufacturers. Our recommendations come from the governing bodies.

Our current policy at GSTT is to have yearly checks. These will either be in person or via remote monitoring.  We can only do the checks via remote monitoring if all of the self-regulatory algorithms are turned on, and we don’t need to do any of the manual testing of the leads or make any changes to the device parameters.

Kind regards

Katie

Consensus = General Agreement

by Penguin - 2024-01-09 08:48:37

So there's no general agreement amongst the manufacturers. Assume this means that opinions vary? 

I wonder who provides the information to the governing bodies when they form their decisions?  The case for home monitoring must appear to be a good solution for busy service providers.  

It's to be hoped that patient opinion / feedback is considered and that the patients who are polled are well informed and include people like yourself with older devices and people like Piglet whose PVCs are not picked up despite clear evidence of falls / A&E admissions.  These cases need to be balanced alongside those who derive benefit from fewer clinic visits, remote access to their device and helpfully programmed alerts. 

Perhaps the Pacemaker Club should put a paper together re: patient experiences of remote monitoring?  

Thank you. 

 

There are many variables

by Gemita - 2024-01-09 09:19:06

Penguin, yes opinions vary.  At the end of the day, it is up to each hospital trust to decide what works for them and their patients.  It depends on the patient’s condition and preference in some cases too.  I am monitored 6 monthly at the moment in person. There are so many variables to this and unless we are having symptoms and need to be seen or to have our devices checked, they may just keep us on “remote”! 

From the email response from Katie, remote monitoring annual checks clearly have limitations and can only be done if certain conditions have been met “like the self regulatory algorithms are turned on, no manual testing of the leads is required or no device parameter changes are required”.  It seems to me that annual remote monitoring is only possible for those rare patients who have no changes in their health condition, heart rhythms, medication, devices from one year to the next.  How many of us can honestly say this?

I will look into placing something into our frequently asked questions on remote monitoring experiences

Here in the UK, it's largely money.

by akaDM - 2024-01-09 09:53:32

@piglet22 I believe it's a mistake to think it's all about money in the NHS. Scotland and Wales receive more per head than England, with poorer outcomes. A huge array of problems was caused by changes to staffing contracts under the Blair government (on top of his reorganisations) and the unintended effects still linger. In hospitals, the pay for many staff went up significantly through bureaucratic systemic regrading and hospital managements have since been working at walking that back (often by employing more less experienced and less qualified staff). The overall impact was a lot of money being put into the NHS for no gain.

idk about the situation with your local service. Much can be down to poor local management or management choices. But difficulties in staff recruitment, retention and ongoing training is an issue in most non-metropolitan areas. Affects quality and increases costs (requires more locums) and means that hard-to-recruit-to services may not even have posts established  (because what would be the point). Anything that can be done remotely bypasses local shortages.

As a very gross generalisation, I'd usually assume issues with GPs'/OOH/A&E are down to Blair era changes and cultural shifts in expectations and behaviour (and more money might halp the NHS adjust if it were targeted) and issues with local specialist services are down to local circumstances. And the most common local circumstance is recruitment, which is always worse when there are national shortages of staff.

For decades, across the NHS, workforce planning and training  new staff has been dire: there has been a Treasury driven desire to show that money spent was certain to be required and local Trusts/hospitals being reluctant to guarantee that they will have posts for x whatevers in ten years time. The result has been chronic shortages of all categories of qualified health professionals. It's no better in the US or Australia or else they wouldn't look to import staff from overseas. I'm not sure about the ethics of a system that relies on importing qualified staff from third world countries, but it doesn't feel right.

Remote monitoring

by Lavender - 2024-01-09 18:19:38

I'm in the USA. My bedside monitor does a nightly scan and doesn't report to the dr unless it notes something out of the set parameters. 
 

Every three months, I am seen alternating inperson at my cardiologist's pacemaker clinic or checked by my monitor at home while I sleep-it transmits this report to my cardiologist. I'm unaware of it happening. I never get the reports unless it's an inperson visit. So I am seen every six months in person. 
 

I am not on any meds so I'm probably not needing more frequent checks until my battery goes down more. I'm happy with this routine. 

Lavender and akaDM

by Gemita - 2024-01-10 06:37:32

Thank you both for your contributions.

Lavender I can see you are well cared for with the night monitoring, periodic inperson or regular complete monitor checks.  What a service, but I know you are pacermaker dependent and had an emergency start at the beginning of your journey.  I would feel very confident with your care that nothing important will be missed, particularly as you are frequently followed up in clinic anyway.  I expect you are able to contact your clinic and get feedback whenever you need as well.  I know you have had to get in touch about one of your leads.

I wonder how they decide in the US who needs nightly monitoring?  I see New to Pace has this also, but Tracey_E appears to have less frequent monitoring unless I am mistaken?

akaDM we are growing older and living longer. Many of us have complex conditions.  Social care is poor and many older patients have long hospital stays.  Hospital staff are burnt out trying to do the best they can. 

How much are we are willing to invest in the NHS and meaningful investment would require more taxes? How do we allocate funding between treatment and prevention, between social care, healthcare, emergency or chronic care?  How do we improve the working conditions and psychological support for frontline NHS staff? 

These are questions that our government has to resolve, but we also need to be part of any national conversation.  We cannot continue to pretend that everything would be fine if only NHS staff stopped striking, or efficiencies could be found, or that everything would be fine if only a different government were in power. 

Preference for Face to Face

by SeenBetterDays - 2024-01-10 10:57:45

Thanks for raising this Gemita, sorry I have been slow to respond. I have always been sensitive to the threshold testing which accelerates and slows the heart, maybe because I am pacemaker dependent, I am not sure exactly why. At my last check just over a year ago, I felt unwell for quite some time after the tests were performed. I received a home monitoring box through the post with no explanation of how to use it or what exactly it would record. My understanding is that the monitors also do the threshold testing so I was wary of using the monitor. I appreciate it may not have been the wisest move but I haven't used the monitor since receiving it. The problem I have is that the hospital have now moved to remote monitoring so would only work off a download I provided, there would be no face to face appointment. The slightly alarming thing is that no one has contacted me in the last year to find out why I am not connected to the monitor or ask me where my downloads are. I know that for many the remote monitoring is working well and they find it a more convenient alternative. I have to say I am just not comfortable with this form of support and don't really have faith and confidence in the process. I have decided that I will try and pay for private face to face checks as I feel that something as critical as your heart needs proper care and attention. As you so rightly said Gemita, none of us knows how stable our conditions and I need to be able to discuss my symptoms and take an active role in any settings changes that may be needed. This form of monitoring just makes me feel isolated and unsupported. 

Use of monitoring

by Lavender - 2024-01-10 14:46:47

Seenbetterdays:

I'm extremely sensitive to the threshold checks too. I am 100% dependent. However I can tell you that the monitor checks never bother me. I'm asleep. I have never felt anything at all during the every six months monitor scans. 

Weird that no one noticed you're not using the monitor. Please hook it up. If you need to transmit to the dr in case of a problem, it's the quickest way to let them see what info is in your pacemaker.

That Elevator test? It is awful, isn't it

by Gemita - 2024-01-10 16:00:53

SeenBetterDays, firstly I am so sorry you are not receiving adequate care from your clinic and that your monitor arrived without any real guidance on how to set it up, what it can and cannot record and information like this.  It does seem to be hit and miss depending where we live in the UK.   Some of us are receiving excellent care for example from main London hospitals.  We both attend two different main London hospitals.  Staff are enthusiastic, caring and willing to engage with us.  Appointments last from 30 to 45 mins.  We are never rushed.  

Many of us are sensitive to the device check where they place a magnet on the device to speed up the heart or let it fall to its natural (intrinsic) rate. (The threshold test is a different test to find the amount of energy it takes to make the heart contract). 

I might be wrong, but I do not believe they are able to check our intrinsic heart rate remotely, but you might wish to ask because we all have different monitors.  They like to know what our own heart is capable of doing without the support of the pacemaker.  At my last check up my own heart rate (intrinsic rate) was hovering around 35 bpm.  Many technicians like to see our hearts work harder and not to get lazy by having too high a lower rate limit setting, but if a patient feels better with a higher, lower rate limit setting, then that is what really matters.

Yes it is alarming that no one has contacted you to say that transmissions are not being received.  If you are still having disturbances and need to be seen in person, I feel you should ask for an appointment to check your device settings and historic data.  It is important to do this either privately or under the NHS because something important could be picked up.   

Again I am so sorry you feel isolated and unsupported.  Your NHS clinic should be made aware of this and should try to do better.  I hope you will come to see us more often for support?  You don't have to suffer in silence

UK "regulator" finds monitoring is good!

by LondonAndy - 2024-01-10 17:05:18

It will come as no surprise to any of us here that remote monitoring can lead to more rapid treatment of things that go downhill etc, and indeed the UK's National Institute of Health and Care Excellence (known as NICE) found just that in 2016 - see https://www.nice.org.uk/advice/mib64

Personally, I don't have remote monitoring and am checked annually. It has never bothered me, and when I gently enquire about it at the annual checks the techy guys seem a bit dismissive of the need.

Thanks Lavender and Gemita

by SeenBetterDays - 2024-01-11 09:29:43

Thank you both for taking the time to respond to my post.  You are both incredibly kind and caring and the Club is extremely lucky to have you.  It helps sometimes to just express how you feel in a forum where you are understood and you are able to share your thoughts and concerns.  I will definitely arrange a private face to face appointment in the next few months.  Maybe it's possible to have the check without the acceleration/deceleration, I will need to find out.  I know that they have not been able to detect any intrinsic heart rate during my previous checks so presumably that won't change and the tests may therefore be a fruitless exercise? This is obviously something I need to discuss with a professional to determine if there are any risks attached to not having those specific tests performed.  I will let you know how I get on and will post  if there is any helpful information I can share with the group.  I feel that I should know more than I do about all this by now! Thanks again for your support, it is so very much appreciated.

SeenBetterDays

by Gemita - 2024-01-12 07:39:32

There is no need for you to suffer with the deceleration test to find your intrinsic rate when they carry out device checks.  As long as they know that you suffer during and after such a test, they may be able to modify the test and only challenge you according to tolerance and no further.  They are not allowed to go below 30 bpm apparently.  Just ask them not to challenge you so much or have the pacemaker plummet to such low rates.    

Also ask to lie down while they are testing you, that is what many do here.  This test will never be a fruitless exercise, since even a fruitless exercise will tell them something about your intrinsic heart rate.  I do not believe this specific test is essential to keep us safe since there are other settings, logs, historic data that they can use to see what your own heart is doing over a period, so please don’t worry. 

There is an excellent thread that might help you.  You might even be able to skip this part of the nice to know intrinsic rate test:-

https://www.pacemakerclub.com/message/42300/device-interrogation

Really Useful Thread

by SeenBetterDays - 2024-01-13 10:36:31

Hi Gemita

Thanks for the link to the previous thread on this, it was really helpful.  I can see that there are others who find the testing tricky.  I will definitely raise the possibility of missing the deceleration test and possibly carrying out the acceleration in a more contrlolled and gradual way when I organise my check. Hopefully this could minimise the potential for after effects, I'll keep you posted. Thanks again for the advice and support.

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