NIGHTMARE 24 HOURS IN A&E : So I went... - Atrial Fibrillati...

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NIGHTMARE 24 HOURS IN A&E

wendy6 profile image
102 Replies

So I went into A&E on Monday...was in there 22 hours on a chair! anyway ECG showed normal sinus with odd Ectopics and runs of SVT's.

Im so angry and digusted with the service Im going name and shame - its William Harvey Hospital in Ashford Kent. I had in-depth discussion the nurse doing my final ECG she told me she had worked in large busier London hospitals who worked in a much more efficient manner with less waiting. But here are very busy like it was every day , but problem is not organised properly - she said they have no breaks are constantly stressed and has gone beyond working in "hell"!!

This time because I self-referred, I walked into A&E not via 111, I was triaged to UTC which I now know is the Walk In Centre area with GPs and nurses only. Ive never been to this area before and mistakenly thought I had been fast-tracked past A&E because I had presented at checking with arrythmia, chest pains and dizziness telling them I’ve been suffering with this for 5 days!!!!

So I waited in UTC for 4 hours, had an ECG they took 2 readings. Saw doctor who after looking at ECGs told me was definitely in arrythmia I need to go to A&E because she is a GP and will need bloods etc !!!!!!

I was given a folder with my notes and ECGs which I studied closely. It stated normal sinus, with SVTs. You keep your own folder in this A&E cos they move you about so much.

I waited another 4 hours in A&E, had bloods taken and was sent to Red Zone Major Assessment area (where I went last time in February for 14 hours) which is just a spin-off holding area from A&E, probably so they can keep their A&E waiting times within agreed times! I waited here in crowded waiting room with standing room only so people lying on floors from 10pm to 1.30pm next day . During the night I saw a nice junior doctor who took the time to listen to me, went through all my medical history, checked chest etc. said would request chest Xray as well. Said ECGs showed definite pattern of arrythmia, and I would see Cardiologist in the morning.

I felt optimistic...went back to my hard chair in waiting area. Needless to say, no sleep making heart even worse.

I had a man who came in drunk with bleeding face, lying at my feet for most of the night, I’m not exaggerating 😳

So, I waited - nurse came round with a mobile monitor every few hours taking BPs and vitals to check we were all still alive!

I checked with reception a couple of time to see when Cardiologists would come, they said could be any time from 11am to 11pm!

At 11.30am I got called in to see who I thought would be Cardiologist...but no it the same senior A&E consultant I saw at my last visit. I said Oh I think I saw you last time she said yes probably. She started talking telling me my heart is fine no need to worry, Echo I had done recently is good no heart failure etc, heart is in normal sinus rhythm, she in fact implied that I shouldn't have come into A&E, saying you know this dept is for urgent cases and emergencies!!! I said NO I saw the ECGs taken yesterday it clearly showed SVTs ....So I showed her my home monitor print outs I had taken for past 5 days ...and stressed that I have been in this arrythmia pattern 24/7 for 6 days now. She huffed and started to rummage through my paperwork but couldn't find the ECGs taken yesterday, she turned to her junior and said where are they? he went out came back no ECGs. 😱 So, she must have been looking at old ECGs in my file and on the system 🤬 She said they would take another ECG now then I could go home, told her junior to arrange this. I asked would I be able to see a Cardiologist today she said no. If needed will make a referral.

Told to go and wait, but I overhead junior doctor asking nurse to do urgent ECG she said not possible as short staffed so busy. I refused to go and wait in room again and hung around reception area. It was so busy in there chaotic in fact. After 30 minutes, I grabbed the nurse attention and pleaded I was feeling exhausted and dizzy from heart and lack of sleep. She managed to find a cubicle and monitor and begrudgingly did ECG. I then had to wait for doctor to review it. Again, told to go wait. but no seats available now, so stood for another hour 😭 Then back to reception and pleaded for result. Same Junior doctor came out and told had reviewed and ECG clearly showed some arrythmia so they will request an urgent Holter monitor and cardiologist appt.

I’m still in same weird sequence of normal....ectopic....5 grouped SVTs...ectopic...normal repeat and this is continuous 24/7 with varying level of force according to how anxious I am.

But at least I now know that no heart failure and chest ok. So will try not to worry and just try to keep calm and carry on despite heart telling me otherwise.

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wendy6
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102 Replies
Sue1955 profile image
Sue1955

hi Wendy that sounds horrific I’m actually having same problem and trying to avoid a&r my attacks of AF have always been at night few hrs long, now all of a sudden I’m in the second batch of 5-6 days like you fluctuating between AF, SVE & NSR very wearing. Contacted gp 1 st time a few weeks ago didn’t know what a Kardia was so got told she would write to cardiologist heard nothing and having same trouble again . Sorry not helping with your question hope we both get sorted soon. X

wendy6 profile image
wendy6 in reply to Sue1955

Thank you for reply Sue...I vowed after last time wouldn't go in again unless i was having a heart attack. My GP told me she had done a referral for a Holter Monitor in August when my AF started up again after 7 years. So Ive been waiting 7 months. when I checked with Cardiology diagnostics they told me no referral had been received for Holter, only for Cardiology but cant be seen by cardiologist until holter done and holter waiting list is 8 months so will have to wait a further 8 months!!! Its an aweful mess. Causing us so much anxiety. I hope you get your appt quickly too.

Sue1955 profile image
Sue1955 in reply to wendy6

thanks for your reply an update, I found heart foundation run a help line where you can speak to a cardiac nurse, she was lovely advised me to email my EP secretary about another appointment as he signed me off in dec 22 typical so I’ve emailed her and to see gp who are at capacity for today 😳 so got to ring in morning or 111 which no way I’m not risking a&e 😂. So resting again I tell u my bum will be square shortly 😂. I hope you get your holter sorted sooner than u think 8 mths is a long time to wait. Xx

wendy6 profile image
wendy6 in reply to Sue1955

Thank you reply Sue,

Unfortunately Im not under care of anyone yet so dont have a Cardiac nurse, or EP. Relying entirely on GP who was supposed to have done the referral in August and clearly didn't!

Sue1955 profile image
Sue1955 in reply to wendy6

sorry to hear that that’s awful you would think gp could admit their error and put an urgent request in. Good luck with it all xx

wendy6 profile image
wendy6 in reply to Sue1955

Yes thank you I'm hoping she will. Still not heard from her since last Wed when I emailed her requesting this🤷‍♀️

Dippy22 profile image
Dippy22 in reply to wendy6

Sorry, but I’d issue a formal complaint against them for that. Oh boy, do they get their act together when you do that!

They’re risking YOUR health and should be performing better than that. They make enough money and “profit”, so they should darned well provide the service they’re paid for.

C66t profile image
C66t in reply to wendy6

That sounds dreadful and very stressful not great for heart. Is there any pharmacy near you that have holter monitor service?

DawnTX profile image
DawnTX in reply to wendy6

Oh Wendy, I just saw this. No wonder you are having such an awful time. You really need an EP at least here in the states a GP is not is qualified plus he doesn’t know what’s going on with you you need tests you need everything to clarify. When I went to my EP it was for my GP, because his duty is to have a net work around him for patients. I had blacked out and smashed my face on my concrete floor twice in one night I had fallen. Anyway, after my EKG during my first visit, he put me on an anticoagulant right away. I will be thankful for that always after what I know now about a fib and stroke. he also put me on medication. I forget what it was now I think one was a metropolol tartrate. Bottom line is until they could determine the entire problem. He was not taking chances. It was very difficult because if you know about a fib and EKG does not show it unless you were having an event. Finally, he decided to put in a loop recorder and in two weeks they had the answers and scheduled me for an ablation the following week. I had a cryo-it only lasted six months but I felt good during the six months then I had an RF that held me feeling good For another year and a half I think it was. Time flies when you’re having fun, I’m losing track. A year and a half ago I went into a severe afib. I went to a doctor in Houston had a procedure last April they did nothing for me and I began a serious downward spiral. Long story short, I found a new doctor they tried two cardioversions the second one did nothing. My doctor does not like to repeat failures. That’s why I went to a pacemaker. The hospitals push the doctors to continue doing procedures not for our benefit but for they are bank account as far as I’m concerned. They should come with a guarantee like a cardioversion that doesn’t work or I had one that lasted 3 1/2 weeks. Plus our bodies get tired. My heart is scarred from three procedures, and my new EP refused to do another, except when he did the AV node. I don’t think people realize the odds of them getting the right spot with an ablation is usually very hard. So what I needed even a millimeter would have been off enough for failure. you need to ask questions if you’re not suffering from your a fib just consider yourself lucky. If it is a monster.

wendy6 profile image
wendy6 in reply to DawnTX

Hi Dawn,

Thank you so much for your reply. Always interesting to hear different experience from other countries. I know you pay so much for healthcare in the States but at least you get prompt attention and treatment. Its the opposite here now in NHS. Im 71 so have paid enough into NHS over the years!

After 9 years of suffering I had successful ablation for AF in 2015 but I started to get some short but frequent episodes of AF in August 2022, went into A&E . But because I had never stopped taking anticoagulant Apixiban also on Beta Blocker Bisoprolol for ectopics , this is why they are not so worried when I go into A&E, they said I'm on the right meds I need to wait until Iv'e seen a Cardiologist who may give me other medication for rhythm control, they cant.

You are right about ablation being hit and miss, when they did my ablation I wasn't in AF and they said they couldn't be accurate about which nodes they zapped. I think if I am offered option between ablation and pacemaker now I would go for pacemaker.

DawnTX profile image
DawnTX in reply to wendy6

Wendy, depending on your heart rate is whether I would agree with them or not about waiting. If you have a fast heart rate like I did with tachycardia, it continues to damage your heart and you’ll end up in heart failure like I did. Now mine was 150 or thereabouts without a break from April until the end of October. By the time I found my new doctor I was quite the mess I had my first cardioversion which was great for 3 1/2 weeks. Then back this time to the 120s still much too high. They tried another Christmas week , but it completely failed after giving me three shocks. That is when we talked about a pacemaker which I was not happy about at the time. Meds and everything else are only temporary fixes. I hope you realize that. Some people are blessed, but most of us have our bodies get used to the pills just like anything else when you overdo . Eventually you run out of pills to try. Also, as you know, most of them have horrible side effects almost as bad as a fib. The ablations do not stop working. Mine are all intact, but we end up with other weak spots where a fib can pop its ugly face out. I compare it to Christmas tree lights where you replace the bulb and everything‘s fine again but then another bulb goes elsewhere on the same string of lights. it helps me to picture it like that many people think what the doctor did failed. Sometimes he may not have gotten the right spot. That’s another possibility just think about how tiny it is in there trying to find them. I commend our EPs for what they do. Unfortunately, if it is somewhat of a downward spiral, it’s not going to go away although again, some people have it differently. My new EP told me straight out my heart, and I had enough and I was in heart failure. That is because of the high heart rate all that time. If there’s a possibility of a pacemaker, I’m glad you are open to it more than I was. It is the best thing I could have done I would’ve done it much earlier, if given the option if I knew the way I am right now would be the result. The people on here that answered me about pacemakers just like they did with cardioversions gave me the courage to go forward and I’m so glad I did.

if you’re just getting a fib a little bit here and there I won’t say it’s OK because nothing about a fib is ok. Please take care of yourself and speak up if you need to.

PS my health care is not expensive really. I am retired. I paid into the system now it’s under $200 a month except for co-pays on certain things. I moved from Florida to Texas. In Florida it was even cheaper. Co-pays were $50. Here they are 325 because it’s a different type of plan. I had no choice. I can see my doctor today and he could do an ablation or test at Cetera early next week if he needed to possibly even sooner if it were an emergency. I can change doctors when I want and I could call today and see him tomorrow or at least the practical nurse for starters. What upsets me for all of you is the wait time. As soon as they diagnosed the a fib I had tests and a week later had my first ablation. It is very rare to be told know when you need something done. Because a fib cannot be seen unless it is active at the time, they had a hard time catching it. My EP decided to fit a loop recorder and two weeks later they had the answer. It had been eight months trying to figure things out. I was not that bad at that point, but my initial event had me blacked out twice within the same timeframe and very much injured from my falls that night. If being on those meds was great, you wouldn’t be having afib events. I am very glad you’re on the anticoagulant. I was on Multaq from my other doctor. When I changed doctors I found out that is only for when you are NSR otherwise it is useless. I hope you have trust and faith in your doctor and they do the right thing for you. If not, if you can find someone else please do it. They have a new campaign in the states about a Fed. Well, it’s about a year old now. I haven’t seen it in Texas. It was very big in Florida where there is a very large older population. The campaign is called no time to wait by the American heart association. I wish I had seen it before I fell that night. I don’t know about around where you are but I really feel that there is not enough info given about a fib. In the states there are over 6 million people with it and they expect the number to double best of luck. Please keep in touch and let us know how you are doing.

Sacha27 profile image
Sacha27 in reply to wendy6

That’s awful treatment Wendy, every Hospital is the same even in my area.

It might be worth relating your experience to your local MP. Although he is probably aware of the situation he would have to act on it. Some of my friends have done this.

From an AF sufferer I sympathise it’s so frustrating.

Avatel profile image
Avatel in reply to wendy6

I had a holter fitted privately at Express diagnostics £150 and only waited a week or two. Can have a report for an extra £50, so why wait

wendy6 profile image
wendy6 in reply to Avatel

Thank you Ive actually just bought a home ECG monitor that you can wear and will record 24 hours and give you an analysis report afterwards. Its arriving today.

Avatel profile image
Avatel in reply to wendy6

Please tell me more. Mine was fitted by thier medical team and tbe results read by experts, how does the one delivered to your home work.Do you know for instance how to fit it correctly and set up the monitor, and what is the cost?

wendy6 profile image
wendy6 in reply to Avatel

It's Wellue ER1 AI model. Cost me £180.5 days delivery.

It has good instructions easy to use.

Can use either with chest strap, or 2 sticky ecg contacts or by hand using thumbs.

Check out their website for all info.

getwellue.com/products/hear...

I've been using mine since yesterday.

It gives you a summary of all your heart activity with number of different arrhythmia beats. Listing them all.

You can request online analysis it takes few minutes and comes back with so much detailed info. reports and ecgs you can save as pdfs. Forward to doctor etc.

I thought I have been suffering with AF as that's what I used to have but there is no AF...its all Supraventricular tachycardia and PACs with a few Ventricular arrhythmia.

I'm still waiting after 7 months to see Cardiologist or have holter monitor so this for me has really helped.

I'm now going to see Cardiologist EP next week pay privately as can't wait for NHS any longer.

DawnTX profile image
DawnTX in reply to Sue1955

I just got a pace and ablate three weeks ago. My numbers were a bit crazy when I took my heart rate. One of the things I was told is to get rid of the device because that in itself will make problems for me because of the stress. Our heart rate changes constantly just like I did before a fib based on what you are doing or how you are feeling emotionally/mentally. I was told even worrying about paying bills can be enough to throw you off and then when you see your numbers are crazy you get more upset and continue a downward spiral. If I am not feeling now, I would probably check it but then again, no need because they monitor me now 24 seven at the hospital. I also have a 24 hour hotline I can call. As I said we are all different as well as we are in different countries. When I was diagnosed with type two diabetes, my other doctor told me not to check my blood sugar unless I was feeling ill. He pretty much gave me the same reasons as did my cardiac nurse. Numbers fluctuate almost minute by minute sometimes. I think we rely too much on devices at times I know I got hooked on checking it. Please take care of yourself and feel better.

Sue1955 profile image
Sue1955 in reply to DawnTX

thank you dawn I find the kardia reassuring so feel I would worry a whole lot more with out it, the fact I can see my heart is in af but not racing as bad as it used too, reassures me. As u say we are all different what reassures one person can make another feel even worse. Good luck x

Hia Wendy. Sounds like a horrible time in AnE. Quite like a time recently at Darlington hopsital. They really are super busy, over stretched. The nurse who took my bloods had been on since 6am and hadnt had a break and it was 2pm in the afternoon!! No food! Not only are they underpaid, they dont even get time to eat!! As you can imagine, that nurse was very Hangry and for me was the worst experience of getting bloods taken from me ever. Caused massive bruising. She was fishing around in the vein. Some other nurse came in half way through.. Was awful. Then back to the waiting room...full of really sick people!!

Anyways managed to get sorted. But recently i have been getting alot of ectopics myself. Not the SVTs as your having but skipped and extra beats. Most days and all day long at times. Feels like its every breath and almost like my breathing is activating them..

So i have looked into how to try and control them and honestly i think the best way to calm them is through meditation. I put on a youtube vidoe of OMMM or OHM meditation. Big deep breaths, in and out. Laid down. Slows the hert rate, aniexity goes and seems to calm the ectopics... Still there but not as bad.

Maybe give this a try. X

wendy6 profile image
wendy6 in reply to

Thank you for your reply and support. Is good to know that my experience and hospital not alone. I do actually do medititive breathing and listen to music, it helps calm me but doesn't do much for arrythmia. Thankfully my heart rate stays reasonably normal or even slow even when rythym is irregular. Even when I had AF it wasn't fast but very aggresive big palpitations, very uncomfortable.

MaryCa profile image
MaryCa in reply to wendy6

I have added magnesium taurate to my diet and that definitely helps. Someone on an AFib fb page mentioned co enzyme q10 last week and I was in my pharmacy and saw it. I've had an ablation, no AFib, but was getting quite a few PACs. None! And I mean zero pacs since I started it

MaryCa profile image
MaryCa in reply to

Try cutting out anything with added sugar. That definitely drives my PACs.

wendy6 profile image
wendy6 in reply to MaryCa

Ok thank you will try to do this

DawnTX profile image
DawnTX in reply to

Sadly, it sounds like the same story every hospital as far as overworked. Most nurses just like law enforcement work 12 hour shifts now. To not get a break is disgusting. I don’t think I’ve ever seen in a place where they don’t manage to give themselves a few minutes at least just for liability alone the hospital needs to do better. They also waived certain things for nurses now because they just can’t get enough and we’re taking them out of school with less than what was required previously. On the job training I’m not that thrilled especially when it comes to things like blood draw. Nothing like getting a bad one like you did been there done that painful and bruised, especially being on an anticoagulant. At least we can all see. It is not just us running into this.

mjames1 profile image
mjames1

What a horror story! You should forward post to hospital administration and/or to a good journalist who may want to turn it into a story.

The good news -- and you deserved some good news from this ordeal -- is it appears you are in normal rhythm with significant runs of ectopics and no heart failure, etc.

Hopefully they will calm down with time and/or treatment, when you are able to get in touch with an ep. Meanwhile, Gupta's breathing exercises, meditation and other relaxation exercises are worth a go. I also found that my ectopics sometimes responded to dietary changes, such as smaller meals and not eating too close to bedtime, but then again I had issues with GERD/reflux. Try an stay positive.

Jim

wendy6 profile image
wendy6 in reply to mjames1

Thank you Jim,

I am going to make a complaint to hospital via PALs.

Yes I follow Sanjay Gupta on UTube he is brilliant. He has done a couple of really interesting sessions on SVT's which have made me feel better if thats what Ive got.

mjames1 profile image
mjames1 in reply to wendy6

And until you hear from an ep, I would periodically monitor it with your Kardia, to make sure it doesn't morph into afib, with sometimes happens with such aggressive ectopic runs.

Jim

Buffafly profile image
Buffafly in reply to mjames1

Daily Mail

MisterMagoo profile image
MisterMagoo in reply to Buffafly

I think they maybe part of the problem

jeanjeannie50 profile image
jeanjeannie50

I'm so sorry to hear all you went through Wendy.

These days I tell myself that I'd rather die at home than go to A&E. Trouble is some things hit so suddenly, like severe chest pain or gasping for breath and you really need immediate help.

I blame the chaos at A&E on the shutting of all the minor injuries units we used to have in smaller local hospitals. Now all those people are at A&E too. My local hospital used to have an x-ray unit for finding out if bones were broken or the fault was a sprain.

I really hope you soon find a solution to your unusual heart rhythm

Jean

DawnTX profile image
DawnTX in reply to jeanjeannie50

Jean what do they do for you when you do go to emergency? Both my EP and Cardiologist are on staff at my hospital although not physically in it, obviously all the time. When I lived in Florida, my EP and the other two he worked with as well as my Cardiologist and his partners would rotate schedules so one of them would be on staff at all times. That made me feel very safe. To go to a Hospital that has no knowledge of my health issues would be scary. In fact, I am going to ask my GP. What happens if I go to the ER. I am monitored 24 seven so he would be on alert if something went wrong anyway but it’s good to know your options ahead of time.

I never would have gone for my a fib and never did. I’m just curious what they do if we showed up there with a fib.

jeanjeannie50 profile image
jeanjeannie50 in reply to DawnTX

I'm in the UK, so treatment here could be different. At the start of my AF attacks my heart rate would go up really high. I'd go to A&E and usually ended up being admitted to a ward. Sometimes I'd just sit an attack out at home, but after about 6 hours would end up at A&E and be told off for not going earlier.

After 3 ablations and changing my diet my heart rate is much lower and I can cope well.

A&E services here have changed drastically over the last few years as they can't cope with the amount of people attending. This being, as I said above, because they have closed the minor injury units at smaller hospitals, now everyone has to go to the main hospital for the area. During the week you can see a heart consultant, but at weekends it's less likely and would probably be a general consultant or trainee cardiologist. We are desperately short of staff at most of our hospitals.

Obviously larger hospitals have more cardiologists. For serious cases like heart attacks a consultant and his theatre staff are on call and can be called in at any time and the person operated on speedily.

I would say if AF has been going on for 6 hours and the rate is over 130bpm, then you should be checked at A&E. That's just my personal opinion. It also depends if it's making you feel ill. I dialled our emergency no. once when I came over sweaty and struggled to keep conscious.

The paramedics who came were bemused by the fact that my wrist pulse said 60bpm, but my heart when they did an ECG was actually going about 3 times that speed and I was feeling better by this stage. I was taken to A&E and admitted to a ward. Although the paramedics had never seen a wrist pulse different to the speed the heart was actually doing, the consultant at the hospital had. I always had good service when I went to A&E with AF.

The thing is some people never feel ill with AF and they don't understand how dreadful it can be for others. In our minds AF is only as bad as we have experienced. I have a friend who's heart rate can go so high that she drifts in and out of consciousness.

My sister lives in Texas and she tells me that things are much the same there as they are here. I believe in the US it depends on your insurance cover as to what help you can have. She is one of the lucky ones.

Hope this answers your question.

wendy6 profile image
wendy6 in reply to jeanjeannie50

Thank Jean ,Yes I vowed last time I went in after 4 hours Atrial Flutter Tachycardia heart rate 160 bpm that I wouldn't go in again unless was having HA. But when I had AF years ago my Cardiologist told me never to wait more than 5 hours with AF go in.

Which is why it was so upsetting to be told by consultant that A&E is for critical serious cases

This time I had been in this SVT arrhythmia for 5 days 🤷‍♀️

I actually live next to lovely old main Victoria Hospital...25% now which only operates as a walk in minor injury drop in with a few outpatients debts. Half of it was demolished for a housing estate and other part made into flats.

jeanjeannie50 profile image
jeanjeannie50 in reply to wendy6

We're never really sure what to do, when AF kicks off at a high rate, are we. I wish that there was one standard rule we could all go by.

Teresa156 profile image
Teresa156

Hi Wendy,

I’m sorry to hear what you’ve been through, it sounds horrific. I’m in SE Essex and our A&E is roughly the same, or it was about 18 months ago when I was last there. I very much doubt it’s improved. They don’t think anyone needs any sleep.

If you can afford it, the best thing to do, might be to try and see a cardiologist privately? You’d get seen a lot quicker that way, usually within 2 weeks? A consultation is usually around £200. At least your GP won’t need to get involved either.

I hope PALS help, though from experience they do very little to help, fingers crossed that yours are good.

I’d try and avoid A&E for a while now if I was you, though I think you may already have that in mind 😊

Teresa

Hi Wendy, I can really sympathise with you .I have been under cardiology at the William Harvey for six years.It has been a complete nightmare.Three years ago after numerous interventions by Pals I took the decision to go privately. After one consultation with Dr Rossengarten EP based at Margate I was within three months offered HIS bundle pacing with AN node ablation via NHS. Job done with extremely good outcome and with regular monitoring. . I have been waiting for eighteen months for my cardiology appointment it keeps being delayed .Hope you get the help you need soon.

wendy6 profile image
wendy6 in reply to

Thank you Patham,That's interesting...not just me then.

I did research a found Dr Rossengarten, had actually made enquiry last week. Still thinking about making first consultation appt?

So can I just ask you to expand...you had one initial consultation and he referred you back to NHS and he recommended then did the Ablation 3 months later?

Dippy22 profile image
Dippy22 in reply to wendy6

I was extremely unhappy with an NHS cardiology nurse diagnosing PAF and then prescribing Digoxin and Flecainide OVER THE PHONE, saying “you can call us anytime in the next 12 months if you have any concerns”. 😲

So I consulted an NHS cardiologist (from the same hospital/dept!) privately for £220. Best money I’ve ever spent. I was booked in to see him within a week, had a full 30 minute in-depth discussion, and he referred me straight in for a heart artery CT scan, saying that should have been done before prescribing Flec “as it may not be the right medication for you” and then he looked my body up and down promptly reduced the digoxin dose from three tablets to two! The other idiots had prescribed over the phone!!

Honestly, if you have the money then book in ASAP.

DawnTX profile image
DawnTX in reply to Dippy22

I am so glad you found a smart doctor. Yes, that’s a big dose. My doctor doubled mine after two weeks, because it stopped working when it failed again that is when we decided on the pacemaker. 😊 I had been through many many drugs before that.

DawnTX profile image
DawnTX in reply to

I’m so happy to see you got what I just got three weeks ago. Do you have the Medtronic Azure? This was my first really good week with it and it has been really good. I feel so happy. Previously I have been severely depressed, which is some thing I fight with anyway. A friend of mine. The other day told me how strong my voice is and how good I sound. Thank you for writing what you did seeing another success story. You are one of 4 that I know with this type

Hi,yes I had just the one initial consultation.He then sent his recommendations to my nhs cardiologist at the WH who took it from there,3 months later ,full steam ahead The problem may be that you don't have a designated cardiologist at the moment.

If you can it would be a step in the right direction .Dr Rossengarten is brilliant and down to earth.

Just make it clear you want to have any investigations through nhs. ( if that's what you want).

Have you tried posting on "Care Opinion" ,I received a response from the Chief Nurse East Kent hospitals ,who helped me immensely through the many problems I encountered in the early days of my heart journey at the William Harvey.

Nannysue1 profile image
Nannysue1 in reply to

I've been under James Rosengarten for many years and he has been brilliant. I see him privately for consultations and any procedures are done on the NHS. He also runs a clinic at St Barts in London.I too have had the pace and ablate under his care but at QEQM hospital. I've found the cardiology department there to be excellent.

Horrible to hear bad experiences , especially when it involves the heart, just makes the situation 100x worse.

Hope you get it all sorted.

in reply to Nannysue1

Yes, James Rosengarten carried out my HIS bundle pace and ablate at the QEQM and I find the whole Heart Centre team wonderful. I'm afraid I can't say the same about

in reply to

W.W.H

Nannysue1 profile image
Nannysue1 in reply to

Sorry being dim, what's WWH

wendy6 profile image
wendy6 in reply to Nannysue1

Think he meant WHH = William Harvey Hospital

Nannysue1 profile image
Nannysue1 in reply to wendy6

Doh, of course 🤣

Buffafly profile image
Buffafly

That is terrible 😳 But since I have discovered that in our area at least 111 make an A&E appointment for you if they think you ought to go then that is what I would do (call 111) unless I needed an ambulance.

About 10 days ago I tripped over the open dishwasher door one evening and knocked my ankle but didn’t think much of it although it bled quite a lot. Put a dressing on and left it to next evening to check when I realised it was much worse than I thought and had opened up into a big cut which is reluctant to heal. My family is 😱 with me but I would have been very reluctant to go to A&E even if I’d realised how bad it was 🤕 Our hospital is excellent but even so…

Eagle69 profile image
Eagle69

So sorry to hear your A&E horror story wendy6 but, unfortunately, what you’ve been through is not unusual.

From my recent experience it seems to be the norm. I had 20 hours in various A&E rooms when I had my HA on Xmas day (yes a bad day to have one but still…!) before being taken to a cardiac ward.

Then about the same last month when I was admitted with chest pain. This time it ended up ‘just’ seeing a cardiologist.

What I didn’t experience was bad attitudes from anyone. Everyone I dealt with was top class but working in awful conditions, in A&E anyway. The system is badly broken.

My hospital is the Princess Royal University in Bromley/Farnborough Kent.

It really puts me off ever thinking about going again!

Glad your visit didn’t uncover anything more sinister and hope you’re okay.

wilsond profile image
wilsond

I think an email to your MP,PALS,local TV,hospital Trustees...everyone you can think of.It seems obvious to me that systems and proceedures there are inadequate,inefficient and downright dangerous!

My god......

Tarikor profile image
Tarikor

A&E is horrific in English speaking countries.. sorry to say this. As an old time Afibber, and having worked in manyy countries around the world, I found that the A&E in London is beyond terrible. Many shining Doctors and Nurses but overall the organisation is inept, bloated & managed extremely poorly. I have experienced similar instances myself and the lack of sleep is a nightmare for us AFibbers. I am so sorry you had to go through this. The best thing you can do is to take matters into your hands and look into alternative medicine. There are things out there that DO help and they DID help me (including acupuncture which actually CARDIOVERTED me from a bad AF I had that St Mary's Hospital were completely unable to cardiovert after over 12 hours!! Yet two needles into my sternum and BAM! The AF went away. Pisses me off to no end that they don't investigate alternative treatments....

intheweeds profile image
intheweeds in reply to Tarikor

I am interested in alternative solutions and was wondering if you have any more info about the acupuncture? Where I would I find a good practitioner that knows about AF?

Thanks 🙂

Dippy22 profile image
Dippy22 in reply to intheweeds

You can search here for local practitioners and then ask.

acupuncture.org.uk/find-an-...

I’m going down the possibility of an electrolyte imbalance issue route - blood test results tomorrow then have a chat with my functional medicine doc. And berberine seems to be working very nicely. Not currently taking any heart rhythm meds and whist it’s early days yet, my heart is doing great!!

intheweeds profile image
intheweeds in reply to Dippy22

That's great to know and good to know your heart is happy.Many thanks

GrannyE profile image
GrannyE

what a dreadful experience After being in hospital and treated like that I would imagine your bp would be through the roof and your heart all over the place. I am so sorry. Good luck.

wendy6 profile image
wendy6 in reply to GrannyE

Thank you .... yes Im now suffering from anger and anxiety which really isnt helping heart.

waveylines profile image
waveylines

So so sorry to hear this Wendy. You must be exhausted poor you. Sounds like that department had collapsed. This is what nurses & doctors are saying that they don't think hospitals are safe because they are understaffed and over full. Re GP. I have had a GP fail to refer me when they said they would twice. It makes me so angry because it's practically the only route to get referred to a specialist. Tjey apologised but I lost 6 months if waiting.....one had written it but firgot to send it, other been too busy & forgot. Too much work & overwhelmed. Secind time GP burst into tears and I ended up comforting her on the phone for sometime.

I would ring GP (yeah I know massive queue on phone lol) & say what has happened & the hospital weren't aware if your referral to cardiology could they check....receptionist can check this for you. And get them to refer you through urgently. If done still see if they can't up your priority. (Referrals are screened prioritised on receival apparrantly)

There is no doubt our NHS is in crisis. And frankly is a consequence of long term starvation of adequate funding, coupled with poor salaries & appalling work conditions.

Sending you hugs xxx

Dippy22 profile image
Dippy22 in reply to waveylines

And because they don’t copy you in on the referral, it can months before you discover it wasn’t actually done!!

I had a locum tell me he’d refer me to haematology for an issue, then when I spoke to my usual GP a few weeks later and asked about it, he’d told me he’d vetoed the referral, saying HE didn’t think it was necessary!! And there was I waiting for a letter from haematology that was never going to arrive! 🫤

waveylines profile image
waveylines in reply to Dippy22

Exactly!! Sorry to hear it's happened to you too Dippy. Lol.... Awful it was over ridden without even telling or consulting you!!

wendy6 profile image
wendy6 in reply to waveylines

I think this is what has happened in my case. After phoning the relevant departments in hopsital I now understand how the referral system works. I queried with my GP whether I had been referred specifically for a Holter Monitor last August after 2 A&E visits. I ended up emailing GP as couldnt get through after over 100 attempts on phone. She actually phoned me and confirmed she had sent 2 referrals 2nd one urgent. So in my ignorance I assumed that was ok. However from speaking to Cardiology Diagnostics again yesterday I insisted they explain to me in detail how it works! She said GP has to specifically ask for a Holter Monitor and if urgent they will triage, could downgrade it to non urgent ( 8 month wait) but they don't let GP or patient know. Its up to GP to chase it up!!!!! However in my case they are saying that they NEVER received any referral for Holter monitor. So I believe that GP did referrals to Cardiology (for consultant) which is a different referral handled by different team. I checked with them couple of times over the past 8 months and Im on their list but told last week that cannot be seen until Holter done.

Im now waiting until end of next week to see if urgent referral to Rapid Access Chest Pain clinic done by A&E doctor Tuesday is approved. But they told me it could be refused if so GP will be told but not me. And if so Im still on 8 month waiting list for non urgent Holter Monitor referral made by A&E doctor in February.

waveylines profile image
waveylines in reply to wendy6

I would hassle your GP. My referral was messed up & I lost 6 months because the admin at the hospital wrote the letter for consultant to refer me but forgot to send it! I complained and hey presto got moved to near the top of the list. I think you need to be polite but stir them up. It's not on that your GP did the wrong paperwork so you loose put. Not on! Shed put urgent on wrong form. Needs to be corrected. I would not accept this.

wendy6 profile image
wendy6 in reply to waveylines

Thank you for reply ...yes Im exhausted by it all...so angry, frustrated and in a spiral of anxiety.

To make matters worse - the IT system at my GP surgery crashed last Friday and is still down. Which means that they cant do appts, cant access patient records, or referrals, no prescriptions cant see or talk to patients. I checked again this morning and its still down after 7 days!

When I found out last Wednesday that Cardiology Diagnostics had not received any referral from GP despite her telling me she had made 2 in August 2022. I tried to contact her but can never get through to surgery on phone. So I emailed her with all the details. I even ended it with how upset I was and that I was crying ( I was) I asked her to look into it, do a very urgent referral for Holter Monitor explaining why its needed (backdated from August) I also asked her to phone me to confirm actions taken to help ease my anxiety. Also told her I was in constant arrhythmia with chest pains, breathlessness etc.

Heard nothing. Phoned on Friday to be told that their system was down no IT, no emails etc.

So on Monday 20th checked again - same situation. So printed off the email sent to her on 15th attached print outs of ECGS taken at home showing my arrhythmia . Added a covering note saying how ill and anxious I was can she please phone me. Nothing! Thats when I decided to take myself into A&E after 6 days of non stop arrythmia.

This morning I phoned surgery...systems still down. They cant do anything she said.

I explained about the letter I had dropped in on Monday, and that Id been in A&E with hearts etc. asked if my GP could phone me tomorrow when she is in. She said can't phone without systems, I said cant she use the phone? she replied can't access records...I said I don't care, I just need to speak to her about my letter...this is causing me great anxiety making my heart worse. She said she would pass the request on.

So that's where I am with all of this.

waveylines profile image
waveylines in reply to wendy6

OMG that's just awful. I'm so so so sorry. Horrendous. I think all you can do mow is complain to PALS at the hospital. How can an IT system be down so long???? It's not on. Sending you hugs ❤️

pusillanimous profile image
pusillanimous in reply to waveylines

I no longer live in the UK, but all my family do, and I would be interested to know how many new hospitals have been built in the last 50 years. I come from Ascot, Berkshire, and when I was a little girl in the fifties, there was a cottage hospital in the village that dealt with minor problems. mostly wounds, and there was Heatherwood Hospital that handled more serious cases. The main hospital that served the area is in Windsor, but there were also several maternity homes where expectant mothers were admitted. From what I can gather from all my relatives who live in the area, the cottage hospital is gone, Heatherwood Hospital is closed, the maternity homes no longer appear to exist, but the main hospital is still in Windsor and dealing with an ever increasing population. Have I got my facts correct, and is this what is happening throughout the UK?

wendy6 profile image
wendy6 in reply to pusillanimous

I dont know how many new hospital built in the past 50 years, but I can tell that I live literally next door to a lovely old major Victoria Hospital. It used to run as a major hospital for our area. It has gradually closed the wards and other departments over the years running only a small Minor Injuries Walk in Centre, blood testing, Physio and a few outpatient departments. 2 years ago they demolished the section with all the wards and built a blcok of apartments. They changed the old middle part into apartments leaving just the new section to run as Minor Injuries, outpatients etc. Its so sad.

jeanjeannie50 profile image
jeanjeannie50 in reply to pusillanimous

Yes, pusillanimous you have all your facts correct on the situation in the UK regarding hospitals. Lots of small ones were told to close their minor injuries units. Now A&E departments at the larger hospitals cant cope with all the extra people attending. Where I live the larger hospitals are extending their premises, rather than new ones being built.

Jean

pusillanimous profile image
pusillanimous in reply to jeanjeannie50

Thank you jean, it seems to be a major problem.

waveylines profile image
waveylines in reply to pusillanimous

It is I'm afraid. Essentially though the gov didn't future proof for an aging population. We were merrily paying our taxes but no government thought ahead. Now we are paying less tax & no NIC as people go onto pensions and the triangle inverts so less people working more retired, coupled with current govs approach of 15yrs of effectively reducing funding & privatising health (& education) the nhs is in a dismal state not helped by an inadequately funded social services. Its a disaster. I live bear an excellant hospital who have given ne very good treatment but the pressure on them is immense, further added by the fact that GPs refer on for most things these days. It can't carry on much longer like this I'm afraid.

pusillanimous profile image
pusillanimous in reply to waveylines

Oh Wavey that's terrible to hear. Having used private health care here in South Africa, which is the norm if you have a good job and retirement funds, I find such stories horrifying.. Although some of our taxes go to government hospitals, they cannot cope, so we pay into what are called Medical Aid Schemes.(it's not Insurance it is non profit making) When you are working, your employer usually pays half the subscription, when you retire, you usually have made provision for payment of the subs. This way all the doctors and specialists, save for the ones employed by the government hospitals are private, so if they don't see patients they don't eat, there is no government subsidy for them. There are probably more private hospitals than public, every discipline is private from GPs to pathologist, radiologists, and so forth, so they all need to treat patients with respect, because people will use their feet and move to another practitioner if they don't get the treatment they expect. It is elitist, because people who can't afford the subs. rely on government hospitals, but I suppose, selfishly, because I am able to afford the subs, I like the system.

waveylines profile image
waveylines in reply to pusillanimous

Completely understand. There are private hospitals here too & people who are rich go to them or people with health insurance.....thing is health insurance excludes existing conditions or conditions that could be related to them. Often have cut off points too. And once claimed insurance goes up. My mum experienced that when she had a knee replacement, her age & the op meant she couldn't afford insurance any longer. She wasn't poor. It's a shame we had an excellant system but unfortunately mismanagement & a gov who has been hell bent on privatising, its struggling. 7million waiting for treatment, like ops.

pusillanimous profile image
pusillanimous in reply to waveylines

One thing the govt. here has done, has made it illegal for any Medical Aid Society to refuse anyone membership, regardless of age or pre-existing conditions, you may have to subscribe for a few months before you can claim, but you cannot be refused membership. That is the big difference between Medical Aid Societies and Insurance, there is no discrimination allowed

waveylines profile image
waveylines in reply to pusillanimous

That sounds much better. But does existing condition affect the premium that they can charge you?

pusillanimous profile image
pusillanimous in reply to waveylines

No, just the waiting time before you can claim, unlike insurance where it would- that's why they are called non-profit making Medical Aid Societies and not Insurance.

Dolly1234567 profile image
Dolly1234567

so I was referred into A&E by my GP (several months post ablation and suffering with sinus tachycardia) it was actually the day of the doctors strike. We were covered by stand in consultants. Unusually I was seen with bloods and an ECG within 2 hours. Couldn’t believe it ! I was prescribed a beta blocker until I have my review with my cardiologist in 2 weeks time. Sorry to hear your experience I have done A&E so many times and even had to just walk out … our system is under massive strain unfortunately x

Singwell profile image
Singwell

This is awful! I've heard about these units that aren't A and E - urgent triage something? What's the UTI stand for? You must complain YES and also send to the health trust and your MP. We cannot accept this. I'm so sorry you had this stressful experience. How are you in yourself now?

wendy6 profile image
wendy6 in reply to Singwell

Thankyou for reply. Its UTC (not UTI) Urgent Treatment Centre. But its not, its a GP walk in in centre.

bassets profile image
bassets

Hope you are feeling better after all this. I think you should Geta private consultation too - money well spent when I did. x

Rainfern profile image
Rainfern

Our government is responsible for underfunding and winding down the NHS. Privatisation by the back door - big profits to made at our expense! I payed National Insurance all my working life for a health service that was once pride of the world!

Rainfern profile image
Rainfern

Dear Wendy, my thoughts are with you and wishing you a quick recovery from such a terrible ordeal. I made an appointment with my GP specifically because he'd failed to refer me direct to a cardiologist and he got moving after that. But meanwhile I have booked a private consultation which I hate doing because I paid national insurance all my working life and I hate how the NHS is being privatised through the back door.

Good luck with your complaint through Pals. It needs to happen, and thanks for speaking out!

jamesvdv profile image
jamesvdv

Wendy. You should write to Damian Green (MP for Ashford) explaining this situation and why you are not going to be voting Conservative at the next General Election. A few years ago I was admitted to Southend University Hospital in a similar situation as you describe (eposode of PAF). I had been seeing a cardiologist, had already had investigation for my condition, including having a monitor fitted for 48 hours (however, I was not having an episode of PAF at that time) and he had said to present to my GP or A&E when in AF so they could capture an ECG and could then act. I presented to A&E at 01:00 early one the morning while in AF, was triaged, had an ECG taken within an hour and was admitted to A&E, monitored and then given IV Flecainide which eventually returned me to NSR. I was then moved to a cardiology ward, monitored and eventually left the hospital at 12:00 the following day with a prescription for medication (Flecainide and Bisoprolol) which I am still taking (without another recurring episode of AF since 🤞). I have no complaints at all about my treatment at Southend University Hospital and this is the treatment, or similar, that you should have been given. You deserve an explanation about why you were not given similar treatment at William Harvey Hospital and your MP should be requested to provide this. It is time that this failing Government accepts some accountability for the mess this country and, particularly, the NHS is now in after 13 years of their governance.

Here's praying that you get your condition addressed with appropriate treatment ASAP.

wendy6 profile image
wendy6 in reply to jamesvdv

Thank you James for your reply and support. Yes Im going to formulate a complaint and contacting Damien Green is a very good idea.

Interestingly when I was first diagnosed with AF in 2007 and I presented to A&E with fast irregular heart. I went to A&E told them about palpitations, was taken almost immediately to a cubicle, hooked up to monitor which showed AF. taken into A&E ward area put in a cubicle wit bed and curtain hooked up to an ECG, monitored. Waited some time there but then at 4am was taken to cardiac ward seen by cardiologist on his round in morning. Released the next day.

ETHEL103 profile image
ETHEL103

What a nightmare for you.Could you have gone to your gp during those 6 days.I know from personal experience my weird things usually happen over a bank holiday .You have to be very insistent that you need to see your local gp and if they send you to A&E it hopefully would be smoother.Big hugs to you .

Jalia profile image
Jalia

Just unbelievable Wendy. Thank goodness my local hospital is quite the opposite of yours. On one occasion in the past when I've presented with heart rate over 200 bpm and no chairs available the receptionist asked for someone to give up their chair if possible! Fortunately I only had to wait a few minutes before I was seen.

LaceyLady profile image
LaceyLady

CQC!! Well, just over a week or so ago I well and truest banged the side of my head on corner of dorma ceiling. I refused to go to a&e at The Royal Berks till I had to go on the Sunday, 2 1/2 days later knowing I was probably concussed. In spite of all my conditions and on Apixaban it took 5 hours waiting and could have been longer!

Thomas45 profile image
Thomas45

It's odd that you talk about carrying your own notes. The last time I was in A&E the hospital was all computerised. There were mobile workstations which the appropriate medics and nurses, etc logged into to add their notes / copies of x-rays and ECGs etc.

wendy6 profile image
wendy6 in reply to Thomas45

Yes its odd...but its a blank booklet folder where they can record your observations, meds etc if you are admitted. Nothing in it except sheet of stickers with you names address . But they put ECGs print outs in there. Im just so cross with myself for not taking a photo of the ECGs when I had them.

Ronnieboy profile image
Ronnieboy

An extra 1.8 million people to these shores and an increasing ageing population are not going to help in the immediate future ,who ever is in power.but I'm glad your feeling better.

Scout1947 profile image
Scout1947

Hi Wendy: So sorry you went through this, but it is very similar to my own experiences in A&E in the same hospital. On my 7th trip to WHH in Ashford on a Saturday night, I was there for 17 hours on a chair. Like you I was triaged to the UTC where I sat for 5 hours before being told I was in the wrong place and sent to A&E. A long night of beaten up kids and police ensued. My husband refused to go home and leave me there alone. I did see a doctor who ordered bloods, etc., which were done. At 5.00 a.m. I asked a nurse what was happening and was told the doctor wanted to admit me and I was to stay in A&E and be monitored until a bed was available. There were people there who had been there for 2 days waiting for a bed ‘to become available’. My heart also wasn’t being monitored and hadn’t been since lunchtime the previous day. A nurse was called over who was adamant she’d done my obs 10 minutes ago. Don’t know whose obs she did, but they weren’t mine. I discharged myself and went home. I called Kims in Maidstone and saw a cardiologist the same day. I then self funded (including £3,000 for a Cardioversion that only lasted 3 days) until I was told the only treatment left was pace and ablate, which would cost around £25,000. My private cardiologist then had me referred back to the NHS. My first appointment with a NHS cardiologist was last week, 2 years after being diagnosed with AFib in A&E, where he told me I was in sinus rhythm that morning so meds seemed to be working and I didn’t need an ablation. He has referred me back to my GP with instructions to go back to A&E if I think I need to. Effectively putting me to the back of the queue again. I have now resigned myself to learning to live with AFib and keep taking the meds!

wendy6 profile image
wendy6 in reply to Scout1947

OMG Scout ....what a terrible experience. WHH are not fit for purpose.

Im now waiting to see if the urgent referral to Rapid Access Chest Pain clinic is approved by them. Apparently even though A&E doctor did it as urgent BUT they triage and it can be downgraded which would mean Im on 8 month waiting list for Holter Monitor. She told me they should have made decision by end of next week if accepted they contact me with an appt. If refused they let GP know but not the patient, its up to GP inform me!

My referral to Cardiology from august 22 was received and is in system, but they wont let me see Cardiologist until they have had the Holter results!

If its refused downgraded...then Im going to go to private Cardio EP for first consultation taking my home ECG print outs with me. See what he says about my arrythmia. Then take it from there. I cant afford it, means putting on credit card but just have to do something.

Hi Wendy

This can be very worrying at times and frustrating too when Doctors repeat the same feeble reassurances yet never offer suggestions to eradicate this phenomenon.

As someone who has experienced the same issues of a period of 40 years… let me offer some suggestions.

Here goes…

Firstly…Things that make heart rhythms worse…

Stress … Caffeine… Over eating… certain medications like PPI ‘a…antibiotics..acute illnesses…viral infections … too much calcium …extreme fatigue..low magnesium often go hand in hand with anxiety.

Secondly… Things that improve heart rhythms (they do work!)

Magnesium Taurate… by far the best all rounder as the heart muscle is where taurate is found… 350 mg a day for women.

D-Ribose is a signal improver this does help strengthen the electrical pathway and lessen ectopics…Amazon sell this.

Foods high in potassium and magnesium … bananas.

Porridge oats reduce cholesterol…

Tocotrienols Delta Gold

Astaxanthin best antioxidant ever!

Rhodiola supplements reduce anxiety without bad side effects.

Do not skip meals but try to eat smaller

If you feel bloated or full of gas this trapped air can press against the vagus nerve and in turn affect normal rhythm… a quick fix is sodium bicarbonate one teaspoon in half a tumbler of warm water… but go steady as too much too often increase sodium and then B.P.

Funnily it also reduces blood calcium levels in the short term.

Get your thyroid checked as this can alter calcium levels…

Walking often improves rhythm because your feet act as a second heart and soothes the vagus nerve…

Vagus nerve exercise such as deep humming will help.. this does calm down the excitability of the heart… lastly diaphragmatic breathing..again this stimulates the main vagu nerve which controls the heart the stomach the lungs etc… often the reason why things run out of sync.

At the very least you should start to increase your magnesium in take via green leafy foods such as spinach and bananas..this increases nitric oxide in the body… which helps the heart a lot.

Get away from foods high and in omega 6 and aim for food high in omega 3… this reduces inflammation and helps circulation too.

It’s a lot to think about but should help you back to a life free from this worrying condition… you must not think in gloom or doom… your body just needs a little help to heal.

Best Wishes.🍀

wendy6 profile image
wendy6 in reply to

Thank you so much for all the information. Im definitely going to try some of the supplements and will take on board your health lifestyle recommendations.

I do know already that my vagus nerve is oversensitive ....when I suffered from Paroxysmal AF years 7 years ago my VN was often the culprit for attacks. I also have a small Hiatus hernia now and suffer from this if im not mindful of what and when I eat. Im also on PPIs.

Jalia profile image
Jalia in reply to

Some interesting pointers there Hidden ! Thank you.

Qualipop profile image
Qualipop

I've heard some bad experiences like a friend whose recent hip replacement bled very badly and she spent 30 hours in an ambulance before even getting into A&E but y our experience beats the lot. Rather than complaining via PALS ( useless in our area) write to both your MP and direct to the Health Trust for your area and insist that the Trust investigates the management of A&E. Tell them exactly what you wrote on here.

Swampygirl profile image
Swampygirl

Poor you. What a kerfuffle. I would have been seething. The doctors attitude was unaccepatble, huffing and irritated. Probably lack of sleep herself. Waiting times should never be like this. The government radically need to assess the state of all uk hospitals and improve on the NHS system. I wouldn't walk-into A & E. I'd go through 111 or if an emergency, 999. That said, patients are not always fast-tracked via 999. I've heard of many horrific stories. What a shame our NHS is n such a state. I hope all goes well for you. xx

wendy6 profile image
wendy6 in reply to Swampygirl

Thank you for reply. Yes Ive learnt quite a lot from this most recent experience. Will not make same mistake again.

Hilianna profile image
Hilianna

What an ordeal. It puts anyone off going to a and e. Glad to hear that there is no heart failure. x

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Oh dear.

I have a St Johns alarm at home. I got it about 6 months after stroke which is paid for by Ministry of Social Development. $15 week under Disability Allowance.

I have rung it once although I have persistent rapid heart.

I rung it after I fell an banged my head and said I just want to be checked over. I had scraped ny arm and hurt head, arm-shoulder and coccyx.

I was left with heart rate 187 Day avge on Metroprolol which I was 'made' to ingest from hospital although it made me breathless.

I've since learnt that one needs to request heart specialist and get noticed with tests ECO, ECG and face to face with H/Specialist.

Then she left me changing Metroprolol to Bisoprolol so H/R Day down to 156.

At night it remains at 47avge.

Locum Dr sais see a Dr Wong privately. Within 2 weeks. Worth every penny.

Interested yes, took full history, stroke with AF and then day 4 carotid Artery clear but shadow on thyroid.

Whilst internally assessed to general surgeon, biopsy, I had to follow each direction through with a talk to booking clerk but I got there.

4 months with disregarding the endocrinologist's advice to wait after 6 months post stroke my surgeon and anathaestist advice to carry out op a.s.a.p.

It was carried out in 4 mths. Thyroidectomy with 12 lymph nodes on right removed.

It is apparent to 'manage your own health" and not with A&E but to have a plan.

Drs don't like to change medication. Heart Specialist do. And I had a 24hr monitor before change and after change of meds. The calcium channel blocker is for me - my heart rate dropped 105 beats a minute within 2 hrs which was scary. And with a twink of the 2 meds and separated I won.

Diltiazem 120mg AM CCB and Bisoprolol 2.5mg PM BB.

102-123/69-77. with 62-88 H/R Day and 47 avge H/R Night

My advice is to see Private Heart Specialist who is recommended who will take an interest. My private H/Sp then referred me back to the Public H/Sp for 24-hr monitor.

He 'showed' up the inadequancies of the public system.

Unfortunately it's life. You need to take charge.

All the best but my AF was caused but thyroid cancer. I know that I can ring the home monitor if I need to. It gives reassurance and I could be carted off tohospital.

In the one incidence St John did not adhere to a check in hospital as on PRADAXA

and I was not wanting to go to hospital as I have a dog. But strictly speaking I should have.

Take care, jOY

Prettyorchid profile image
Prettyorchid

absolutely horrible situation. I could feel every minute of your anguish and sympathize whole❤️edly. I hope you get better treatment at this point.

DawnTX profile image
DawnTX

So will you be able to see your EP? This is why I don’t go to the ER here because they do not know me and would be clueless anyway. I’ve had a fib for three years in the past year. It has been persistent with a heart rate of 150 or so constant I am in heart failure now because of it. I have never gone to the ER if it’s a heart attack, and I needed saving that would be one thing, but with a fib there’s really not much they can do. I will still be miserable and I know it until it eases up a bit. For over a year I have not been able to walk only shuffle to get to the bathroom holding onto things and constant crushing pain in my chest, nausea and more. Unless your doctor has someone from his staff on duty at your hospital, it’s a waste of time going in my opinion only. We are all different. With a fib I think you need to learn to roll with it and reach out to your doctor if it’s that bad because you either need meds or a change or something that only he can help you with. Best of luck. I think all of the hospitals are overwhelmed and again when it comes to a fib, there is so little of the stuff can do for you. Probably throw you on an IV and maybe give you a pill which you could probably do at home. I know it’s so different there, but if you have a number you can call to get that same advice about a pill I would do it instead of wasting time being so unhappy where you were

wendy6 profile image
wendy6

Hello everyone,

I just wanted to say a bigTHANK YOU to everyone who responded to my very sad story - Ive had 88 replies which is amazing, and has helped me so much.

Lots of shared experiences, advice and useful information.

But most of all empathy and support 😘

This morning my heart was in normal sinus rhythm for a short while. I took our dog out for a walk and it felt ok. Back home and I'm getting lots of ectopics and a few SVTs again but I feel calmer in myself.

Im hoping my GP will phone me today ...my surgery has been completely out of action for 7 days now. Their IT system went down on 17th they have been unable to do appointments, access patient records, do referrals, do prescriptions, see or speak to anyone!!! You couldn't make this up could you. Yesterday I phoned surgery and asked for her to phone me regardless if system is up and running, we shall have to see!?

Wendy x

Afibflipper profile image
Afibflipper

Hello Wendy, Sorry I only just saw your post, what a nightmare for you. The thing I often suggest that I’ve done before is to contact the hospitals PALS (Patient Advice and Liaison Service) - they aren’t there to deal with formal complaints but they will act as an intermediary to try to help patients/relatives. On a couple of occasions I’ve used them when my son was about 5 or 6 and desperately needed some surgery and investigations but we were fobbed off, appointments cancelIed and he was getting worse and I had similar problems where scans were lost, I was accidentally cancelled off the system, the Dr had left an there was confusion when I was booked for telephone calls and they forgot - The PALS was very helpful, got me immediate calls, appointments booked, scans suddenly found and son was sorted too. Can’t hurt to call I wouldn’t have thought and maybe you’ll get onto a consultants list. Sometimes he who shouts loudest/most often gets sorted. Another advice is always get the name of the person you speak to and write the date& time of it so you can chase the same person. Try also to get email addresses so it can be done in writing if necessary as the have to respond to written contact’s especially if they think it’s going to lead to complaints. I hope you manage to get help soon as you say it’s no good for your condition and makes it worse.

Jetcat profile image
Jetcat

that is awful.!! And also very worrying. I have had a great deal of excellent care from our staff within the NHS, and I have had alot of surgery over the decades and cannot praise and thank them all enough. I am extremely grateful and privileged to know they are there for us but I’m also very concerned about wether we will have a NHS in a few years.? Something is happening and it’s not good.

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