I am confused . Often on this site people write in about “their” EP or their EP nurse. It seems that they have easy access to these practitioners and constant support should they need it.
Is this the case in America or is it possible here too? Is it in certain areas?
I do not have an EP or an EP nurse. I see an NHS cardiologist once a year and that is that. I have had mitral valve surgery and have persistent AF. I saw my” cardiologist” last week , to get the results of tests done in June, the 4th! The results were a bit unsettling but, I will not see him till some time next year.
He said my heart rate was too fast and that he would fax my gp to increase the dose of digoxin. This still has not happened , surgery said it is up to me to chase him..... haha.
I am due to fly to NZ next Wednesday, usually I am excited, this time I am terrified. I am due to have a gastroscopy tomorrow, had to be private, £1,400 as even A and E could not get me done before 2 weeks.A and E were superb! Checked everything , but they are tied by lack of funds and staff.
Any sensible words of comfort would be welcome.
Am sending heaps of good vibes to anyone out there who may be having a winter wobble!
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Luludean
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In a nutshell.I think/it seems to me from readings on this site, that in some parts of the country there is a far better service with regard to individual departments or overall as a hospital or as a Trust.Build into that a good gp and a well run practice. It all adds up to a far better service for the worried patient.
I do not have an EP.I suspect they are a recent invention around here. I have just seen a good cardiologist nhs via my gp and now awaiting echocardiogram and a follow up.....first time I a have been followed up in 8 years .I have perm afib and had a hole in the heart fixed 8 years ago following a tia so I do not think they pay too much attention to me and I have been a bit too laid back about it all as i am pretty ok otherwise.
I can understand your dilemma. If I was in your shoes, because you're leaving for NZ so soon, I'd consider seeing an EP privately for an initial consultation ... about £200-250. You'd probably get an appointment this week and they can get your records and readings from your cardiologist beforehand. That way you'll know where you stand and can hopefully enjoy your trip to NZ. I'd also make sure I was well insured for the trip - healthcare in NZ is just as good as it is here.
O nice reply. Thank you. I did give in and saw a private man I trusted ages ago. Surprisingly he managed to get hold of nhs tests immediately.. he told me valve was leaking again( any news like that is enough to make me pass out) then jokingly said he could give me the number of a good cardiologist in Singapore!! Hahahaha.
I know I am being neurotic but I am scared rigid of a gastroscopy, awful vivid imagination.... on Riveraxaban . I am going in alone , that is sad but fine . All my friends keep selfishly dying.
Sorry to hear of your dilemma Lulu. Firstly an EP is an Electrophysiologist, a Doctor who specialises is heart arrhythmias, these are the go to specialists for those of us suffering with AF and other heart rhythm problems. Taking Hillys advice I would if possible arrange to see one privately and go from there. Most but not all cardiology units have an arrhythmia nurse attached, they act as a go between and your first port of call when you need advice and reassurance. The nurse can then talk to your cardiologist or EP and let you know what to do. Hope this is of some help.
Unfortunately Lulu, it is a bit of a postcode lottery, as we know from the news, the NHS varies significantly around the country. You probably know this, a Cardiologist specialises in the plumbing ie your mitral valve issues, an EP is an electrician who specialises in the electrical impulses of the heart which if they go a bit haywire, cause AF. Very often, GP’s refer you to a Cardiologist and as far as the GP is concerned, their job is done. Often, with persistent AF, once you are on a medication regime which seems to work then often that’s your treatment sorted and thousands of AF patients are happy and lead relatively normal lives. If your AF is getting worse and the symptoms more troublesome, then the only way forward is to see an EP. Either your cardiologist or your GP can arrange that, but it may be challenging and you may have to fight your corner or alternatively, you could have a private appointment to help establish what options are available to you. An EP Nurse is more commonly known as an Arrhythmia Nurse and they are generally available at hospitals where EP’s are based and they are great at helping you maintain and/or manage your condition.
If you decide you want to pursue any of these options and have further questions, just ask.....hope this helps.
I have had persistent AF for 10 years . I have never seen an EP person. On pill regime from cardiologist at NHS hospital here. There used to be a help line to call but that seems to have evaporated.
We have to face the fact that 8 months between test and results and “ by see you next year” is result of decreased funding and European staff heading back home. It is all unsettling.
I’m not sure where in the UK you are but it should be possible for your GP to refer you to a hospital that has an EP department even if it means a bit of a journey for you. I lived in Kent when I was diagnosed and my local hospitals had cardiology but not EP departments. I asked my lovely GP for a referral to an EP rather than one of the local cardiology departments and after doing some research he found one of the hospitals in Kent, the William Harvey in Ashford, had links with and held outreach clinics for Barts and St Thomas’s in London. I had all my tests and early consultations etc in Kent, results were sent to the EP Professor Gill at St Thomas’s and after seeing him there he agreed to perform an ablation which was carried out at St Thomas’s in London. I’ve since moved to Somerset but have travelled back to London at first after six months and then annually for follow up appointments since. I was given the phone number for the nurse manager there but luckily I’ve only needed to call once for advice. I left a voicemail and he called me back very quickly. I’m now off all meds except Rivaroxaban so don’t need specialist support at the mo.
I’ve been told there is a good EP department in Bristol so if I have problems in the future and need a new referral I’ll ask my new GP to refer me there.
I was very lucky with my GP in Kent but it might be worth doing a bit of research yourself to find where the nearest EP department is, likely to be in a big centre, and try to get referred there or alternatively seek a private appointment if you want to be seen more quickly. You can transfer into the NHS afterwards if you need further treatment.
My Cardio sent my GP a letter, and sent me a copy - so I got the Cardio's e-mail address - and I did (eventually) get a reply. My problem was convincing the GP that I was ill, and not "just depressed".
As you see from the answers here it is often these days a case of helping yourself and finding your own specialists and information.Luckily ,people on this site are extremely helpful and so willing to share .
I don't think it is a matter so much of where one lives but who one comes across. Some GPs seem to have a lack of awareness and some cardiologists don't seem to be keen on referring to EPs. One relies on information like the wealth of knowledge available here to move oneself forward if there's a lack of forward momentum in one's care.
I spoke up for the NHS earlier this morning. I feel very lucky to have had the excellent care I've received. My cardiologist (who I have seen once) is 23 miles away in Lancaster and my EP in Blackpool, who I have seen several times, is 55 miles away. I have his secretary's phone number and email address and can make contact if I need to.
We all have the right under the Nhs to see whichever consultant we choose.Cardiologists are in the majority,they are the plumbers if you like,the EPs are the electricians. You can ask to be referred,or you can book a private appointment with the eP of ypur choice,between 175..200 quid.Seen within days,then transferred to nhs if need be for follow up.
I am confused . Often on this site people write in about “their” EP or their EP nurse. It seems that they have easy access to these practitioners and constant support should they need it.
Is this the case in America or is it possible here too? Is it in certain areas?
The EP (electrophysiologist) is a specialist in arrythmia so it is worth a private appointment with one. They are generally based at the big or specialist hospitals so you will probably have to travel 50 plus miles to see one. The decision to do this should be based on your QOL (Quality of Life). If you consider your AF is affecting your life and stopping the things you want to do it is worth doing. However if AF hardly affects your life then one of the options is simply to live with it.
Good luck.
I was diagnosed by consultant with AF in 2012 and that was it as far as he and my surgery were concerned! Even after a trip to resus nobody was interested until I saw a locum at Surgery who made appointment with another cardiologist. She was very surprised at my lack of monitoring especially on Dabigatran and sent me to the elusive EP! It was he who gave me his secretary’s number and that of the arrhythmia nurse. He is based at QA in Portsmouth if you are in this area.
For me, my EP & EP nurses are in Manchester, 60 miles away where my family live.
My other option was to have them 30 miles away in Leicester - a place I don't know and only visited once by accident when trying to find Twycross Zoo at the turn of the century.
At my local hospital, where I work, I have my local cardiologist's email address from when I was getting them and Manchester to liaise, and I've not really needed to contact anyone in Manchester (yet) outside of normal appointments.
I'm pleased in a way that traditionally the EP out patient clinic always runs late, so I can at least feel like a 120 mile round-trip for an Outpatients appointment is worth it..... whereas whenever I've been for pre-op, I've travelled 60 miles (often the day before and stayed overnight) to sit for 10 minutes whilst they do paperwork and swap my crotch and then come home 60 miles on the M6 carpark.
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