Right to have consultation with EP?

[Buffafly]

I have noticed several people state that everyone with AF has the right to see an EP. I have read NICE guidelines very thoroughly and all I can find is that if primary treatment with drugs has failed or proved unsuitable then the patient should be referred for specialist management (which can be with an Arrhythmia Nurse) within 4 weeks. Also there is a long preface which basically says that ultimately all treatment and referrals are down to clinical judgement.

I am not saying anyone is giving incorrect information, just like to know where it is found.

If the NICE guidelines are indeed the only ones to follow then patients are not really able to insist on any referrals so informed argument would seem to be the way to go and of course GPs/cardiologists should take the trouble to explain why they are refusing your request, even if the answer is that they have other patients whose need is much greater.

[BobD Volunteer]

You are correct in your interpretation of NICE guidelines but there is another factor which needs to be understood. ALL care under NHS is supposed to be patient centred  and patients have the basic right to be treated by whoever and wherever they wish. This may not suit some GPs or CCGs but it is  true.  You can therefore ask to be referred to an EP if this is not offered.

Bob

[Buffafly in reply to BobD]

Thank you Bob, I became interested in this question because several people seemed to be asking but not getting!

[checkmypulse]

Bob is correct. Twice I have asked to be referred as was not happy with first hospital or consultant. Had no problem with GP trying to steer me away from this. Think it's covered under NHS Choices or used to be.

[Buffafly in reply to checkmypulse]

'You are entitled to ask for a referral for specialist treatment on the NHS. However, whether you will get the referral depends on what your GP feels is clinically necessary in your case.'

Quote from NHS Choices website. An interesting read, the list of legal rights is pretty short!

[PeterWh]

You also need to look at NHS England website because there are stipulations over and above NICE. It is there (I think) where it is stated that you do not need two failed medicine regimes in order to be put forward for an ablation. 

[Buffafly in reply to PeterWh]

That is correct but 'specialist treatment team' is not necessarily an EP according to NICE. You can be put forward for ablation if medication is ineffective or not well tolerated and taking other conditions into account, so again, a matter of clinical judgement.

[RobertELee in reply to Buffafly]

Then one should be mindful of the clinical judgement you are subjected to.   If you don't like it, change the clinician!   You're certainly entitled to do that.

[Mrspat]

Not directly relevant to an EP but I was able to change cardiologists via my GP.  The NICE guidelines for my congenital condition state that anyone with it is entitled to see a specialist at least once.  

[Omniscient1]

... And if the specialist doesn't think it worth their while seeing you after a referral then you won't and your only recourse is to get your GP to try and refer you elsewhere. Probably easy in London, but difficult elsewhere due to the smaller number of specialists.

[Lindabob]

I must say that as my AF worsened I suggested to my GP that an EP might be better than a cardiologist.  He agreed and we went with a private appt for a first consultation.  I am now on the waiting list with NHS for ablation.  It was that easy

[KentAF]

Going back to first base, the question is on your first episode or event, when you should be seen by a Cardiologist, to gain confirmation of either SVT or AF this must need the input of an EP (?) hence referral to one.

[Buffafly in reply to KentAF]

This is just my experience but my cardiologist referred me to an EP when it became clear my treatment was failing, and the EP booked me for an ablation on the basis of the cardiologist's report and my ECGs, no cosy chat! The only difficulty was with my GP who was reluctant/couldn't be bothered? to contact my cardiologist.

[KentAF in reply to Buffafly]

I think you should take this up with either your Practice Manager or CCG, referring to the Stroke Prevention strategy. I know it's hard to complain but it would benefit not only you but any other patients in your area.  The other short circuit is to go to A&E if you are unfortunate enough to suffer a bout of AF. What medications have they prescribed you?

[Buffafly in reply to KentAF]

Too late now! I had the ablation done very quickly, very successful, and the only medication I am taking still is Rivaroxaban.

I should make it clear that I was already under the care of a cardiologist who prescribed the meds I was taking for AF so my only complaint would be that the GP did not report the bad side effects to my cardiologist. I am thinking of asking to change GPs which will be an opportunity to say why (several reasons) I am not happy with the one I have.

[KentAF in reply to Buffafly]

I too am struggling with the side effects of Flecainide and Bisoprolol prescribed by my EP - he will not contemplate any other drugs so I now intend to go private as I am so short of breath at times I can't stand in a queue or go to the shops on my own any more but apparently the ECG tells him otherwise. Am I alone in this?

[stargazer61 in reply to KentAF]

No, well i have yet to see the ep, but when i tried to speak to the ep via his secretary about my side effects(vertigo, nausea, no energy to walk or even talk, depression, swollen joints) she told me it was nothing to do with ep but reluctantly said she'd get someone to call me, promptly forgot about me and after a week i called back and eventually spoke to the cardiologist (by this time i had reduced my flecainide and had stopped it completely but still had severe bloating, dizziness, extreme fatigue etc) He agreed that the side effects i had attributed to flecainide were probably correct, and told me to just stop the bisoprolol. I said i would not just stop but reduce gradually. Not impressed by any medical help. Had to cancel the ablation he head put me through for from one svt attack because i couldn't speak to the ep beforehand with concerns. Fed up with the whole thing. Gp unwilling to go against cardiologist, no one seemed interested in any side effects, terrible when you are feeling so low and ill to have to research (blurry vision and all) your own condition and make such big decisions without back-up. Sorry - i am on a terrible downer with it all - but do finally have an appointment with the ep this month. Can't advice you - but you're not alone! I'd have been lost without this forum - some great advice and support and a variety of opinions and experience to help you. Do everything to help you relax or laugh - that got me through a lot - at one point i was walking about with a pencil in my mouth (to trick the brain into the message i was smiling and send me some feel-good medicine!) , holding my 'happy-place-finger' with a slow heartbeat booming out of the laptop - whatever works!! Sending an ehug to you, sorry to moan, i'm not quite right at all just now!

[KentAF in reply to stargazer61]

Snap, snap and snap again! 

I know these people are overworked but  sometimes I think they believe their patients are exaggerating the symptoms (because the ECG etc is noral) but I wish they could walk (or stagger) around for a day in our shoes. 

I've just discovered by chance that Prof Schilling holds a clinic in Kent (? anyone out there know this as a fact) as I'm too ill to contemplate a trip to London, so fingers crossed he might be sympathetic to the adverse effects of the terrible cocktail Flec & Bisop. Am that desperate would go anywhere but the 'seizures' of breathlessness are getting too much to bear.

Good luck with your appointment....and thanks for the tips

[stargazer61 in reply to KentAF]

All i can tell you is i couldn't walk for five minutes i was so dizzy and unbalanced and now i can walk 3 miles. Only thing i've not thought of changing is the anti-coagulant. Hope you get some support to reduce/change your medication.

[Jdunk in reply to stargazer61]

 I know how you feel when you have unresponsive medical advice.  Try taking CALM  it's a powdered form of magnesium 

[stargazer61 in reply to Jdunk]

Thanks for that, funny my step-son just mentioned that about an hour ago, we were laughing at me taking the laptop to bed (usually a big no-no but it worked a few nights ago) to help with this batch of insomnia. 6 hour long videos of deep sleep, hypnosis, tibetan bowls, whale song and dolphin song and slow heartbeats later i unplugged it! You have to laugh..Thanks again, i'll look into that one.

[Mike11]

Rather than fight the system simply pay for a first consultation with an EP of your choice.  Once that's been done and the need for an ablation is agreed and stated in the letter from the EP then the GP and NHS bits follow on moreorless automatically.

[Buffafly in reply to Mike11]

That is good advice (for those who can afford it) but I have noticed there is a tendency to advise people to see an EP as soon as they are diagnosed with AF, even if (hypothetical case) they had one short episode when they were falling down drunk two years ago. This is making people more anxious than they need to be. In my opinion, which I am sure many people will disagree with, you don't need to see an EP until physical conditions eg thyroid and heart conditions eg leaky valves have been investigated, and then only if you continue to have episodes. The point of seeing an EP is to prepare for an ablation in the same way as you would see a surgeon for your tummy pain if it has been proved to be appendicitis.

[KentAF in reply to Buffafly]

That's an interesting theory as long as the patient has the appropriate medication in the meanwhile to keep them safe and well and reduce the risk of stroke: the length of time waiting for NHS appointments for the different menu you quote only adds to the stress and uncertainty for the patient which can also be damaging to their health and confidence.

[BobD Volunteer]

I wouldn't entirely agree with you there. The fact is that many cardiologists are not experts in the electrical side of the heart. As I always say. plumbers not electricians.

An EP has much more knowledge and in many cases will not recommend an ablation but continue to try different medication until all avenues have been explored. Ablation is normally only considered if it will improve QOL.

[KentAF in reply to BobD]

My EP did consider an ablation but when I was on the table he couldn't pinpoint where the problem lay. Do you think I stand any chance of getting another EP to look at what the first one did and consider having another shot at it (either NHS or private)?  I was so disappointed, was OK for 8 months but now getting worse again.

[RichMert]

I think the EP / Cardiologist (what is the difference) would want the GP to have exhausted all available treatments and tests before a referral. I recently suggested to my GP that I was considering paying for a one off visit to see my consultant and he immediately said 'why would you want to pay?, I will send a letter off to get you an appointment'. That said, he had mentioned that he could no longer offer any form of treatment and that a visit to the Consultant would be a good idea.

I look at it this way. Microsoft trained me to repair their products so therefore, I should only contact them if I am totally stumped.

[Annaelizabeth in reply to RichMert]

The difference between EP and cardiologist is, as Bob says above, EP deals with the electrics of the heart whereas the cardiologists deals with the plumbing.  The difference between an EP and a Microsoft expert is that the EP like to see the product before it gets to the 'stumping' stage!

[RichMert in reply to Annaelizabeth]

Yes I wish my patients would come to see me earlier as well.

[Buffafly in reply to RichMert]

It goes like this re AF:

GP can prescribe basic drugs and do basic tests eg ECG. @KentAF

Cardiologist can prescribe more complex/dangerous drugs such as antiarrhythmics after more tests such as echocardiogram or even angiogram. In the hospital I attend there is no EP but my cardiologist has a special interest in Electrophysiology and a 'tame' EP to consult.

EP specialises in electrical problems of the heart and performs ablations to 'cure' AF/Flutter.

[Steve112]

I'm sure we are all aware of the difference between Cardiologist and an Ep...my question is why GP's still refuse to refer sufferers of AF to an EP....I have moved doctors recently and again I am told the is no process or need for a referral..do I need to continue to change doctors every 5 mins which causes much stress and why do Cardiologist take the same stance...it is becoming clear it is purely a lottery and going private at great expense is maybe the only way forward.....

[CDreamer in reply to Steve112]

NHS Politics?  Ego?  Financial considerations?  Lack of resources?  Ignorance? - of the various doctors - not you!