Where do I go from here...: After... - Atrial Fibrillati...

Atrial Fibrillation Support

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Where do I go from here...

Steve112 profile image
26 Replies

After changing my doctor for the 3rd time in 2 years on the forums advice...I asked my latest GP if I could be referred to see an EP with regards my AF....my young doctor said should would contact my Cardioligist who I last saw 3 years ago to ask what he advised..I explained the difference between an Cardioligist and an EP which I assume she knew anyway...2 weeks later a letter arrives saying continue the Bisoporol and no need to see an EP...this assessment was based on just a letter my own GP did not even take my pulse check my blood pressure absolutely nothing just how are you feeling which is fine but when they discovered I was having AF episodes I was totally unaware I have demanded to see an EP 3 times now and each time just falls on deaf ears..any advice would be welcome on where I go from here maybe going private is my only option but is this the only acceptable option surely it should be a matter of course to be referred to the correct specialist...

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Steve112 profile image
Steve112
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26 Replies
CDreamer profile image
CDreamer

Persistence. First pick your EP - list available from AFA. Then return to said GP and say you are unhappy with advice so far given and failure to refer to a specialist. That you have a right under the NHS charter to be referred to a specialist of your choice. Ask specifically to be referred to chosen person.

If this doesn't happen, then ask reasons for not referring. Ask for them to be put in writing in a letter to you. Keep a file and have everything put in writing. Stress that you are worried about the advice given so far without any tests, investigations or treatment plan.

If no joy, ask to meet with the Practice Manager and complain, very politely and very logically - requires preparation as to what to say.

Just persistence to the same GP.

Where do you live?

CDreamer profile image
CDreamer

I just re-read your original post about a referral to EP.

What are your main concerns?

Are you on anti-coagulants? What is your CHADSVASC score? Did your GP do that assesssment?

Have you documental evidence of recent AF episode? If you are asymptomatic how do you know you are having episodes?

From my experience life becomes a whole lot easier if you provide documented evidence - such as ECG from Kardia or a 7 day monitor, A&E or paramedics - they will usually give you a copy of the trace if you ask. At the very least, your GP should recommend that, from the their own stock or from cardiology.

Ask for the reasoning for prescribing Bisoprolol? Have you a high HR? How do they assess that? Do you monitor your HR?

Ask searching questions which dig deep for reasons and ensure you have copies of all of the letters between you, your GP, your GP to consultants and consultant to GP.

Treatment for AF, after stroke prevention - anti-coagulation, is mainly for quality of life so if you are not symptomatic and don't know if you have AF episodes you may find it quite difficult to get a referral on the NHS.

Goldfish_ profile image
Goldfish_ in reply to CDreamer

My rant;

GP s are in a very difficult situation as gatekeepers of the NHS. As you know demand for access to EPs is much greater than the availability and the NHS is currently on its knees trying its best to use its staff and monies in the fairest and most useful way. Aggressive complaining is demoralising for all involved and takes up valuable time and expertise away from other aspects of patient management.

"Back in my day" when I began as a GP our area had one specialist who gave about one third of his week to cardiology. 30 years later there are 22 cardiology specialists (including EPs) for the same population - a 66 times increase. Yes there have been great improvements, but there has not been a corresponding increase in either funding or numbers of UK medical graduates.

As a GP I would have between 60 and 100 consultations each day, with the associated paper work and admin that accompanies it. Our budget of £120 per patient per year had to managed very carefully to fund all our practice doctors and staff. Although we all aspire to a Gold Standard service, it is just not possible as medical advances and improved options become available.

As regards "Your Rights" - you are not entitled to specialist referral on request - check the terms - it is all dependent on your needs rather than wants.

If you want to support the NHS (and it sounds like you probably don't fit the local criteria for referral) please help the service and save up for a private appointment. Try and help your doctor to help you (and the rest of the population)

BobD profile image
BobDVolunteer in reply to Goldfish_

OUCH! To be fair NICE say that if your GP can not control your condition within four weeks then you should be referred to a specialists. This is defined as a specialist in arrhythmias who could be either an EP or an arrhythmia nurse consultant/specialist.

Buffafly profile image
Buffafly in reply to Goldfish_

Very informative post Goldfish_ , thank you. If there was much more info given and PUBLICISED (sorry italics not available) perhaps at least some people would think twice about their demands and complaints, not getting at anybody because I am aware that sometimes these are anxiety driven or through ignorance. I know we are often told 'not to Google it' but if you stick to a 'sensible' site such as NHS or Boots MD it can be very helpful. I was recently chatting to a friend who was 'thinking about' going to her GP with symptoms but planning to wait and make notes about them, a quick check on NHS told me she had a 'red flag' symptom so I gently encouraged her to go straight away.

I have had two very expensive procedures but both were offered, not asked for, so if you can explain /demonstrate a real need you should get appropriate treatment.

CDreamer profile image
CDreamer in reply to Goldfish_

Dear Goldfish - Firstly as your reply was addressed to me, I am answering your comments.

I was not advocating complaining per se, however, treatment for AF seems to vary considerably and referral to specialists is at a GP's discretion. GPs are the gate-keepers to NHS services which we all know are, unfortunately, are overworked and under financed - we agree.

That does not mean that each patient should not be treated with the same dignity and consideration for investigation. Steve is obviously concerned and needs reassurance and advice, rather than a rant.

Of course resources need to be managed - as a very active member of my surgeries Patient Liaison Committee I am VERY well aware of the limited resources, but surely that is what we need is a national campaign for increased resources?

And that is for us as a society to have a national dialogue about how services are to be allocated and how much we as a nation are willing to pay. Our NHS is not by any means a Gold Standard and if we want that we need to pay more tax. One of the reasons Banks will not move to France is because despite Brexit - the cost of employing people and tax for social services is something like 60% of salary whereas is average more like 30% in the UK.

It is not for doctors to discriminate without investigation.

I developed AF some 10 years ago, however, it took me 7 years to even have heard of an EP. I had appalling service from my local cardiology department who I know now had neither the training, the expertise nor the experience to advise me knowledgably.

Thankfully, my GP was extremely supportive and suggested I see an EP when my AF became to affect my quality of life and yes I DID pay privately - for both the referral - as I had to go to London - AND for 2 ablations. Luckily I am in a financial position that I was able to afford private medical insurance - which I have had since I was 21. But there are very many on this forum who are not in such a fortunate position and whilst one might suggest that a private consultation as a way forward, I object to the 'tone' of your last paragraph.

The NHS budge in my locality has decreased in real terms by 5% per annum for the past 8 years - that means loss of beds, loss of resources, loss of services. Not something I am happy about at all!

That still doesn't excuse GPs who do not even take a pulse, a BP or a basic history - if that was the case - which is why I was suggesting Steve take a little more trouble to provide evidence of symptoms and documented evidence.

What I WAS advocating was a little more information needs to be forthcoming from Steve in the way of evidence, before a referral to a specialist - a few investigations need to be addressed - I was left being very unsure whether or not Steve is suffering AF episodes.

As to 'rights' I happen to think it is a basic human right to be believed, to be treated with respect and to be helped and supported by the gatekeepers, on the face of it - that is not happening in this case.

Goldfish_ profile image
Goldfish_ in reply to CDreamer

Without knowing all the details, its impossible to make a judgement as to whether Steve is being managed appropriately, respectfully, helped and supported .

My intention was to give a perspective from a GPs point of view and how we all need to try and work together to achieve the best for the whole population and how demand and complaints can contribute to crippling the NHS.

I acknowledge it was a "rant", but as I came out of our local concert hall last night I saw an aparantly fit young lady nimbly get into her sleek low Mercedes sports car, complete with disabled badge in the prime disabled parking space outside. Meanwhile a quadraplegic man was being wheeled up the slope, with great difficulty.

How are we to ensure good services to all in a fair way?

Victor Meldrew

CDreamer profile image
CDreamer in reply to Goldfish_

We are on the same page me thinks, however, as a person with an invisible, quite disabling illness - Myasthenia graves - who hasn't applied for a disability badge yet, although I have been told I could, I do think we are sometimes too quick to judge. I have been verbally abused for using airport support because I 'look' well.

May we agree to reserve judgment until all factors are known?

Best wishes CD

Bagrat profile image
Bagrat in reply to Goldfish_

I have always had the feeling that as a rule of thumb most GPs manage most ups and downs of the average patient very adequately. In the last few months I had a hiccup with my longstanding meds ( flecainide) and/or my heart rate. I heard the opinion of the med reg of the Consultant who discharged me 3 years ago through a young cardiac spec nurse friend who chatted to him which went " well she needs a review, an echo and why is she on Flec regularly it's for short term use and usually a pip. She should come back to clinic" I was put on bisoprolol very low dose by one of the GPs yuck, Flec was reduced gradually and bisoprolol discontinued. I am just fine and such a juggling with meds at the hands of the hospital could have taken so much longer as average waiting times for review are at least 12 -15 weeks. Also I may have seen this reg who seems unaware of many of us on regular flecainide, sometimes for many years!! I might have been tempted to go privately but my cardio in whom I have great faith does not have a private list which I find comforting for some reason.

Wendy B ( retired clinical nurse specialist in pall care)

in reply to Goldfish_

Goldfish. A word to the wise: if you ever voiced your opinion about the "apparently fit young lady" and the sports car on a heart-failure website I use, be warned, you would be lynched!!!!

Goldfish_ profile image
Goldfish_ in reply to

Well I was trying to provoke a reaction.

Sometimes the most able get the most of everything including healthcare.

Steve112 profile image
Steve112 in reply to CDreamer

Many thanks to everyone for your such helpful replies there is something in every reply that was useful and I thank you all..my situation is that I was diagnosed with AF after a knee operation I did not know I was having these episodes and to be honest I still don't know the difference from an episode or simply being out of breath from for instance walking up four flights of stairs at work .my heart beats faster but then why wouldn't it..after excersion...I really am unsure that I have any symptoms at all..when I was first referred to a Cardioligist he put me straight on warfarin then after 6 months after seeing the Cardioligist again it was stopped after I was fitted with a 24hr holter and all was fine..his recommendation was just keep taking the Bisoporol with no future appointments...my main concern is surely an EP would be the person who could identify if there were any issues in any way and if my episode was a one off then why am I taking the medication which I find Is making me feel a little depressed again unsure if it's the medication or just my confused state with what is or not going on... My chads score is 0..I have just turned 60 and generally in good health I have never smoked not overweight and drink on very occasionally and have a healthy diet and lifestyle...

Polski profile image
Polski in reply to Steve112

Dear Steve,

I suggest you do three things: first discuss with your GP coming off the Bisoprolol. It is there to prevent your heart rate going sky high (which is bad for your heart) when having a bout of AF, and to improve your quality of life. If you don't experience your heart rate 'taking off' then it probably doesn't, so you probably don't need it. This is just the first 'drug' of choice to hand out to anyone who shows signs of AF. Bisoprolol does not improve your QOL, it makes it worse (side effects) But you must come off it slowly, 1.25mg at a time, leaving perhaps four weeks between each reduction., because your heart symptoms can appear to increase initially while your body adjusts. When you are clear of Bisoprolol you should feel much better, 'can get your life back' and (with the doctor's agreement) can take it as a PIP should you genuinely experience symptoms.

Secondly, if, once clear of Biso, you do have concerns, get a Kardia as suggested above. Then take some printouts to your GP for her to see what the problem is. Then you should get some response, if indeed you need it ie you don't need an EP now, just be proactive with your GP - and say 'No' to Biso if you can!

Thirdly, research on here: diet, supplements, life-style changes, and the websites of Dr John Day and Dr John Mandrola. There is lots you can do to decrease this problem, without getting medical intervention or specialist advice.

in reply to Goldfish_

Are you for real, I think that you are on the wrong forum. It sounds to me that you should see your GP for anger management.

PeterWh profile image
PeterWh in reply to Goldfish_

Payments are apparently £136 average per patient - so presumably they get more for some categories. Is it the elderly?

Goldfish_ profile image
Goldfish_ in reply to PeterWh

It's a complex formula that varies from practice to practice (ours was £120) , but my point really was that GPs are managing patients with quite a small annual sum of money, which is certainly not thousands of pounds per patient.

In terms of value for money, you get one year of unlimited GP and nurse contacts for less than the cost of a single private appointment with a specialist.

I think most practices offer excellent value for this money, but the Daily Wail doesn't seem to acknowledge this.

Buffafly profile image
Buffafly

The magic word was 'should'!

I was getting nowhere with my GP and getting into a bad state. I was put on totally the wrong drugs which made me worse still. Eventually I asked for a private referral to a specific Heart Rhythm Specialist (an EP, but more understandable description and the one he uses himself). I got the referral straight away, with the clear impression that having asked for a private referral, it lifted a burden off the GP.

The consultation cost me £150-200 (that was 4 years ago), and it was all I needed. I then went on to be treated by that EP under the NHS, including a 2nd ablation.

So bearing in mind what goldfish has said, maybe private is the only route available.

Daft isn't it? There's a shortage of EP's but no shortage if you go private, and it only costs £200. The cost of me going back and forth to my GP with no solution month after month must have run into thousands.

Koll

in reply to

Hidden , your last paragraph says it all really. There is no shortage of anything if you have the money .

Sandra

Goldfish_ profile image
Goldfish_ in reply to

GPs get paid a fixed amount per patient per year irrespective of how many consultations they have, so the cost to the NHS is still the same £120 per year.

in reply to Goldfish_

Point taken, but it was still a waste of time and money though goldfish, whoever pays for it, directly or indirectly, mine as well as theirs, whoever "they" are.

PS. just so I don't sound like I'm always criticising by the way, and being very aware you're a retired GP (I think), in nearly all other respects my GP's are great. They caught my ocular shingles in a flash last year, that could have been truly dreadful. But for some reason, with heart electrics they're not good.

excalibur profile image
excalibur

having seen the other replies, I can only add that you need to have your GP on your side working with you, and an over aggressive approach isn't the best way of achieving this.

focus on the problems your condition is actually causing you and see if you can agree a strategy with him/her on how to manage these. It may take time, but maybe it isn't that urgent and we are talking about a long term condition and not one that has an instant fix

hope you manage to resolve this

lance

Elaine1951 profile image
Elaine1951

GPs are General in their expertis. They are trying not to spend money . It may be helpful for you to see the letter the GP wrote to Your Cardiologist. Also you could write yourself.

Bad enough suffering with and from AF without arguing over seeing a specialist

Frankly if it was the gps own family me,I bet he'd make sure they saw the best person.

I also agree that battling against Ho is unhelpful and better alongside if you can

Good luck

Goldfish_ profile image
Goldfish_ in reply to Elaine1951

In defence of GPs again, like cobblers family's shoes, I've had af for 7 years and never seen an EP about it.

Loquitir profile image
Loquitir

Perhaps trying Dr Wyn Davies Harley Street to establish the fact you have AF and need treatment. Then on the NGS use choose and book.

kkatz profile image
kkatz

Steve I sympathize with you .It makes you feel so helpless & frustrated.I can't offer any advice as in same boat.But good luck.

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