Diagnosis AF: Waiting list to see cardiologist 12 months; 14 months for Echo... suggests not serious?!

[Valbun]

Hi there (again)!

Thank you for all of the really helpful responses to my first post. I telephoned the hospital this morning to find out how long I would wait to see a cardiologist and for the echocardiogram. I was informed it would be 12 months to see a cardiologist and 14 months for the echocardiogram as it was a 'routine' referral. I am a little bit concerned, as having read a little bit it would appear that the sooner appropriate treatment is commenced; the better.

Does this suggest that there are some cases where AF is not considered to be as serious as others? Or is this the norm?

I have arranged a private appointment with a cardiologist and will have ab Echo test done private as well. I don't think it would be wise to wait this long with no treatment - given my pulse is irregular all the time and I am conscious of the weird heart beat thing going on and also experiencing some lightheadedness?

Any thoughts on why this it is considered to be a 'routine' referral? Am I over-reacting?

Thank you.

[Hidden]

I think it’s a bit of a postcode lottery, but the waiting time does seem long. I think it’s good that you have decided to have a private consultation but if it’s self funded, there are a couple of things you need to consider. The echocardiogram is likely to be expensive and you may want to check the cost first. Also, if you plan to have any ongoing treatment or procedures carried out on the NHS, you need to make that clear at the appointment. This not normally a problem, but it’s best to avoid any misunderstandings.....best of luck.

[Valbun in reply to Hidden]

Thank you - Yes, I have already checked the cost of the Echo - £380 - and the initial consultation fee is around £190. I've asked my GP to upload the test results I've had already (Holter, thyroid, cholesterol, and any additional ECGs) on to the private hospital system (which they advised).

I'll definitely be flagging up that I want to go back into the NHS system for ongoing management/treatment - once I have an idea of what that might involve. I'm hoping that my GP can manage my treatment.

I guess if I was considered to be at 'high risk' I would be moved up the list, but obviously not! Good in one sense, but once you hear you've an issue with the workings of your heart - you want things looked at sooner rather than later.

Thank you again. (By the way the earliest I can be seen privately is 2nd December - the consultant is very busy! Not surprised with these waiting lists)

[Finvola]

Good grief Valbun - that’s an unpleasant surprise. I suspect that your GP is limited to a ‘routine’ referral unless there is evidence of urgency. My husband was told three years to see a consultant for a minor routine op, even though he was in discomfort.

You seem to be on the ball with the private costs and procedures. Our local private hospital is booming too - locals and cross-border patients coming in for treatment under the EU directive. That is something worth exploring too as you have been quoted very lengthy waiting times for consultation. Nuisance is that it would mean travelling to either Letterkenny or Dublin.

Best wishes with your consultation - might it be an idea to take someone along with you? Backup is useful in helping with the listening part of the consultation.

[Valbun in reply to Finvola]

Hi there., and thankyou again for your reply.It was indeed a bit of a shock to be told I would have to wait 14 months.

I managed to get a private appointment with the consultant who is the clinical lead in cardiology at my local Trust so I’m thinking if I see him and get the Echo test done then hopefully any subsequent treatment can be done on NHS.

When I spoke with the clinic they said he was really busy and appointments booking up v. quickly. I was fourth person this morning!

My hubby will come with me - he was there at my GP appointment last week when she told me the outcome of the Holter test. We knew there was something up as the practice called and asked me to come in for an appointment in the next day or so. So was good to have him there as I was struggling to take in the details.

Hope your hubby got sorted out more quickly than the 3 year wait!

Take care Vx

[Finvola in reply to Valbun]

That sounds really positive! My husband had the procedure done privately as it was just too long to wait.

Best wishes.

[Shcldavies]

My view is that some Docs do not give our condition the priority it deserves and yes the sooner you get the right treatment the better. Your doing the right thing going privately, hope you get the treatment you need soon. The NHS is very good indeed but unfortunately its not perfect.

[Valbun in reply to Shcldavies]

Many thanks- yes it does leave you thinking that perhaps this isn’t anything to be concerned about... then when you start to read up on it...🤔

[Shcldavies in reply to Valbun]

Its nothing to be concerned about if you get the right treatment, the longer it goes on without treatment the likelihood is the worst you will get, then when you finally get the right treatment it will be far more potent and likely have greater side effects. Many take years to get the right treatment and living with the condition is not the best. Your on the right track keep pushing to get it right for you.

[dani777]

seems like 14 months is too long. if you're really worried and you're having bad symptoms, bad palps, try to push them into making it sooner. or if you can afford to go private, that's lucky for you so you can of course go that route. and it's totally understandable to be scared because having palpitations, particularly when they last all day or don't seem to go away, are very scary and it's hard to function when it's like that.

[Valbun in reply to dani777]

Hi Dani - I think I’m more concerned since I got the diagnosis as before that I was putting a lot of what I was feeling down to stress and migraine and just being run down. But now that I know there’s something going on that can and should be treated, I want to get seen to ASAP.

Also what alarmed me was reading that the longer you have AFib the more resistant to treatment it might be and it can become permanent. It seems crazy that this is considered a ‘routine’ referral.

That said, I guess I don’t know what the criteria are for classification and I’m sure other heart issues are more debilitating and life threatening. 🙂

[dmack4646]

Are you based in the UK - these seem unacceptably long wait times ?

[Valbun in reply to dmack4646]

I am based in Northern Ireland which is part of the UK. Our devolved government is not operating at present and this is a big part of why our health service is in such a mess.

[cuore]

You say, "my pulse is irregular all the time ." That comment would mean that you are in persistent AF ( greater than 7 days) and not paroxysmal (coming and going). Once you are in persistent, the rogue signals spread to beyond the pulmonary veins at the rate of 4 target areas in the first 6 months and another 3 in the next 6. See Professor Haisaguerre's , the inventor of the ablation procedure, writings. At one year, you are in long-standing persistent. After that period, the next phase is permanent. AF begets AF: the longer you are in atrial fibrillation, the more atrial fibrillation you will have.

Time is not on your side if your pulse is irregular all the time if you want treatment to return to sinus rhythm.

You say, "I'm hoping that my GP can manage my treatment." My GP, without even asking me if I wanted to live in sinus rhythm, treated me without knowing what he was really doing so that I went into persistent AF in on year. Your line of thinking about GP management may eventually lead you to persistent AF if you are not already in it. Besides, GP's cannot prescribe rhythm control meds, only rate. That means a GP can only keep the heart rate down with rate control pills, but as he cannot prescribe rhythm control pills; he cannot attempt to bring you back to sinus rhythm via anti-arrhythmic pills (chemical cardioversion). A great many GP's have inferior knowledge of AF.

You only talk about a cardiologist. How long will it then take to see an electrophysiologist?

After the EP, how long will you have to wait for an ablation , should that route be taken?

My experience in western Canada was that my "referred" cardiologist whom I concluded had minimal knowledge of AF wasted five months of my precious time and took me to the 5 months persistent stage. I booked myself into Bordeaux to have the ablation at the six months stage (the waiting period was one month for Bordeaux). The result was that I have had to have three ablations so far, and I was one of the worst cases at six months persistent that my excellent Bordeaux EP had ever had. Thankfully, I am now five months sinus rhythm after the third ablation.

Had I not had to endure the horrendous waiting time, I probably could have had only one ablation without the total burning of my heart with three ablations. Waiting time in persistent is a killer.

I sincerely hope you do not follow my waiting time period.

[Valbun]

Many thanks for all of this information and for sharing your experience.

I’m glad to say that I will have the Echocardiogram done in the next week or so (private). I have my appointment with the cardiologist after that. Now that I have so much information I will be able to ask the right questions. I don’t intend allowing this to be left untreated. 🙂👍

As an aside, I also spoke to my local member of parliament and to the practice manager in my health centre about the waiting times and I am considering approaching the local press - but first things first!

Many thanks again.