Heart Rate ok Rhythm Not.GP Referal rejected ?

[kkatz]

Heart Rate ok Rhythm not. Not.What should I expect NHS? Paroxysmal AF from 2017 to 31/1/2021.all changed ! Now persistent.GP referred me to Cardiology Feb & changed it to AFib.Referal came back 28/6 rejected.Gp trying to establish if original referral for HF or AFib that is rejected. His notes show his concern that the answer is rate is controlled and I am anticoagulated that they will not see me.I am so tired sometimes & get dizzy spells.Feel like my life is on hold and why bother doing anything.Sit and vegitate.I don't cry but did today.What should I expect.Never had any treatment but Adizem & edoxaban 2017.

[CDreamer]

Oh my goodness! That is not acceptable.

May I suggest that you call the AFA and ask for suggestions as to how to access specialist help.

[kkatz in reply to CDreamer]

Thanks Creamer.Always one of the first to help.Not sure I can afford to go private if that is what you meant.I will definitely contact them if GP gets no further.He believes I should be seen in AFib clinic but I believe our health authority only accepts patients with new AFib occurrence.

[CDreamer in reply to kkatz]

The AFA have been very helpful to many in progressing people’s access to treatment.

Just a suggestion to ring and ask to see what influence or advice they might offer.

[kkatz in reply to CDreamer]

Yes will ring them After the weekend.Sorry your name came out wrong.Autocorrection.

[kkatz in reply to CDreamer]

Hi Cdreamer bit of a dilemma.Do I phone AFA before or after my telephone conversation this Thurs or after.He is trying to chase this.Be more aware possibly after AFA conversation or preempting?

[CDreamer in reply to kkatz]

That’s what I would do, good luck.

[kkatz in reply to CDreamer]

Which one please.AFA or GP first?

[CDreamer in reply to kkatz]

AFA as they may give you help in what to ask your GP

[beach_bum in reply to kkatz]

Wow...eye opener for this uninformed Canuck. I had no idea the UK had a 2 tiered health care system. A pay for immediate care, and the rest go the public system? Is that for all levels and genres...or just specialties? Here in Canada they are toying with that idea, but to much push-back from the public. Fear that the haves will get better faster care, and the have-nots will languish as more and more specialists cross over to private profit driven models, is real.

[kkatz in reply to beach_bum]

Hi Beach bum.Not a 2 tier system as such.Probably just a matter of numbers and such high numbers.and overun by covid. I have had so much free treatment that in a pay for system it would have been hundreds of thousands.But isn't the world have & have nots.

[beach_bum in reply to kkatz]

Thanks for clarifying

[cuore in reply to beach_bum]

I am also a Canuck. I will disagree with you that there is "to much push-back from the public." It is the politicians for votes that are keeping the medical system only public. In B.C. the case to have private clinics is now in the appeals court.

We have inferior medical care , especially for AF, in Canada due to private access to medical care is banned. I reached persistent AF due to inferior treatment of the disease. As a result, I am now facing a fourth ablation where I will be going privately to France , again paying for it myself for the fourth time.

[beach_bum in reply to cuore]

Sorry for your woes. And clearly the issue is greatly varied from province to province.I was born and raised on Vancouver Island (Saanich) but left for employment in 1976, as did most of my family and friends, so I have no real contact back there to keep up with issues. I now live on the other coast, and personally I have nothing but praise for the state of medical care I have received here. Maybe it is because of the small population, who knows. We do have non-public walk in clinics designed to take the pressure off ER's. They deal with the daily issues we all suffer. Splinters, stings, sprains, colds, flu etc. And separate from that we have acupuncture, back specialists, massage therapists etc. Some require GP referrals, but most are walk in or cold call.

All heath care systems can use improvement, but in my case, and I can only speak for me and my family here, we are very satisfied.

Why France and not Washington State, Oregon, or California? I know the wealthy on the east coast just hop on a plane and are seen the next day at the Mayo clinic or John Hopkins. Money can buy a lot of immediate top of the line health care

😏

[cuore in reply to beach_bum]

My concentration was the forbidding of private clinics plus the attitude towards AF that, since it is non-live threatening, time is not important causing many to reach persistent AF.

We do have walk-in clinics although they are not walk-in anymore. They are call in whereby you get an appointment. For the other specialists you mentioned, we do pay for them. We do not pay for cancer surgery, broken bone surgery, etc. But, waiting time can cause the situation to become much worse. We have good teams for transplants and heart attacks. We don't pay for our GP visits, but there is a shortage for about 700,000 patients. Not all is bad, but the AF situation can be problematic. World class specialists do not make their home in Canada. Perhaps the reason is because they do not want politicians dictating their professional life.

I could not afford to go to the States. The ablation technique was pioneered in Pessac, France. I got top of the line treatment for around 16,500 euros for each of my ablations. I received better care there than any place in the States offering ablations.

[beach_bum in reply to cuore]

Sorry you had to shell out of pocket to see someone in another country. Like I said, I am spoiled here as our family have a top drawer home grown GP and specialists.

As far as politics go, from what I've read, it will only shorten ones life, so I tend to worry about more important things in my life. Tides, lobster season, are we getting enough rain for the crops, will the chain on my bike last another season, should I brush the dogs again this week. You know...important stuff.

🙂

[Ppiman]

NICE's recommendation seems to be that if you are older and with a normal resting heart rate, then your GP can treat the arrhythmia. However, if your symptoms are uncontrolled and unexplained, and are deemed to be heart related, then your GP surely must refer you to a cardiologist?

A private cardiology consultation would cost about £180.00 in the UK, plus the cost of an ECG (but your GP should be able to do that for free). That might be the way forwards if you could afford it? Have you had an ECG and an echo-cardiogram?

Steve

[kkatz in reply to Ppiman]

Steve,had both .I even paid for private echocardiogram in Feb at a cost of 426.Gp referred me to Cardiology before this & it was about 15 weeks for NHS echo.After private one showed no heart failure cardiologist sent letter to Gp saying should be AF not HF stream.Gp then referred to AFib in March.Whenever I chased they said waiting for NHS echo end of may & probably our Gp secretary got same when chasing.Then the rejection.I suspect the AFib referral got lost in the system .My GP has asked secretary to chase to clarify re AFib dart referral.Spoke to another GP as very very upset yesterday.He was not very helpful.He said I need to have patient & I got the impression that because I look at my records I am neurotic.I don't suppose receptionist putting on my notes that I was going to go to bed & end it all when what I said was I might as well put myself to bed and give up.

[Buffafly in reply to kkatz]

😂😂🤣 Sorry, but the last bit is very funny! I am not being unsympathetic, I know that feeling so well from when I had trapped nerves in my back and hip and couldn’t sleep, went on for months and eventually got an injection in the hip which had a magical effect.

You should have been put forward for an attempt at cardioversion I should have thought, as that would be magical if successful. Maybe there’s a reason why not?

Even if your rate is controlled it is not acceptable that you feel so tired and dizzy and I think you have every right to be ‘neurotic’ after all you have been through so I hope you get some effective help soon 💜

[Ppiman in reply to kkatz]

The moment they sniff an anxious personality, my experience is that the care they give will change for the worse.

Steve

[kkatz in reply to Ppiman]

Hope not.

[Desanthony]

That is appalling. Have you never seen a cardiologist or EP? Really if you have the money I would arrange a consultation with an EP privately. Mine cost £180 and was worth every penny. I was 73 when first diagnosed with persistent AF and initially saw specialist nurse at hospital after being diagnosed by GP and put on apixaban. Unfortunately my GP had already told me that our local hospital had not had a cardiologist for 14 months so when they got one I would have to wait a long time to see one so made an appointment to see a cardiologist privately. As it was when the local hospital finally got a cardiologist appointment with him was cancelled as hospital had outbreak of norovirus! Luckily I am with Benenden health care and they reimbursed me for consultation and tests up to £1500 so had every thing done in one day - went straight from consultation room to have echo and other tests all in one morning. Then cardio tried me on all sorts of different rate control drugs over about 4 months which made me feel worse so came off those all together. In the meantime I had moved house and had started going to a great rehabilitation phase 3 course held by the physiotherapy and specialist heart nurses at the new local hospital and they got me in to see the cardiologist there. Within 4 months I had had my first Cardioversion (CV) which was successful and lasted just short of a year. When I went back into AF after another CV I decided it was going to be better to have an ablation and asked to see an EP and again decided to pay to see one privately. He is part of the team at my local hospital but works from a larger University Hospital just a few miles further away but the whole rig marole of getting tests and things done and sent to him made me think If I pay like before he can get it all done at the same private hospital as before in one morning. As it was he didn't do that as the tests and MRI ultrasound etc I had already had done were sufficient. Since then I have had another successful CV which lasted until last May - so over a year - 15 months this time. and am waiting on another CV or an ablation so its a case of what comes first - ablation or a short course of amiodorone and then CV and then ablation later this year. Should have had first ablation April 2020 but Covid put paid to that. Another appointment in August/September 2020 but was away helping my sister move house after the death of her husband back in April 2020 and we hadn't been able to visit her. Then another appointment in October but Hospital and Cardio unit had outbreak of Covid so again that cancelled and now lots on the waiting list. I felt aggrieved at having to go private because of shortfalls in local NHS services initially but I see a lot of people worse off than me. I do hope you get a referral soon. Though with Covid the wait could be a long one.

[kkatz in reply to Desanthony]

Thank you Desanthony.No healthcare and can't really afford thousands.One of my problems is I need advice and what are my options.I can deal with anything if I know.When I had my stents I had lots of help & advice as to excercise etc.Also original AFib clinic referral was great.I have also had carotid endarterectomy & again great.I was physically fit before this and feel so lost.

[kkatz in reply to Desanthony]

Forgot to say hope you get your referral soon.

[Desanthony in reply to kkatz]

Oh it will happen eventually. I realise that there are possibly hundreds of people in my area waiting for an ablation now after the last year or so of Covid. As I said not everyone can afford a couple of hundred to get a first consultation with an EP and then get onto his NHS list which does help you jump the queue. I am so lucky that my wife having been a lifelong civil servant joined Benenden when it was the Post Office and Civil Service Society. For £13.00 a month we can get just that small amount for a consultation and £1500 towards tests and the society will also pay for smaller operations - not knee or hip replacements but we were lucky as my wife had fast growing cataracts (the grew in 6 months enough to stop her driving) noticed by her optician but ignored by her GP who should have referred her straight away so we went straight to Benenden and she had both cataracts sorted within 3 months. Remember, you can choose to be treated at another hospital by another EP or Cardiologist so get your GP to refer you somewhere else.

[kkatz in reply to Desanthony]

We are lucky to live in Leeds which is probably one of the best in the country so I will leave it with the GP to push.The silly thing is someday I feel a fraud.Yesterday I did a 40 min health program video and played a game of bowls on a big heavy green against some guy that decided the way to win was to corner me.Bowls was hard work and lots of puffing & panting but no forced to stop or dizzy spells after.

[Ducky2003 in reply to kkatz]

I would have thought that a city the size of Leeds would have a large cardiology team but you are entitled to be seen anywhere so you could get your GP to refer you to another area. Sorry you're having all this palaver to deal with.

[Desanthony in reply to kkatz]

Yes it gets you like that but you have to remember and inform your GP, cardiologist and EP of how you are on your worst days/nights not your best and how that affects you. My nights are dreadful in AF and obviously that does affect my days too feeling fatigued, falling asleep and feeling unable to function correctly and wondering whether I dare drive - even just to the shops in case I may nod off.

[Hindmarsh]

Yes, the AF A should be able to help. I was like you for 3 years - my urgent GP referral downgraded to routine. I had a spell in hospital after an emergency admital and still not offered any help. Then I found an EP and everything improved just with a change of medication.

[rosyG]

You have a right to choose where to be treated so ask your Gp to refer you elsewhere. aF association might suggest somewhere near you

[Hidden]

I was diagnosed getting on for four years ago and suffered from the one size fits all prescribing of the NHS as you have. The first anticoagulant I was prescribed gave me dreadful diarrhoea ( a common side effect!) so given another which comes with the constant fatigue that you too have - I changed from apixaban to Edoxaban hoping it might not be so bad but as you have found, it isn’t!!! And I am on the half dose as I only weigh a little over 60kg and at 77 am not far off 80, both of which indicate a lower dose should be prescribed- something a friend’s doctor hadn’t noticed and she nearly died from a problem when being given blood having lost so much through internal bleeding! I had to go to a private electrophysiologist to get prescribed flecainide but I just take it as a PIP as whenever I try taking it regularly, morning and evening it fails to stop episodes of AF which it is supposed to do! Perhaps some time the medical guys will realise we are all different and for many of us the anticoagulants give us intolerable fatigue!! Drug companies seem to rule and as we know we are all different! Good luck with your quest to get proper support and care! It’s difficult I know when one has so little energy for anything!

[whiteface]

I have permanent AF rate OK by arrhythmic -- so in principle like you, but seemingly very different as I life a completely normal life without any medication all on the advice of my caridotherapist.

So try to take stock and work out what is the (real) problem? How much is this mental (brought on by very valid worry and fear) and how much real. This question is much, much harder than people think. For a long while I was very worried but gradually worked out for myself what I could do and now worry has gone I don't get symptoms....

Also bear in mind your history -- how old are you; over the years how fit and healthy have you been, how well have you eaten? Etc. And then try to develop realistic expectations about what you can and can't do and what the medical profession can and can't do

I do hope this helps.

[kkatz in reply to whiteface]

Helps a lot thanks