Im sure someone here will be able to advise me on this NHS mess.
At the beginning of October while on holiday I began to experience an irregular heartbeat with a high pulse rate and the day I returned I contacted My GP by telephone described my symptoms and was given the options of A&E or an appointment with him next day. Of course I now know I should have gone straight to A&E but in October I had never heard of AF and at 67 apart from a bout several years ago with Prostate cancer I am fit and healthy . Next day following an ECG at the surgery I was advised to go to A&E and take an overnight bag as I had AF.
At A&E I was again diagnosed with AF and a pulse rate of 160ish and admitted under the care of a rheumatologist specialist.I'm sure someone reading this now has an idea of where this long post is going.This very nice gentleman arranged for blood tests .blood thinners followed by warfarin ,beta blockers etc and tried to arrange a quick echocardiogram .He did everything quickly ,efficiently and kindly .No problems so far .blood tests showed a slightly hyper active thyroid a possible cause of AF so he arranged an appointment with an endocrinologist who prescribed a relatively high dosage carbimazole . After a few days I was discharged heart rate undercontrol although still irregular and advised by the warfarin Pharmacist to contact my GP. Appointment made for local warfarin clinic etc
An appointment for echo cardio soon arrived around five weeks after discharge but when I had this I was informed in a rather puzzled way that the results were being sent back to the rheumatology department not the cardiac department and perhaps I should discuss this with my GP. Seven weeks in now .I had started to gain weight rapidly so arranged for a thyroid test to find I was now hypo .No test had been arranged by anyone and I was becoming concerned that communication between hospital and GP had broken down .So I asked GP about Cardiac Consultant and he confirmed he would enquire .A few days later in the warfarin clinic the pharmacologist asked about the cardiac appointment when I said nothing yet she checked my records and said nothing on file and suggested I contact my GP again. Which I duly did this morning He informed me that he had spoken to the rheumatologist's secretary and she had advised him to contact cardiac department as it would be quicker and he refused saying she should have done it .He further suggested I contact her in a few days to make sure she has as the ball is now in her court. Now I accept these things happen but my concern is if I contact the hospital and they refer me back to the GP I need to know how to get someone to accept the responsibility for getting me a cardiac appointment and my question after all this history is who do I complain to if they continue to play handball with my health
sorry for the long post
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Westietam
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I think they might take notice if you advise the GP surgery that unless they arrange this referral straight away you will contact the chair of your local CCG (clinical commissioning group) to raise the matter of the lack of a proper AF pathway.
You could also contact the cardiology dept as, because you have been an inpatient they can organise your appt- this is probably what the GP is talking about but he should have been more helpful! If cardiology refuse (unlikely) advise them you will be contacting the CEO of the hospital trust and, if you need to, ask the CEO's secretary for the relevant e mail address to write and explain position and demand appointment.
I have had exactly these scenarios over the last few months and it is very hard work getting everything organised but have now been asked to be patient input by chair of our CCG who has agreed to set up proper AF pathway for care. It is worth the effort so we can help things to improve for future patients.
I eventually had an appointment with an EP ( electrical as opposed to plumbing , of heart!!) yesterday at the Brompton and made sure I had collected all my test results to take with me as it's no good relying on the GPs to do this at present.
Let me know if there are any other issues and also which hospital and CCG area you are in if any help needed!!
It would be wise to go to the hospital and walk into rheumatology and sort it out. Make a fuss. Its your right. I had to do something like this and i walked into cardiology and worked it out. my gp told me to in fact.
Tricky situation. Gps won't do it for you. They do a lot but once referred its up to you a lot of the time
My goodness what a mess. Terrifying really. So where to go from here. I would see my GP straight away asking for an immediate appointment. He or she then needs to get you an urgent appointment with an Electro Physiologist rather than a cardiologist. EP's are heart specialists who take care of the electrical aspects of the heart which is where AF originates, rather than a straightforward cardiologist who specialises in the plumbing aspect of the heart.
Are you in a large town where there is access to EP's, if not you need referring to a hospital with this specialism.
This is your health, no one else's and being more demanding is clearly going to have to be your priority. Have a look at your local hospitals website and find out who the cardiologists and EP's are if you can so your GP can see you know what and who you are talking about, that usually gets their attention. Please do not be fobbed off.
If your GP takes this seriously and gets a move on on your behalf but you find yourself waiting a long time for a hospital appointment thereafter, then I would consider complaining to the Chief Executive at hospital where you have hitherto been treated.
It all sounds a shambles to date and enough is enough. Its about time some heads were knocked together.
Good luck and please do not take all this lying down.
GP`s and hospitals! All I can say is "Huh!". My G.P. referred me to a cardiologist at our local hospital in June, and I saw him at the beginning of August. I then had a heart scan and a heart monitor at the end of August. Since then nothing. No results from the scan and heart monitor despite my surgery contacting the cardiology department. I was told I would have another appointment to see the cardiologist in December. Guess what? No appointment received. I phoned them to enquire if an appointment had been sent out ( and maybe got lost in the post!) and was told it would be at least late January or most probably February before I could be seen! When I asked why this was I was simply told that they are 2 months behind with their appointments schedule. Thankfully in the past 4 months I have only had minor heart "blips", and in the main been really well, but I would appreciate knowing the results of the scan and monitor, and having the opportunity to discuss certain concerns. Now my case has been referred to the cardiologist my G.P feels unable to comment on it.
I just wish they had told me at the outset my next appointment woud be in 6 months. It really is no small wonder people have lost faith in the NHS.
It really is an uphill struggle isn't it? I can't believe how many of us on this site have had the same dreadful experiences. Keep grinding away at them. Good luck.
Not good is it!!! Fight your corner, it's the only way you'll get the attention you deserve. Some good advice from members above who have probably experienced similar to the way you have been treated. Don't let the NHS get away with it, keep calling them asking what the situation is now and what's going to happen next! Take a tip from me and be absolutely charming to whoever you talk to, get them on your side. If you get another bout of AF with a fast pulse I'm sure you will go straight to A&E. Hope you get sorted ASAP.
I am afraid, we as patients have a lot of sorting out to do, as mentioned in an earlier post, each specialists has their own area and never the twain shall meet. The efficient and kindly Rheumatologist could be the answer as was suggested. I have never heard of a pathway for AF but I am classed as a private patient, under DVA, but there is still no guarantee that this will bring efficiency and kindness, It appears you need to be more efficient and more kindly to deal with such a large system. We are supposed to try to keep calm, as an AF patient, maybe a new term could be adopted (AF and FF) frustating and frightening. Take a deep breath and front up to anyone who is willing to help you sort this out. Good luck
Don't know if this will help, or just muddy the waters, but there is an AF pathway devised/authored by Dr Nick Newall, based in Wirral University Teaching Hospital (WUTH). This document can be accessed via the link below.
Thanks mallet-head and no it didn't muddy the waters, it was very helpful. I will be seeing my cardiologist next Tuesday, and will be asking for another opinion (decided a few months ago), the last episode reverted itself but I was told consent had been obtained for some sort of electrical method? I will be discussing my consent being as important as what the Emergency docs think. They would most likely have some forms placed on file with notes similar to the forms etc. The only difference I can see at the moment would be "referral to an AF Clinic" (there is no AF Clinic here) this could be because I am in a regional area? So thanks it was invaluable information for me.
Its at times like these that I despair at the Clinicians and the institutionalised people in the NHS. Personally I would go to my GP and ask him/her to make that appointment whilst I was there. Failing that turn up at the cardiac clinic and confront them full on. Its disgraceful that you should be put in this position, in my mind - your GP should be making sure your treatment remains focused as well as the hospital. Where communications breakdown, he/she should reconnect it for you.
Having had Afib and also had an ablation early this year I’ve been through the system and I would say you’re wasting your time by complaining, especially written or email communication, no one gives a damn, but by all means draw attention to your concerns to the appropriate persons if at all possible, the HNS is a disjointed beast and varies in different parts of the country and also different hospitals, medical staff incline to watch each other’s back, I don’t think I’m being negative on this but realistic… I wish you good luck
In short, my GP gives me AF. I could happily throttle them (not literally, I think!). It's like Fawlty Towers.
If you can, get your EP appointment and from then on make contact with the EP's secretary. Mine is fantastic and knowledgable and it cuts out all the mess (good description). I managed to bypass my GP for years doing this. Just done it again after trying, unsuccessfully, to make a GP appointment.
You have to phone my GP at 08:30 unless you want to wait a week or more for an appointment, but I'm round my farm at that time looking after animals that need feeding and watering, and the mobile doesn't work. I've phoned at 09:30 after getting back from the fields, and been told no good, must phone back tomorrow at 08:30. I have an irregular heart beat I said and I have had to stop taking the drugs to control it I said. Sorry, you must phone back tomorrow at 08:30. Not 09:30 I asked, no, it must be 08:30 !!!
When I went to A/E for the first time I was admitted under the intaking med reg, who happened to be the rheumatology team. I had the same problems as everyone else trying to see a cardiologist despite phone calls and letters by my GP. @in the end it was suggested that I used my health insurance and saw a cardiologist, then the next time I went to A/E I could say I was under the cardiologists and that way I was at least under the right team and life went on from there.
first of all ,thanks to everyone above, your advice is invaluable but so is your support ,this illness can make you feel quite vulnerable and just being able to communicate with fellow sufferers lifts some of that burden.The sheer volume of information available here is reassuring ,when I was diagnosed I had a brief explanation of what AF was but I wasn't really able to concentrate since my heart felt as though t was flopping around in my chest .Simple things worried me such as why was it worse when I lay on my left side and reading here explained it was just that I was more conscious of it .Its the little bits of information that helped me to fully understand what had happened to me and what to expect. I had questions about exercise (immediately prior to the advent of AF I had been weight training four or five times a week ) and a variety of other day to day living problems etc .all answered here .
Since I wrote the question on Wednesday I received an appointment with the endocrinology department for next week , hopefully another way I can ask to be referred to a cardiologist and I have made another appointment with my GP who I will approach with names of cardiologists etc.I have Obtained the number of the Rheumatoligist,s secretary who I will approach cautiously and cap in hand on Tuesday ,its pointless antagonising anyone before I absolutely need to . If I get nowhere on Tuesday I will write to the rheumatologist directly and ask for his help and also to the cardiology department outlining the problem followed by letter to the practice manager enclosing all correspondence to date but of course taking care at this stage not to blame anyone for anything but ltting them know I'm not going away .I live in Scotland and the local hospital is not that big so I haven't yet found out about EP thats next on my list .
once again Thank You you have made me feel so much better
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