AF Association
14,268 members17,254 posts

Dismayed

After waiting twelve months to see an EP regarding my AF which I have had for twenty years I told him I came off Sotalol 320mg a day because it made me feel so unwell with my GP guidance of course. He thought not having any medication at all for control was not a good thing because I will go into permanent AF. So he decided to put me on Nebivolol to try saying that if this didn’t work then no other beta blocker would, so I agreed to try it. This was six weeks ago and I had not heard a word from my GP regarding prescribing this drug. I rang him last week and he said he has not as yet heard from my EP. So I rand EP secretary and she apologised as she has been on holiday and the letter as yet has not been sent to my GP. But she promised she would send it off that day. That was 10 days ago and my GP has received nothing. So what can I do about it. Has anyone any idea where I can complain to?

Seems no one could care a less whether I have this medication at all.☹️

22 Replies
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You can complain to PALS at the hospital they will look into things for you. I found them quick in their response and resolved issues for me speedily. Dont wait any longer. You can find the PALS office by calling your local hospital and ask to be put through to them. Good luck.

Persistence is the order of the day, document everything you want to say preferably with dates to back it up.

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Thank you very much for your information I will ring them tomorrow.😁

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Hello Junoesque :-) I have had problems with communication between the arrhythmia nurse ( I don't get to see anyone as grand as an EP ) and my GP.

I don't know why your GP can't ring the EP's secretary. I would telephone the EP's secretary and request an email be sent to your GP about the new medication ASAP also ring your GP and tell them what you have done.

That is what I did after waiting 6 weeks for results that should have taken 2 and on which my medication depended.

It your body and your health that will suffer if you don't get the medication you require, sometimes you have to be a forceful to get the help you need.

I take Nabivolol and have been pleased with the results :-) it appears to have lowered my blood pressure and is helping to keep my heart rate in check and I don't seem to get some of the side effects associated with beta blockers.

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Thank you doodle68. I will get onto them again.

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Hello Junoesque, clearly an unsatisfactory situation but you need to think about how happy you are with your EP and whether or not you are confident about his ability to help and treat you in the future. If you are happy with everything other than this breakdown in communication between the EP's office and your GP, I would think twice before escalating the problem because it might not help the relationship between you and your EP.

I know it shouldn't but sometimes these things happen unintentionally, so I would be inclined to go back to the secretary and ask if it would help if you popped over to her office to collect the correspondance and then deliver it yourself to your GP. I expect that she would be suitably embarrassed and would guarantee the documents are transferred immediately without any direct involvement from your goodself.

If that doesn't work, go for the jugular!!!!

Good luck and please let us know how you get on..........

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Like your style Flapjack. Reminded me of when I had a copy letter from my EP to local hospital asking for 48 hour Holter and after three weeks nothing happened. Took a copy of my copy along and presented it to the reception and asked for a receipt on a form I made up. Within two hours I had a phone call appointment for the following Monday. One has to work the system.

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Yes I am going to pursue it further next week. I am managing my bouts of AF every day now . Since coming off the Sotalol it is much calmer. But I don’t like the idea of it becoming permanent.

The EP I saw is new to me and I liked him. So I won’t make too much fuss. It is good to know that it happens to others too.

Where I lived before I moved to Gloucester they would give me a prescription at the hospital and we would go to the dispensary. But different procedure here. Also I will not get a copy of the letter that they send to my GP. Which is not good. In fact everything seems remote. Thank you for your replies. It is a comfort to know I can at least have a say.

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Why will you not get a copy of the letter going to your GP? I understand that it is your right to have a copy.

I always ask for copies of all corespondence. This is particularly important if you are subsequently applying for things like a Blue Badge. Last year I asked for a copy of the letter which a local Orthopedic Surgeon was going to send to my GP. He wasn't happy but agreed. It was a good job that I saw it as it was total rubbish.

Several years ago an Arrhythmia Nurse sent a letter stating that I suffered from light headedness. This is totally untrue and could have jeopardise my driving licence. I think she muddled me up with someone else.

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I agree Jenny, in fact my EP copies me with all correspondence to my GP.

How else would I have found out I now have a junctional heart rhythm, most of what I hear at the consultation I forget due to my short term memory problems.

Pete

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Thank you jenny dog for your reply. I used to live in Basildon Essex that have the best cardiovascular unit in the country. I used to always get a copy of any letter sent to my GP. Which was good because whenever I was admitted to A&E I could show them the letters. But when I enquirer here in Gloucester hospital about a copy the answer was no, not automatically. I can I suppose demand one, if I received one is another thing. I noticed that my GP had little information on my AF and treatment received. So he took copies off me. Not very happy about all this. But what can one do?

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I think Gloucester Hopital need to get their act together. I will ring the EP secretary and ask for a copy.

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I live in Essex, the hospitals are worse here because we are outside London, I was there with a svt attack 2 weeks ago, it was chaos. Also I broke my ankle in August, that was when I realised how bad it was with no follow ups arranged and no communication with the patient

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Some good replies, but having worked in the NHS as a doctor, I feel the truth is that most staff are no longer interested in the patients, but only themselves, which results in the sort of problems you've had

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Yes goldie11. I think you are right. What can one do to get it all on track again?

So disheartened about it all. I think it is right across the board now.

What is happening in the world and the demands and pressures presented to workers must be the problem.

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I suspect it will never get any better and we have to try and get things right when we meet the health professionals. So you shouldhave sked for a prescription or note at the consultation. Diffivult to recover it now

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Junoesque, since I have been diognosed with persistent AF I have come to look at treatment as a war of attrition much like WW1. I’m part of the poor bloody infantry stuck in the trenches and the Docters are up in a chateau eating of some French aristocrats silver plate, and unless we bang hard on their door to remind them we still exists they forget it’s us not them who are actually fighting this war on the front line. Don’t be embarrassed or feel a nuisance to contact the consultant’s secretary, GP or cardiac nurse (I’ve been there too) but it’ their job to help look after you. Although in fairness to them they are much like the junior officers stuck in the trenches, they are often over worked and under stress. Finally complain, in all probability when you do the best you can hope for is an apology but it does rattle their cage. As to me I’m off to be shot at dawn. Good luck.

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Mickhall brilliant response!

I have complained to our local hospital about the very best mobility parking space, next to its front door, being permanently taken by a Citreon Berlingo. Their response was " It belongs to one of our receptionists. She has a Blue Badge. There's nothing we can do."

I am left believing that this hospital is run for the staff and not the patients.

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Wow! Thank you , you have just said what I feel.

How encouraging you all are. It is only you all on here that truly understand the nature of our suffering. Thank goodness you are all out there. If I had not come across this site I wouldn’t feel able to cope. But I have found you and I am now after all these years of isolation coping better.

I have now come to believe that why the doctors ignore us is because they do not know what to do. They just clam up when asked questions and try to dismiss you as quickly as possible.

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Try and make your Doctors/Cardiologist/ EP's secretary your new best friend. Deploy all your powers of charm and persuasion. Convince her that that the doctors are all 40% (pass mark) and she is probably the only one with brains in the entire department. Deep down she probably knows this to be true.

If you have to call in and see her you may find a small box of good quality chocolate or similar might be useful. However care is needed - she might be married to your doctor. Have fun.

Ian

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Will try that Ianc2 lol

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They are busy people. I once needed some advice and thought the best thing to do was to send an e-mail. It took him some several weeks to reply. So, the moral of this story is the personal touch I think. Keep politely calling his secretary.

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Yes I will do. Thank you for your reply.🙂

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