AF Association


To all uk nhs users - please consider giving feedback. I was just saying to someone praising the service in wales to do this, assuming the information will be utilised to bring everyone up to the standard of the highest, perhaps by implementing the practices they might use.

I have submitted my own feedback with the encouragement of the patient experience team. I had held off for months because i was afraid my emotions might get in the way. I did alert my ep and to my amazement not only was he not against me raising my concerns but was very grateful, particularly as my main suggestion was to have a go-between - an arrhythmia nurse. Turns out he has been doing his damnedest for years to get these but is told they can't spare the wages for them, so patients suggesting the same is the thing that might tip this in everyone's favour. Even the strain on the person who was rude to me might be alleviated, to me it's a no-brainer. I also raised this forum (not by name) and how much it helps people - surely there is a wealth of feedback to be gained from its users?

So please - give some feedback - positive as well as negative - how will they raise standards where needed if they don't know more about the experience of the people who use this otherwise wonderful institution? I personally feel like a weight has been lifted from me, even without anything being done as yet, i feel better for getting it out of my system. Moaning to my loved ones and venting on here did not shift it.

Think of how frightened etc you have been yourself - would your feedback that if you'd had an arrhythmia nurse to go to have helped you help to put some in place in your part of the country and that that might help someone who comes after you - wouldn't that help just a little? The possibility of it has lightened me.

Just the process of writing and sending it has helped me, god knows i would not wish my experience on anyone else, and i had support, but still was almost over the edge, i can't believe now looking back at the state i was in. Please contribute and maybe make it better for someone else in the future.

I have asked to be told of if /how my suggestions/info might be implemented/used and i will report back once i know anything.

9 Replies

I agree, especially regarding arrhythmia nurses. But there again I was a patient representative on the BHF committee that introduced arrhythmia nurses all those years ago with such success. Budgetary restraints hit all services so don't expect miracles.

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well done bhf. surely it would save money elsewhere - maybe cut down some people's a and e visits etc, but yeah. i'm not expecting anything, but if it helped get anything it'd be a bonus. i don't think it's right that i was complaining about severe side effects from medications and no one helped me, my bp wasn't even taken, and it took me a lot of courage to mention suicidal feelings which were also a side effect, still nothing was done - a lot of my questions/anxieties could have been helped if i had a go to in those long months i waited to see the ep. Thankfully tragedy was avoided, but i dread to think what might have happened, one of the worst periods in my life, and not necessary - if only i'd had someone to talk to that would have listened and been able to answer some of my concerns. Thankfully i found this forum, it helped me so much - ok it wasn't as good as allaying concerns with my ep - but it was a worthy substitute in the meantime and part of my support and coping mechanisms. i even made a couple of friends who i am in contact with outside of the forum by email. Thanks to everyone on here who takes the time to reach out to someone else - it really matters. Cheers Bob.


Thank you stargazer for this very useful suggestion, worth taking up. Can I ask how you went about it in the first place, did you have to go through your GP patient participation group or is there an independent way of putting your views forward?


I used my old pal google! put in something like nhs complaints. There is a section within the nhs website about giving feedback/concerns/complaints. From that i decided to use the patient advisory service because i was concerned about looking like i was blaming and shaming and felt i needed objective advice. I emailed them, they phoned me, and encouraged me to do it because they felt all my points were valid and would be helpful, so i wrote it down and sent it to them, they called me back and we discussed what i wanted to happen, and they were great. i allowed them to pass it on and i believe it will go to both caardiac teams of the two different hospitals which dealt with me. i didn't name anyone but did give job titles. Naturally i was a bit concerned about having to possibly be dealt with by the same people in the future, but am content now that i came from the right place in reporting the truth - and i do think the nhs is great, i actually sent cards to the a and e staff and the nurses in the cardiac unit days after i was in. But would i want what happened to me to happen to anyone else? No. Hence the taking action. So glad i did it - hope i can encourage others to do it - they assured me it was welcome information. Thanks for replying!


I was very interested in your post, I live in Wales and am a Carer to my husband who is in permanent AF, he also suffers with Hypertrophic Cardiomyopathy and is on his 3rd ICD. He was one of the first in Wales to be given an ICD in 2003 but his condition is worsening, despite much medication which causes other health issues, fatigue and breathlessness.

The Welsh Government are soon to refresh their 2016 Heart Disease Delivery Plan. Last week, I sent comments on how this plan might be improved. One suggestion I made, was for Health Boards (HBs) to provide support to AF Patients/Carers via a Nurse in the community. These nurses already exist in some HBs for Heart Failure Patients which should indeed include AF Patients. There are times when the condition is so debilitating that we need reassurance, particularly if you live in a rural location. A telephone chat with a nurse who understands the condition would be so helpful and would save on urgent GP appointments or even perhaps, inappropriate A & E attendances.

I fully support your belief that the only way to influence policy is to reach the NHS policy makers and clinicians, who are instrumental in making change happen!


Yes, exactly, and the more people who do it the more chance we have of helping to create change, not just for us but for everyone. i also found that doing anything proactive, no matter how small, stopped me feeling so helpless, a toxic state in and of itself. Thanks for replying. All the best to you and your husband.

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I have experienced non empathetic attitude from one GP and discourtesy from another. It seems that they only see patients as objects with a medical condition and totally ignore the distress AF causes. So still looking for the right GP but mindful that my doing so could reflect badly on me.

One GP asked me what my fears were and then confirmed them and tried to advise me against having another ablation. As my episodes became too frequent I went privately.

Another said he would ring me the day an ECG was taken but didn't. I rang back two days later and gave a message that he did not need to ring me. The reason for this is that I wanted to save myself stress which the EP consultant told me to avoid.

Then on Friday he rang 6.33. p.m. but I was asleep and missed the call. He asked me to ring him on Monday. So over the weekend I found it difficult to get a good night's sleep. (I had an ablation on the 11th August and so was distressed with the onset of AF last Monday. I had many runs of fast beats but did not bother the GP practice.) I rang this Monday morning as asked by the GP and was told that the GP had a slot the following morning. Well I rang again and another receptionist told me that he could ring me this afternoon because he is on duty. I am still waiting.

The following is what I wrote last week in order to try and get on top of my disappointment and anger.

"It is thought by the trusting public that GP doctors are interested in healing the body or at least ameliorate, definitely not aggravate, a patient’s distressing disease or condition.

Unfortunately, it needs to be pointed out that some GP doctors need to be mindful not to deliberately or inadvertently perturb a patient’s mind and injure the soul.

Controlling manners or not being reliable with phone calls leaving a patient to wait in vain causes unnecessary distress and a breach of trust.

Worse still, letting prejudice get in the way of treating a patient with empathy and courtesy does do harm to the patient and doctor relationship which is vital in the healing process.

It is understood that doctors make a Hippocratic Oath to do no harm. Perhaps the above will provoke thought in certain respective GP doctors and hopefully they will want to achieve this goal."

Of course, I would like to send it but then I am only a helpless patient and need to avoid stress.

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On top of everything else, i found it incredibly difficult to even talk to anyone when i was on the medication, it's awful to feel so vulnerable and reach out then be ignored then forgotten. And anxiety breeds anxiety, it's a vicious circle hard to get out off. I waited months before i could actually write my concerns because i was so angry once i'd got past the teary stage. Give it a bit of time, but consider sending the feedback at a later stage - it might help someone else in the future. Hope things go a bit better for you very soon. Breathe!

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To be fair the new GP did ring me at 7.00 pm but has worried me that I may have Atrial Flutter even though I have already had an Atrial Flutter Ablation.


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