I'm in heart failure due to dilated cardiomyopathy and a left branch bundle block with an EF of 31. I now have a cardiac resynchronisation device implanted. I understand that the device performance will be reviewed every six months - two months away nowHowever, I'm coughing again, breathless on exertion, right chest and so tired. I used to attend a Community Heart Failure Service but this evaporated after the service went out to tender. My care was transferred to the Hospital Heart Failure Nurse Team but stopped after the device was inserted.
My question is who is meant to be looking after me? GP says not them and he wrote to cardiologist for advice. The new Heart Failure Service is now finally up and running. So do I ring up the cardiologist's Secretary for a telephone appointment or write to GP asking what he has heard? Loathe to take up scarce appointment time. Or simply ask GP to 're refer me to CHFS?
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Okapis
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Dear Okapis
We welcome your first post and hope that there is help for you on here because I personally think that you have had a rough time of it.
You seem to be another victim of the " Your not our Problem " brigade, which when you read a lot of posts on here, we have all been apart of it one way or other.
I don't know if its the way the 'new' system now works or what, but what I do know is that finding out who is to answer and be responsible for our health needs is becoming a mine field.
First this ' Loathe to take up scarce appointment time ' attitude must stop and you must fight your corner and get these answers to what seems to be very basic questions about your health and the way it is impacting on your daily life.
Have no doubt that your GP is overall responsible for your health care , that is why you are reg with them and certainly they should be helping you get those answers from hard to reach heart professionals, if not change if possible.
Take care and please keep us informed of your progress, you are not alone
Not my first post in fact. Posted asking about Dapagliflozin a while back. GP unfamiliar with the drug and refused to prescribe despite the cardiologist giving me my first 4 weeks. I came to the conclusion that at least two of the doctors have not kept up with their continuing education!
Sorry could not see any other posts in you Bio, strange attitude of your Dr after your hospital began treating you with Dapagliflozin, you certainly need to try and get back on it as its now one of the pillars of recovery.
Thank you for your kind words { believe me there are others that don't like the way I reply to posts }
But I look at it this way, if you can help anyone, in any way by replying to their posts, then that is a good day, they certainly helped me when I needed them.
Phone up Cardiologist’s Secretary explain the situation , ask for an appointment with the HF service team AND an appointment with your Cardiologist. Phone up and EMAIL your GP for an urgent appointment with the HF service team , ( email as then you have written proof that you have contacted your GP
You state you loathe to ask for appointments , well you clearly do want appointments otherwise you wouldn’t be posting and asking people! Lol! And that’s okay ! I realise sometimes A FEW people can be judgemental and criticise others for using the NHS services in this genre . Ignore them ! They’re just trolling !
Time to be big, bold and old again! I live in a rural area with a practice with a dispensing pharmacy. Alas there are no alternative practices. The practice has really struggled in the last 3 years for all sorts of reasons. The doctors have apologised to me more than once for poor treatment hence the reluctance to contact them. Think I'm getting worn down but time to gird my loins and enter the fray again! So email letter to GP's secretary, enquire on cardiologists advice and ask to be referred back to the CHFS.
I know exactly how you feel,I have been through very similar event dilated Cardiomyopathy left ventricle with an EF of 17 and a pump inserted BPM never went under 150 for 10 or so days and as the heart ward gad done all they could at the time which i cannot fault as the where amazing transferred me to the transplant ward in the Golden jubilee in Glasgow where i spent a few months and gradually got better under care of the best cardiology dept around !I am sorry for going on there ,to the topic of care you where talking about I take all the usual meds that i have to take for the rest of my life as i know this and had a hard time accepting what had happened but as i say i am here to be writing this just now .Anyhow when i said i know how you feel i have been getting checked with all the scans etc for a cpl years but recently one of my cardiologists took me off one of my tablets amiodarone and i had to find out of a pharmacist who called me to say .
After i found this out I was so scared as I did not have good previous experiences with tablet changing and it took a while to get the correct combination as i am sure you are aware and when i tried to get help i found that i could not even get through to my cardiologist secretary as the gp secretary thought that she was in a professional position to tell me,now I am not having a go at all surgeries ,only mine because i tried to call again and got the same person !I had to go to see cardiology dept to find out which as the same as youreself i also did not want to bother them but i was so worried at the time ,so what are we supposed to do when this happens as there are a few strange coincidences happening that i am reading that one being various checkups getting forgot about etc and i hope that maybe it will get better as the whole system apart from my gp surgery sorry but that is another story ,that all are brilliant and i just want the same !some answers !is it appointment amounts being too high or what ?thanks ans sorry about the long reply and warm regards to everone getting treated fot this and the wonderful doctors and nurses who are the best.
I have nothing but praise for the local hospital cardiology team. They even brought my device insertion forward a week so I could safely go on holiday!
I got my transplant in the jubilee I couldn't agree with you more, everyone was brilliant and the treatment I receive is second to none, I am so glad to be under their care, char
🤣you are right there, Johnny dalziel, is my consultant, and jane my other one still on the J theme, and I have spoke to John Sharp the psychologist,he stays not far from me, maybe it's a pre requisite to get the job, my transplant nurse is Julie what can I say 😃 I hope you are doing ok , char
Hi again char ,yeah I know johnny Dalziel he is not only a great cardiologist, he is also a genuinely good guy 😊 but thay are all great my other cardiologist is John Goode and he is also a great guy ,when I was in the jubilee or hairmyers cardiology dept where I was for a while before they moved me I can remember repeating that to everyone in the NHS that I thought they where great to the point I had to say to everyone that I was not trying to butter then up as I was telling the truth😀anyway thank you for the reply amd stay safe and take it easy .
Hi Char Just a quick update if you where wondering as u surely am where I got one of my cardiologist's name from as it was the fabulous Dr John Payne! I can only think that the Dr I mentioned id s doctor in another hospital as I have made this mistake before!
I think this is one that I get mixed up becase they both are kind of ironic because they both sound like names that could be related to their jobs somehow ?
Also Julie,if I can remember is another consultant with a very warm personality who is also a great credit to the cardiology department .
Is this the Consultant with the strong accent 😀 if it is indeed when my mum visited me,the two of them had a right good blethter about how we have relatives that stay close to the town Julie was from and how my mum had visited a few times in the past ,so you can imagine 👍.one more the time I spent talking to the DR whom stays close to you was great and very helpful as I was and still do find it hard to accept what I was being told about my whole life changing series of events and medication for life as also you will know .anyhow i was a bit nervous meeting him as I think I had heard he was very good at his job also I had spoke to a few professional consultants like him and remember trying to suss him out and he doesnt give much away hence why he is very good as he has probably done this with you after 2 minutes😂 .so thank you char again and just tio know this has taken ?how long to type as I hace sausage fingers and my delete key is near enough broke ha ha sorrry for the deliberate unintended noticable typos! 😇😊
Morning I have met John Payne as well not the best of names for a doctor 🤣prof Gardner and prof Petrie are another two I met when I was on a clinical trial for heart failure I was a bit nervous because they were professor's but I didn't have to be they are so nice and put me at ease right away, it is very difficult to accept it when diagnosed I had no idea what cardiomyopathy was and I was so glad for the help I received at the jubilee by the whole team, I only go every 6 month's now I kind of miss them, my appointment is on Tuesday MRI and clinic it will be nice to chat to them about any worries. Take care char
I had a similar experience: upgraded from pacemaker to CRT-P then follow ups at the hospital heart clinic while they sorted the meds out. Similarly ongoing care was contracted out to another provider by the heart clinic - I've only been once as they cancelled my last appointment due to snow and phoned instead. My GP is aware as they get copies of any results and list any appointments online. I believed that it was the hospital that organised it all, but don't know if it's funded by the GP after that.Good luck.
Thought I'd join in this conversation with my experience since being diagnosed with heart failure after serious and nearly fatal brush with sepsis in 2018. After a few months of medication and visits from excellent heart failure nurse I was signed off by the cardiologist as having made a good recovery and no longer needing to take specific medications. (My kidneys also the worse for the sepsis ).
All good but in early 2022 I felt I should be reviewed and had an appointment with a different cardiologist who was pretty cross it seemed with ME for the lack of follow up!! Why was I not taking the meds? He did not appear to have the letter signing me off and treated me as a difficult refusenik putting me back on the meds (hydralazine and nitrates) and saying he would put me back under the heart failure nurses. I was pleased with the latter but nothing happened . I saw him again last autumn, when he was marginally less abrupt, and he said he would chase up the heart failure nurses.
This was finally successful and I started seeing them again in December for which I am v grateful as my hf now rather worse. They have RECOMMENDED dapaglifozin very emphatically.
Just wanted to report that and empathise with you about the way continuing care seems to have fallen apart.
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