what’s normal?

[Ticker26]

Hi, I’m hoping some of you will please share your experiences regarding hospital follow ups after a diagnosis of heart failure .

I was diagnosed in October 2021 (LVEF 38%) and my medications increased to Ramipril, Carvedilol and Spironolactone. I was also prescribed Atorvastatin 8 months later. 

My heart failure nurse at the hospital informed me in March 2022 that I was being discharged from their care and that if I had any further issues to contact my GP. ( At the time I was awaiting an appointment for a CT angiogram which I later had in August - it showed 40% stenosis)

I have never received any offer of cardiac rehab, counselling or even a follow up echocardiogram to check if the prescribed medications are doing their job.

Is this normal? I live in Scotland by the way though I don’t know if things are done any differently up here. I just feel that I should at least be monitored yearly not just left to try and contact my GP if I feel worse.

 Thanks for reading

[Norton]

Hi Ticker26

I live in Scotland too, I don’t have heart failure, I had HA and stents in November.

My care was transferred to my Gp and the cardiology rehab team as soon as I was discharged from hospital with no cardiologist follow up. This was explained to me at the time this was their process (for me). Cardio rehab for 8 weeks then care by Gp going forward with an annual check unless any problems.

I have to say the cardiac rehab team of specialist nurses and physiotherapists are fantastic.

My Gp is also very good and I see the practice nurse regularly at the moment as my meds are being increased gradually to the optimum dosage as blood pressure is low.

In Scotland everyone is entitled to an annual cardiac screening with their Gp practice over a certain age without any known family history or diagnoses.

To start with I would be making an appointment to see Gp who will hopefully get you checked out and discuss your concerns.

Good luck

[Catlady56]

I live in rural Wales and heart clinic is in a hospital 25 miles away. Diagnosed with heart failure 2020 following a massive pulmonary embolism. Was inpatient for six days and follow up echo was another six month wait. Afib was found. One cardioversion done - eventually - which lasted three days. I was offered ablation but that would be another wait and no guarantee of success as Afib well established by then, so I didn't go ahead any further with that. I had no idea I had Afib until it was picked up on ECG tests. Saw Consultant once in heart clinic prior to a TOE procedure and then it was a cardiac nurse who saw me six monthly. She said no point in me travelling all that way and she would discharge me - with heart failure. GP shows zero interest in any aftercare, apart from yearly medication review which is done by a care assistant. As far as I'm concerned I'm not being monitored by anyone.

[Lezzers]

It's not unusual to not have any further echos etc unless you have worsening symptoms. My husband has had HF since 2012 and has only ever had 4 echos in that time. I asked his cardiologist why he didn't have regular echos & was told there is no point as it wouldn't change how they treated him.

You should have been offered cardiac rehab though, I would contact your GP and ask why you haven't been offered it.

[Ticker26]

Thank you all for your replies. I’ll try to get an appointment with my GP to discuss assessments and rehab. I’m thinking about paying privately for an echo just for peace of mind, I would rather know if there has been any deterioration in heart function before it becomes a major issue.

Thanks again

[Tidy69]

I empathise. Very similar diagnosis . I'm still under community cardiac team who are wonderfully supportive and really excellent in every way, but my gp practice are pretty useless and dot-joining doesn't seem to be part of their expertise. I take ramipril, atorvastatin and eplerenone. The Eplerenone and ramipril cause no issues at all. Every single beta blocker has been a real issue for me, several tried. So currently taking none at my request. Recently diagnosed as pre-diabetic and awaiting answers as to whether the increase in statins from 20 to 80mg is a contributory factor in this. I am also worried that when the support from the excellent community cardiac team is over then everything will just fall through the cracks with the rapidly collapsing GP system we are all experiencing.

[Thismorning]

Hi I was diagnosed with Takotsubo in 2019 .I tried Ramipril(, awful cough)then Bisoprolol then Carvedilol which suited me ! Only v low dose as a preventative for another event .I had rehab and regularly seen by Cardiologist until MRI showed no problems .Signed off by him last September . They should be keeping an eye on you until proof from procedures show no lasting cardiomyopathy!In my humble opinion 😊

[Honeybee1961]

Hi Ticker26,

I was diagnosed with heart failure following a heart attack a couple of years ago. My EF is currently 40%, and I was referred to the HF comunity nurse team after discharge from hospital. It seems that referral to the HF team is routine here (in live in England), but I’m not sure that every area has a community HF team.

The main purpose of the HF team is to monitor and titrate HF medication, which as I have discovered is important as the dose we are put on when leaving hospital is not necessarily the optimum dose to protect against HF progressing. The HF team also provides a point of contact to get advice about any progression of HF symptoms; answer questions or to refer back to cardiology if necessary (although this can be difficult for them to achieve, their access to cardiology is not as straightforward as would be ideal) .

I have discovered that GPs are not well placed to give much in the way of advice about heart failure. The drugs for heart failure are so complex that it needs a specialist, but with a shortage of cardiologists this sadly does not seem to happen routinely in the U.K. The specialist heart failure nurse teams seem to fill this gap to some extent. NICE guidelines suggest that people who have HF should be seen at least every six months, although even with the HF nurses this doesn’t happen due to staff shortages. They can check medications (titration, side effects) , BP, bloods (e.g. some HF drugs can affect kidney function and potassium levels, this needs to be monitored). They sometimes do an ECG, check for any oedema all of that sort of thing.

My experience is that I have needed to be proactive about all of this, research and inform myself, discover which questions I need to ask, and don’t assume that anyone else will do it for me, for example I discovered for myself the possible benefits of taking Dapagliflozin and could then pursue getting this prescribed. I hope this helps.

[Wondrous_Walker]

I’m so sorry to hear this but I don’t think it’s unusual. Every test etc that I have had done since the removal of a tumour from my heart three years ago I’ve had to work for! Also, I’ve never been put on any kind of programme of follow up care. I’ve always found speaking to a BHF nurse more helpful than anything else. Do you have any patient care organisations you can get in touch with where you live? I would’ve thought at least you should have someone checking on your medications and how they may work or not with each other.

[Ticker26]

Thanks again to all who have replied. I have discovered that there is a cardio rehab service but for some reason I was never given any information on it or referred by the heart failure nurse. My GP has never mentioned it either. I have contacted them directly and they are going to liaise with the hospital and get back to me. From what I can see getting Dapagliflozin depends on how low your LVEF is but as it isn’t being monitored how would I know? Apparently I will have to be proactive as the NHS does not appear to be working!