Heart Failure diagnoses but 6 month wait for the clinic!

[RubysHuman]

Hello Everyone any advice would be helpful.

I was diagnosed by the GP from a blood test in March. I was referred to the Heart Failure Diagnostic Clinic on the 17/04/23. Silly me thought that the NICE guidelines would be followed, should be seen in 6 weeks, but no - I was told by the hospital wating list that it was going to be 5-6 months!

I need an echocardiogram, the 24hr hoilter and although being part of these groups, looking at websites, I know that things aren't as bad as it seems to start with I can't stop worrying when I don't know what I'm dealing with. I'm sure you all understand that.

Not had any luck with the GP, who referred me to expedite the referral. He didn't refuse but said that he didn't think it would make any difference. He just keeps saying about seeing someone privately.

Having looked into this I think I'll have to pay. It'll be £200 for the initial consultation and the echo £320. I don't have this lying around but I can get it together very soon.

I also have AF which is getting worse with palpebrations, I originally had no symptoms but it seems now I'm in persistent AF, I'm not on a blood thinner at the moment but do take Bisoprolol 2.5mg and Felodipine 5mg.

Not sure if I'm just venting or really think one of you lovely people with come up with something magical to make it better so thanks for reading ☺️

[Cavalierrubie]

Sorry to hear of the problems you are experiencing and the long wait for your care. I am very surprised to hear that you have not been given an anticoagulant as this is a very important part of your treatment for AF. When l was first diagnosed 5 years ago l was immediately put on a blood thinner as with AF you are at risk of having a stroke. I would ask your GP regarding this as soon as you can. Also l don’t understand why your GP has not referred you as “urgent.” You really should be seen earlier. Hope it goes ok.

[Anon2023]

hi. Im very sorry for what you are going through. I had to wait a year before an echo prior to diagnosis of severe mitral valve regurgitation and the wait was awful. I would ask your GP (in writing if possible) what risks are associated by having to wait so long to be seen? If, at any point, your AF feels worse and your GP can’t/won’t see you then you should go to A&E. Its likely that as part of their investigations they would carry out an echo anyway. Every time I’ve been into A&E for something related to my heart they’ve done an echo and I’ve been put on a heart monitor overnight. I’m not encouraging anyone to try and jump the queue by going to A&E unnecessarily but when it comes to your heart it’s better to be safe than sorry. Let us know how you get on.

[devonian186]

You are only 55 and should be enjoying life. If £550 is the total bill with no extras I would go for it if your GP can not get you a more urgent appointment.

Unfortunately its those with sharp elbows that get seen quickly and your condition might mean you need to be higher up the queue but others not quite so worthy might have managed to get in front of you.

[Wilkie105]

HiI too have a 6 month wait before my first cardiology appt , having been found to have severe hardening of my arteries or Ischemic heart disease my GP informs me . I did post on here about my anxiety and considered 'going' private however having seen in this forum how many people live and enjoy life with heart disease did give me some sense of perspective and info , so I chatted to my GP who informed me I was on the best path of preventative meds, and stressing wasn't helping , you have to be blunt with your GP occasionally 🤔 and ask for reassure

Good luck 🍀

[RubysHuman]

Thank you for your advice, it's nice to know I'm not alone.

I should have said that there was a reason I wasn't on anticoagulants but I am able to take them now and I will talk to the GP on Tuesday about them.

The GP had sent the referral as urgent on the clinics paperwork. It even say's on there "6 weeks". The waiting list said that all referrals are triaged by a consultant so they must think I'm as not urgent as others!

Last weekend I went to A&E as my AF was bad but unfortunately they didn't do an echo but did say I'm in persistent AF and I needed the 24hr hoilter. The doctor has written this on the discharge papers so again I'll talk to the GP about this.

I'll update you as to how I get on.

Again thanks for replying ☺️

[Coopergirl52]

I've also had a long wait for an Echocardiogram as had a blood test last November saying I have possible heart failure finally got the appointment through having it done next Saturday feeling more anxious the nearer it gets.

[RubysHuman in reply to Coopergirl52]

So glad you're getting seen. I understand the anxiety and I'm sure I'll be exactly the same when I have mine x

[gladliz]

Hello. Do you know if the blood test you had regarding your heart failure had a name or number ie. A Smiths test or AP579? I was contacted the other day by my local surgery for a blood test ,I asked what it was for, receptionist didn't appear to know. I asked the nurse taking the blood about it but she was a bit vague along the lines of ' I just take the samples'. She did mention a number which began NT I think. I was wondering if this was to do with heart failure as I had mentioned it at one of my many (at the moment) clinic appts.

[RubysHuman in reply to gladliz]

Hi it was the NT-proBNP blood test

[gladliz in reply to RubysHuman]

Thanks. It sounds as if that could be the one the nurse said. Will now await results.

[taliesin1411]

Probably BNP test. bhf.org.uk/what-we-do/news-....

[bushy2016]

if your having af at 140 bpm go to a+e and you will be seen sooner

[Hardyspecimen]

I’m sorry you are having to wait so long. I would echo the advice already given: go private, (unfortunately), if you go to a and e again ask about an echocardiogram and while you’re waiting have a look at the British Heart Foundation website which is full of reassuring advice. Good luck!

[Semley]

am a fellow sufferer with AF and HF for some 10 years now. Judging by your later comments you've done everything that has been advised, including presenting at A&E which is what I would have said. The only other thing I can suggest is to pester the appointments line and/or the consultant's secretary and/or the Cardiology Dept/Specialist nurses (always very helpful). It may be that either the Echo and/or the Holter might be arranged sooner if you say you will take a cancellation. This strategy has worked for me in the past, but you have to be persistent and be prepared to go on the merry-go-round of telephone extensions and ansaphones. Keep trying! I've also found that if you do go private, some consultants will be understanding (they usually work in the NHS too) and try to get some of the work done on the NHS for you so lay it on thick! After all why should we pay twice in effect?! Good luck!

[RubysHuman in reply to Semley]

Thank you for those practical idea's, I'll give it a go and see where I get 👍

[alpha666]

Hi i was in a similar situation as yourself short of breath, feeling rough, so i visited my gp who told me to up my blood pressure meds any how this made me feel worse so he referred me to see a cardiololgist at the local hospital, if you look on the internet you can see different waiting times at various hospitals, my local was one of the best at 25 weeks.

I thought i cant wait 6 months so i decided to go private at a local Spire private hospital, i read all the reviews on the cardiologists available and picked one, i made contact and had a consultation in 2 days which cost £200 and i had a 24 hr ECG and an Echocardiogram, the consultant changed my meds straight away,and long story i am now feeling much better, still have AF though, After another couple of consultations the bill came to about £550 but for me money well spent.

Just overunning the story the last time i was at my GP surgery i had to give blood and the nurse said the best thing to do is get a consultation in private and then asked to be referred by the consultant back to the NHS , this is what i did, it cuts down the waiting time by a lot, well it did for me anyway. I know its not really the right thing to do but if you are not getting anywhere and you are in for a long wait you have to do something, hope this helps, and like others have said you need an anti coagulant like Apixaban if you have AF.

[alpha666]

If i can be any further help just drop me a message, sometimes its great talk, all the best.

[RubysHuman in reply to alpha666]

Thank you very much for your reply. I did go private and the consultant referred me for an echo, a monitor and will see me in his NHS clinic. I was relieved that something was happening. I has to wait 4 weeks for the echo which I had last week. Still not had an appointment for the monitor but it'll come. Then I guess he'll call me in for an appointment.

He did write to my GP to arrange anticoagulant's but I need a scan on my kidney first. This is due to a previous problem. My GP has referred me for this.

The waiting game is still on but I'm properly in the system and know who I can call to chase up ☺️

[alpha666]

Thats more like it RubysHuman it looks as if things are moving anyway, as before if you need to talk just drop me a message, i am not medically trained at all but its great sometimes to just talk to someone who is having the same experience as yourself, all the best.