Heart Failure Referral

[heartmatters1]

Hi

Just need to have a little rant on behalf of my husband, whom for several months has been suffering from breathlessness & tiredness. He also has persistent AF.

After him finally managing to speak to a GP in November last year & getting an ECG & blood test the GP said he would send an urgent referral to the heart failure clinic at our local hospital. It is now nearly 3 months later & he still hasn’t received an appointment. After contacting his GP he said he would chase this up. Still no joy. My husband himself has chased this up with the hospital too, only to be told he will be contacted in due course.

I know there is a backlog, probably due to COVID, but should he be concerned at the wait?

I would be interested to hear other people’s experience with heart failure appointment times. I am of course worried for him.

Best wishes Ally.

[Honeybee1961]

My route to HF diagnosis and referral to an HF clinic was complicated, but basically it seems the Drs discovered I had HF from an echocardiogram in A&E in August when I was admitted when I had a heart attack, but I didn’t find out about the HF until November as no one told me... I later discovered that a referral was made to the HF team at the end of August and I finally got to see a HF nurse for the first time in mid December, so I guess that is about three and a half to four months. The HF team here is primarily nurses who manage medication. I think the situation is probably different in each part of the country, all a bit piece meal and not ideal. The time between appointments seems to be 6/7 weeks, again not ideal when trying to titrate drugs. If I want to see a cardiologist, I have to ask my GP to refer me separately. A friend who lives in a different part of the country, had an echocardiogram in November, and also seems to have HF. She was told she would have to wait 18 weeks for an “urgent” referral to cardiology, and that seems to have been an accurate estimate. There are Nice guidelines for HF and a summary of them on the Pumping Marvellous charity’s website, might be worth a look if you haven’t seen them already, although the timescales seem to be a work of fiction... I hope your husband gets his appointment soon, Ally.

[heartmatters1 in reply to Honeybee1961]

Thanks for your response & experience. I dread to think how long one has to wait if it’s not an urgent referral. It seems something really serious has to happen before one is taken seriously.

I will take a look at the website you mentioned. Thanks.

Best wishes Ally

[heartmatters1]

Thanks for your response & experience. It’s just so worrying when you’re told it’s an urgent referral & months later you’re still waiting.

Best wishes to you & your partner

[Jessiebrown]

Hi the only way if you are worried to get seen is to go to A&E ,my husband had a pm fitted a year ago and everybody said he would be like a new man ! He has felt terrible ever since and hasn’t spoken to a cardiologist ,he has been and had the pm checked and told the nurse how he felt so she altered it a bit but didn’t make any difference to him,he is fatigued and has to sit down ever time he does something , he has seen gp who is very good but just gives him more pills he has had depression because he is so used to being active even though he is 79, he has had heaviness in his chest for 2weeks now and thought it was indigestion , I have had problems with my heart but that’s another thing ,but because I know a bit about things I had had enough so took him to gp yesterday he was going to put him on statins but when I told him he had this feeling in his chest all the time he said to go to A&E , they have kept him in and are doing tests ,which should have been done months ago , I know the nhs has been terribly overworked with COVID and I admire them so much ,we would be in a terrible place without them but I do think a lot of things like all our problems and things like cancer have been neglected because of it, I hope your husband soon gets sorted

[heartmatters1 in reply to Jessiebrown]

Hi - Thanks for your response. Sorry to hear of your experiences too.

You’re right if my husband gets any worse it will be a trip to A&E, which of course will be the last resort at the moment! He also is being monitored for kidney cancer. We’ve had to chase up a CT scan, which was supposed to have happened last month 😫

I can understand why your husband is depressed. It’s so frustrating & worrying not knowing what is going on. I hope your husband is sorted very soon & back home with you.

Oh well keep calm & carry on (the best we can) 😅

Best wishes Ally

[Jessiebrown in reply to heartmatters1]

Hi again just heard from him ,apparently he has had a slight heart attack a couple of weeks ago when he was awake all night with heartburn,I wanted to phone. 111 then but he said no but I should have trusted my instincts ,they are keeping him in and has been told they will sort him and make him better,but you mustn’t give up trying to get seen best of luck x

[heartmatters1 in reply to Jessiebrown]

It must be so hard too that you are unable to visit him. At least he is in the right place & being looked after.

X

[Jessiebrown in reply to heartmatters1]

Xx

[Tessie28]

Hi Ally, I think if I were you I would get a cardiologist to look at him privately. This is not vastly expensive and then they can put you on their NHS list. It is what I did this time last year. Now 11 months post OHS. Of course it would be better if things were running properly but it may be a while before they are. You could choose a cardiologist at a heart hospital. Good luck whatever you decide to do. x

[heartmatters1 in reply to Tessie28]

Yes, you’re right. We have been considering that option.

Thanks for your reply.

Best wishes Ally

[dembaba in reply to heartmatters1]

I have had to do the same. I'm in the Essex area, Best thing I ever did. We have a good rapport now, and I can e mail her as well. If it was left to the NHS consultant, I would still be waiting. I have seen him once in two years after being diagnosed with hf and dcm.The heart failure clinic are cancelling appts cos of lockdown and my gp is worse than useless!! It's your health, it's your money, take the plunge and go private. I'm sure you won't regret it. Good luck and let us know how it goes.x

[heartmatters1 in reply to dembaba]

Thanks for your reply. COVID is getting the blame for everything. It is so scary - what about all the other people who are seriously ill. Yes, I think he will have to go private, although there is probably a waiting list for this now. 😫

I will keep you updated.

Best wishes Ally

[dembaba in reply to heartmatters1]

Think you might be pleasantly surprised about waiting list. I rang pre-pandemic andgot an appt practcially the next day. Obvs, it will be a bit different now, and it may be a telephone consultaion, but at least it will start you off and you will feel like you are

doing your best and going forwards at last.x

[captscott]

i have hf and have been waiting 10 months for rebooking of follow up appointment due to covid. gave up chasing hospital last July and got private consultation, but still a big worry due to interface between private and public paths going forward

[heartmatters1 in reply to captscott]

Thanks for your reply. It looks like going private is the way forward.

Best wishes Ally

[Lupaal]

I had an echo a month ago, was told I'd get results in 4 weeks, asked my surgery to chase it up and the reply was that its 8 weeks now to wait for results, my anxiety levels are through the roof and wish I hadn't had it done.

[heartmatters1 in reply to Lupaal]

Sorry to hear of your experiences. It certainly doesn’t help with our anxieties when you are kept waiting so long for results or appointments, which of course doesn’t help when you have a heart problem. My original post was 10 months ago, and after getting no where for an NHS appointment for my husbands heart failure, he went to see a cardiologist privately (almost next day!). He has changed his medication & is also awaiting a cardioversion now (on the NHS).

I hope you get your results soon. I think you just have to keep pestering. Have you tried contacting the hospital/consultant secretary yourself?

Best wishes

Ally

[Lupaal in reply to heartmatters1]

Yes, they are saying its 8 weeks now for results . Terrible that we end up feeling tge need to pay privately, especially when you see the same consultant that you see on the NHS!

[heartmatters1 in reply to Lupaal]

Exactly - & the next day in some cases!