Does anyone else feel in limbo? - British Heart Fou...

British Heart Foundation

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Does anyone else feel in limbo?

Nora-B profile image
23 Replies

Whom should I contact.? I was led to believe I needed to be seen for follow ups by Cardiologist and Pathologist but have heard nothing for a couple of months (the pathologist told me 2 months ago that he will be seeing me in 2 months time). I have heard nothing and my GP is now on annual leave. I feel in limbo. Has anyone else had this problem or am I just getting in a panic?

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Nora-B profile image
Nora-B
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23 Replies

Do you have a copy of a letter saying that you will be having a follow up visit? If so I would contact the secretary of the Doctor who sent you the letter and point out that a follow up visit has not yet been confirmed.If you dont have a copy of the letter the staff at your local surgery should be able to look on your reccord and see if the consulatant has actually stated this is a letter to your GP.

Nora-B profile image
Nora-B in reply to

Thank you so much for your prompt reply. I was just thinking of doing exactly what you said. I know copies have been sent to the GP so why no-one could advise me I have no idea. I know my GP is on leave but there has to be another doctor to check and advise. Like a lot of people at the moment I am trying not to pester but sometimes it pays. Thank you again.

Snackjack profile image
Snackjack in reply to

I don't know if you have access with your hospital but I use "Patient Portal" and can access my local hospital records. Just a thought. Hope you get your follow up soon.

Nora-B profile image
Nora-B in reply to Snackjack

Thank you. I had forgotten that but I have been getting hard copies of letters but could not find the one I had read from Cardiologist. That, I had also forgotten, was sent to me via email and was hiding in my inbox.I was unable to print it out. Quite frankly technology not been too good around my way lately.. However, I have now emailed his secretary. Must admit some of these letters don't make for comfortng reading. 🙄

Snackjack profile image
Snackjack in reply to Nora-B

I know what you mean, some of mine are not a comfortable read either. Heart failure nurse gave me another tablet on Tuesday and made a comment "they won't prolong your life but should make you more comfortable", you can probably imagine my thoughts leading on from that. Take care and hope you get on alright. xx

Nora-B profile image
Nora-B in reply to Snackjack

Bless Snackjack. I just don't know what to say to that. I had a quick look at your profile and I see that you cope by keeping a good sense of humour. Brilliant. Keep it up. HU often reminds me to add to my profile but I am not good at it. Had a phone call from Health centre this morning They asked me if I could go in this afternoon. Not knowing what to expect,if anything, I went. I was greeted by a very young man who has what seems to be a new role within the system. I don't know if it will be so in all surgeries but he was able to spend time with me, going through my records in detail which many doctors just do not have the time to do in the short slots available at the moment. Actually I think he is a trainee. He has forwarded my concerns to my cardiologist and pathologist and says I need do nothing now but wait for their response. All this started after one of my sons put me in touch with a private doctor that he had used. I had been lack lustre for a while and like most of us, unwilling to ( and largely unable) to get to see a doctor due to the pandemic. This doctor left no stone unturned. Within a few minutes of examining me this lovely doctor had diagnosed heart murmur and suspected carotid artery blockage,.and a whole other can of worms. He told me that it was lucky my son acted when he did. You take care too X

Snackjack profile image
Snackjack in reply to Nora-B

Thank heavens your son got you to see that doctor, sounds very thorough, also sounds like the young man at your doctors surgery is being pro-active. Sending you my very best wishes for a good outcome for you. Do let us know how you progress through your journey and how you are doing. Take care xx

Hi Nora-B

Limbo seems to be the new normal.

We don’t want to ask

We don’t want to push

We don’t feel we have the right…..

………just go ahead and do it.

You have a Cardiologist

You have a specialist

You have a condition

………go right ahead and ask!

I wish I had taken my own advice.

I’m doing it now though!

❤️Maisie❤️

Greenthorn profile image
Greenthorn in reply to

I like that Maisie, will said and well spaced out!

RufusScamp profile image
RufusScamp

I think many of us are in a state of semi-limbo at least. Hospitals are being swamped with COVID patients, and need to balance patients' needs against the risk of infection. I hope you get some sort of contact soon.

Wooodsie profile image
Wooodsie

I agree with you Nora. I haven't seen a sole since my op 14 months ago except when I've had 'other' ailments to discuss with the GP. No med review, no blood review, no heart review, nada.

I hope you achieve success on your follow up 🤞

Qualipop profile image
Qualipop in reply to Wooodsie

my GP has been doing all the normal annual blood tests and checks and I've even got appointments for a holter monitor and an echo scan so there's no excuse for them to be missed. Get on that phone.

Nora-B profile image
Nora-B in reply to Qualipop

Think I am getting there..See my reply to Snapjack.

Nora-B profile image
Nora-B in reply to Wooodsie

That is not good Woodsie..Were you not advised when you might need follow ups? Did you ask your doctor about all the reviews. 14 months does seem a long time to wait for such reviews.. Strange world we are living in.. I hope YOU can get some clarity soon. It is so unsettling. 🤔 x

ETHEL103 profile image
ETHEL103

Yes.Happened to me.I paid to see a private cardio and ep in London.You need answers .My local hospital wait for the cardio app was 32 weeks.!!!!

Nora-B profile image
Nora-B in reply to ETHEL103

Yes. I paid to see private doctor at my son's suggestion and paid for Cardio..I had to see Cardio, Pathologist and neurologist. The pathologist suggested that he would be happy to see me as NHS outpatient after initial appontment. I thought that wonderful and I have been treated well thus far. I was just hoping I am not muddying the waters by getting.my local NHS surgery to gee everything up. I trust you have everything under control now. Just seems one thing after another but don't like grumbling as there are so many people suffering in one way or another..Take care..

Ric21Caz profile image
Ric21Caz

Hi Nora, this page has been a great help to me lately and I was in the same space as you are. There are lots of great people here with advice and experience, they have helped put me in a better headspace. I had HA, 2 restart’s, stent, and to ice the cake tested positive for COVID so put in isolation. Oh and stopped smoking cold. I know the health system is working so hard to help with all of us but feeling alone and forgotten seems to be a step a lot of us go through, as one member reminded me early on we are not and we are here to help each other. Deep breath, count to 10 and go get them Nora.

Hearthrob profile image
Hearthrob

I got the feeling that hospitals and specialists are trying to reduce patient's by caning other's. I did get a follow up eventually, then was told, see you in 5 years. will I still be alive...who knows.

Nora-B profile image
Nora-B in reply to Hearthrob

5 YEARS. ?? Make sure you ARE alive just so you can keep the appointment.. Beggars belief..

Violymay profile image
Violymay

Hi Nora! ‘In limbo’ describes perfectly just how I feel, too.I had an echocardiogram in September but don’t get to discuss the findings until a phone call from a cardiologist on December 15th. I was a little reassured by the fact I was allowed to go home following the procedure, assuming if my condition was life - threatening I would have been kept in.

mumsastudent profile image
mumsastudent

the term used at our (university & v large) hospital use is pending & pending &

Magicmog12 profile image
Magicmog12

I don't think you are on your own Nora they all seem to be getting rid of a backlog due to covid I spoke to my gp on a matter yesterday and while I was on the phone reminded him that my review with my cardiologist that was due in July hasn't happened yet apparently it was on the screen in front of him that I would be seen then so hes going to chase it up. Had the initial reviews from surgeon and cardiology team initially after the surgery I had in April 2020 and then from the pvi about this time last year but nothing since. Is there someone else in the practise that could chase this up in your gps absence?

Nora-B profile image
Nora-B in reply to Magicmog12

Thank you. Yes I saw on a news feed this morning. I went to see a young man who I think may have been a clinition. ( we never had one of those before). He has said he is chasing the matter up and was preparing an email as we spoke. The last contact I had with cardiologist was a phone consultation and he wanted to see me a s.a.p. after appointments with pathologist and neurologist. This he said he hoped it would be around the end of August. Reports from him rated me as 'high risk' but there we go. All the GPs at our surgery are part time anyway so there were times when it was hard to get an appointment well before lockdown. My registered GP is lovely when she is there. Quite a few doctors in the NHS do private work too. I just tell myself to "keep taking the pills" I have gone from feeling I am.in good hands, to a feeling of being written off and ready for the knackers yard.By the look of it, I am probably not alone with that feeling.. Those that work in the medical profession work hard and they have a lot of responsibility. I just am bewildered when it comes to what has been going on within the NHS. Now they are planning to lay off loyal workers. ..( If they haven't already started) But that's yet another can of worms. I do hope you have luck with your review.

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