After my heart attack/cardiac arrest the hospital said I had heart failure. This was confirmed after a second Echo. This confirmation that I had an EF of 30% and therefore had heart failure and under the NYHA classification was Class 1 was sent to my GP and also to the cardio rehab team – who on seeing it asked had I been referred for a Heart Failure Nurse by my GP – No, never knew they existed. So the cardio rehab team set off the process for me to be allocated a HF Nurse (the cardio rehab and the HF Nurses are both based in the same building).
In June I was duly allocated a HF Nurse, who has been very helpful in getting one of my medicines changed and has reduced my dose of furosemide – so far so good.
I’ve this evening gone into Patent Access to check on some upcoming appointments, and have found a letter has been scanned into the documents folder. In there is a letter date 30th September from the Heart Support Group which says:-
“Following telephone consultation with the above patient, (26/09/2019), Russell advises me his condition is stable and he feels well. He has been discharged to routine GP care but is aware he can call HF team if any symptoms develop. Please review as per NICE heart failure guidance.”
I have a bit of a problem with this, in that I did not have telephone consultation with the author of this letter or anyone else within the NHS on that day. I’m guessing that as I’m Class 1 they want to bump me off their books and put me back with my GP.
I have 2 questions
1 –If HF nurses are available in your area, should everyone be assigned one, regardless of whether they are class 1,2,3 or 4. I’ve tried to find an answer to this without success.
Does anyone know what, if any, any the NICE guidelines on this.
2 – Anyone else had this done to them. I’m not sure how to approach this, apart from just saying "you’re lying, I’ve never spoken to you before today". I’m very disappointed by this, especially as the NHS is making such a noise about being straight and truthful with patents. Lying is a sure way of loss of trust. At the moment I feel very let down by this
. Grateful for any thoughts/comments.
Written by
SpiritoftheFloyd
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Totally get this Russell, Kevin was discharged by his nurse as there wasn't anything more she could do , this was at a point when cardiologist was looking to tweak meds to try and get him on Entresto and the nurses support was really needed. It does make you lose your trust in them.
Under nice guidelines everyone should have a HF nurse if they're available but once you're stable they do discharge you to the GP's care but you are able to ring them if you need to. Also, your GP/cardiologist can re-refer you 8f required.
I would challenge the telephone call/letter issue. Maybe you could ask on the Pumping Marvellous website or speak to the CEO, Nick, for advice. The number is on the website or you could e mail them. I definitely think you should at the very least have it noted on your records that you've not had the telephone conversation. Good luck
Thanks for that. I didn't realise that once they consider you're stable you get passed back to your GP, feel a bit better now I know that, thought they were trying to dump me by some nefarious means!
That's a shame, on the few occasions I saw the nurse, I thought the service excellent as they have the time to discuss your condition. This was one of the things mentioned on the BHF site about HF Nurses - people with HF are frequently on a suite of medicines and frequently have other conditions as well as HF, therefore the 10 mins the GP affords you doesn't do justice to the needs of someone with HF.
Oh well, at least I've got my beta blocker changed. I tried to get it changed in March as I was freezing 24/7, the senior partner in the surgery listened to me, agreed with me that it was probably the beta blocker that was to blame, then gave me the I'm just a humble GP speech and suggested I talk to the hospital at my next review.
I've started having consultations with my nominated GP the last few appointments, as she's not a senior partner she seems more willing to help!
I'm actually going down to the centre in 2 weeks for an exercise tolerance test prior to going back to cardio rehab post ICD, so I might take the letter with me and try and confront this individual! 😤😤
We were a bit concerned when Kevin was discharged as the nurses do become a bit of a comfort blanket. Having said that, the first nurse was fantastic, the 2nd one didn't do much more than take his BP and tell us how much she regretted leaving Papworth!! However, his GP couldn't be more supportive. We don't always agree but we do have complete faith that she has kevins best interest at heart and never rushes us through an an appt.
Understand your feelings about being discharged quite so soon. I'm just about to embark on the HF journey and have little faith that the nurses will keep me around for very long - leaving the poor old GP to deal with more without the time to do this.
That said, apart from no longer having specialist knowledge around you the issue of the letter is, to me, rather disquieting.
I think I would be inclined to say something. It is a matter of clinical record that you have had this conversation and said you were well = when in fact you said no such thing. There may be lots of innocent explanations for this error, but it is an error and should be corrected so that your notes with the GP are accurate. Will probably not affect the outcome, ie discharge, but at least clinical notes will be up to date.
Maybe have a word with your GP or talk to PALS and see what they recommend?
I am a little surprised at being discharged so soon, I thought the appointments may have become every 3 months and after a year or so get discharged, so 3 months is a short time especially as I've only just had an ICD implanted 6 weeks ago.
But the issue of a fabricated telephone call is worrying. It basically suggests they are taking decisions over my care with my consent and knowledge when they're not.
I don't think the GP will help, I suspect they all clam up when this sort of thing arises. PALS might be an avenue to go down, as I said I'm due down the centre 2 weeks today, I may try and see the author of the letter to see what she has to say!
I told the GP that what he was reading to me from his screen was a complete work of fiction. He seemed bemused but i felt too ill to pursue it. He appeared to think I was lying. I can;t see the records online and he wasn;t prepared to let me see his. Didn't have the energy to do anything about fighting to have it all corrected = too busy trying to get an appointment for an echo. Whatever you decide to do I wish you the best of luck. I think the term used by the medical profession is "buffing" the notes.
Ditto but the problem is should you kick up any sort of fuss/disagree you know they have ways of labeling people ....... and it is hard enough to get basic follow up as it is.
Yes it's difficult, as you say I don't want to be labelled as difficult, but there's a case that if we're all frightened to complain about things like this then they'll feel that they are exempt from any scrutiny, anyone working in health care with that belief is a danger to their patients!
I feel strongly about such issues, especially when it comes to something as critical as cardiac after care and would write immediately to record your concerns to NICE and to ask their advice and feel sure your complaint will be dealt with accordingly. Complaining directly to the NHS is long, tedious and very time consuming since they have so very many issues to deal with. Nothing I have heard would appear to be leaving anyone in danger, however it lies far below a GOLD standard - in my humble opinion.
I too am surprised, I would have thought that in view of the circumstances that 17Nevil would still be under the HF nurses as they can arrange palative care etc.
Perhaps things are different in different areas of the UK.
It's more likely staff shortages & funding, sadly. We were very lucky with my husbands first nurse, very highly qualified and funded by both the BHF & NHS.
Best wishes 17Nevil. I too am surprised that you don't have regular contact with a HF nurse. Do bear in mind that, although you've been discharged, you can still ring them if you need to. Maybe also ask your GP for a re-referral in case you have slipped through the gaps in your care, as we know, this does happen
The phone call thing bothers me. The nurse may have attached the letter to the wrong account. Is your name Russell? There may be other Russells they deal with. I would get in touch with them to find out what has happened.
Don't think so - the letter has my correct name/address/DOB and NHS number. The letter also says i'm cc'd in, but I've yet to receive the letter myself!
Just got home after a day out and the copy of the letter to GP has arrived. Now I have the actual letter I might make a phone call tomorrow asking what's this about
Just been for a exercise tolerance test and produced the letter, nurse looked at the notes, the last note was the appointment I had on 9th September - an assessment to return to rehab - nothing on record since apart from letter asking me to go to ETT today.
Asked what my EF nurse last said to me - something on the lines of won't call you in now until you've had your ICD fitted! - has taken a photocopy of the letter and will let me know when I go to rehab next Tuesday! The plot thickens!
The fact that there's nothing recorded is interesting. I know that when I was first attending cardio rehab they moved from a pure paper based system to a computer/laptop one - I wondering whether the letter was intended fro someone else but they selected my details in error! - New systems tend to flummox people
well i did find a note for a telephone consultation on my old gp appointments, seems the gp talking to the telephone answering service is ok. still i didn't hear the message for a few weeks after it was left.
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