Is there anyone there at UHCW??!!

[wilsond]

This is getting a bit ridiculous! I know the NHS is under pressure but I have geen trying to speak to one/ any of the 4 Arrythmia Nurses at University Hospital Cov and Warwickshire since last Monday!Just left 4th ansafone message,and also tried Proff Osmans secretary for 2nd time,also ansafone....

Im coming up to 6 months post ablation,having had no follow up by post phone ,email or pigeon.

Last week,one of our practice GPs advised me to ' come off all your drugs now as that is.what your consultant will want you to do'

In that statement,he included Apixaban!!

I soon put him right on that one luckily I had enough crayons with me.

The reason was that I have a lot of pain in my shoulder and back,and limited to what he can prescribe for it.

I am pushing for investigation as to possible causes but did give it a go.

2 days later had a 24 hour AF event. Great.So put myself back on meds.Rang AF nurses next day and left message explaining.

I have insisted on an appointment with my own GP,and.was shocked to get a FACE to FACE actual real appointment tomorrow.

Sorry for the rant but think the aftercare at UHCW is now shocking!

Huh.

[jeanjeannie50]

I suppose one or two of the AF nurses could be off sick, or on holiday. The other two busy with appointments and cardioversions. If you don't get a response and have to call again, mention in the message you leave that if you don't hear from someone you will have no other option but to talk to the PALS team for advice.

Jean

[wilsond in reply to jeanjeannie50]

Thats a good idea Jean. Will do xx

[jeanjeannie50 in reply to wilsond]

I'm sure you don't need me to tell you this, but leave an absolutely charming and kind message. Just say a friend is urging you to contact PALS (me), but you've said you'll try contacting them once more. So not your fault you see, its the 'friend' urging you on.

Jean

[wilsond in reply to jeanjeannie50]

Like your thinking Jean! A very cunning plan. Ringing now...xx

[sassy59]

Hoping you hear today wilsond. Thinking of you. Xxx

[wilsond in reply to sassy59]

Thank you sassy x

[BobD Volunteer]

Cant offer anything else (we taught you well) but wanted to sympathise anyway.

[wilsond in reply to BobD]

Cheers Bob!

[bantam12]

Don’t know your hospital system but at my hospital I was told if I hadn’t had contact with the AF nurses for 6 months I couldn’t speak to them and would have to be re referred, utterly ridiculous situation as it now means I have no Cardiac Con or AF nurse 😤

[wilsond in reply to bantam12]

Ridiculous indeed. Just left a nice pleasant message saying it has been suggested that I ring PALs( patient liason service) if I don't hear today.Hope you can get back into The System!

[Desanthony in reply to wilsond]

Fingers crossed for you.

[Desanthony]

It's almost impossible isn't it sometimes? I often complain about our GP and hospital but now we are back to face to face appointments at our GP surgery and I actually had one this morning to discuss blood tests weight cholesterol, weight, BMI etc. They did a full blood test two weeks ago and thankfully all OK. The surgery was full and my appointment was for 08.50 but went in a little late and the GP gave me her full attention and about quarter of an hour + of her time. Haven't heard from the cardio nurses for a while and really should have spoken to them in October but blood tests done and this morning the GP I saw said I should be having them every 6 months whereas told annually - I don't care so long as I get them regularly. Anyway, just glad all blood tests OK for apixaban and diabetes and so on. Only thing wrong with me is old age and waiting for 2 cataract ops was told that I would have them in November (this is private) but now it looks like it will be end of January - so even the private hospitals are filling up as people decide to go private to avoid the longer waiting lists on the NHS.

Hopefully mentioning PALS will work - if not I would hand in a letter stating that if you are not contacted that you will get your MP involved - always polite but got to be proactive.

[wilsond in reply to Desanthony]

Thank you Des. Hope all goes well with the eyes. I will do that if need be.( my MP is used to me keeping him busy lol!)Best wishes

[H48007]

I had my ablation on the 3rd Nov my follow up app is end of march. Same Hospital. A telephone conversation. I did have trouble getting to speak with anyone when calling. Try the department that arranges the appointments if you haven't already 02476965592. Recovery has been OK leg is still tender. Maggie

[wilsond in reply to H48007]

Thank you very much! I have had no word at all so shall ring this number. With the leg,try arnica cream its very good.Wishing you all the best xx

[Rienij70]

not surprised about your tale. Nobody in the NHS takes on responsibility for anything.

I had another operation on my bladder last Thursday. When asking the doctor on discharge whether to restart my Apixaban he said neither yes nor no. As it was a fine line, it could cause a bleed taking it. But as I am permanent AF I could have a blood clot or stroke if not.

So I decided to take it. In hindsight not a very good move. My urine became like tomato soup for two days. So on advice of a nurse I stopped the Apixaban on Sunday, and today. But nobody will advice wether to start it again. Blood test done in A&E on advice of GP. But A&E wouldn’t commit to an answer, nor would the nurse in the Churchill. Referred back to my GP who I couldn’t speak to until I ring back at 8 in the morning.

So Wilsond I hear where you are coming from.

Lots of hugs from Rienij ❤️❤️

[wilsond in reply to Rienij70]

Oh Rienij its very worrying isnt it? I was told to take my apixaban before 6 am on the day of my ablation. Should have been 6pm night before! They had to adjust something to be able to do it.I do hope you get a definite answer when you speak to GP and that your surgery is a success.

Good night friend xxx💕💕💕

[Ducky2003]

I'll leave the heart stuff for the moment but I finally got an eye appointment after 13 months that should have been followed up after 2 months and every 3 months subsequent to that as well and now I have a bloomin cataract. So more surgery........ way to go UHCW!!!

[wilsond in reply to Ducky2003]

For Gawds sake!! I will PM you regarding fluffy coffee meet up in a.m. phone needs charge! Xx

[Ducky2003 in reply to wilsond]

Kewl! x

[pusillanimous in reply to Ducky2003]

Console yourself - cataracts are not surgery but just a very quick procedure that pulverises the cataract and fits the artificial lens, over in minutes !!!!

[Rubymurray25 in reply to pusillanimous]

Waiting to have mine done and your message has 100% lifted me so a massive thanks.

[Ducky2003 in reply to pusillanimous]

The Dr referred to it as surgery so that was my reference point.Yes, older friends have had theirs done and have said it was straightforward. Just didn't need the extra hassle when it might have been avoided.

[Windlepoons in reply to Ducky2003]

Hi Ducky. I was referred to our eye hospital by my optician. I took a year to get an appointment from them. Then I was told I have the beginning of a cateract , changes at the back of my eyes and they can't tell if I'm developing glaucoma ( mom had it) because of the shape of my eyes. I've had two vitreous tears as well in the past. They said we will check you in four months. Predictably I have heard nothing. No one ever reviews my AF medication or asks for blood tests I really feel we are on our own in a lot of cases now. Ignore us and we might go away!

[Ducky2003 in reply to Windlepoons]

I have to say, my cardio team have been great, on the whole. I was having eye appointments every 3-4 months as I have ocular hypertension which they were monitoring so it didn't escalate to glaucoma. Last official appt was June last year but I went back in the October, referred by optician, as I suddenly had blurred vision in left eye.

I was told it was dry eye, here's some mire drops and we'll have you back in 2 months to check it.

No follow up appt and they also managed to lose me on the system for my usual quarterly check ups.

I did chase twice but was told it was in hand. Clearly not. Now, its a flamin cataract. I was surprised at my age but guy said it can happen at any age, just more common I older folk............ same as my bloomin AF. I seem to be getting all the good stuff about 16 years early 😁.

[Windlepoons in reply to Ducky2003]

Gawd! I expect I will have to chase my next eye appointment in case they have lost me in the appointment black hole too! Not sure what age is usual for cateracts but I was 67 when diagnosed and a bit surprised. Good luck with your appointment.☺️

[wilsond in reply to Windlepoons]

Start now!! Just to be on safe side. Good luck and thank you xx

[ETHEL103]

Morning Wilson.I had my ablation at St Thomas's on May 16th so just before you.I chased up my appointment twice and at last I have a call on 5th Dec 7 months after.I only got anywhere because the covid booster set a fib off for 12 hours in September and I sent a kardia reading to the arrhythmia nurse and she replied.

[wilsond in reply to ETHEL103]

Lets hope for better days for the NHS. Sorry to hear you,too,had a blip.xx

[Nick1957]

Very poor AF nurse follow up service indeed! I had to contact St Barts AF nurse recently via email to get a full copy of my Echocardiogram - I recieved it attached to replied email within 1hour - now that's what I call excellent service. PALS needs to act on this ASAP.

[wilsond in reply to Nick1957]

Now thats good! I am pursuing it

[4chickens]

🤞you hear today

[Ppiman]

If the pressure on the team at UHCW is anything like in our local NHS trust then it's aftercare is shocking only because the NHS itself is struggling like never before with a terrible lack of staff caused through Brexit and Covid.

I know of staff who are working their socks of against the most awful odds.

Steve

[wilsond in reply to Ppiman]

I do sympathise but they have 4 staff now not 3,and for a week to go by I feel it is quite poor.Lets hope for better days...

[Ppiman in reply to wilsond]

I fear worse is to come if those I know working there are right in their comments. The staffing situation seems intractable now we have lost so many European healthcare workers and so many retired during covid.

The issue is often not numbers but staff absence from illness and holidays.

Have you tried phoning the cardiologist's secretary? That always worked for me.

Steve

[wilsond in reply to Ppiman]

Yes has before for me. I rang on Thursday,went to ansafone. Nothing as yet. X

[Finlaysmum]

Sorry to hear this, I know only too well the frustration at trying to get through the NHS system. Have you emailed your consultants Personal Admin/secretary? It seems you have to fight very hard to get heard and seen. I hope you get some advice soon.

[wilsond in reply to Finlaysmum]

Yes yesterday pm so fingers crossed. Thank you xx

[Lenlec]

I sympathise with you. I had my ablation at Coventry last September but my Af is back and I want to talk to them. I did leave a few voice Mail messages as well. I paid private to see prof osman

[wilsond in reply to Lenlec]

Me too,have seen him twice privately. Hope you get sorted out xxx

[Lenlec in reply to wilsond]

thank you. You too. I’m thnking of a 2nd touch up ablation. Got a phone appointment with dr panniker in 3 weeks time .

[wilsond in reply to Lenlec]

Best wishes! Xx

[Singwell]

Sorry to hear this and a bummer re the AF as I know you've been in Sinus rhythm for a while now. Have you written to cardiology and explained what's happened? In any case it sounds like it might be worth a gradual decrease in your rate or rhythm meds. But you do need informed advice on this. I'm just about (hopefully) to start reducing my Flecainide very gradually. But without seeing my EP again prefer not to go further than that with the Diltiazem due to blood pressure control. Keep pushing. At least your GP is on the case even though they need educating!

[wilsond in reply to Singwell]

I think you are right,the abrupt stopping of the meds caused the episode I am convinced. Not a peep since. I have emailed the Secretary yesterday pm.Update up soon xc

[Paulbounce]

Hi Wil.

Just a quick message to say I'm sorry you are having these problems. I really hope you are sorted out soon. Get stuck in to them and become a real nuisance remaining polite of course. This is your heath we are talking about not a missing service on a car.

Good luck and look forward to hearing how you get on.

Paul

PS - "I soon put him right on that one luckily I had enough crayons with me". Love it and will remember that one 😂😂😂

[wilsond in reply to Paulbounce]

Use it with pleasure!Just going to update,had voicemail to say they have emailed the dept.who arrange appointments. Had just taken another call on landline as they called back,typical.

I now have the phone number of that dept,thanks to a fellow member here so shall call them anyway ! Cheers Paul x

[Budaboy]

I went to my surgery in Sussex last year (post covid) to collect a prescription. It had recently been expensively renovated with the seating decorated in progressive rainbow colours! There were no patients. Presumably they were all waiting on line! I moved to central Europe. I can walk into my GP with no appointment and I know my cardiologist at the local teaching hospital would see me it I ever needed to see her. That is how I solved the problem. I know this site is not political so I will leave it here.

[Brizzy50000]

I feel your pain, I've been trying to book an appointment for an endoscopy for the past 2 months, I have 5 telephone numbers for that department and over the last 6 weeks have rung multiple times and have got no answer on any of them, I even got a letter from the hospital to say I haven't booked an appointment yet😡

[wilsond in reply to Brizzy50000]

Thats awful! Could you write back in? Ridiculous

[Brizzy50000]

I will have to actually go to the hospital and try and book in

[wilsond in reply to Brizzy50000]

For goodness sake! Best of luck x

[Brizzy50000 in reply to wilsond]

Going into the hospital worked just waiting for a day and time now Happy day's

[wilsond in reply to Brizzy50000]

Well done!! Xx

[Bagrat]

It is so worrying when you think of all the less proactive than us. Having said that Sep 21 I finally, after a private appt and some mild coercion on my part got rereferred via GP to cardiology so I could access a stress echo. ( I have been breathless on hills for several years!!)In the event I saw excellent cardiologist who increased my flecainide and said he would review me in 3 months, and had a bog standard echo.

When letter arrived 3 months had changed to "in due course" and 14 months later am still waiting. I haven't agitated as all is well apart from SOB on hills.

I am learning to accept what is "normal for me"

[wilsond in reply to Bagrat]

Yes,we said similar,how many are simply trusting that all is ok ,and Dr (s) know best.Its annoying not knowing if all is well with our care,thats what They are paid for after all.

We adapt if need be..xx

Best wishes Bagrat...btw curious,how did you come up with the name? !

[Bagrat in reply to wilsond]

Ah the name... years ago I used ratbag on a couple of forums, then when I wanted a new email address it was taken so I reversed the syllables. so when I joined HU it came to mind........

[irene75359]

I know this isn't any consolation to you but I having been having fairly intense cancer appointments and treatment since March last year at the Royal Marsden in Surrey. Not one appointment has been cancelled, the longest I have waited is an hour (for a blood test) and 10 minutes (truly!) in the radiotherapy department. Two lung ablations under GA, no delays or changing of dates and I have never waited longer than a week for the results of scans (and I know in other parts of the country people are waiting eight weeks - the mind boggles). I have huge sympathy with all the overworked NHS staff but it begs the question, if one hospital can do it - facing the same Covid, sickness, lost of staff why can't others get even half-way to this level of efficiency? The staff on the ground aren't to blame here, that's for sure...or maybe I am just being naive.

[wilsond in reply to irene75359]

Exactly! I am glad you are getting decent care in what must be stressful personal times.Having been a patient here since c2013 its v worrying .

Added to that the rubbish advice from my GP..its not exactly reassuring!

Best wishes to you xx

[irene75359]

Thank you x