Please chase referrals or Progress on... - Atrial Fibrillati...

Atrial Fibrillation Support

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Please chase referrals or Progress on your Treatment.

kkatz profile image
15 Replies

I have said this before & it cant be said often enough.I have had to chase everything for the last 18 months and won't bore you with it all just an update.I had to ring arrythmia nurses 3 times April & May to be referred to EP. Chased 2 times over June July August to be told EP on Holiday and referral in triage tray.3rd time I said hang on not even looked at yet & now 3 months.It so happens I got a lovely young lady who "owned & solved my problem".Got me an appointment & got my letter being put on waiting list now.Nearly 4 months after Arrythmia nurse referred me.However not got admissions letter saying I am on list.Now just the wait for ablation.

So don't just accept there is a delay.Your case could be sat in a tray somewhere.Or like me feel there are people worse than me.The long wait could lessen the chance of success.

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kkatz profile image
kkatz
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15 Replies
MrJD profile image
MrJD

Completely concur.

Trying to get my amiodarone prescribed by my Gp but clinic letters not added.

Gp receptionist informs me they have a backlog of letters to action. Weeks I was informed.

I am a clinician as well as a patient so I have an awareness how to navigate the systems but others are not so fortunate and your advice is unfortunately spot on.

10gingercats profile image
10gingercats

I agree with you entirely. The way things are with the nhs it is every person for themselves.I had an eye appoint. cancelled twice and was told 'we will write to you'!Eight months on from original appoint. i felt enough was enough so took myself to the hospital and confronted,politely, a receptionist who arranged for someone to call me the next day. The person did call and the appoint was reinstated due to 'opening up a new afternoon of appoint's and they 'slid' me in!I did this direct approach on behalf of a very elderly friend. It also worked.

BobD profile image
BobDVolunteer

It is also worth making sure that you have requested and receive copies of all letters and test results as is your right. I have had these ever since my first EP appointment in 2005 including my cancer treatment in 2011 and all other medical issues. When you see the size of my home file you understand why my wife tells me I am the reason NHS is in such trouble.lol 😁

10gingercats profile image
10gingercats in reply to BobD

I have similar paper problems BobD!I resist keeping it all on computer.

kkatz profile image
kkatz in reply to BobD

not complete but some back to 2008.

secondtry profile image
secondtry in reply to BobD

If we are talking paper, I have a filing trolley full on all the major AF topics.....anybody beat that 😁.

kkatz profile image
kkatz

just think of all those trees

secondtry profile image
secondtry in reply to kkatz

I know but I am of a generation that struggles with ditching paper.....have a smallholding that I manage totally on Nature Conservation principles...can I claim that as my offset to the paper use?? 🤔

secondtry profile image
secondtry

Totally agree. New strategies required on all fronts for the new NHS.

in reply to secondtry

people - staff - is what is needed. Local eye hospital recently employed someone to go back to all letters and emails for last two years to see who had dropped through the cracks. As well as Covid, Brexit, previous neglect of the NHS by Government, a bad storm in the Spring wrecked the records store (hospital in the middle of a complete rebuild, records in an annexe). One scanner broke down and parts unobtainable for a while. Cue various layers of chaos.

So, yes, persist, keep records, make notes, and help others do that too. But don’t attack the staff who remain standing!

AnneRB profile image
AnneRB

not on NHS I live in California. Have had occasional a fib and then a major episode in November 2021 ended in emergency It took me until February to even see a cardiologist. My “substrate” was a disaster waiting to happen as I was a distance athlete. I had to beg borrow and nag to even get in the door

Ablation scheduled 4/29/22 then a nurses strike so finally 5/20/22. This is from Stanford medical in California one of our” elite hospitals”

So sad that we all need to be on it and be our own advocates in both side of the pond !

Persist persist persist

waveylines profile image
waveylines

so true!! Sometimes you have to repeatedly chase....... Im down for an op, allegedly nine month wait but winter coming up I dont expect anyone thinks it will be as short as that! In addition was meant to be referred to another department......that was back in July. Despite my phone calls the consultant letter and referral hasnt even been typed up two months later. So consequently am not even in the queue in the other department. Not happy. Am told backlog and no queue jumping will be considered (clearly they accept months of delay in admin and frankly makes a nonsense of anything the GP is supposed to follow up from seeing a consultant) .......wish the GP had referred me now it would have been quicker!! This is gynae.......other departments are quicker Ive since discovered. Makes a farce of our nhs service ........ Private route seems to be forcing so many these days......the private sector I gather is flooded as people dig deep into precious savings or take out loans. Sad state of affairs and the ultimate aim of our gov is finally being achieved..... Of course if successive governments hadnt robbed our NIC payment originally set up to pay for the nhs or at least planned for an aging population.......they had decades to do this .......we wouldnt be in this mess. But no the buck was passed down the road repeatedly and this gov decided the solution was to descreetly privatise stealthly. Starve the rest. The consequence is there for all to see.

Staffsgirl profile image
Staffsgirl

Totally agree. Recently our GP failed to action the same referral TWICE!

Each time I had to call them several times and spend valuable time waiting to be connected on the phone. (It is still forbidden to enter the surgery building without an appointment, and face to face ones are rare.)

Each phone call involves forcibly listening to the same inane, 5 minute, repetitive recorded massage! Once ‘through’, the staff are less than helpful. In our case, they denied the existence of the two ‘lost’ referrals, yet we had received the initial phone triage!

Heaven help those people who are accepting the system, and simply waiting patiently. They may well be forgotten. The NHS is in crisis indeed.

kkatz profile image
kkatz in reply to Staffsgirl

I so know what you mean, firstly do you have access to your GP records.If not ask to have access.I can see notes of all my consultations.

Way back Feb 21 I was referred by my Gp .It somehow got down the heart failure route and rejected.The arrythmia referral got lost.Our practice secretary tried to sort but in the end gave me the numbers to ring.

I could see the original AF referral on the NHs app but not on Gp records & it dissappeared and I hadnt kept a note.A good Gp and my begging & pleading got another referral in July.5 months later.I have learned a lot but I fear it is too late for the ablation to work when I eventually get it.

Staffsgirl profile image
Staffsgirl

Thanks. Yes. We have online access, but not everything gets put there! Fortunately I keep fairly meticulous records myself. As I said, heaven help those who don’t keep on top of these things.

Some years ago I had orthopaedic surgery following an accident. After three weeks in hospital I was sent home with a Zimmer frame. I had to contact the hospital and ask for physio and for a follow up ortho appointment. I was told I didn’t need either! I put them straight on that. At the very least I needed to know how to progress from a Zimmer frame to crutches. As patients we need to be proactive.

Best of luck with your ablation.

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