Getting the runaround

[6TIMES]

Hi to everyone and I hope that you have a good day,

Since been diagnosed with AF in May things have gone from bad to worse, i know that there are a great many people a lot worse than me, for instance i suffer from no symptoms but have permanent AF,

my moan is this, and has anyone had similar, had the 24 hour monitor and the echocardiogram a month ago and was told to phone the cardiologist receptionist in 2 weeks for any update, rang yesterday and was told that the scan results was sent to my gp on the 6th of November, strange that as my gp told me on the 8th that no results have come through yet, receptionists told me that it was sent electronically, gp hasn't got it so where is it i asked, she got a bit stuffy with me and said that she would send it again so ring your gp, so i did and they said no nothing here, you come up against a brick wall every time you try and find out information, don't they understand how important these things are to the patient, my results are floating around somewhere and I'm fed up with the whole situation, sorry to moan.

[Padayn01]

Frustrating, can't your GP ring them up and chase? instead of you being back and forth with Hospital and GP?

[Bertiedette]

It's so frustrating, you have a right to moan . I am forever chasing results ,meds ,apps and even just a chat to Dr. Starting to think that I don't exist.lol.

[Finvola]

No, that’s not moaning 6times - you are entitled not to be fobbed off, no matter how busy other people think they are.

The logical solution is that your results have to be somewhere in your GP’s system, having now been sent twice. You need someone to look more closely - my results were once found in ‘the hospital folder’. I didn’t know what that meant but it seemed that the document had been transferred to the wrong file.

It might be worth while to visit your clinic and talk to someone in person. Failing that, perhaps the cardiologist’s secretary can email a copy directly to you?

Best wishes with it - soooo frustrating.

[Hidden]

My first thought is how confident are you that your GP will be able to interpret your echocardiogram and will he be able to interpret an ECG. It’s one thing reeling off a load of statistics but it’s very different knowing what they mean and what the best thing would be to continue your treatment. I would be tempted to politely make this point to your cardiologist’s secretary and ask if you can see him for the follow up appointment. Maybe it’s because you are symptom free, which of course is good, but it is not ideal. Wouldn’t it be interesting to see how your Cardiologist reacted if you asked for a private consultation!

[6TIMES in reply to Hidden]

Thanks for your help, my 2nd call to the Secretary and I was told that as i don't have a secure email address i can't have a copy sent but I can have a copy sent by post, fair enough, she commented that i wouldn't be able to understand the contents anyway, maybe not, but don't intimate that I am uneducated, anyway, she assured me that the information had been sent while i was on the phone, fair enough, 5 minutes later my gp surgery rings me to say that they have spoken to the Secretary and the information had been sent to them but they have been having trouble with the electronic delivery system and will let me know when the gp gets it and decides what my next move is, my argument is that, if I hadn't rang I'd never have known that the results had got lost and 2 weeks of valuable time had passed, i refuse to be fobbed off and i have requested a appointment with the cardiologist ASAP

[CDreamer in reply to 6TIMES]

We get your frustration! I learned fairly early on that unless I pushed and was a ‘nuisance’ - not very much happened.

[CDreamer]

Sad to say - sounds very familiar. I registered to receive copies of all correspondence between GP & secondary care - which is now very thick. If you have evidence it’s amazing how more effective things work - put everything in writing & keep copies & take those files to any hospital appointments. I have had specialists tell me things that have never happened & others not noted that have. When confronted with written evidence or lack of got results.

[Melbuckton in reply to CDreamer]

How did you register for the documentation please?

[CDreamer in reply to Melbuckton]

You need to contact the surgery manager or administrator of your GP surgery. Our surgery has a form which you just fill in. When you see a specialist - ask the clinic admin for similar.

At present - because primary care and secondary care computer systems rarely talk to each other and because there is no direct, secure portal that patient’s can access and there is a lot of concern about patient’s having that access in some areas, there is rarely an opportunity to have direct access to notes on file other than summary notes and again you have to fill in a form and be approved. There is no secure email system so you will hardly ever get NHS to email reports etc. Although you have the right to access your notes, in practice this is rarely simple and at our practice you need to pay for admin costs and copying and each organisation have different protocols.

[Melbuckton in reply to CDreamer]

Oh wow. Firstly I have asked my surgery 3 times for the patient access form and they always refer me to the nhs app not patient access.

The rest of your email should be posted in every surgery! A lot of hard won information much appreciated.

Mel

[Hidden]

Looked at my Patient Acess notes this morning to see if a letter had arrived from arrhythmia nurse as promised. Just noticed a letter received 13/8 was put on my notes 16/10. 😱

[Barb1]

My results are sometimes sent via Egress which you have to register for. I totally understand your frustration with personally having to chase up results. We should not have to but that's the reality.

[Ianc2]

Keep on building a file and take it along with you from time to time. Make careful notes of whatever you are told and always write up what they say they are going to do next, and when they are going to do it.

May I suggest you read 'I keep six honest serving men' by Rudyard Kipling'. It is well worth reading and you can access it online if you wish.