Mislaid medical notes

I was given appointments for a new set of 3 eylea injections.at 2 weeks intervals after having been unable to receive treatment for my AMD in L eye since.Feb. 2019. Finally got the first one of the injections and everything was ok, That was 8 weeks ago. Just before my second one was due the appointment was cancelled because my medical notes could not been located. I was told that a number of staff are engaged in trying to find them but treatment cannot be given without them. It does not help that I have been visiting 3 other departments at the same hospital besides the eye clinic and apparently all files are kept in one single folder.. I would have thought they have a backup system? I have the number of person who deals with it and she keeps in touch with me occasionally. I call myself lucky that my eyesight has not suffered too much though I desperately nee new specs but was advised to wait until at least after the loading ltest loading dose. Any advise on how to solve the mystery of the missing files? Thank you.

[Hidden]

Hello ayayay! Lovely to hear from you, wish the circumstance was better x

My hospital has an electronic system as well as the paper files.

Even if yours hasn't ( which I find hard to believe) I would imagine the consultant's secretary at least has her files of the letters she has typed up for him - these should include the review notes where the new treatment regime was decided. My review notes have relevant clinical information on them. I don't understand what info your missing paper file has that is so necessary pre injection?

Given the year's delay in your treatment this current situation is unacceptable and I would be writing to PALS, copied to clinic manager, to set this out and asking on exactly what basis your schedule has been cancelled given the potentially detrimental effect.

As to the likely whereabouts of the file, the last dept you attended should have returned them to the central repository. So they're either still in that dept. waiting to be actioned by the secretary there ( or were you sent for scan etc, they may be there), maybe incorrectly placed with other files in that dept, or misfiled centrally.

The people searching should obtain all the clinic lists for the relevant dates you attended and check your file isn't with one of those other folks'.

But as I say, you should not be made to suffer! It's outrageous. What's happened to common sense and putting the patient first?!

Even if they don't have an electronic backup, why cant they set you up using the last review letter as if you're a new patient having the loading dose?

Does your eye consultant know what's happened? He at least should understand the criticality of the timing.

I'm afraid I would be standing in my clinic calmly making a fuss.

Good luck getting it sorted xxx

[Hidden in reply to Hidden]

Hi eyesright and all you other friends who have replied to me. I have to make my response short as I am still unwell and weak after my massive op. Progress is very slow. However, regarding the eylea injection, I have now received a new appointment on the 3.rd March, One of my THREE ophthalmic consultant - and I don't know why I have three - has decided to give me my second injection, using a temporary file. I have been assured that my notes have been traced back to the library of the eye clinic But where seems a mystery. I should have had my third on 9th March, but I suppose its better late than never, Thank you all.

[Emelinep]

This happened to me at my last appointment and I had just decided to sit there until they treated me when my notes were found. I cannot understand why they couldn’t treat me. I was only going for an injection, no scan or review, so what was the problem? Like you I had recently visited another hospital department. I hope you are treated soon.

[fed13]

Ayayay, I am so sorry this has happened to you. The advice given here is excellent. Sadly in today's NHS, (I'm assuming here it's the NHS? But I may be wrong), you have to fight your corner. The NHS is the envy of the world, but at the present time, it is hopelessly overwhelmed: it has unfilled posts, and is grossly under resourced, and in dire need of a cross party Royal Commission to sort out why it is in such a mess.

I found PALS the most use. Following that help from my GP and MP.

Now I get appointments when I should; there are more clinics organised, less waiting time in clinic, but you have to be prepared to make a HUGE fuss. It does work though!!

Don't be afraid to shout from the rooftops! The more of us that do this the better.

PLEASE let us know how you are getting on. My heart goes out to you. You're obviously quite poorly and it's difficult to battle on. Easy for me to give this advice. Try PALS for starters! Big hug xx

[sunshine00]

fed13- the NHS is not the envy of the world.

[Hidden in reply to sunshine00]

I must agree to some extent as I have experienced quite a number miner and major disasters during the last year, but I could also mention some wonderful experiences.

[rosyG in reply to Hidden]

good to hear from you Ayayay! I hope you get sorted out soon!

[Hidden in reply to rosyG]

Thank you rosyG. It's much appreciated. xxx

[fed13 in reply to sunshine00]

Sorry you feel that way, but I can understand why. Sounds patronising, but I don't mean to. Recently the NHS has deteriorated quite shockingly; and I've had some shocking experiences. It's down to austerity, the burgeoning population, and creeping privatisation, in my view. I keep saying this: that we need a root and branch overhaul of the NHS. I've lobbied my MP re this, and in case you think this is not appropriate for this forum, it was all about my experiences, (mercifully sorted now), trying to get timely treatment for my AMD on the NHS. So yes! I guess you maybe right, sunshine00. Have you had bad experiences with your AMD and the NHS? Please tell me. Did you complain? As I've said try PALS, then your GP and MP! It worked for me. But my first port of call was the Macular Society, when I couldn't initially get treatment for my wet AMD on the NHS.

Having said all that personally I think the NHS beats having to fork out for medical insurance and private treatment, because it is prohibitively expensive to most people. xx

[springcross]

Hi ayayay. Great to hear from you, I've been wondering how you are. Sorry to hear that you're having problems with your records - it makes them look inefficient doesn't it? At least you will be having your injections. Sorry to hear that your progress is slow but after what you have been through, I'm not surprised. I hope you go from strength to strength each day. Thinking of you. x

[Hidden in reply to springcross]

Thank you so much. I am much in need of encouragement and cheering up. xxx

[springcross in reply to Hidden]

You have been through so much. Major surgery like you've had will obviously take a long time to recover from - baby steps. You are very brave and obviously strong - long may you continue to be so. In the meantime, know that there are people here who are thinking of you and wish you well. xx