UK Keratoconus Self-Help and Support Association

Firstly I am thankful for the nhs and fact I have had my grafts free.

Last year my cornea graft operation nearly got cancelled because they lost my file.........and even
had to turn up to a dummy appointment just to see if my file would turn up......??
( cornea nurse ) did that so the specialist new that my file had gone walk about...

A specialist can refuse or should refuse to operate with out notes.

Its now just over one year from my graft (sep 19th 2008) and I would say at least five
times my file has gone walk about. Along the way I did phone the manager of Patient
records who looked at the situation.

Any way last visit my file went missing.......important because I had problems.

Tomorrow I have my stitches and will my file be there?

lucky with my consultant he has got use to my file being missing.

I think its time I wrote a letter.

also over the twelve months my appointments have been cancelled alot
by the hospital ( not helped my care)and even dropped off the appointments list??!!
only through getting in contact with my consultants sectary put me back on course
and me being vigilant.

the current situation with having blood vessels under my eye lids was found by my optician
who was doing routine check up for my other eye!

to every one out there....... do be strong with your Hospital and your appointments.
overall I would say the over care management of my cornea grafts has not really
been brilliant. The operation was brilliant but the after care been poor.

At the end of the day its left to you to sort matters out so be strong!
( because nobody else will sort it out for you ) so you have to be strong.

So dont think that every thing will be smooth running.

Also I had to deal with state over benefits and this was a nightmare and took
about 6 to 7 weeks to sort out...

Also I was called to a benefits interview and this put my stress levels at the worst
point and I didnt really need all that...when your coping with sight problems.
( am sure my blood pressure went through the roof with worry ) possibly most difficult
moment.

luckly I have a lovin family around me who have been supportive.

I can say If I was alone, I think I may have given up........there has been so much
to sort out and its not over yet.....

I am greatful to have my family and there love.

Remember you have to be strong and if your not a strong person you will be!

Theres a lot spin around these day about care and benefits how brilliant it is!
I found out its a battle most of the time......

regrettably eye problems can have a huge inpact on your life and am sure
the main members of the forum would agree.

sorry to be so frank and honest.

Luckly we live in the UK and the operations are free and gives hope to all.
may it continue.

I must admit that since i have got with my now husband, we have gotten stronger about my appointments being cancelled (regular occurence previously) as well as being proactive at my appointments, asking questions etc. Usually i get him to phone up when i receive a cancellation to an appointment and he gets me in at least the same time (within a week or so) or before my cancelled appointment. This i put down to a combination of a couple of things, one being he is more composed where as i get emoitional which doesnt get you anywhere when talking to appointment clerks and he works computer related field kind of within the NHS, so know how the nhs works and what to say and to whom.
We have also gotten stronger about asking for someone who knows about KC - within my hospital i usually got to see joe bloggs who is on rotation who didnt have anyclue about new and upcoming treatments for KC - i knew more about intacs and CXL than most.


I suspect how to talk and approach the staff at nhs is part of the trick, i dont get anywhere but my hubby does. i am bolshy, blunt, tactless (emotional when it comes to my own health) and only sometimes calm whereas my husband is calm, composed, polite and forceful when dealing with the nhs.

Sorry to hear of the problems you have had with losing of files (they did this to me after i got married, more understandable as i changed my name), cancelled appointments etc. could you ask for a copy of your file and then keep that with you incase they lose it at inopportune times(ie when having problems). you should be entitled to your file under DPA and/or freedom of information act, though you may need your request in writing.

I have always believed in patient retained medical records, but I dontt
think that many people agree.

Andrew

stiches our out! wooooooooooo woooooooo

and yes I was right! no file again turned up............so
will write to the manager of patient records over the weekend.

Also there still going treat me with drops and not tablets.

Few!

Good news

bad news: I understand that patient records can go missing in the private and public sector, but there is no excuse in either. all the best with your letter.

Good news!

Every good wish

Andrew

great news about the stiches etc, bad news about the file missing again.

Working in local authority i know the current level of "hassle"/memos we are getting about keeping individuals records and information safe and secure, so i can guess that the NHS is getting the same stuff being a goverment body.
As Andrew says it does happen occasionally but to keep happening suggests that your file isnt being kept in the right place is marked incorrectly, are you at the hospital for any other treatment and that department are keeping hold of your file? Guessing you havent changed your name, but that is another reason why files go walkabout - i know as it happened to me when i got married; they filed it under my maiden name but looked for it under my married name
Good luck in getting the patient records manager to sort it all out for you. the scary thing is that if you had a problem and went to the emergency department (eye or general) they wouldnt be able to access your records as quickly as they should so therefore take longer to treat you - that aint good news. Also if the file keeps going walkabout, is it being kept up to date with information from the appointments when the file isnt there?

I would say from having my graft in sept 19th 2008 to sep 19th 2009
rougly I have attened clinic about 9 to 11 times.

At least on 7 times my file has not turned up.

Now they write temporay note files and have about 3 but who knows
where they are too.

I have phoned the patient records manager twice before and he did find my file
but the last three times now its failed to arrive.

my consultant said ' looks like your file gone to south pole again' said yesterday.

just got silly now.

My notes folder has fone missing a few times.
I used to think this was GREAT news cos the people seeing me wouldn't have all the bullshit written by Guess Who (?) in front of them.
Now it seems if they can't find the file with the actual apptmt reports and sketches, someone gets the job of printing off all the recent correspondence again to put into the pink "temporary" file.
SO they have the recent bullshit letters and none of the sense from years back.
Aarrghhhhh!
generally seem to be someone is getting ehind hand on the correspondence and hasn't done the last batch of letters and sent the files back.
I have now got my record noted as "DO NOT WRITE TO GP" and no GP name and address so this shouldn't happen.... however, will probably only confude the system further.
Fully agree it is high time we all had our own records - copies if not the only copy.
Mind, if we know what has been hppening to us, we could probably give the medics who see us "next time" a better accont that trying to decipher the notes - last person's handwriting, etc.
If only the medical profession were all prepared to believe that anyone with something wrong with their eyes actually had a few brain cells to ru together!
Cynic? me?
Rosemary

Some of us have been trying for years to get patient retained records in Scotland, but to no avail; I think thatt hey imagine that the big computer thingamajig is a better option.

(by the way, thingamajig and thingamabob are in the OED)

Andrew