UK Keratoconus Self-Help and Support Association

I'd like to request copies of all my records from the eye hospital, pictures of my scans etc so i can research my condition and treatment options with other optometrists to the greatest extent possible, seeing as the nhs really doesn't provide that much of a support network for KC. is this simply a matter of asking or will it be trickier than that?

I believe that you under the DPA you are entitled to a copy of your medical records, providing it would not be deemed detrimental to your wellbeing. I guess it would have to be requested in writing to your local clinic but dont quote me on that.

I think someone posted a while back about requesting personal medical records and the best way to go about it, but I am not sure who, where or which topic.

At your next appointment you could always ask for a copy of the scans or if they could do afresh one and print an extra copy.

Whenever my hospital has taken a scan I ask for a second copy and they are quite happy to print an extra one.

Not all scans give the same information, simple machine might give topography but no corneal thickness information, so if you are exploring second opinions those people amy wish to use their own equipment for their own piece of mind that they have the correct information.

You have to make a Subject Access Request under the Data Protection Act 1998 for access to your medical records.
The access can be in the form either of sitting down to look at your notes with a medical person with you to "explain" them (!) or paper copies.
You should put your request in writing - some hospitals will have standard forms, or write a letter tot he Data Protection Officer or similar - you can always enquire at th hospital who is the right person to approach.
They are entitled to charge you a reasonable amount for photocopying, though this is not defined.
A medic has to authorise release, and can withhold some info if they deem it is not in your interests. I'm told this is rare......
They do have to tell you if anything has been withheld and what.
I have also been told that if they do, you can then request the withheld info under the Freedom Of Information Act and they then have to release it.
Te controlling body for the DPA is the Information Commissioner's Officer in Wilmslow, Cheshire, and they do helpful little bookelts and have awebsite, thouite and a helpline phone number though I can't reach it now.
Good luck.
Rosemary

On those occasions when they hand you your notes between depts, I like doing the toilet-reading-dash

Last appointment, I sat in the cafe with a cup of tea dn a sandwich reading mine quite openly. Let anyone try to stop me!
Previous time, I think I went and sat outside with a cup of cold water.
Interesting the stuff you find there sometimes!


Must find the nearest photocopying shop tot he hospital some time!
Rosemary