patient consent issue- can an endocrinologist take a urine iodine test--

which i thought was being done to see if i was iodine deficient-- and waited two months to finally hear the results--when i rang his secretary...only to be told i can't have the results AS THIS HAS been done for the endos own personnel research and that he has discharged me as well.. i am flabbergasted & angry to say the least, i never was informed that this was for his own research and not for diagnostic purposes to treat my thyroid if necessary, i never gave permission/consent and rang the hospital legal department, to ask if he should have informed me and if he had needed my consent to take that urine test for his research and they replied YES he should have on both accounts, what infuriates me is that after one year he only gave this urine test and one antibody test and the urine test i can't get the result... please anyone give me any opinions any at all--is this common? i know i probably have a case to complain, but really i want the result as it maybe clue why i feel so un well-- help please

13 Replies

That's appalling! You should most certainly complain! There may be information in those test results that could answer some of your questions about your health! I hope you get somewhere with your complaint. I'm sorry I have no words of wisdom to offer you. I am quite shocked that he could do this!

Carolyn x

thank you for response-- am i allowed to say his name or indicate in some way, to stop others from going through this-- ??probably not-but for awhile i wouldn't tell anyone to go to bangor endo--till a new one arrives

I think what you just said is fine. This site used to have a hospital review section which others found helpful. It's a shame we don't have that any more. You weren't allowed to use names on the reviews but at least people knew whether to bother with that hospital or not. I wonder if they will ever bring it back...

thank you...

the best way to complain is -- in my personal experience -- directly to the CHIEF EXECUTIVES DEPARTMENT at your local trust [ call the hospitals switchboard and ask to be put through ] ...... if your endo/consultant has asseeded THEIR OWN RULES --- which seems to be the case here --- they have the ultimate responsibility which includes allowing you access to ALL the results [ data protection act == LAW== ] which they cannot supercede or ignore ... alan

wow i had forgotten about the data protection law--i do have a right to see those results--thanks great help,

freedom of information act? is it

Data Protection Act 1998. Check out the hospital website or contact the PALS officer re obtaining your personal medical records. Mine requires the downloadable Access Request Form + witness signature + copy birth certificate. Request should be fulfilled within 40 days & can cost £10 for electronic or £50 for manual & electronic records.

I would be very clear that you do not expect to wait 40 days or pay to access your records and do not absolve the hospital of breaching your privacy until you've taken legal advice.

Nice one Alan!

ok fair enough i guess i can't--just was trying to spare someone--one year of waste.. ok got it..

I would strongly suggest that you speak with the Information Commissioner's Office - they are red hot on anything like this and have enormous powers. It's important that you follow procedure.

Needed to speak to them yesterday re a data protection breach of my personal information - extremely helpful and said they will assist me with my complaint.

Check out their website where there's lots of helpful info.

Good luck, Endo obviously needs a smack.

If you haven't consented to participate in his research he is NOT allowed to use the data from your test. Besides complaining i would also be on the phone to his secretary to inform her you do not wish to participate in his research (if that is the case of course) and insist your personal data is removed it is outrageous and i would have thought the ethics committee would also have something to say about it (all research that involves human subjects has to go through an ethics committee dont know how to contact them though).

thank you to everyone who has replied ! i am now armed with what i need to do--to get satisfaction and my test results, this forum is invaluable. grateful it exists--over & out :) sky00

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