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Author Topic: HIV clinic and confidentiality breach  (Read 4142 times)

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Offline Zohar

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HIV clinic and confidentiality breach
« on: December 01, 2011, 09:40:08 AM »
When I registered with my clinic I filled in the standard form that all new patients have to fill in, and there's a question asking if you will give your consent for your clinic medical records to be shared with your GP - I ticked 'No'.

Recently, I discovered that my clinic sent a letter to my GP detailing information about my HIV treatment, which constitutes a patient medical records confidentiality breach.

Has anyone here in the UK had any experience of this, and know where I stand in terms of avenues of complaint, redress, rights etc?
''Poor is the man whose pleasures depend on the permission of another.''

Offline Grasshopper

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Re: HIV clinic and confidentiality breach
« Reply #1 on: December 01, 2011, 09:53:41 AM »
Your GP is there to take care of your general health. Why would you object to him knowing your HIV status since he/she  is also bound by confidentiality rules ?

Offline wolfter

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Re: HIV clinic and confidentiality breach
« Reply #2 on: December 01, 2011, 09:58:21 AM »
Your GP is there to take care of your general health. Why would you object to him knowing your HIV status since he/she  is also bound by confidentiality rules ?


I'm sure he appreciates you insight, but that doesn't address his concerns.
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #3 on: December 01, 2011, 10:01:04 AM »
I'm sure he appreciates you insight, but that doesn't address his concerns.

Thanks, you're right.

This isn't a thread about whether one should tell one's GP but, rather, what to do when, against their own standards and procedures , patient confidentiality has been breached.

« Last Edit: December 01, 2011, 10:04:47 AM by Zohar »
''Poor is the man whose pleasures depend on the permission of another.''

Offline newt

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Re: HIV clinic and confidentiality breach
« Reply #4 on: December 01, 2011, 10:04:04 AM »
Complain to your clinic it is a breach of confidentiality if you said no to your GP being told.

There will be a formal complaints procedure. You might get an apology and won't happen again statement. That's about it.

- matt
"The object is to be a well patient, not a good patient"

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #5 on: December 01, 2011, 10:06:40 AM »
Complain to your clinic it is a breach of confidentiality if you said no to your GP being told.

There will be a formal complaints procedure. You might get an apology and won't happen again statement. That's about it.

- matt


Is there any way that GPs can be un-told i.e have that information struck off from your GP's medical records?
''Poor is the man whose pleasures depend on the permission of another.''

Online mecch

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Re: HIV clinic and confidentiality breach
« Reply #6 on: December 01, 2011, 10:22:14 AM »
Can't you directly ask them to remove it?
“From each, according to his ability; to each, according to his need” 1875 K Marx

Offline Ann

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Re: HIV clinic and confidentiality breach
« Reply #7 on: December 01, 2011, 10:27:03 AM »
Is there any way that GPs can be un-told i.e have that information struck off from your GP's medical records?

This is probably something you'd have to negotiate for with your doctor. Do you have a decent relationship with your GP? If so, it shouldn't be a problem for him/her to remove the references. It may be as simple as removing the offending letter. You'd have to ask if any of the information was copied into any other sections of your file.

When I was newly diagnosed and didn't want my info to become common knowledge at my GP's surgery I had all correspondence from my clinic sent to my home instead of the GP's. (For my daughter's sake, she was much younger then. I'm completely open now.) I would take the most recent letter to any GP appointments, but didn't allow it to go into my file. I still use this system today, but only so I have the letters for my own records, not because of any confidentiality concerns.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #8 on: December 01, 2011, 10:41:37 AM »
Hmmm....it's a bit of a tricky one as I'm at a group practice so have seen different GPs over the years, so don't have an established relationship with any of them.
''Poor is the man whose pleasures depend on the permission of another.''

Offline Hoover

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Re: HIV clinic and confidentiality breach
« Reply #9 on: December 01, 2011, 12:32:15 PM »
Be thankful for even the appearance of confidentiality laws!
My lab told everyone in our small town my results!
My doctor, who is also my friend, has let the name of a few patients slip over drinks.....

Hoover
Infection date: March 16, 2010
20/05/10 - CD4 348  VL 58,000  Lymph nodes in jaw painful!  Antioxidants started.
01/06/10 - CD4 428  VL?
24/06/10 - CD4 578  VL 9,800
13/07/10 - CD4 620  VL?
04/09/10 - CD4 648  VL?
01/11/10 - CD4 710  VL?   CD8 972
16/12/10    CD4 738  VL?  CD8  896   
02/02/11    CD4 520 (month of parasites and new lab)
14/03/11 started Truvida and Sustiva (Efavirenz)
04/07/11 CD4 686 VL 75 CD8 588  41%
10/10/11 CD4 757  45%  VL UD

Offline Ann

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Re: HIV clinic and confidentiality breach
« Reply #10 on: December 01, 2011, 12:38:45 PM »
You'll have to pick the one you know the best or feel the most comfortable with and make an appointment. You may want to try to stick with one from here on out. If your hiv clinic is anything like mine, they'll want you to see your GP for anything not directly related to hiv, so it would be a good idea to develop a relationship with one that you like.

My GP surgery is also a group practice and while I have made the effort to get to know them all (for when my usual GP is away), I mainly stick with one. I've got him trained up real good in relation to managing hiv and I dread the day when he retires and I have to train another one. He only came to practice on the Isle of Man with an eye to having a quiet life pre-retirement. He didn't bank on me being one of his patients, I guess. ;D
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #11 on: December 12, 2011, 02:25:19 PM »
I went to my GP and viewed my medical records today and under 'Active Problems' the first thing listed is 'HIV infected', along with the date I was diagnosed. Curiously, there's no reference in the records to where this information has come from, and when.

One of the issues here is that because they don't deal with my HIV care, there's no information about my treatment. My viral load is undetectable and has been for more than a year, so it's an arguable point as to whether HIV is currently an 'active problem'.

« Last Edit: December 12, 2011, 02:27:11 PM by Zohar »
''Poor is the man whose pleasures depend on the permission of another.''

Offline Ann

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Re: HIV clinic and confidentiality breach
« Reply #12 on: December 12, 2011, 02:33:49 PM »
Any chronic condition is usually listed as an "active problem". For example, my herpes is always listed that way in my file at both the GPs and at my hiv clinic, despite the fact that I have been on acyclovir prophylaxis years and haven't had an outbreak in a while. However, the fact that I'm on acyclovir is always noted.

There doesn't seem to be a lot of reason to have hiv listed in your file if they aren't going to at make note of your current meds at the very least (to guard against drug/drug interactions), and a snapshot of your current numbers ideally as well. If they're not listing any pertinent info, why bother?

 
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #13 on: December 12, 2011, 02:53:14 PM »

There doesn't seem to be a lot of reason to have hiv listed in your file if they aren't going to at make note of your current meds at the very least (to guard against drug/drug interactions), and a snapshot of your current numbers ideally as well. If they're not listing any pertinent info, why bother?


Yes, this is what I feel  too since, in reality. they've only got part of the story, which isn't very useful in clinical terms. And perhaps more so, given that I'm on an experimental ARV regime that they may not be particularly knowledgeable of.

Just to clarify, my clinic did send a letter to my GP but when they became aware of their error they contacted my practice to say it was a mistake and that it should be removed. I've seen the note that was made of this on my file.

BUT....my HIV status still remains on my record.

I've now made an appointment to speak to a doctor over the phone next week so they can confirm where the information has come from (apparently, there's a small possibility another agency may have written to my GP without my knowledge - benefits/DWP perhaps?), and then see about how to get it expunged from my records. Whether or not that's possible, remains to be seen....
''Poor is the man whose pleasures depend on the permission of another.''

Offline Ann

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Re: HIV clinic and confidentiality breach
« Reply #14 on: December 12, 2011, 03:23:49 PM »
Why would you think the DWP would have the information that you are hiv positive? If they do have that information and even if you gave it to them, I think they have to gain your permission to inform other agencies, including GP practices. (if you are on Incap, you can have your doctor sign you off with "chronic viral illness". That's the phrase my hiv doc recommended to me years ago.)

You might want to have a look around the DWP website.

You should also learn your rights as a PLWHA under the Equality Act 2010. We are covered under it from point of diagnosis. It never hurts to know this stuff.

If you'd like me to, there's someone in Liverpool I can ring tomorrow during business hours - he's a walking encyclopedia when it comes to issues like yours. Let me know. You can always PM me if you wish to continue the discussion in private.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #15 on: December 12, 2011, 03:58:05 PM »
Why would you think the DWP would have the information that you are hiv positive? If they do have that information and even if you gave it to them, I think they have to gain your permission to inform other agencies, including GP practices. (if you are on Incap, you can have your doctor sign you off with "chronic viral illness". That's the phrase my hiv doc recommended to me years ago.)

You might want to have a look around the DWP website.

You should also learn your rights as a PLWHA under the Equality Act 2010. We are covered under it from point of diagnosis. It never hurts to know this stuff.

If you'd like me to, there's someone in Liverpool I can ring tomorrow during business hours - he's a walking encyclopedia when it comes to issues like yours. Let me know. You can always PM me if you wish to continue the discussion in private.

The reason I thought the DWP might be responsible is that I applied for Disability Living Allowance, which was declined, and I think I  put my status on there, and possibly GPs details, although IF I did that I would have stated that my clinic was dealing with HIV. That was a couple of years ago so I can't remember what I put on the form, but I'm just trying to think of all the possibilities for how my GP could have been informed about my status, other than this recent known breach with my clinic.

Thanks a lot for the offer help Ann. I guess the main thing I'd like to know if I can insist on having this  information removed from my medical records permanently.
''Poor is the man whose pleasures depend on the permission of another.''

Offline Ann

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Re: HIV clinic and confidentiality breach
« Reply #16 on: December 12, 2011, 04:18:55 PM »

Thanks a lot for the offer help Ann. I guess the main thing I'd like to know if I can insist on having this  information removed from my medical records permanently.


You're welcome, glad to help. I'll let you know what I find out.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline SANJUANDUDE

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Re: HIV clinic and confidentiality breach
« Reply #17 on: December 13, 2011, 08:40:34 AM »
it's certainly not place to question you, so I won't.  However, if it were me, I really wouldn't be concerned if another health care professional knew your status.  Did you know, at least in the US with the new, semi-new now, HIPPA laws, they can't even acknowledge the fact that they know who you area.  This is whether you are being treated for HIV or a common cold.

http://timehasshownme.com
10/2011-CD-4-598-Undetectable
01/2012-CD-4-758-Undetectable
04/2012-CD$-780-70 Viral Load
08-2012-CD4-846--20 viral load
02/2013-CD$ 865----20 Undetectable Viral Load
08/2013- CD4-898----<20 undetectable viral load

Offline Basquo

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Re: HIV clinic and confidentiality breach
« Reply #18 on: December 13, 2011, 01:24:09 PM »
James, it's HIPAA, not HIPPA, and there are circumstances when they can and do acknowledge who you are and what you're there for. But Zohar's in the UK so it doen't apply to him.

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #19 on: December 15, 2011, 07:47:17 AM »
I've just come across the following on the THT website:

Your wishes should be respected. For example ...you could say that you don’t want information passed on to other health workers – even if this could make it difficult for them to give you the right treatment.

Confidentiality is also protected by the law, and it would be possible to take legal action against someone who has breached your confidence. Also, doctors who break the rules could be “struck off”, which means they can’t work as a doctor any more.


http://www.myhiv.org.uk/HIV-and-you/Your-healthcare/Confidentiality
''Poor is the man whose pleasures depend on the permission of another.''

Offline weasel

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Re: HIV clinic and confidentiality breach
« Reply #20 on: December 15, 2011, 11:09:19 AM »
James, it's HIPAA, not HIPPA, and there are circumstances when they can and do acknowledge who you are and what you're there for. But Zohar's in the UK so it doen't apply to him.

    My health Dept.   OUTED ME !      I live in a town of 57 people !

      It is common pratice in S.E. Missouri for the Heath Depts.  to " SHARE "   what is going on  :o

        It is against all  HIPAA laws , But the sqeaky wheels get thrown out of  RYAN WHITE !

         I know 6 people that have complained about loose lips and now are Not getting Rayan white !

             Me included  :-\

                                                                Pisses me off  :-X

                                                                                           Weasel
" Live and let Live "

Offline denb45

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Re: HIV clinic and confidentiality breach
« Reply #21 on: December 15, 2011, 11:31:06 AM »
I wished they had HIPAA laws 20 yrs ago  :-\  I lost a very good Carree over being outted, you younger HIV indviduals now-a-days just don't know how lucky you are to have these laws now, these things didn't exist for many of us LTS during the very Dark ages of AIDS 20 yrs. ago, I remember when no land-lord would even rent to you, if they found out you had teh AIDS  :-[
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Theyer

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Re: HIV clinic and confidentiality breach
« Reply #22 on: December 16, 2011, 03:18:06 PM »
My penion rights where made null and void ,  health care provision in the pension made null and void.If I had kept quiet and not wound up the pension I would be oh so comfitable today.But in the UK there was a period before the anti discrimination laws kicked in and AIDS intolerance was high big biz got away with this crap.


REgrets i ave a few..........

mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline newt

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Re: HIV clinic and confidentiality breach
« Reply #23 on: December 17, 2011, 12:44:43 PM »
Zohar

You clinic was wrong to pass on this information, and I am sure will be at pains to get it right in future/apologise if you complain formally or informally.

Getting the info off your GP notes, tho, will be hard. There is a process to try and do so and I can send you a link about this if you want, but I believe you are unlikely to succeed (sucks, eh?).

- matt
"The object is to be a well patient, not a good patient"

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #24 on: December 19, 2011, 08:59:21 AM »
Zohar

You clinic was wrong to pass on this information, and I am sure will be at pains to get it right in future/apologise if you complain formally or informally.

Getting the info off your GP notes, tho, will be hard. There is a process to try and do so and I can send you a link about this if you want, but I believe you are unlikely to succeed (sucks, eh?).

- matt


Thanks, Newt.

I would be grateful if you could send me the link (although perhaps it might be useful to have it in this thread in case anyone else would find it useful).

I'm curious to know why you think it's 'unlikely' that one would be unsuccessful in having it removed from one's records. The GP was sent the information in error, and against my wishes - a right to confidentiality that is enshrined in law. That being the case, how can it be argued that they have the legal right to retain it?
''Poor is the man whose pleasures depend on the permission of another.''

Offline Ann

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Re: HIV clinic and confidentiality breach
« Reply #25 on: December 19, 2011, 12:21:10 PM »
Zohar, I think it might depend on how well you get on with your GP. I get on great with mine and I have no doubt that he would remove information that didn't necessarily need to be in my notes. However, I used to see a GI doc at my local hospital who, if I'd ask him to remove something, probably would have written it down every chance he got in big red letters. He was a spiteful so-and-so.

I haven't been able to get in touch with that fellow I mentioned last week - I'll try again this week.
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline newt

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Re: HIV clinic and confidentiality breach
« Reply #26 on: December 19, 2011, 03:10:11 PM »
Quote
how can it be argued that they have the legal right to retain it?

Because, regardless of source the information, it is arguably relevant to an understanding of your health, and to remove means someone must judge it being present is detrimental to your wellbeing and agree its removal, and in doing so record the fact it was removed and who asked for the info to be removed. Which prob means any GP who see info removed will ask what was it?

Your rights under medical confidentiality and the Data Protection Act have been breached, and you are entitled to redress, but health and social care records have special rules about removing information which are not very clear cut.

PDF booklet link: http://www.nigb.nhs.uk/guidebooklet.pdf

- matt
"The object is to be a well patient, not a good patient"

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #27 on: December 19, 2011, 09:20:26 PM »
Because, regardless of source the information, it is arguably relevant to an understanding of your health, and to remove means someone must judge it being present is detrimental to your wellbeing and agree its removal, and in doing so record the fact it was removed and who asked for the info to be removed. Which prob means any GP who see info removed will ask what was it?

Your rights under medical confidentiality and the Data Protection Act have been breached, and you are entitled to redress, but health and social care records have special rules about removing information which are not very clear cut.

PDF booklet link: http://www.nigb.nhs.uk/guidebooklet.pdf

- matt


So, what exactly is this redress? It's a clear confidentiality breach, which breaks the law.

But from what you're saying it sounds as if they are basically able to get off scot free, with no satisfactory resolution for the injured party.
« Last Edit: December 19, 2011, 09:29:32 PM by Zohar »
''Poor is the man whose pleasures depend on the permission of another.''

Offline wolfter

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Re: HIV clinic and confidentiality breach
« Reply #28 on: December 19, 2011, 09:28:48 PM »
Redress is basically your ability to make you whole once an injustice has been done.  If you're looking for a windfalll, it won't happen even with a clear violation.  As someone who has worked both sides of this illness, I understand the dynamics and encourage you to look within and ascertain what you wish to accomplish. 

Wolfie
Complacency is the enemy.  ;)  Challenge yourself daily for maximum  return on investment.

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #29 on: December 20, 2011, 04:29:31 AM »
Redress is basically your ability to make you whole once an injustice has been done.  If you're looking for a windfalll, it won't happen even with a clear violation.  As someone who has worked both sides of this illness, I understand the dynamics and encourage you to look within and ascertain what you wish to accomplish

Wolfie

I want it removed from my records. That's what I wish to accomplish.
« Last Edit: December 20, 2011, 04:37:21 AM by Zohar »
''Poor is the man whose pleasures depend on the permission of another.''

Online buginme2

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Re: HIV clinic and confidentiality breach
« Reply #30 on: December 20, 2011, 07:50:49 AM »
Maybe this is off topic or requires a new thread.  Why are you so upset that your doctor has in his records that you are HIV positive?  You Are HIV positive.

I understand its not your HIV doc per se, and I don't live in the UK so things may be different.   But I don't understand the problem of your doctor knowing you are positive.  Thats just foreign to me.

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #31 on: December 20, 2011, 09:06:23 AM »
Maybe this is off topic or requires a new thread.  Why are you so upset that your doctor has in his records that you are HIV positive?  You Are HIV positive.

I understand its not your HIV doc per se, and I don't live in the UK so things may be different.   But I don't understand the problem of your doctor knowing you are positive.  Thats just foreign to me.

I think it would be better if a new thread was started for this so that this discussion doesn't get sidetracked.
''Poor is the man whose pleasures depend on the permission of another.''

Offline newt

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Re: HIV clinic and confidentiality breach
« Reply #32 on: December 20, 2011, 03:27:48 PM »
If you wish to proceed, the way forward is to go to your clinic's Patient and Liaison Service and complain about the breach of confidentiality, extract an apology and then enlist their help with trying to get the info formally removed from your GP notes. Perhaps an informal approach from your consultant to start will help/do the trick. But, I ain't gonna be optimistic. It is reasonable from your GPs' point of view to say this is relevant info and, however it was come by, is best retained. I do not understand completely the formal process for removal of health info from your GP notes so some expert advice may be in order. 

- matt
"The object is to be a well patient, not a good patient"

Offline Zohar

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Re: HIV clinic and confidentiality breach
« Reply #33 on: December 22, 2011, 07:23:56 PM »
After a difficult telephone conversation with my GP this evening, he eventually agreed to remove my HIV status from my medical records, although he was extremely reluctant to do so.

Whilst patients are legally entitled to not disclose their status to their GP, there's an overwhelming sense that you should anyway. Thus, when a confidentiality breach occurs, the clinic won't go out of their way to be supportive and GPs want to hold on to the information, which means you (can) end up with quite a battle on your hands.

I'm obviously relieved at the outcome, but the incident has caused me an awful lot of distress and anxiety, and I intend to write a letter of complaint to my clinic letting my views be known.

''Poor is the man whose pleasures depend on the permission of another.''

Offline newt

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Re: HIV clinic and confidentiality breach
« Reply #34 on: December 22, 2011, 07:27:58 PM »
Good

- matt
"The object is to be a well patient, not a good patient"

Offline Realist

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Re: HIV clinic and confidentiality breach
« Reply #35 on: December 31, 2011, 03:00:22 PM »
I must have missed this post.

Interestingly I have just written about a very, very similar issue - http://notdownnotout.blogspot.com/2011/11/when-your-medical-records-arent.html.

It took me a year and a half to resolve.
23/02/10 Tests confirmed
25/02/10 13100 220 24%
12/03/10 19800 372 19%
26/03/10 Atripla
30/04/10 58 286 23%
28/05/10 45 222 21%
25/06/10 UD 301 23%
24/09/10 UD 283 22%
01/12/10 UD 319 23%
11/03/11 UD 293 28%
10/06/11 UD 423 24%
23/08/11 UD 389 26%
28/02/11 UD 315 34%

I blogged it all http://notdownnotout.blogspot.com

 


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