Accessing Medical Records

[yorkiegal73]

I've just sent off the request to view all my psychiatric files, from when I was 16 right through to my last hospital admission. I'm really just curious to read them, and also a little suspicious of how long they've had me pegged as borderline, as they only told me in november. I've also always wondered just how much impact the views of my parents during my first referral have had on my subsequent treatment. Like many here, I'm sure, I've seen good shrinks and bad shrinks and I hate to think what some of them have written about me.

I'm seeing the SHO at my local psych hosp next week as a standard follow up appointment after being hospitalised in november/dec. I need to persuade him that I can cope with seeing my files. Does he have a right to ask me why? And does anyone know if such a request is routinely denied until you've been out of hospital for a certain length of time?

I know they can cut bits out if they think I can't handle it. Would they tell me if it was an incomplete record?

And lastly, to anyone here who has read their notes. Did it help or did it hinder?

[Marchmadness]

Hey -

What are you really looking for? And then when you read the files will

it actually help you? I mean whats the point? I understand that you want

certain questions answered, as do so many of us, how is it going to make

a difference? I have read my P-docs notes, but my therapist notes no, I

have offten wondered what she is jotting down. Then remind myself whatever

she is writing doesn't matter cause the treatment seems to be working. I don't

know of anyone getting complete files. Think about what your goal for getting

the records are, and will you understand what they are saying without judgment

against them or yourself.

Marchmadness

[yorkiegal73]

I know that my curiousity is partly due to paranoia. When I first asked for the form I was angry at the hospital and determined to see what 'lies' they'd written about me. However, a month on I'm feeling past the crisis stage and think I could handle it. I feel quite detached from my medical history. I was drunk for most of my twenties and can barely remember seeing various psychologists. I've being reading a lot about BPD since it appeared on my discharge form and I'm genuinly interested in looking at my notes to try and unravel the puzzle of who I am. I don't really trust my own memories or emotions anymore and I'd be interested to see what another person's perception of me at various times has been compared to my own.

[Marchmadness]

Hey -

You said you want to unravel the puzzle and find out who you are. You

can find out who you are through notes? You need to find out who you

are and who you want to be for you. Not based on what someone has

written about you on any given day. With BPD you can have so many

different moods that you may have been one way when you saw a dr.

and the next be different.

March

[rebeccaborderline]

Hi,

I understand your desire to see your records; I got mine, but I think I was perhaps more on the way to some recovery than you are right now? Hard to tell

I wanted mind coz it was some way of getting back control of my life; they are mine, about me. Like you I had horrendous gaps in memory.

The way I went about it was completely bypassing approaching the shrink personally; I wrote direct to the Medical Records dept; they then asked the shrinks advice and I got the whole lot (several pounds of loose photocopied paper, delivered in batches!). There are rules on whether you have to pay for the photocopies or not. My shrink said afterwards she would have been quite happy to have been approached directly. She also offered to discuss or go through anything that I found diturbing.

The actual records were partly a disappointment; I should have thought of this but a lot of the interesting stuff is handwritten, and just completely indecipherable! It was a bit of a shock some of it, but I was feeling quite well at the time so I didnt get upset by it. I actually had more sympathy with the MH services afterwards, the number of "incidents"! and hospitalisations!

The shrink can bar you from seeing all or any part of the records if its considered detrimental to your current health, and I dont think there would be much you could do about it, apart from let some time elapse and try again.

Good luck, only go ahead if you feel strong enough though, youre the best judge

rebeccaborderline

[Faerielight]

i only got mine when i took a therapist to court for assult, anbd they had a court order for my notes to be read out in court.

it was a shock on many levels.. firstly they had diagnosed me bpd qwell over 10 years before they told me 4 years ago. that pissed me off cos a psychiatrist had written UNTREATABLE through the diagnosis in capitals.

also, there was stuff saying i wasa hyperchondriact, when it turned out i did actuaslly have m.e/cfs and autoimmune hypothyroidism.

and another psychiatrist who took my life history writing "alledged abuse" and said noone could possibly have had such severe and multiple trauma, therefore i was making it up.

there were all sorts of other inaccuricies .

but when i showed the huge file to my psyc nurse, she was astounded that since my 1st od at 17 years old, the numerous times i tried to get help and was turned away, really saddened her, as the fact that i got no help till i was 32 meant i had lots more trauma in my adulthood, and my problems are now insurmountable.

that's my experience, with my notes, but everyone is different.

good luck, hugs, ivy xx

[icu_baby]

i only got mine when i took a therapist to court for assult, anbd they had a court order for my notes to be read out in court.

it was a shock on many levels.. firstly they had diagnosed me bpd qwell over 10 years before they told me 4 years ago. that pissed me off cos a psychiatrist had written UNTREATABLE through the diagnosis in capitals.

also, there was stuff saying i wasa hyperchondriact, when it turned out i did actuaslly have m.e/cfs and autoimmune hypothyroidism.

and another psychiatrist who took my life history writing "alledged abuse" and said noone could possibly have had such severe and multiple trauma, therefore i was making it up.

there were all sorts of other inaccuricies .

but when i showed the huge file to my psyc nurse, she was astounded that since my 1st od at 17 years old, the numerous times i tried to get help and was turned away, really saddened her, as the fact that i got no help till i was 32 meant i had lots more trauma in my adulthood, and my problems are now insurmountable.

that's my experience, with my notes, but everyone is different.

good luck, hugs, ivy xx

That really pisses me off too coz I was not told I had bpd and found out the same way you did, by gaining access to me files. I think that is negligent because even though an incompetent psychiatrist thinks BPD is untreatable, there are plenty of good psychiatrists that believe it is treatable and thus you would have probably switched psychiatrists to a more competent one earlier should you have read your medical files earlier I also got turned away too because I had bpd, it makes me sick. do you see people with "terminal cancer" get turned away, no, they get pallitative care.

I am glad you are finally getting the help that you need now.

icu_baby

[kib0ne]

FYI: Freedom Of Information Act 2000 Explanatory Notes http://www.opsi.gov.uk/acts/acts2000/en/uk...n_20000036_en_1

I requested my notes when I'd moved home out of one Primary Care Trust to another from the previous PCT, and besides having to pay £50 fees my request was dealt with promptly; they made no endeavor to find out if I was 'stable enough' to read them.

I'd say ultimately it was a great help to me.

[yorkiegal73]

thanks for the replies. i saw my psychiatrist this week for a standard follow up after being hospitalised. I forgot to ask him about it and he didn't bring up the subject either, but discharged me with no further treatment as i'm doing so well. Surprising what a bit of make up and smart clothes can do! I'm waiting for medical records dept to contact me but have discussed it with gp who said i can bring them into the surgery and we'll go through it together. I think he's quite interested himself as I've sort of become his pet project at the moment. Every time i go in there he has another load of students to ask me questions. I'm happy to do so if it makes them more considerate doctors.

[coastalbaby]

I've read my GP notes up to 2 years ago. That's when I found out about BPD- 2 psychs had said that, one was 8 years previous. They'd also mentioned other stuff- all I'd ever been told about was either that I had depression or I couldn't be happy 'cos I was still angry at my parents and there was nothing wrong. Some doctors weren't very professional in the tone they used. I was sad to read stuff like' I do consider the prognosis to be bleak..... ' 'I can't think of anything we can do to help her.' There are also various mistakes including missed appointments that I had not known about as the letters had been sent to the wrong address. So now I have a history of disengaging with services!!I'm glad I've read them tho' because now I can tell people they might as well be honest with me and when people ask what's wrong I can just say BPD (and enjoy watching the reaction as they won't have heard of it) rather than trying to explain how I get. I've been able to explain a bit about BPD to work too- as I kept getting into trouble, now at least they can see it's not me trying to be bad/naughty. If I was dyslexic they wouldn't tell me off for not being able to spell would they? If you can, I recommend you have someone go through your notes with you, as stuff can be difficult to read.

[Cechee]

I read mine but have not been seen by anyone for years.

I don't think your are crazy nor can anyone deny you the right to your records.

Mine helped...I had every diagnosis placed on me for every different Dr there is usually a different opinion.

Mine didn't make much difference to me either way.

Best of everything to you!

Christine

[monsterman]

I asked to see my note 2 years ago ... but was refused twice ... then they said they lost them ... my GP has files which i have seen but they are heavily edited and some pages are clearly ''missing''

My GP is a good bloke but the Mental health pros and clinics are evil incompetants who play with peoples lives.

[kib0ne]

I asked to see my note 2 years ago ... but was refused twice ... then they said they lost them ... my GP has files which i have seen but they are heavily edited and some pages are clearly ''missing''

My GP is a good bloke but the Mental health pros and clinics are evil incompetants who play with peoples lives.

They may have genuinely misplaced them in archives or wherever; which is shocking but the reality of it. Services are obliged to seek permission before they reveal anything 'third party' to you, and this could be an explanation for the editing and missing pages. I think a lot has changed in the past couple of years regarding access to files and there's support out there, i.e. advocacy to help service users gain access to files and support with dealing with the information in their files because for some people it can open a can of worms. I know I had some files from when I was in Local Authority Care as a teen archived and they failed to locate them but did eventually and it was some time on. It might be worth requesting to see your files again.

I asked about a month ago to see my notes under my current MH team, and I haven't had a response. I asked about it at my most recent appointment a week ago and was told that it had probably gone to head office for copying etc, but I think my pdoc is now up all hours of the night re-writing my notes because I've seen him drawing cartoons in my appointments, it's not really funny but you have to laugh :lol:

[monsterman]

My medical records may be denied to me... but appear to be freely available to the Police, social services ,DHSS ,DVLA and employers including sections that are not in the notes that my GP has ...it seems all and sundry have access to my medical notes .I have never been in any legal or criminal trouble so how come all the agencies have free access to my records .

[kib0ne]

Well how have they used the information, I don't understand why they'd have access? Have you sought any legal advice/advocacy on the matter?

[monsterman]

Yes I have sought legal advice as my medical records have been sent around all manner of un authourised parties, a lawyer who was helping me says that it appears that s Psychiatrist and a previous GP allowed the police access , but reason is unclear ,then the DVLA got hold of my records from the police and temporarily revoked my driving license which on appeal was restored ,but that cost me my job , we never got a satisfactory answer from them why?

Then my medical records seem to have been accessed by DHSS and my employer somehow got some info about my depression and that cost me my career .

Problem is I cannot get legal aid for these problems and the system is most unhelpful. My GP is very angry as well but what can I do it is too late now anyway ,I will never work again in the UK , i was an engineer , if I want to work it has to be outside UK.

Why and how they got access has never been disclosed to me , I could probably challenge it in court but cannot afford to.

Sorry ...I am so angry and its not so important now as i have much bigger problems ,I cannot trust bany one who is supposed to help[ me either all they have done has made my depression etc worse with their meddling .

I am not alone in this ,,a close friends medical records were also passed around in a similar fashion saying she was HIV+ and a Heroin addict for 15 years which is untrue ....fortunately for her it did go to court in a criminal case and her records have been ammended but the damage has been done to her . I actually helped her husband to borrow /steal her medical records when she was in maternity ward , we copied them and that was useful in the later criminal case when independant medical tests showed she did not have HIV and had never been a major drug user. She was aquitted of all charges in the case against her ...but is still a very damaged person.

jerry

[icu_baby]

Yes I have sought legal advice as my medical records have been sent around all manner of un authourised parties, a lawyer who was helping me says that it appears that s Psychiatrist and a previous GP allowed the police access , but reason is unclear ,then the DVLA got hold of my records from the police and temporarily revoked my driving license which on appeal was restored ,but that cost me my job , we never got a satisfactory answer from them why?

Then my medical records seem to have been accessed by DHSS and my employer somehow got some info about my depression and that cost me my career .

Problem is I cannot get legal aid for these problems and the system is most unhelpful. My GP is very angry as well but what can I do it is too late now anyway ,I will never work again in the UK , i was an engineer , if I want to work it has to be outside UK.

Why and how they got access has never been disclosed to me , I could probably challenge it in court but cannot afford to.

Sorry ...I am so angry and its not so important now as i have much bigger problems ,I cannot trust bany one who is supposed to help[ me either all they have done has made my depression etc worse with their meddling .

I am not alone in this ,,a close friends medical records were also passed around in a similar fashion saying she was HIV+ and a Heroin addict for 15 years which is untrue ....fortunately for her it did go to court in a criminal case and her records have been ammended but the damage has been done to her . I actually helped her husband to borrow /steal her medical records when she was in maternity ward , we copied them and that was useful in the later criminal case when independant medical tests showed she did not have HIV and had never been a major drug user. She was aquitted of all charges in the case against her ...but is still a very damaged person.

jerry

Hi Monsterman, I love the fact that you "stole" your friends records and ultimately got her off a charge, it reminds me of Eron Brockivich (can't spell the name)!

I think its a shame that you don't pursue this gross breach of confidentialty by the police which led to your discrimination in the workplace. You would have had a very strong case not only because you could get compensation but also as a matter of principle. Have you tried looking for lawyers that will take your case on as a no win no fee case if you can't afford a lawyer but don't qualify for legal aid at the same time?

cheers

icu_baby

[monsterman]

ICU baby ... its too late for me now ... even if I had the time to pursue a case i no longer want anything to do with such people ,,,and even if i won a case ..do you really think it would make a difference....no predudice and ignorance cannot be reversed by justice in this world and money does not help me ... I actually have money but it does not buy anything that can help me.

For me oblivion is the only option to sleep in peace forever would be blissful. I just need the courage or rage to finish it.

[icu_baby]

ICU baby ... its too late for me now ... even if I had the time to pursue a case i no longer want anything to do with such people ,,,and even if i won a case ..do you really think it would make a difference....no predudice and ignorance cannot be reversed by justice in this world and money does not help me ... I actually have money but it does not buy anything that can help me.

For me oblivion is the only option to sleep in peace forever would be blissful. I just need the courage or rage to finish it.

Dear Monsterman, I am sorry you feel so defeated to the point that these people have made you so upset to the point that you want to end your life over it. Your right a legal remedy would not necessarily take the pain they caused you and can actually be quite stressful. I guess the best option for you just have to try and forget it and move on, maybe that is the best way. I really don't have any answers. My opinion is that while compensation (even if you don't need the money) is far from ideal, it is satisfactory as you can get to an apology because those ignorant people would be forced to apologise to you albiet through their wallets and time to review your case. Its not the most ideal solution but I still do believe in justice, if you don't then what other hope is there. Anyway where I am from psychiatrists can only reveal confidential information through a court order. It seems strange that the police wanted your records. I hope you have another job now.

[monsterman]

I have to work under an assumed Identity in UK as Health and safety Nazis will not give me insurance clearance under my own name , depression reported to police and DHSS means I cannot work without medical clearances ... but its a catch 22 as no Doctor can say I will not be suicidal therefore they cannot give me medical clearance therfore neither will the police or DHSS so I cannot get insurance to work .

I am now more likely to be suicidal from the interference that has disrupted my career and future.

I dont care as I work mostly overseas now ... but in the UK I have to use a friends identity to work and thats getting very hard to do now.

Ah to hell with them all.. the NHS services are useless as well .

[brassed2bits]

I have just written to my GP to formally request access to my medical records.

They have called me to say that it is fine, and will offer me a time to go in a see them.

They have told me it will cost, but I am not sure how much.

I want to see my records from when I was very little. I want to see if anything happened to me when I was too young to remember, anything my parents might have done in the way of physical abuse that may help to explain things now.

Also, what they have written about me from the millions of times I have seen them over the years with MH problems.

Just want to see if I have been taken seriously all these years, I suppose.

[monsterman]

brassed 2 bits ....I wish u well

[persephone]

Monsterman, you paint a creepy picture of life in Britain.

Maybe you employer got records through an insurance company.

Medical details are most likely bought and sold like any personal details.

I believe that in Australia and the US you'd be considered unnatural if you didn't have depression.

Move to Spain. More sun on your face.

I read my records once while I was waiting on a trolley outside an operating room on pre-op.

No big deal. They didn't have much of a clue 20 years ago. Apparently I was "eccentric".

So for years I went around telling everyone I was eccentric. That was so funny.

[monsterman]

Well its all come on top again ... i was arrested yesterday when i returned to work for working under a false name ... now i am even more fucked ...DSS and taxman have free access to my medical records ... they are doing me for 6 different offences ... I have been told not to work in my profession ... that i will be audited which is a joke as my business partner has stolen most of my money recently ... so now i really have nothing to live for .

[Jantika6661]

I have just written to my GP to formally request access to my medical records.

They have called me to say that it is fine, and will offer me a time to go in a see them.

They have told me it will cost, but I am not sure how much.

I want to see my records from when I was very little. I want to see if anything happened to me when I was too young to remember, anything my parents might have done in the way of physical abuse that may help to explain things now.

Also, what they have written about me from the millions of times I have seen them over the years with MH problems.

Just want to see if I have been taken seriously all these years, I suppose.

I obtained my medical records from my gp surgery about 3 years ago and they cost me £50. There is a ceiling on how much they can cost you. It may have gone up but no matter how much they have to photocopy they cannot charge more than the ceiling price. I had loads and loads going back over 30 years. I found it was very useful and an eye opener. I am about to apply for my psychiatric records and will write here and let you know the outcome re cost etc.