Just mentioned to my Heart Failure Nurse that I needed to get my medical notes and she was aghast, querying why I would need them and explaining that I would need to apply to The Trust and they would make a decision on whether I had a valid case.
I was most surprised since I thought that this information was available to patients on request.
I actually want them as a relative (who is a specialist but in another field) has made a private appointment with a friend of hers who is a highly respected cardiologist, on my behalf.
Coincidentally, I have also been contacted by a heart specialist from Utah whom I know through business, who says he would like a look at my notes to see if he can be of any help.
These reasons are irrelevant however, I am just curious about the legality of a refusal. I intend to travel a bit in the months ahead and would like to be able to furnish a hospital with my notes if the occasion arises.
Any comments very welcome.
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P0rtnahapp1e
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I have checked and see that you are a UK resident.
In my opinion each and everyone of us should be aware of what is relevant to our health. We need to be in control. I say this because mistakes can occur and by being in control they can be rectified/ avoided.
My understanding is that it is your right to see your records.
I always ask consultants to send me a copy of the letter they send to my GP. This means that I know what is in it and it isn't just filed away unread at the surgery. This also applies to Nurses as I had a bad experience of one recording erroneously that I suffered from lightheadedness.
I recently applied for a Blue Badge and these copy letters were my proof of my cervical stenosis.
I also copy appointment letters as these are taken off you when you check in at reception. These too were useful proof in applying for my blue badge.
I have copies of every letter and report since my AF was diagnosed in 2004. This is the right of every patient. Not sure about total medical records but surely the freedom of information act applies when it is your records.?
That 'right' is very ambiguous Bob and not nearly as transparent as you would imagine. Having gone through a very rigorous process to 'see' the records which may be electronic or written, you are not automatically entitled to obtain copies and you will have to pay.
Retaining the copies of letters sent between doctors such as GP and specialist is definately the way to go! Easy to sign up for and costs nil.
I had a long conversation with our GP surgery manager about releasing records and you wouldn't believe the hoops they have to jump through before they can release records, so I can understand their reluctance to release notes when there is so much pressure on their time and why you have to pay.
The legal issue is always who 'owns' the records and what will the records be used for? The person who wrote them? The person about whom they were written? The employer of the person who wrote them?
The whole issue about Notes is a minefield - but letters are a different matter!
In the case of the NHS all records and notes and letters are owned by the NHS or GP practice who initiated and paid for tests, reports, etc.
In the case of private it is a bit more difficult because of the hospitals, the consultant's basically being self employed (in the wider sense not contractural terms).
However the rights to see, view, use will be defined under various rules, legislation, etc. This will not just be medical related legislation but also data protection, freedom of information, individual's rights, etc.
I sympathise with you - Northern Ireland is really behind the times in this area. My excellent GP authorised copies of all correspondence and test results for me but even that is not a complete picture of things and when he is on leave it's like cracking Fort Knox.
Like you, I asked a nurse for an ECG copy and was told I would have to ask the doctor as 'they (ECG's) are difficult to understand'. I get soooo irritated that the health centre receptionist can access my test results but I have to wait until my GP authorises a copy for me.
I don't know about the legality of the situation but it concerns me that there does not seem to be a complete medical file anywhere in the system as hospitals send only the documents ordered by the consultant. A medical friend advised that I should ask for copies for 'my personal medical file' which I do.
I am going to ask it to be noted on my Hospital notes that I wish to be CC'd into any correspondence. I recently had a CT of my kidney, an annual watching brief of a benign tumour and having heard nothing after six weeks asked my Gp who told me she had received a letter two weeks after I had the CT and that all was OK. Nice to know but a month earlier might have been reassuring. With my EP appointment looming and knowing I will probably not remember it all I think it's vital to get the information in a timely manner.
I saw a similar reply from BobD earlier, so for the first time in my life, I asked my GP for a copy of my latest blood test results. He was a bit surprised, but willing to give me them anyway. He did say that it was a good idea to keep my own file, as he said notes often get lost between the surgery and the hospital!
I have been down this road! I copy and paste a paragraph from the NHS Buckinghamshire website. I wrote to the medico-legal department, as requested, received the form but have not yet returned it as the fee is "up to £50" and my GP thinks they will have destroyed the one ECG I need, from 2008. Meanwhile my EP in South Africa is increasingly reluctant to treat me with potent drugs without an ECG. I have had plenty of AF episodes since then, but none recorded. You will need to have your signature witnessed. Good luck!
From the NHS, Bucks. The form mentions the data Protection Act 1990, Access to HelTh Records Act 1990. Find your local NHS website and type in Medical Records or similar:
How can you see the record we hold about you?
The Data Protection Act 1998 gives patients the right of access to their own records, held either electronically or on paper.
If you are receiving treatment you may arrange to discuss your records informally with your doctor or other health professional. Otherwise, you can write to the Medical Records Manager.
When we receive a written request we will send you a form to complete. This will provide us with the necessary information, including proof of identity, which is required to enable us to answer your request.
We are required to give you access to your record within 40 days of receiving your completed form.
We have a duty to make any medical or technical terms in your record understandable to you. You may wish to make an appointment to discuss anything you do not understand.
Understandable? What makes the medical profession think that they have a superior intellect to the rest of us?
My changeover notes were inadvertently left on my bed by a flurry of doctors while they went behind the curtains of the next bed while I was in hospital, so I photographed them with my phone. When this was discovered by another medical person who had no connection with my case , she said I was "Very bold"!
Strewth! I have an electrical business and if I send an engineer out to check a washing machine or dishwasher I will happily furnish the customer with a written report of why the fault happened, the prognosis, and how much it would cost to fix, with an explanation of the procedure. Is my life not as important as a £200 washing machine?
I was made to feel like a criminal. And I won't even begin on the story of trying to get my UK doctor to email my SA doctor! There were apparently issues of data security and my request was refused, even though there is no longer an effective postal system in South Africa. Data protection is more important than one's health, I guess.
@POrtnahapp1e I have also been told many times that I am BOLD> My response is that I am the CEO of Myself--so I am always proactive on my own behalf!! You the person who cares most about your own well being. In the USA, rights of patients are more liberal--even so-- when requesting my medical records from a cardiologists office in a large NYC hospital--the secretary said that they usually do not send records to patients. I calmly and politely told her that in the USA, of which her hospital is a part, any records about my medical condition, including all E
KG's, catheterizations, nuclear stress tests,etc. were my property as well as the hospital's and that I was legally entitled to copes of everything down to the last detail. I then explained that if they were not sent i would have a lawyer request them , but then the hospital would have to pay her legal fee and the court costs, and that I was not interested in suing anyone, m,erely in getting copies of my medical info, and if needed they could charge me per page. Another secretary I heard talking in the background told the 1st secretary I was right. I received most of the records.The details of the catheterization were excluded so I called and insisted I get them Finally they were sent. Everyone is afraid someone is going to sue them. So the patient's health is not always the first concern of the doctor. Doctors sometimes think if you show your records to another doctor in another hospital they may find an error in their diagnosis and a law suit may arise.
@POrtnahapp1e doctors do not necessarily have a superior intellect to all their patients. On numerous occassions patients actually teach their doctors' somehthing, because there is so much info available--a doctor cannot keep up with everything. One complaint I have is that the doctors give patients meds without knowing the full pharacology of the drug and it's results on numerous patients--the pitfalls and benefits. They can also do a genetic test of the detox system called P450CYP--system--pathways through the liver via which most prescription meds are detoxified out of the body. Then look at which pathways the meds you are prescribing detox through. If the patients pathway is underfuncuioning (a genetic poymorphism--tnedency)---- lower the dose or use another med. Also, of the various forms of the med, which are produced by fermentaton and bacteria and molds, and which are synthetic, which raise the blood sugar, and which do not. etc. In other words, match the drug to the patient, rather than experimenting on the poor patient by trying different forms of the drug. My husband and I have been able to do this because we paid to have these tests done in 2007--and we research the drug ourselvesw--I have to say that my ep was very brilliant--because I gave him my genetic test results--and he matched the drug to it on his own --realizing this was a good idea.
Good point! I will find out whether my EP will accept Alivecor records. Failing that, I may have to stop my drugs long enough to have an episode so I can go to A&E.
I have had copies from Paramedics taken in ambulance and refused a copy from A&E - completely insane I agree - but as I say, different organisations have completely different protocols and there is no uniformity - as you will see from this thread.
The overriding reason for this is interpretation and our laws of privacy which originate from Torte law. A hospital is an employer, therefore responsible for their staff therefore they will instruct their staff on who and when they can release test results to. Normally, in practice, you would get good information from your consultation with your specialist.
We had a very detailed discussion in our patient liaison team with our surgery manager about release of notes and she put forward some very legitimate reasons why they (our surgery) would be extremely careful before releasing in full ie - everything in record from birth, medical notes without due care to ensure they would not be 'injurious' to a patient reading them. The NHS guidelines were very complicated.
There is an obligation to inform and send copies of all tests to your GP - and you have the right to see copies of all correspondence between primary and secondary care - therefor much easier to go down the route of cc of all correspondence to obtain information.
It also depends upon who pays for the tests - e.g. I have bloods every 3-4 weeks, under my GP's budget - which means that unless I specifically ask that copies of the bloods go to my secondary care neurologist consultant EVERY time - they don't get to see the results.
There is an auwful lot right with the NHS and we love it but there are a few tweaks required on the admin!
@CDreamwe How can a patients' medical record be "injuurious" to the patient. ?? Through the unwarranted assumption of the doctor that the patient is too stupid to understand them or deal with them reasonably?? This is great prejudice against the patients.
Actually, I had to snigger when, after I had the temerity to ask my Heart Failure nurse about my notes,. "You want what?" she said loudly. Now I know how Oliver Twist felt when he asked for more. I expected Mr Bumble to come around the door and announce that I should be "hung". (Sic)
My understanding is that legally you have a right to see your medical notes but you don't have an automatic right to obtain copies and you will probably be charged for every page of notes. It can be tedious, time consuming and very beaurocratic. You can ask for summary notes which may make the beaurocrats and clinical staff little less defensive.
I agree with Bob in obtaining copies of every letter between your hospital and GP - you need to sign up for this so you are posted copies as and when they are written. In my surgery you can ask for copies retrospectively but again you will be charged for every photocopy - usually 15p per page. I would think that this is the quickest and most efficient way of obtaining the info you require.
The rules around data security is the biggest reason there is such a lack of use of computer communication in the medical profession. On balance I rather think I would rather that than mass leaking of confidential information with all sorts of consequences but there is no need for professionals to be defensive, providing they have made up the notes without any judgement, which of course is not always the case.
The whole question of note taking is a complete legal mind field and open to a lot of misinterpretation so it is well worth reading up on it so you can ensure what you are told can be easily challenged because no 2 people ever seem to have the same interpretation and every hospital and GP surgery a different protocol.
As I understand it the problem is absolutely nothing to do with data security at all. In many cases now GPs can access hospital records directly from their surgery. In my case my GP can access records from two NHS trusts (the one that we are located in and the where the nearest A&E hospital is and where we go god some things).
The computerisation of records started in the 90s but ran out of control. A lot of that was probably due to the fact that it was very ambitious, the fact that the computing and storage capabilities of computers was not up to needs, the communications systems (now broadband and also to some extent local networks) were inadequate. However technology has moved on thousands of folds since then.
Our area is very different - everything is still snail mail between consultants and GPs and the Local GP surgeries have only just (2015) invested in a system whereby they can access each other's patients' notes - scary when you know they share out of hours services to cover each other's practices.
Data Protection - as per the Data Protection Act - has never had much to do with NHS notes but confidentiality and duty of care for confidentiality has everything to do with it so I phrased it incorrectly, apologies.
Funnily enough today I have been clearing my cupboards and came across a file from a course I attended back in 2012 on legal responsibility on note taking and re-reading it I remember what a horrible nightmare it was! Dammed if you do or if you don't scenario!
I know 3 people who worked on the NHS computerisation projects and all of them said it we would never get a unified, nation wide computerised system in our life-time - but that was about 20 years ago and platform capability has improved massively with cloud based systems - but the multiples of differing applications which can't read each other doesn't seem to have changed much here.
There is some hope. A relative in Israel is working in a company that is working on a unified computerised system with the medical services in Israel and they are negotiating with the NHS to 'sell' them this service. She is actually working on this with regard to the UK as she is fluent in English. so there is hope out there.
@PeterWh In the USA in the 2 hospital systems (Guthrie and Strong memorial/rochester URMC) in which I see doctors--there is a computer patient portal--- on the web site you can access all your medical records.- and send a question/request/ rx. refill to the doctor or his./her staff and mark it routine or urgent-- you get a reply from the doctor or nurse practitioner, immediately if required and an answer to your query within 24 hours. If it is just a simple rx. refill they immediatley fax it in to the pharmacy. It is very useful.
@POrtnahapple1e You are right about Trump. Most people I know are terrified. Based on trump's speeches, a language expert said he used a vocabulary of about 250 words. My vasmarie eclectus ( a green parrot that has a neocortex -part of the cortex other birds do not have-) can not only repeat things it hears like other parrots, but can learn about 300 words and you can have a conversation with it--as though you were conversing with a very smart 5--6 year old child. Therefore , my pet parrot has a larger vocabulary than Trump. This is very scary. Also he knows nothing about science and thinks the climate is not changing. REALLY???!!! The web site for info about moving to Canada crashed after the election because so many inquiries were being made. I like to think things will go better because Congress will not approve anything too crazy and once Trump gets all the breifings from intelligence agencies and the joint cheifs he will be shocked at what he has gotten himself into. I hope he does not start a global trade war because I am not interested in a world wide depression, but I think this will not happen.
@CDreamer they need better computer systems with better security. BUT this costs more money so maybe that's why they don't have it""?? or are they just being totally foolish??
that's very concerning that the nurse would parry your request for what i assume are your medical records.
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that defensiveness on her part makes me think something's wrong w/ their record keeping. that possibility should be looked into farther by regulators, and i would report your incident to them.
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i would be aghast if it were legal to deny patients their records.
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I just had a similar red-flag incident from a new general practitioner, a doctor of osteopathy, DO, not a medical doctor, MD, i saw today.
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i'm in the suburbs of philadelphia, pennsylvania in a different state and i mentioned going to philly to see docs.
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i was taken aback when he said, You dont need to goto philly --- plenty of docs here in this state.
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philly has some of the best hospitals in the US, and iv taken relatives there for treatment of difficult conditions,
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and i have every legal right to be treated there altho that interstate situation creates complications in the US's byzantine health ins scheme.
I never fail to be astonished at the varying attitudes. Since moving to my current GP I have had copies of everything from both outpatient departments and from the practice itself. When I saw my GP recently I asked if I could have a copy of my medical records - he printed out every detail for the seven years I have been with their practice from his own printer on his desk - no charge, although I would have happily paid.
There is huge variation, I share your astonishment. The process to get complete medical record - i.e. Every single thing ever recorded about your from birth - is possible, but you would pay and have to wait a long time! This is simply because our surgery hasn't completed yet their computerisation of all historical medical record.
You would be able to access a summary record on-line, or access anything you had seen the GP for since registering with the practice - in my case the last 9 years - but 'complete' means from birth.
@CDreamer When seeing a cardiologist in Rochester University Medical Center for the 1st time in 2014-- she asked if she could have access to my complete medical history . I had signed a form to allow this. She sat at her computer before examining me and read over all my records from 1980. up to July 2015. These were all for doctors and hospitals within the same state (NYS)--although different cities. I also had access to what she was seeing via the patient portal website for the rochester university medical center. The USA is very informationa and technology oriented.
At my gp surgery you pick up a form, complete it. Bring in id and you can then get online access to your records. I have not done it yet but seems simple enough.
I have an eye condition, (glaucoma), and my adverse reaction to all eye drops necessitated an operation where my lovely consultant bored a hole in each eyeball and made a valve like flap on the surface.
Since I had been apprehensive about these procedures, (each eye was done separately to lessen the risk of being left with no sight), but was delighted with the result, I commented that I wished there had been access to someone who had experienced it beforehand, and offered to be a phone a friend for future patients.
My doctor's response was that this wouldn't be possible as it would be a breach of patient confidentiality, not the other persons as it turned out, but mine. I pointed out that I really didn't care who knew about my condition since it had no shameful aspects, e.g. It certainly wasn't sexually transmitted ! 😀
Since then a few people have proceeded with this operation after a call to me. I never ask their name, and stress that I am giving them a description of my personal experience.
Openness and transparency have the potential for benefit to all concerned in many aspects of life, medicine no less than others.
traveler65 , yes, my niece, in Canada sends me her notes regularly so that an oncologist friend of mine can give an opinion .
Perhaps our transatlantic peers benefit from the fact that their medical practitioners realise that they have nothing to lose by sharing information whereas here some doctors like to give the impression that they are all seeing, all knowing, and fear that shining the light on our information would destroy their mystery and therefore their status.
If only they realised that wearing more formal clothes instead of jeans and t shirt would elevate their respect and perceived status a lot more than secrecy.
traveler65 I know sartorial choice as befits a profession shouldn't matter and actually if someone was saving my life I wouldn't ask them to go and put a suit on, but I feel that care and pride in appearance commands respect. There's a place for trainers and jeans and it's seldom in a doctor's office. In my opinion.
@POrtnahapp1e Sharing medical research is a great advantage-- my husband and I look at research from scientists and doctors all over the world. First go to a google search--- type in your topic of concern or a question. (ex. what are the best hypertension drugs for people with my circumstances- list health etc) many links willcome up read all of them (or most) taking some notes.
The go to google and type in Google Scholar and click enter. You will now have a search engine site called google scholar--type in the same topic/question of concern as in the google search---you will now get ,many sites--but all link to scientific peer reviewed studies published in reputable journals--so now you can have scientific proof for the results you got in the google search
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