After ten weeks plus my MP's senior researcher has finally received a reply to my request for full online access to my medical records using my hearing loss and the Equality Act 2010 is below. I have not received any acknowledgement of my private and confidential hand delivered letters to my named GP and Practice Manager. The reply is from the Deputy Practice Manager. Has @DJR1 any comments?
"Sorry for the delay in getting back to you, we knew there was going to be an update and were waiting for the information from either NHS Digital or BMA regarding access, it just came later than expected. The information that has recently come out from the BMA is that they are not challenging this roll out, so we do hope to be working towards patients access to their prospective (future) data, this will most likely be via a staged approach due to the background work it will involve.
Mrs XX currently has online access for requesting medication, questionnaires, summary record access and detailed coded access, we can also add booking appointments though booking online will be specific depending on the type of appointment. I am not aware of any verbal requests but I have seen and responded to the email requests she has sent in.
I had been in contact with or Data Protection Officer (DPO) asking what we can do for Mrs XX they had given me the information to respond. I had explained to Mrs XX that at the time we had opted out of full record with (future) prospective record entries.
We had offered to send Mrs XX her full medical record via email but this was refused as she said it was not secure, we do use a secure system called egress which the patient needs to log into when receiving an email from us, I am not sure if this was mentioned to Mrs XX at the time, we are happy to send this way if it is still needed. Our IT services have stated that we are not able to put the data from Mrs XX medical record onto a USB stick as it is classed as removing data from the system, this is something we are not allowed to do."
I have replied requesting that my MP asks a question regarding the validity of the patient's access given in the 2019 - 2024 GMS contract, if it is negated by the ongoing negotiations for universal access and what happens to historical access. Additionally should a SAR request be provided in a readable format without all of the codes.
I will request my full medical records via secure email now I know that it is available but when I refused email due to lack of security they didn't tell me of secure email at that point. It still won't be fully accessible as my paper copy is full of codes and is not as easy to negotiate as having full online access to my records.
I need to investigate how to continue under the Equality Act and ask the Information Commissioner about the continued inclusion of codes which may continue to hide information from me. I had full access before moving but when looking back on previous appointments it is hard to remember whether what I'm seeing now is the correct record.
Thanks if you've read this far.
[ Edited by admin to redact actual name into XX. ]
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Paragraphs 4 and 5 need a small edit to XX out your name (Mrs T).
(you can edit via the 'More' button - underneath where it say REPLY, LIKE, REPORT then MORE) (just saying because it took me ages to work out how to do it !)
I have full online access, as well as several copies of my medical records in digital format (I request these via SAR very few years as more historical data is amalgamated).
In my experience, despite having full access, I can see some entries from recent times with digital appointments missing. For example, a telephone encounter or other digital isn’t always recorded. It would seem some practitioners at my practice forgo these when tests are involved and just add the test request entries.
In the SAR request, some words from some entries are missing and replaced by ***** . But, I can see the rest of the entries.
I also use several apps to access my data. Some offer more detailed and up to date info than others e.g. NHS App seems very slow to update.
Oh WOW! Gosh. I am so sorry you are having such a hard time with it. I honestly can’t understand why some surgeries are so afraid of patients having their own data.
this is interesting to me as we have long been tempted to ask for my daughters records..they do not make it easy, despite it being our right and I wondered if they would `edit ` what they show us in any way. Whatever she goes to the doctor for, they try to treat her for anxiety..and she doesn't even go that often. Before she got her Hashimotos diagnosis they treated ALL her symptoms as anxiety...the girl looked SO ill..but no, no tests..until eventually I went in with her and stamped my foot and insisted on tests...and there it was, TSH of 30. This had taken best part of a year and we had paid privately for counselling. You would think they would learn, but no...every symptom she ever has now, they try to get her on an anti anxiety med. Recently she had a lump on her breast..doctor didn't even examine it, said it is `probably nothing at your age` (she is 28).. she saw another doctor who referred her for an immediate ultrasound scan..so large was the lump, she had to have an immediate biopsy there and then. Fortunately, benign, but cause for concern and ignored by one doctor. I believe she has anxiety stamped all over her records..whenever she has symptoms, needs vitamin tests or something clearly needs investigation...no..she is simply offered another SSRI or similar. It makes what is a difficult disease to manage even harder as they are basically gaslighting her. I will watch with interest how you get on and whether there are any revelations in your notes.
That is interesting. I’ve noticed the words mental and anxiety have been replaced with asterisks. No matter as I can see the full (I think anyway) entries via other apps.
I think they do have the power to withhold information that isn’t for our best interest. How they decide that is any one’s guess!
"Our IT services have stated that we are not able to put the data from Mrs XX medical record onto a USB stick as it is classed as removing data from the system, this is something we are not allowed to do"I don't understand this. I live I'm Norfolk.
A few years ago, pre-covid, I requested all my medical records from my surgery, from my birth date of 1950! They agreed immediately, saying they often do this. I received them about 2 weeks later, on a CD, strictly password protected. About 500 pages!
Then I asked my hospital for records from each department I'd been treated in. Again immediate agreement. These were all photocopied sheets. Must've taken someone AGES! They were sent by post. (Probably signed for, though I can't recall)
I doubt that there is anything as I had full access until January 2022 when we moved and had previously seen all the paper records held so am aware of what's missing when they cannot be. Much of my early life, childhood and teens are just not there so they don't know whereas I do but am not sure that they would believe me.
i got all mine on 2 password protected CD's (after filling in paper SAR request form)
i previously wondered if the issue with using USB stick is to do with it not being password protected ? dunno... but the wording about 'removing data from the system' does seem illogical .
I would think that a file can be password protected whether put onto a CD or a usb. I asked for usb as my laptop doesn't actually have a disk drive and I didn't want to have to buy one.
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