Worth reposting this information. A few months ago I had contact from NHSX after I raised the fact that many people are STILL being refused access to their digital GP records despite contract changes. You should see all details going forward from April 2020. If you also ask the practice for your full historical records prior to April 2020 they MUST make them visible in your online account.
I queried this with my surgery as I can only see a one word entry at best. They said they would have to print everything out causing them a lot of work if I proceeded with my request. That must be a lie as they have written computer records for years but are they meeting the requirements by one word entries? x
That is a load of rubbish and you are entitled to see all your records and it won't cause them a lot of work. I can just log into PatientAccess and read all my records.
Hi Michelle, the Practice system settings are wrong if you are not seeing more than one word. Please contact either of the above. It is worth downloading the Evergreen Life App in addition to Patient Access or whatever App you use just to get the support service. Sometimes it takes an official voice to sort them out. Otherwise use the form to get to the NHS Experience Team but I suspect Evergreen Life would be faster.
My records are now also full of lies and letters have been taken out and others made up and inserted. This was after I made a complaint this year. They stoped my online access and still will not let me see my records. I have also read on here that this happens if you pursue an official complaint, so that you have no chance.
This is part of the bullying culture in the NHS and I read that bullying happens to 22% of staff as well and that they target those who complain. Also read this year that it is upto GP practice whether you have full access, so they are allowed to stop it!.
They must give you your past medical records when officially requested, not much help when they make them up, but I read that full online record access is upto them.
I actually used to work in Medical Records several years ago and there is no way anyone would be able to change your records without someone knowing about it.
Yes the doctors do it on purpose, they know about it. I have read on here that the higher you want to take the complaint the more likely they are to alter your records, especially if you want a hearing, I read you should not bother because they will present a work of fiction and lies!
As Michelle said too lies and make believe. Why does bullying happen and a lot in the NHS? As I said above I made a complaint. They wan't to stop one complaining or pursuing litigation.
“ They (GP)are obligated by their NHS England contract to provide online access to a good chunk of your record. If a practice is not cooperating we can let our NHSX Empower the Person Team know to talk to the practice, use this form....”
If you quote this by Matthew Harris it should be passed on. That’s all I have.
The Patients Association know very little about GP records. They are a very small charity and it has not been an area of interest for them. I was in contact with them earlier in the year and found they only offer suggestions and do not contact GP surgeries directly. The App providers will contact GP Practices directly, will discuss patients rights and guide them through the technical steps to set it up. If this fails the next step is the NHSX Empower the Person Team above or the regional NHS Complaints Team. I would use the complaints team as a last resort.
Reply from NHS Service App which includes following paragraph:
‘By default, you can view your summary care record (SCR) in the NHS App. It shows information about allergies and adverse reactions, medicines, and your NHS number, name, address and date of birth.
Your GP decides whether to give you access to more detailed information in your record. To request full access to your detailed coded record, please contact your GP surgery’.
Yes you need to apply for anything above basic and submit ID etc. on a form supplied by the Practice. You need to add your own sentence to request historical records. If your GP refuses FULL access they must give a solid reason for example you may suffer serious mental harm by having access. This caveat exists to protect people where there are undisclosed issues which are not known by the patient. In practice I am told is this rare. Please do apply for full access by requesting the form from the surgery. If you are refused without a valid reason contact the NHS App team again and ask them to investigate. Some GP Practices are still trying to operate a blanket ban which is in breach of the GMAS contract. Refusal has to be on an individual reason for the specific reason of harm. Good Luck- let me know how you get on
I would contact them again and say you have applied for full record access and have no reason for your GP to refuse. However you can not see any details and you suspect the Practice level settings may be incorrect and would they please investigate this at Practice level.
Have you asked the surgery why you can’t see the details?
Are you in England? Wales, Scotland and NI have separate (or no) arrangements
Which GP system do they use?
If they use VISION it is due to be updated as it cannot show free text records. (Please see earlier threads)
I’m in England using Patient Access and also sending messages to the support centre about my memorable data variably not being recognised 😞 Its all annoying x
There is something clearly wrong with the Practice settings. There are two levels on set up
1. Practice level which should have been adjusted from April 2020 so every patient can see their consultation details word for word plus letters/documents, test results etc
2. Individual level settings so visibility for each patient is set. So if you ask for historical records the date setting is set to when you joined the Practice rather than April 2020.
I absolutely share your frustration and getting anyone to help is hard work I think I have done posts with photos of these settings sometime ago. The problem is that practice staff often don’t understand the technology or the set up process. It needs someone to talk them through it. Don’t give up
I put in a request to my GP surgery for full patient Access. I can now read everything, test results, documents, consultations etc. I can book appointments and repeat prescriptions too. I’ve found getting this access really beneficial. Checking my TSH. I was hypo in 2003 but not treated until 2008 when my TSH got to 36(0.35-5.5). I’d been told by my then GP I didn’t have a thyroid issue and I was depressed! Obviously I was hypo. Also my TSH has never been below 4.00 once on Levothyroxine. It should be below 2.5 or best at 1.0. It’s now hovering around 1.00 with adding T3 recently. I’m positive DIO2 gene tested. Finally I’m well on T3 plus T4 medications. Reading Patient Access has made me realise how poorly treated I’d been for many years by my then GP. I was never depressed just needing medical help with my thyroid. My GP has admitted to me they know nothing about the thyroid and even said in two occasions that I may as well be consulting a plumber!! Shocking but true.
Thank you for posting, when I read posts like this it makes all our battles fighting for access worth it. I am so pleased this has worked out for you but horrified at your story. You must have been feeling awful with a high TSH of 36 for all that time. My husband who rarely goes to the GP was exhausted for years, putting on weight, falling asleep on the sofa accessed his records and found his TSH was 80 and had been missed by the GP. He was a different man when he eventually got his TSH below 1. It’s not just about getting access, for many it’s about getting information to manage our health so we are well and that is priceless.
I totally agree, it is about managing our own health going forward now. GP’s are often too busy to properly look and do anything to help. I’m glad also your husband is now much better. I think we should all gain Patient Access and we should all challenge in the politest way our Drs when necessary. That’s all I did as well as going private eventually. It was only when I went private that any NHS Dr sat up and listened. I am extremely thankful to this site, the administrators and the sufferers on here, without their stories and help I would still be struggling.
Yes my GP has admitted he knows nothing about thyroid disease as well and I feel like telling him to read up on it! I don't think many GPs are interested and just follow NHS guidelines which is just going by the TSH. My GP has never ever examined me and I have showed him my symptoms which he didn't take seriously at all. He wasn't the only one who ignored things like hair loss and my nails lifting off my nail beds. When I first started to suffer from this over 10 years ago a lady GP sent me for 2 uterus biopsies and a cervix biopsy. She told me all my symptoms were the menopause even when some of my blood tests showed my hormone levels were ok. I did not actually go through the menopause until I was 55 so that was about 7 years after I started to get symptoms. She and other doctors including a Dermatologist who I paid £150 to see failed to spot I had a suppressed TSH. After I was diagnosed I bumped in the woman doctor concerned and told her she was wrong and it was my thyroid not the menopause. She completely ignored me and closed her surgery door in my face. I still feel angry about it all these years later. I am still trying to get them to remove "delusional" from their records which was written by a GP who has now retired.
The only thing I can think happened is that someone who is very powerful probably a Consultant removed them. When I worked for Medical Records doctors would take records out and not return them and it would take us days to locate them. I tried to pull someone's records for a clinic and discovered that a doctor had put them in his boot and had forgot about them and had been driving around with them all over the place. What I don't get is how they make such a fuss about records when infact people who work in the department can spend hours alone with them and can actually read them if they want to. I could have read my own records if I had wanted but I didn't because I didn't need to years ago. Someone I worked with actually read the records of her ex husbands new woman and it was discovered and they were sacked on the spot.
Not to mention Lora7again , when I worked for a Life Assurance Company, we used to have access to Patients Medical Files for photocopying purposes for Policies!
The only thing I read about them, is that they control budgets and are thus happier when the GP's spend less and lower expenditure. So I assume they also like it when doctors take T3 away or refuse giving it, as the price in this country is outrageous, and they instead give us Levo, but not enough and so keep us ill.
Yes CCG or local Clinical Commissioning Groups control the GP budget by buying services for their local area. In our area they do not buy T3 testing from the hospital laboratory services so my GP will not test for T3.
The CQC or Care Quality Commission is an inspector of services and has no input into local budgets. They look at the quality of care delivered by an organisation.
Few years back I asked for T3 test, first time ever and it was 1 point above bottom of range, but T4 and TSH worse. So when I gave them article linking TSH range to fatty liver, they ommitted T4 and TSH and just put in T3. As my TSH range was 6 and the article said this was linked to fatty liver. At the time I was being reffered to Liver Consultant for fatty liver. After fighting for tests and being told yet again that it was me and I just needed to loss weight. So it worked in their favour, who would have guessed.
This will give you instant access to hospital data and provides a communication channel between you and your consultant team. However most hospitals cannot share with other hospitals let alone patients. This is changing with the development if Local Health and Care Records which sometimes have patient portals to allow access. Progress is slow and if finance is tight the first thing to go is the patient portal. The other thing to note is that hospitals generally don’t keep records after 8 years if you are not a returning patient. So some records will not be available eg a surgical event 10 years ago with no further contact. To see hospital records we issue a Subject Access Request and ask all records to be forwarded to us by email, paper or disc. Most hospitals have a website and a dedicated team to deal with record requests.
Ok thank you. My hospital endo doesn’t send notes or blood results to my gp for some reason, so for me to get results I have to phone his secretary, who never answers phone and then wait a month for a paper copy to turn up. Just looking for a faster route. NHS/fast maybe not. Lol
Are you living in England and do you have access to your online GP account? The Endo is obliged to write to the GP and good practice dictates you should receive a copy letter but not all hospitals do it. Is it that the letters don’t have the TFT numbers or is there no letter at all? Something is not quite right here
I would not trust his word for it and I would want to see the results for yourself if I was you. Mine left me feeling really ill so I walked out his clinic 10 years ago never to return.
If you are in NHS England you can sign up for your GP records online. NHS Wales and NHS Scotland are not mandated to do this which is why I wondered where you lived. I have no doubt that your Endo does write letters with results to your GP. I suspect someone at the Practice is telling you misleading information. If you can I would sign up and you will see the letters and results come into your account. Some hospitals send the results electronically and may be viewable the day after clinic. It would save you a lot of bother.
When you first set up access you get granted a basic access. Speak to your surgery and ask for full access including historical record.
I was able to request via TPP systmonline and I had to go to Account > manage online services > then “add” full clinical record.
Here it list a number of services such as Appointments, medications...Some functions are listed as unavailable, some are controlled by surgery. Here you can request services can be added (or removed).
When I added the system tells you “If you are requesting access to your full medical record, we (the practice) have one calendar month to ensure it is processed correctly to new GDPR guidelines. Please be aware that your full medical record will also contain your detailed coded record already”
Once this is processed you should then see historical test results and any correspondence, eg referral & consultant letters and ultrasound reports if a feedback report is sent to to GP.
Letters are shown in the medical records with a paper clip icon. It’s not the easiest system to use to look up documents.
Are you in England? You have found the place on the system where I requested mine. It was not clear it’s being processed, and I wasn’t alerted when it was available but it did appear well within the month. I see they have it showing as status is not offered? But you were able to request it? Are they making it appear unavailable perhaps? Hope you get do access. If you can see recent tests you would think it was possible. Let us know how you get on.
Yes the status information appears to be incorrect following the contract changes in April by NHS England. However the “request” facility looks hopeful. Let us know.
You have requested to have Full Clinical Record on the online access. At the moment this is not available but you do have Detailed Coded Record access.
Can you ask the Practice Manager why it’s not available? I think you may need to provide the page of the contract that states it access MUST be given on request.
Can you ask the Practice Manager why it’s not available? I think you may have to print off this page from the current contract as it clearly states “GP Practices will make online access to the full historic digital record available to patients on request”The page reference is Annexe A page 53. I have posted an image here but you will not see this if you are on the App it is visible on the webpage.
It is difficult to say. It depends on which format the ultrasound provider sends the results. It may be recorded as a letter which will be entered into the letters/documents section...that is where mine was filed. To be certain you have sight of your results I would apply for full access to your detailed coded records with an extra request for historical records. I am assuming you live within NHS England which ensures these rights in the GP contract. Systmonline is a system that can be set up to give full detailed coded info.
I used to do very basic FOI training for nuclear industry. The instructions given were that if it doesn't exist, no one can ask for it, so don't keep a record or, if you do, delete it as soon as possible so it doesn't end up on a backup or gets overwritten ASAP.
Hi I recently requested access to my records at my surgery in Norfolk I had to go there present a photo ID and they gave me a special code/password to register on the surgery site (not the NHS general app) When i registered i was requested to change the password into my own one and then I could access just a few options I had to click on light grey links and stipulate my request for access through the links for the Doctors to check and accept it. It was granted the next day and now it works well I managed to access my records since early 2000 anything before that is just a few notes about my children birth with the dates nothing else. It is however very useful to have access when you have blood test i have notice that there are not much inputs about Hospital appointments just a mention of the complain and referral or mention of hospital stay with the reason if you have been admitted through A&E.
You have to apply for anything more than basic access, a form and ID needs to be completed as described by @Starw in the post earlier. Ask at your surgery for “full record access including historical records”
Thank you for this advice, I contacted NHS and received a response as below. Thank you for contacting us about the NHS App / Patient Access.
In the first instance you should only be able to view your Summary Care Record, which is a basic view of your medical record. It is the decision of your GP to allow you access to your records. Please contact your GP practice to request full records access, taking into account the additional information below.
If they have switched this function on, but you still do not see your full medical record, please do not hesitate to contact us and we shall investigate further.
Glad you got a reply. The caveat about it being the GP’s decision refers to situations where harm may occur if records are shared. This is very unusual but nevertheless less they have to mention it. If the practice settings have not been set they will obviously take it on. Let us know.
For ten years I had access to all my historical blood test results. Now they have disappeared and I can only see the results of the last test I took . It sounds as though this is now against regs.
So many people have problems with access. If as before you live in England and the GP system is EMIS Web (Patient Access), Microtest Evolution, TPP SystmOne you should be seeing all test results, letters, free text consultation details and much more if you have applied for Detailed Coded Record Access rather than just using the basic App. My posts 4 months ago give details of practice level settings. If you click on DJR1 on my post all my previous posts will come up. Keep battling on it’s worth it.
I have some access to my medical records but they do take out anything what can discriminate any doctor or surgeon.I found this because I had an operation 16 years ago which left me damaged inside and the surgeon basically got away with it.
That’s before my thyroid decided to play up too.
Even if you pay. They will only let you have so much information regarding you’re health.
In primary care the online GP record system does allow the GP to make individual documents invisible. I have had a battle as our GP insisted that my son’s cancer MDT summary should not be available to us. It took some challenge but the decision was reversed.
In a recent Subject Access Request to a London Hospital we are sure that some clinical documents are missing and these are relevant to a formal complaint. Clinic summaries are missing along with consent forms.
The power balance remains unequal and although there have been improvements to access both contractual and legally with GDPR, patients remain at the mercy of individuals and organisations who do not comply. Challenging non compliance legally is a huge undertaking both financially and psychologically with the stress this generates. The effect on care has also to be considered. In our case we made a formal complaint to a London hospital. They refused to answer for two years but we persisted-now the Consultant has asked the GP to refer my son elsewhere because we raised a complaint!
Sadly all patients remain at the mercy of the system and we can only campaign for better access and systems which give real time access so there is transparency throughout and less opportunity for records to be altered or disappear. The value of partnership working with patients and allowing access to all their information to enable them to manage their health is slowly being recognised but opposition in many quarters remains a problem. A sad state of affairs.
I actually paid years ago as they told me I would get all medical papers regarding my health and the failed operation were the surgeon got away with how she has left me in this state for 15 years and I was perfectly healthy before hand. They accused me of making it up because I have had mental health issues in the past. But it never stopped me being a good single mum and I worked in care at the time.
Since then I’m house bound and in chronic pain constantly because of what they did, this is before my thyroid messed up 12 months ago.
I knew it was longer than that as I kept on saying to the nurse what visits me from my gp that I don’t feel right and she ignored me for two years,
Till I demand a blood test as I have problems eating and knew there was something wrong. Then it came back as my thyroid had packed in.
It’s wrong how the doctors we are supposed to trust for help can get away with damaging your health and then blame me.
If there was transparency and we had real time access, then altering of records would decrease and there would hopefully be less injustices. The medics who do not seem to care how ill one is, if you put in a complaint, would not be able to so easily punish us and call us liars, when it is they who are the ones altering records.
I had to refer myself 3 times in the last few years and now I have complained they are happy to leave me with a mass in my intestine - said as it has not grown since last December it might not be cancer and although CT scan said that it might be an infection they will not refer me - and all infection doctors are NHS so this time I cannot self refer!
In the Guardian article online 10 July 2020 "The pelvic mesh scandal is what happens when men with power ignore women... women not being heard, not being believed by arrogant intimidating doctors, a lack of understanding of women's health and feeling abandoned.
Some organisations have campaigns that are fighting for change, I will contact them next year to see what is being done. If healthy enough - won't be due to NHS!
No we have not pursued the case any further. We had an apology from the Executive team regarding the delays, but there was a very robust defence that they are under no obligations to observe the NICE guidelines. If they had followed those guidelines my son would not have been overtreated. It seemed pointless to chase documents further with the ICO as all his other care is at this hospital. In the end we had to weigh up whether to continue or arrange all his care elsewhere.
An awful situation, and a very difficult decision for you. The assurance that patients are given, about a complaint not affecting care, really is nonsense, isn't it?
I applied to get access to my full medical records and after a few weeks waiting the surgery has sent me an email today that confirms it’s been granted but they included the note below.
‘The access given to patients is the Prospective Medical Record which does not include Retrospective information. NHS England have no plans at this stage to provide access for Retrospective Records but may do so in the future. You will be able to see any recorded information from the date your access was activated which was today.’
How can I get them to allow me to view past records? Do I complain directly with them?
I was allowed to see my GP records from 10 years ago when I applied and I also saw my notes from the Endocrinologist who first diagnosed me. I think what they have told you is wrong.
All the GP systems allow full access EXCEPT for VISION. There is another post on this too. If you want to access my posts you just need to tap on the DJR1. Let us know if you get the retrospective access. There really shouldn’t be a problem.
Hi, they did give me retrospective access eventually but they told me they first contacted the people from data protection to confirm.
I have since moved to a new area and joined a new surgery. They sent me a document with a lot of information when I registered which included a note saying: “In normal time if you are registered for our online services, you would be able to book an appointment directly online. At the moment we have had to switch this system off to comply with national instructions and guidance “.
I have since requested online access and the receptionist told me then that I would not be able to access my medical records at all. Have things changed since I last wrote to you or they have the wrong information at this surgery?
Hi I think most practices have switched off online booking due to Covid. Most people are triaged somehow to determine if a face to face is essential. I expect all online appointment booking will be switched on after pressures ease.
Access to online record accounts remains mandatory and must be given to all patients who apply as long as there is no risk of harm coming from access to that information.
If you could find out what GP system they use it would help. All systems give record access apart from VISION and this is being replaced.
I am afraid practice staff are often untrained and unaware of mandatory parts of the GP contract. It is a never ending battle. If you speak to the Practice Manager and print off the GP contract page which is on other posts you can politely request your right to access. You can find my posts by clicking on the DJR1. Do send me a private message if I can help further.
If the Practice website mentions an App like PatientAccess, Systmonline for booking appointments this will mean that they are quite capable of giving you record access.
This is wrong. In the latest GP contract it clearly states that patients must be given retrospective access on request. The copy of this section is in one of my other posts. Please print off the image and forward to the PM. I am sorry I can’t add another image on this thread
Does when you registered with the practice affect how far back the records go?
My blood test and documents are are available to view from around the time I joined the practice, which is quite a while. No records earlier except notes on major medical history.
On a separate issue I have access for my child and I applied to have full access. The system shows as having full record available, but I can’t view any of the enhanced information. Having emailed the practice about it they replied that I do have full access. Is there any sort of exclusion on viewing documents?
Hello there are indeed practice level settings and patient level settings. As you can see below the practice can control access from a date setting and also access to the different areas of the record. This is from the instruction manual for Patient Access, however all systems will have similar control settings. The problem here is that Practice staff often don’t have 5he technical expertise to set up their systems correctly. However some of the Apps eg the NHS App, Evergreen Life, Patient Access may liaise with GP Practices if patients report problems. I hope that helps
NB I think the images are only visible on the webpage I cannot see them when using the HealthUnlocked App
In addition there is facility to hide individual documents on the grounds that the information could cause harm or divulge third party information. I am not sure what you mean by enhanced information. If you mean free text consultation data you should be able to see this. I have another post on access to children’s records
Initially you are granted access only for a summary record only. (After months) I eventually figured out you must go to manage services and request full clinical record. The surgery has a calendar month to process it, but I had it sooner (although they don’t make it clear it’s being processed or let you know when it’s complete and available). This further step of obtaining access to documents and blood tests I’m referring to as enhanced access. I have summary notes prior to when I joined practice but no documents or test results from further back. This should be available?
It’s confusing. From April 2020 the GP contract changed and all patients if they had applied for record access should see all areas of their record going forward i.e. prospective record access. This change should have been applied automatically across all practices. The Practice levels settings should have been changed to show all consultation details, test results, letters/correspondence starting from April 2020.
If patients are not suitable for record access the individual system settings are applied so patients may not see all/some information.
To see the historical data before April 2020 you need to make a further request to have access to the historical data. This is a new contractual requirement from 2020 and many staff are not aware as the changes were described in the contract Annexes. The contract states that a patient request MUST be acted upon.
However .....some practices did not transfer digital records before 2025/16 when patients moved to a new practice. It was not a contractual requirement. So in our case our digital records start in 2015 when we moved to our new practice. If you are looking for historical information in records before that date they may not be available.
The changes described in the new contract have not been a priority due to Covid.
Always gain a better understanding after reading your post & replies.
The request was in August 2020 so the contract was in place but it’s clear the digital record is not there from the way the notes are recorded. 1 clerical user has added all the data from birth to new patient appointment.
Now off to reread the child access post and probably ask clueless questions on that thread too 😀
I see what you mean, so.. when a patient joins a new practice the clinical coders employed by that practice summarise the notes from scratch. Heaven knows why they do this. They must have the information available to do it so they are either using paper records or summarising the digital record. Most GP practices stopped using paper folder 15-20 years ago. If you moved in the last five years the digital record was contractually required to be transferred digitally. If you moved more than five years ago the digital record was printed off and sent as a paper copy with any old folders.
Our new summary list was put together by a coder with very little understanding of brain cancer/stroke etc and the list was totally inadequate. Why each practice rewrites the list is open to question but all I can say is that the whole process is chaotic and unreliable.
Your digital records may be there, they may just have been summarised by the new practice. The practice access settings may have not been set up so you can see them. Which system does your Practice use? It is a minefield trying to sort this out as the Practice staff do not understand the technology and are also unaware of contractual changes in some instances.
If you have been at your practice since 2005 you will almost certainly have a digital record. I suspect the Practice has not set the system settings correctly. They need to set your date of birth on the individual patient setting to allow you access to your historical record.
The two links above have useful info although the first document has not been updated to include historical access. However the TPP Systm online set up page is illustrated on p14. I hope you manage to get it sorted out. All the information refers to patients living within NHS England.
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