An interesting report from the Patient Coalition for AI, Data and Digital Tech in Heath looking at patients use of the NHS App found that a third of those surveyed had no access to test results and medical records.
The survey found that some GP’s have prevented access to some health records despite NHS England requesting they are made available to patients.
One of the recommendations in the report states the NHS App could be improved by
“2. Providing universal access to information (including test results and medical records) to enable all patients to be involved in managing their own healthcare through the App if they wish. While GP’s restricting information via the App May call this “stewardship”, many people in the survey and in the Steering Group perceive this as GP’s acting as gatekeepers disempowering patients. It is felt that GP’s shouldn’t be able to control the flow of information, as this results in a lack of consistency and leads to disadvantage.”
I have had on off access to my full record. My surgery initially released it back in November but then back tracked. Now they want patients to fill in a form and bring in photo ID to release their record, yet another layer of bureacracy. And not everyone has photo ID, I dont.
I got very shirty with my surgery, told them to stop infantilising patients and got my access reinstated. My husband and son dont have access and very rarely go to the doctors, neither has ever had a mental health issue or red flag. I think our surgery default is deny access until forced to release it. Very unsatisfactory.
Sadly some GP Practices have not switched on record access following the December switch-on recommended by NHSE. They continue to oppose patients reading their records and describe this as stewardship. Individual patients may have been refused access on safety grounds but this cannot account for over a third of those surveyed venting their frustration as they don’t have access.
I have read advice from other members that anyone who gets access to their medical records online or via an app should immediately take copies of every page just in case their access gets revoked later - which seems to happen quite often.
That is a very good question, who will or can enforce it? GP Practices are independent businesses and only work under contract to the NHS. They are not managed by the NHS and as I was told by the RCGP they have autonomy in deciding how they run their practice. The GMS contract did include this requirement as a contractual obligation but this is flouted by some and there is no retribution. Until the GP model is changed and moved within the NHS I cannot see anything changing.
One way round this is to adopt the French method: the lab gives the results directly to the patient. You go to the lab before 8 am and they take your blood. And you can go and pick up the results after 6 pm - or someone can pick them up for you. Doctors receive results by email. So, when you go to see your doctor next time you have your results in your hand and can discuss them.
I don't think UK doctors like giving up the power they feel it gives them having patients that haven't a clue what their results are and therefore can't argue.
So true gg... whilst living in Crete we kept ALL our records and could phone any consultant for an appointment if needed. It all seemed very 'grown up' as you felt informed and in control. Private and their NHS ran closely together. Of course there were many people who didn't bother to learn what the results meant ! 🤔
Problem is, the NHS has always liked to keep tight control of everything - it's not your body to do as you please with, it's their property to be treated according to their dictates. Under the NHS, you do not own your own body or mind, and what they do with them is none of your business!
My surgery put all the information they could think of online at least 7 years ago, including details of every GP appointment going back 15 years before that, which was brilliant and allowed me to work out some hitherto unexplained test results and also see some very odd entries.
They removed it all during 2020, but in 2021 most of it went back online and I went through it again and listed everything that was odd, wrong, incomplete, or missing - which included all mention of my thyroid condition, treated since 2001, but still not recognised by the NHS. It also included things that weren't wrong with me! I then emailed the list to the GPs, together with scans of some of the missing consultants' letters, and now most of it has either been corrected or reappeared.
It seems to me that my surgery uses it as some sort of training exercise but then doesn't check the detail.
I applied ages ago and nothing happened, then suddenly without any warning the other week after an appointment I notice what looks like more information, however everything before that including previous test results has now disappeared from view ….
personally , i'm not going to be relying on any form of online access. Wouldn't trust it as far as i could throw it ... far too many examples of stuff appearing then disappearing . I have got everything historic on a password protected disc ... got it the old fashioned way by SAR request... and i get anything new as i go along by going and asking nicely for a printout ... if there is anything more complicated than blood test results that i want to have a look at in future , i'll do another SAR.
They are not bothering to do anything in Wales if my practice is anything to go by! They have a new "portal" for requesting repeat prescriptions but is often down, with 404 error.
Interesting. My husbands test records on the app go back to 2007, mine were not showing at all. To give the surgery their due, I put an admin query through on their website Friday lunchtime and within 2h, I had been given access to this year's test records. No sign of the history before that though.
But the rest of my online GP record is a mess. Conditions as active that aren't active, active life long conditions as past, some not appearing at all. Oh, and my only active medication is the covid vaccine I had in Oct, not my asthma inhalers. It really is so random that I'm considering asking for a copy of my full record from the GP surgery and both NHS hospitals that have treated me and piece it all together myself!
I've come to realise that GP practices have too much control. Losing or editing records to cover up mistakes. Not allowing patients access to their own records is part of that too.
I agree, the problem lies with the private business model. Each practice can make their own decisions about how they run their services as they are independent businesses. In addition if they breach the NHS contract there is no consequence. Pharmacy First was a recent plan to make life easier for patients with simple conditions but the ability to record consultations and prescriptions by the pharmacist was unilaterally removed by GP’s confounding that programme. Until primary care services are brought back within the NHS there will be always be an imbalance of power.
Agree! Iv found their cover ups along the way. Which is unethical and hopeless.... all about them, it will prevent them in some cases being took to task, immoral procedures really plus on a human level they won't want to explain the many queries from patients who don't understand their results due to unsatisfactory working conditions which in fairness is understandable with targets and restraints they are set 🤷♀️
Hi all, I'm not sure if anyone's still interested, but I live in Scotland, and after years of being treated like some sort of idiot by my G.P and their practice I requested a print out of All my medical records. All 59 years of them!! There's a Lot believe me! They were very reluctant at first, I offered to pay, then they suddenly agreed to do it. I didn't have to pay and now have a huge pile of papers to investigate. Already finding some strange anomalies.....
thank you for posting this. I'm in the process of meeting with my GP practice because admin had input someone elses notes on my record about 6 years ago and I only found out by chance because of a hospital consultation who queried my history.
So it was a data breach on both of us. The notes were of a serious nature and I wondered how many health professionals had seen them or if they had affected my treatment.
I always read my record notes now after a GP consult. Things are often misquoted or words I've used changed. ie me feeling a bit down because of my chronice health = she's depressed! They don't seem to know the difference. Or they miss out something I thought was relevant.
I've given them info which was supposedly going to be scanned on - never appears.
Takes them weeks and weeks to put consultants letters on and I end up taking my copy in to them to scan on. Thats what comes of centralising admin for several practices. Chaotic and slipshod results.
I'm so glad I've kept my own records but to be honest I just don't trust the practice at all now and lost all respect for what used to be a great practice til it got bought up by 'big business'
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