I've just downloaded the NHS app and looked at my health record. I am somewhat disturbed to see this:
29 October 2021
Giant cell arteritis without polymyalgia rheumatica
Significance: Minor
Status: Active
I was diagnosed around 4th October after a diagnosis of PMR a week earlier. This entry is after a temporal biopsy which came back negative. I am on 30mg pred and all the accompanying drugs to counteract the side effects. It is not minor to me!
Or me, either - how about a challenge?
Yes if I had time to spend half a day trying to get through on the phone!
Your reply made me 😈
I send an email when it is non urgent - I do get a reply eventually.
Yes I'll try that, if I can find an email address!
A person I like - never give up.
Email now sent! We'll see what happens. EDIT: Just got my reply! " Thank you for your email. The requested amendments have been made. Unfortunately, I am unable to confirm that all your hospital letters would go to Dr ****. Letters will be sent to whatever GP is in on that day. I must remind you that all letters will be stored on your notes and available to Dr **** when needed. " (I had also asked that letters from rheumatology go to my GP not just any of them).
It's that way inGermany now. All doctors concentrating on covid jabs - no time for anything else. Thank goodness we can sometimes go against the rules and find help with other issues on this amazing forum.
Your Dr might be concentrating on Covid jabs but mine isn't. I'm still trying to get my now housebound OH his third jab without success!
That post was meant for Germany as a whole. I live in a small town and if I want to see a doctor I ring up (perhaps three times) and I get an appointment - f2f- within five days (no restriction on time either).
I've had the same doctor for over 25 years!💥
I wonder if others in the UK on this forum have looked at their record, and if it also says "minor"?
How do you get your records on the NHS APP without asking your GO for permission
It’s linked to your surgery’s records, and it depends what permissions they have set -
Taken from nhs site
“view your health record - securely access your GP health record, to see information like your allergies and your current and past medicines. If your GP has given you access to your detailed medical record, you can also see information like test results and details of your consultations”
Full text - nhs.uk/nhs-app/about-the-nh...
Thank you. I have got the app and have ticked access to gp records and test results, but does that mean the app will ask or I have to ask the surgery for this to happen.
I'm not sure, I didn't have to ask my surgery, it was all there to see already.
I’m not sure - but probably the latter. My surgery already had another system in place before this app came out- so my GP had already given permissions - so I guess just transferred over.
But I did have to request authorisation initially - not given automatically.
Thought I had relied. I will request today. We have similar at our surgery but test results are ghosted. Would save reception time if we could look at our test results. 😊
You should be able to access them, once they have been seen and commented on by GP…..I can. What system does your surgery have?
Systemonline
I use Evergreen Life. I can see all my blood test results and keep a record of them. However now I'm at rheumatology, I've found that blood test results done there are not shared with anyone unless they are noteworthy. I have had to ring and speak to one of the nurses to get them over the phone. I wanted to make sure my HbA1c was OK, which it is, but one of my liver results was slightly abnormal, so I'm glad I asked!
Me too…if you look on main page - under name etc there may be a message which says -
“Note: Grey links represent features which have been disabled by ….(name of surgery)”
On mine it’s all under Appointments (since Covid, okay before) and messages under Your Account.
Everything else I can access.
Not minor to anyone, except those that don't have a scooby about it! Short sharp letter/email required methinks!
You are within your rights to have your record amended, Broseley, so do ask for this.
Not minor in the potential for trouble either. Shows that not all apps are useful ...
I deleted a number of useless apps: they just take up storage space on devices 😏.
Unfortunately you need the NHS app for a covid pass if nothing else!
At least that works fairly painlessly.
I believe paper proof is acceptable in England at least.
My records are total rubbish. Every time a letter is sent to a consultant it has some sort of error, it is the same when the consultant writes back. It is as if they are talking about a different person sometimes, they probably are!
I have just checked my on line info and PMR is current which I suppose is correct but my hip replacement is minor!
Their idea/description of “minor” is obviously different from thine and mine then……don’t think a hip operation could ever be called minor! Commonplace or straightforward maybe 😊
I just despair. Recently my GP wrote to the consultant saying I was in pred. The consultant wrote back a month or two later saying I was not on any long term medicines. I mentioned this to my GP , who had not read the letter although it was to him and he said he would write to the consultant. He gave me the impression that consultants often got it wrong. Frightening I would say. Also once it is wrong they can’t change the original comment, they have to make a new comment, which is often not noticed.
Unbelievable! Who fills these in?
I really begin to wonder. There was one letter from a consultant to my GP when he was talking about my parents medical history which no one had even told him about! I had a rheumatologist who did not look at my results for three months, I think they just muddle people up because of the time they take.
I was told I had been offered and rejected assistance for my husband - LIE! I was begging for help - wasn't offered any. I have alcoholic somewhere on my UK records ... That is if one glass with dinner makes you dependent. My GP at the time thought it was hilarious - I didn't.
I reckon ninety per cent if not more have errors on their patient records.
Only 90%?
I was being generous!
Let’s be realistic it’s 💯 percent
That is something I have been cross about and did mention the other day, it makes me feel quite normal now. My notes are so silly it isn't true. I intend having a strong talk to my Dr when I am finally allowed to talk to him Thursday--- at his convenience, we don't even get to know if it will be AM or PM. My daughter tried remotely using my details to try and get me a third vaccination and some clinical support team told her there isn't even a marker on my account to say I was due for a third vaccine so why had I received a letter from N HS saying I was? I was definitely due for one. It isn't all the Drs fault most of it is the Rhumat. Initially when my "Journey" started I was stupid enough to say I had been blaming my initial problems to the fact that I had an annoying bridge upper jaw at that time, and I had ordered new glasses thinking perhaps that was annoying my eyes, even though I then tried to tell him about the excrutiating pain in my jaw and tongue, in my notes he wrote " the lady admits her jaw and eye problems were down to her bridge (it wasn't even in the lower jaw where the pain was)
Maybe this needs publicising! I have kicked something off here and it seems there is a wider issue! Maybe I'll contact Which? about it.
What the NHS needs for a start is a computer system which has your information put in once which links to private companies and also the GPs. Instead of the mess we have now, my surgery has to contact five different computer systems, some hospital information they cannot get hold if at all. That is true of all private procedures I have had. In fact when I asked for medication given at a recent op I had privately, the private hospital could not give them to us as they had been archived. They had manual records. We need a Healthbook!
I agree. Even at my rheumy appointment at the same hospital as I had my urgent assessment they couldn't access my weight, drugs details etc, all of which had been taken in depth at the assessment!
We get a discharge letter pressed in our hands as we leave, even for an ED visit, and are encouraged to keep a file of our own and take it with us - providing you don't have a big file it is fine. OTOH, the most recent discharge letter always has a list of previous diagnoses which helps with the history.
My gosh, that is impressive. I am not sure the NHS is up to that. I suppose they could always fax it to us!
Or carrier pigeon…
🕊🕊🕊
I think they’re doves, but I get your drift 😊..
..although I had my booster this morning, by the time I got home info was on my records…CPs must have been jet propelled. 😳
Ah!ah! Might be better than the present chaos…
Yes, this is usually the case in EU countries. Much better that way. It encourages the patients to become responsible for their health and one can check whether everything is correct on the letters which form the patients’ records but held by the patients. Of course one has to be disciplined and a little organised.
Trouble is - I'm neither!!!! Trying to change ...
Good idea! Something needs to be done. They can’t expect to carry on treating patients with such a lack of respect and genuine care.
You bet? It seems to be getting worse - not better!!!
One has to question why they’re paid so much for doing so little! There’s always the exception of course, but rare. Patients have to educate themselves in order to present their cases to the doctors, ie. doing the doctors’ work, in order to get things moving. That’s so wrong.
So true! And if you're disadvantaged in that respect for whatever reason, you can't do that .
Because I once lost a lot of weight during a traumatic time my records say I’m anorexic! Pass the cake please 🍰
Apart from the astonishing 'minor' if it says that you didn't have PMR more than 4 weeks after being diagnosed with it, it is just plain wrong, isn't it? Record really does need amending.
Good point. Thanks. I also can't get copies of letters to the GP with my blood results on them or reports unless I ask for them each time I see the consultant. The secretary says "they don't have the facility". It's taken a week and a half to get hold of the recent test results.
Same here Brosely. It's frustrating: our bodies, our blood, our illness but not our business it seems.
I think it is a legacy of the days when “Doctor knows best” and the patient was too ill-educated to need to know. These days with forums like this and Google to do some research, this attitude really ought to change.
I was intrigued by the ‘minor’ on your record so I checked my own record. Everything I have had, including breaking my hip, is deemed minor. I’ve come to the conclusion that all is minor unless you are dead!
Amazing! They obviously think you're superhuman!
💪 😅
That is infuriating Broseley. Definitely worth following up on.
Just had a look at my records via the NHS app. No mention of when I was actually diagnosed with PMR but all meds are listed. There is also a strange entry just stating "teetotaller". Funny, I could have sworn it was wine we had with lunch on Sunday.
My endocrinologist wrote, " drinks bottle of vodka every week". I might have a can of lager once a month, I have never had vodka and never even mentioned it at consultation and now on methotrexate as l was when endo wrote what they did, probably never will. Since having GCA my hearing has suffered, wonder what endos excuse is.
No brain!
If I were you I would confront this arrogant liar of a consultant and demand that he removes this false information from your notes. Who do they think they are? He’s probably the one who drinks bottles of vodka every week…
Annoyingly my surgery has chosen not to activate the medical history, conditions or letters/documents sections of the app. So I have no idea what they make of me really!! Can however use it to order meds and to look up test results. I’m grateful for small mercies 😀x
Does your surgery use Patient Access, if so and you fill a permissions slip you will get access to everything and it may then appear on the NHS app. I have access to everything on both although the NHS app is easier to access.
Thank you Bcol 😊We used to have Patient Access but sadly no longer - I used to be able to read letters and test results on it. It’s much missed ! Was notified by text that they were discontinuing it’s use …,
That's a pooh, I wonder why
Our surgery had Patient Access initially, then changed to systmonline.tpp-uk, and also has Airmid UK (bit clunky)…so are you saying yours doesn't have anything?
No, we have the NHS App, but mainly to read test results and request prescriptions. The medical record, conditions and letters / documents fields are blank (well, they say ‘0’).
I can use it to send eConsults. Also allegedly to make appointments but only a handful of nurse ones are ever available (have to tackle the phone to negotiate GP contact)
I think most surgeries have disabled bookings facility,,,…not a good enough service all round.
No indeed
That’s rather fishy. They’re disguising their mistakes obviously!
monitoring my GCA with difficulty
Will My GCA Come Back?
Did Covid trigger my GCA?
Free NHS eye test for GCA patients?
My Life Before GCA/PMR... 
