NHS app health record says my GCA is minor! - PMRGCAuk

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NHS app health record says my GCA is minor!

Broseley profile image
91 Replies

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!

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Broseley profile image
Broseley
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91 Replies
jinasc profile image
jinasc

Or me, either - how about a challenge?

Broseley profile image
Broseley in reply tojinasc

Yes if I had time to spend half a day trying to get through on the phone!

jinasc profile image
jinasc in reply toBroseley

Your reply made me 😈

I send an email when it is non urgent - I do get a reply eventually.

Broseley profile image
Broseley in reply tojinasc

Yes I'll try that, if I can find an email address!

jinasc profile image
jinasc in reply toBroseley

A person I like - never give up.

Broseley profile image
Broseley in reply tojinasc

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).

jinasc profile image
jinasc in reply toBroseley

So far so good......................now you can bother them all you like 😈

Constance13 profile image
Constance13 in reply tojinasc

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.

prunus profile image
prunus in reply toConstance13

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!

Constance13 profile image
Constance13 in reply toprunus

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!💥

Broseley profile image
Broseley in reply tojinasc

I wonder if others in the UK on this forum have looked at their record, and if it also says "minor"?

Suffererc profile image
Suffererc in reply toBroseley

How do you get your records on the NHS APP without asking your GO for permission

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSuffererc

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...

Suffererc profile image
Suffererc in reply toDorsetLady

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.

Broseley profile image
Broseley in reply toSuffererc

I'm not sure, I didn't have to ask my surgery, it was all there to see already.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSuffererc

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.

Suffererc profile image
Suffererc in reply toDorsetLady

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. 😊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSuffererc

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?

Suffererc profile image
Suffererc in reply toDorsetLady

Systemonline

Broseley profile image
Broseley in reply toSuffererc

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!

Suffererc profile image
Suffererc in reply toBroseley

I find hospital tests usually copy me in. Not the GP tho. Had to virtually beg for my Dexa scan results.I don’t know why they don’t give everyone a copy that they see .

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toSuffererc

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.

Bcol profile image
Bcol in reply toBroseley

Mines just under current illnesses

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Not minor to anyone, except those that don't have a scooby about it! Short sharp letter/email required methinks!

123-go profile image
123-go

You are within your rights to have your record amended, Broseley, so do ask for this.

Broseley profile image
Broseley in reply to123-go

I will do! Thanks.

PMRpro profile image
PMRproAmbassador

Not minor in the potential for trouble either. Shows that not all apps are useful ...

123-go profile image
123-go in reply toPMRpro

I deleted a number of useless apps: they just take up storage space on devices 😏.

Broseley profile image
Broseley in reply to123-go

Unfortunately you need the NHS app for a covid pass if nothing else!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toBroseley

At least that works fairly painlessly.

in reply toBroseley

I believe paper proof is acceptable in England at least.

piglette profile image
piglette

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!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topiglette

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 😊

piglette profile image
piglette in reply toDorsetLady

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.

Broseley profile image
Broseley in reply topiglette

Unbelievable! Who fills these in?

piglette profile image
piglette in reply toBroseley

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.

PMRpro profile image
PMRproAmbassador in reply topiglette

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.

piglette profile image
piglette in reply toPMRpro

I reckon ninety per cent if not more have errors on their patient records.

PMRpro profile image
PMRproAmbassador in reply topiglette

Only 90%?

piglette profile image
piglette in reply toPMRpro

I was being generous!

in reply topiglette

Let’s be realistic it’s 💯 percent

67Blue profile image
67Blue in reply topiglette

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)

JGBH profile image
JGBH in reply to67Blue

Incredible! They always use any excuse rather than caring to really find the cause of a problem. If they worked in business they would be sacked in no time for inefficiency. We, patients, need to be checking all the time.

Broseley profile image
Broseley in reply topiglette

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.

piglette profile image
piglette in reply toBroseley

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!

Broseley profile image
Broseley in reply topiglette

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!

piglette profile image
piglette in reply toBroseley

I get asked the same things more than once at the same appointment. Are you diabetic, do you have allergies, what is your address …..

Broseley profile image
Broseley in reply topiglette

It wastes so much time!

PMRpro profile image
PMRproAmbassador in reply topiglette

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.

piglette profile image
piglette in reply toPMRpro

My gosh, that is impressive. I am not sure the NHS is up to that. I suppose they could always fax it to us!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topiglette

Or carrier pigeon…

piglette profile image
piglette in reply toDorsetLady

🕊🕊🕊

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply topiglette

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. 😳

piglette profile image
piglette in reply topiglette

Close relation to pigeons!

JGBH profile image
JGBH in reply toDorsetLady

Ah!ah! Might be better than the present chaos…

JGBH profile image
JGBH in reply toPMRpro

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.

PMRpro profile image
PMRproAmbassador in reply toJGBH

Trouble is - I'm neither!!!! Trying to change ...

JGBH profile image
JGBH in reply toPMRpro

I know it does take time to do so… I have a table full of papers (dining room which is rarely used these days) awaiting my attention… am getting there. Yet everything was so orderly before my health deteriorated so much. I blame constant pain …

JGBH profile image
JGBH in reply toBroseley

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.

Constance13 profile image
Constance13 in reply toJGBH

You bet? It seems to be getting worse - not better!!!

JGBH profile image
JGBH in reply toConstance13

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.

Broseley profile image
Broseley in reply toJGBH

So true! And if you're disadvantaged in that respect for whatever reason, you can't do that .

JGBH profile image
JGBH in reply toBroseley

Unfortunately so. It is not acceptable. So unfair. Also when I feel so ill, the last thing I need is to do research and fight it out with a GP who does not want to cooperate. That’s their job.

in reply toPMRpro

Because I once lost a lot of weight during a traumatic time my records say I’m anorexic! Pass the cake please 🍰

Suffererc profile image
Suffererc in reply toPMRpro

My youngest daughter had another girls records, 5 years older than her, on her records .

Broseley profile image
Broseley in reply toSuffererc

That's appalling. 😡

Sharitone profile image
Sharitone

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.

Broseley profile image
Broseley in reply toSharitone

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.

123-go profile image
123-go in reply toBroseley

Same here Brosely. It's frustrating: our bodies, our blood, our illness but not our business it seems.

HalleysComet profile image
HalleysComet in reply toBroseley

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.

JGBH profile image
JGBH in reply toBroseley

Indeed, they simply don’t like the patients to be aware, to be in control… so they can fob us off when needs be! I always request everything but yes, it’s a battle.

Thelmarina profile image
Thelmarina

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!

Broseley profile image
Broseley in reply toThelmarina

Amazing! They obviously think you're superhuman!

Thelmarina profile image
Thelmarina in reply toBroseley

💪 😅

Skysey profile image
Skysey

That is infuriating Broseley. Definitely worth following up on.

Flivoless profile image
Flivoless

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.

S4ndy profile image
S4ndy

Minor is that code for:

Mostly

Inaccurate

Notes

On

Record

😊

Elbowpiece profile image
Elbowpiece

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.

Constance13 profile image
Constance13 in reply toElbowpiece

No brain!

JGBH profile image
JGBH in reply toElbowpiece

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…

Nextoneplease profile image
Nextoneplease

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

Bcol profile image
Bcol in reply toNextoneplease

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.

Nextoneplease profile image
Nextoneplease in reply toBcol

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 …,

Bcol profile image
Bcol in reply toNextoneplease

That's a pooh, I wonder why

Bcol profile image
Bcol in reply toBcol

Probably can answer my own question, they don't want you to see all the possible mistakes on it!!

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toNextoneplease

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?

Nextoneplease profile image
Nextoneplease in reply toDorsetLady

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)

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toNextoneplease

I think most surgeries have disabled bookings facility,,,…not a good enough service all round.

Nextoneplease profile image
Nextoneplease in reply toDorsetLady

No indeed

JGBH profile image
JGBH in reply toNextoneplease

That’s rather fishy. They’re disguising their mistakes obviously!

busyrosiebee profile image
busyrosiebee

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