GP diagnosed , another GP said it is an error

[Starsonsky]

I am 37 female , Genetics advised to get official document for me because my daughter is under investigations for rare type of EDS.
Physiotherapy gave diagnosis of Fibromyalgia and sent me to Rheumatology who didn't want to discuss diagnosis of hEDS but discussed it partly
*I was there for investigation of raised levels of inflammation then sent me for full body CT scan that showed only wear and tear exactly in spots where I have chronic pain (stiffness) and stated in the report that I don't fit criteria for hEDS (but verbally didn't say that to me, she advised that GP can diagnosed hEDS)
After results from full body CT scan I sent a email to my GP and requested to have an official diagnosis documenting my hypermobility because it is relevant in treatment and provided an email with all my history and symptoms , with that
GP stated I fit few criteria for Ehlers-Danlos Syndrome and gave the diagnosis of EDS.
Again I requested pain medication through E-consult ,(a different GP who I have complained previously and had put notes in the system to remove her from my care/avoiding seen her )responded with "you don't have EDS, only Fibromyalgia as per Rheumatology letter, your documentation is an error ( without seeing me, without reading my documents)
I have raised this concern with surgery manager who again is supporting that EDS was entered in error .only statingRheumatology letter. How can they dispute my diagnosis that was after my Rheumatology appointment ?
Is I'm this legal?
.I want them to confirm if I still have the diagnosis or not! I don't understand how can they take my diagnosis away stating that only Appointment Rheumatology in relevant. My EDS diagnosis appointment was after Rheumatology appointment.
Fibromyalgia alone isn't covering all my issues , I understand reticence to diagnose but once I have the diagnosis how can this be disputed ? Especially without a further consultation?
I thought that I have the EDS diagnosis, I need awareness (especially for my child who has a lot more going on and it is relevant in this case )
Please advise me, legally I am reading but not sure. I am going back and forth with GP , they agreed that that GP shouldn't have access to my records but that's not my main issue. I AM VERY TIRED in keeping explaining what is wrong with me and I have further surgeries (previous complications so EDS is important to be mentioned because it is relevant)

Wait until you are 54 and have 34yrs of what you describe. I could write a book!

Sorry you are going through this confusion too. It's beyond frustrating.

Sending you best wishes.

I’m a bit confused by your post but it reads to me that the rheumatology team said you don’t fit the criteria and, although a GP can diagnose hEDS, in this instance you don’t have a diagnosis of it. I would ask for a second opinion from a different GP.

There still isn't enough known for doctors to diagnose this, which is ridiculous in this day and age. I went private for a diagnosis years ago. Any problems now, I go straight to a private physio. Never found a single painkiller that helps anyway, they just space me out. I once had a consultant say there was nothing medically wrong with me. I couldn't walk. My hip was subluxated 🤬

Where I am, GP’s refer possible EDS (for any of the syndromes under it) to rheumatology. I also don’t believe that physio can formally diagnosis fibromyalgia (I was diagnosed by a rheumatologist).

Are you certain you were actually formally diagnosed by someone with the authority to do so for any of the conditions?

Wait. Rheumatology stated only Fibromyalgia and didn't fully assess for EDS, verbally advised to seek diagnosis through GP , which I did and GP gave diagnosis of EDS. Now another GP said this new diagnosis is an error entry.that confuses me! How can I get a diagnosis but then they contest it?

I see. Why don’t you go back to the GP who gave the diagnosis and talk to them about it?

In my area Rheumatology rejects all referrals for diagnosis of Hypermobility/HEDS/EDS stating this can be resolved in primary care at GP .Rheumatology only accepted to see me because of some raised levels of inflammation and was assessing to see if I have arthritis. When I have asked about diagnosis of HEDS she didn't want to talk about it sending me to GP for it (but she made a note that I don't fit the criteria and that's confusing for everyone!)
If I got the diagnosis now how can they go back on it to say I don't have it? Legally I need to understand where I stand. I don't have the energy or capability to argue and I struggle with communication so I prefer to have things in writing. Thanks

Might it be a transcription error when coding the rheumatology letter on your gp records. It is quite possible for different clinicians to reach different conclusions but the hospital will be more specialist.

How can I check if my GP had the authority to give me the diagnosis? She is the one who started all process and she wanted to discuss the diagnosis as prior appointment I have submitted a big email requesting diagnosis for hEDS, I didn't expect to have diagnosis of Ehlers-Danlos Syndrome and in a way I was happy that I finally was seen and heard and believed.

I wish to know what that means? Please explain .thank you

Physio suggested fibromyalgia and sent you to rheumatologist to officially diagnose?
rheumatologist agreed? Said to ask GP re HEDs and also wrote it wasn’t that?
GP1 was asked by you to diagnose HEDs and diagnosed EDS
you then asked for medication for EDS and GP2 said you don’t have it.

what does your NHS record say? Do you have access?

Thanks. Yes you are right. Rheumatology and physiotherapy agreed on fibromyalgia, Rheumatology suggested a treatment but GP 1 refused it but agreed to diagnose EDS.
It is well documented in my NHS records and yes I do have access to the notes as well. GP no 2 was barred by me to have access to my notes , she is always messy and never helpful , she was quoting in her message what Rheumatology report stated that I don't meet criteria for hEDS. RHEUMATOLOGY didn't state that we didn't fully did the assessment for HEDS..I had enough of everyone! I fit criteria based on GP no 1 .. if GP can diagnose why or is this legal to go back and disagree if they don't discuss/assess /involve me? Thanks

Can you just go back to the GP who did diagnose you? Then you can confirm you definitely have been diagnosed, ensure it’s categorically written on your notes (assuming you are diagnosed) and discuss treatment (which is surely going back to your physio for exercises anyway?).

I’m really sorry you are dealing with this, I have had experience of GPs disagreeing (thyroid treatment) and it’s so confusing. I would ask on e-consult to have a phone call with GP1 but do you trust them if they won’t progress the recommended treatment for fibromyalgia?

It's possible one GP is more knowledgeable than the other on this particular issue. Apparently hypermobility and Fibromyalgia should prompt GPs to consider whether hEDS is the real problem.

You may wish to ask for a second opinion, for clarity, or just ask the GP who diagnosed you what led her to that conclusion, so that you can work together to determine appropriate care moving forward.

https://gptoolkit.ehlers-danlos.org/

As far as I'm aware, there's nothing legal requiring Drs to agree with one another, or even offer patient centric care. They frequently disagree with one another and can be deliberately obstructive.

This is what I think has happened…

Rheumatology in most area these days will not diagnose hEDs or accept referrals for that as you have rightly said.

What seems to have happened here is that rheumatology have said to you that they don’t diagnose hEDS and your GP would be the one to do that if you meet the criteria as usually you wouldn’t even get to rheumatology, but they have instead diagnosed you with something else (fibro) and said in their report that in based on what they have found in the course of those investigations that they don’t think that you meet the criteria for hEDS. Your GP has then gone and diagnosed hEDS anyway which they have a right to do if coming in cold to this but understandably rheumatology is more specialist and if they have said they don’t think you have it but you have something else instead then I understand why a GP (GP2) would see no reason to overrule this even if for some reason GP decided to.

Thank you so much!
I still don't really get why I have to prove I fit the criteria when we already established this and second GP had no business is stating her opinion as she didn't assess me , not even a call , all she should have done is to read all documents. I don't think it is legal for a unwanted opinion to mess up things that are already in place. That is my issue , I don't want to go back and forth..the one that was barred has a huge history of complaints and GP surgery reassured me she will have a warning..

When letters etc are added to your online gp record the information is coded so that they can contact relevant groups of patients if needs be or monitor those with particular diagnoses. It is possible the person who transcribed your Rheumatology letter has made an error in coding it. Clinicians also look at differential diagnoses, alternatives if you like, so may reach different conclusions based on the information available, experience and protocols at the time

What law could possibly be applicable here?

I think the key thing is to concentrate on what you need to get out of the situation? Is there a particular treatment you want access to?

This would be my assumption too. That rheumatology have said you don't have it but if you did, it would be the GP to diagnose, not them.
You have emailed a GP laying out why you feel you have it, they haven't checked your notes properly so not read that the subject specialist ruled it out and so went with your request/opinion in good faith. You then requested associated medication and the GP who has received that has read all the associated notes through and realised the first GP's mistake.

Why GP 1 mistaken? She is actually the only one who assessed me properly and I agree with this diagnosis , Genetics are the one suggesting to get this diagnosis. GP 2 had no business in anything rather than read some notes and prescribe/discuss further treatment (as per Rheumatology advise anyways , for chronic pain, I am in a lot of pain in different areas mostly bones /muscles/some.ligaments) GP no 2 is a barred GP that I had requested not to see because all she does is mistakes and errors and I had enough of her! She isn't an expert she has loads of complaints not just from me. What I am trying to understand is how can my diagnosis of EDS be marked as an error because I disagree! Fibromyalgia diagnosis isn't fitting into whatever is going on with me but EDS is! Anyways thank you for your time and advice 💓