AIBU to be pissed off with my inappropriate dentist.

[MurkyMo]

I asked my private dentist for a referral letter to a specialist as I have longstanding pain from a tooth that's had a lot of work done. I think the filling is bad or the tooth has a micro fracture, pain started the day after it was done. Decay was left inside and then I ended up with root canal treatment. Then a second RCT. My new dentist thinks there's nothing wrong with the tooth hence my move to an endodontist. But that's not the problem, the problem is the referral letter he wrote.

I gave him a document with a diary of my symptoms and treatments thinking it might help him find the problem and he says about it "tellingly, she references her own autism in it." Tellingly???? wtf?!

He says "I am not convinced that this is a dental problem, but appreciate that her dental fixation might be provoking a response in an already sensitised area"

Fixation??? WTF???? He's not a psychologist, why is he putting that in a referral letter to an endodontist. Surely it should be a clinical letter simply pointing out my symptoms and his clinical findings, not some amateur psychological assessment of me that dismisses my symptoms and alludes to my autism being part of the problem.

Any dental or medical professionals think this is off??

And what will the endodontist make of it?

I'm raging!

Respectfully, you cannot safely self diagnose medical issues based on your research (even if it did take hours) as it is no comparison for actual medical training.
The tone of your reply explains a little bit why I think the dentists included this, as it seems you believe to know better than they do.

You made your autism relevant by mentioning it, so I can see why they continued to pass this message on to the next medical professional.

I would be furious in your position. The dentist is not only not taking you seriously BECAUSE of your autism, they are influencing the endo to also be sceptical of you before they have assessed you because of your autism. It’s so undermining and patronising, not to mention potentially dangerous in a medical context. The arrogance of the dentist is also infuriating. I haven’t found anything wrong so it must be in her head! It seems as though he’s using stereotypes of autism (fixations) to prejudice your endo. He should have written- she has complained of these symptoms, I have carried out these investigations and treatments, I have found nothing, I’m referring to you for further investigation. I would write to the practice manger and explain that the dentist is leading the endo to have a prejudice against you which is very poor patient care

Your view is extremely outdated, these days medical professionals are supposed to write professional letters and expect them to be read by patients. Patients are fully entitled to read them, it is normal for a copy to be sent.

I think OP is annoyed because she disclosed that she had a disability and then felt it was used to minimise her concerns without an actual conversation.

Whether the dentist is right or wrong about autism having an impact, we don't know, and I'm not really interested in getting into a back and forth about that - I'm just answering your question about why OP might feel annoyed being written about in this way.

It's like if someone has a mental health condition, and they go to the doctor about something physical and the doctor in their notes writes "Well, X tellingly has anxiety, so they probably are actually fine and just worrying about nothing..."

It's a very frustrating response, especially to read it in a letter from one professional to another, rather than a conversation face to face. It sounds like it wasn't mentioned to OP so wasn't something she was expecting to read, which is also a bit shit really.

If the doctor truly thinks that anxiety/ autism are affecting OP's perception then he should say that to her and have that conversation with her before saying it to another professional. It's meant to be all about patient-centred care. It's a bit crap to read something so dismissive in a letter about you.

Tbf sometimes the patient does know better as they know their body better.

Ive been right on 3 separate occasions when initially either dismissed or ignored. I eventually did see the right specialists and was diagnosed- but one of these occasions needed urgent surgery so it’s a bloody good job I kept going back and saying what I was worried it might be.

Complain to the GDC if in UK. General Dental Council. https://www.gdc-uk.org/raising-concerns/public-protection-issues-and-concerns-about-dental-professionals

I suggest the ground are they are unprofessional, commenting on areas in which they have no clinical expertise and so are undermining confidence in the profession.

I don’t think they’ll get suspended or struck off, they may get some supervision perhaps and a nice bollocking for stepping beyond their area of expertise.

I'm not a dentist, I'm a doctor, but reading this, they dentist has used the word "fixation" not in the context of a psychological fixation, but rather in the context of "the tooth has previously been fixed". This is very common term used all the time by healthcare professionals after something has been fixed or repaired but is still causing problems. They are suggesting that their repair might be causing ongoing pain as your tooth is very sensitive. I wouldn't have batted an eye at this.

Can't comment on the tellingly thing.

Doctors spend years training, but you believe you can know as much as them from a bit of Google and a hyperfixation?

There are absolutely examples of medical professionals missing things, and there absolutely will be cases where a patient correctly pushed for more tests/investigations etc, but these are in the significant minority.

Believing you know more than the person who spent upwards of a decade training in the area is definitely not commonplace or based on any kind of reality.

The dentist has, I assume, carried out all the tests to ascertain whether there’s something actually wrong with your tooth. They can’t find anything, but you insist there’s something to find. So they have agreed to refer you elsewhere, and as part of that referral they’re essentially saying that they can find no clinical reason for the pain you’re reporting. That doesn’t mean you’re not feeling it, and it doesn’t mean they’re saying you’re not feeling it.

Autism can, however, impact people’s perceptions of pain, pain thresholds etc - in both directions. There’s no one size fits all but it is generally thought to be medically relevant.

A child in our family insisted he had an injury from PE (he absolutely didn’t, but school took him to A&E). Despite there being absolutely no evidence of a break (or any other injury - no swelling, bruising, burning) he was adamant it was broken and he was in pain. Insisting, acting as though he was truly in agony. The doctor insisted on an X-ray and cited his ASD as a main reason - because they said it can impact perception of pain, and apparently another child had been in not long ago presenting as everything being fine but they actually had a broken leg or arm, they just hadn’t registered the pain. Our child did not have a break, or anything else wrong. His arm had been knocked and he was just stuck on the idea that he was seriously hurt when he really wasn’t.

It is written rather clumsily and I would not want a patient to read that. I would always write a referral letter imagining that the patient is reading it as well. That said, the dentist does need to include your medical history as part of the referral, the endodontist will request it if not provided. It should have been recorded factually just as if a patient had diabetes or high blood pressure.
It may well turn out that the tooth needs removing, but if the dentist does not have enough clinical evidence to proceed with this, he is risking his registration if he goes ahead and then is wrong. Unfortunately “because the patient wanted me to” will not hold up in front of the GDC as a good reason to remove a tooth.
The GDC will only be interested in clinical negligence or gross misconduct, they will not be interested in a badly worded letter, but by all means, bring this up with the practice manager and they will address your concerns.
There can be a whole host of reasons for dental pain but not always caused by a tooth. The worst scenario is to remove a tooth and then still be in pain afterwards because the real reason was not investigated. If nothing obvious is found at first, it is definitely worth searching a little deeper for answers including jaw pain, facial pain, teeth grinding and other medical considerations that can mimic toothache. My hunch is it’s your tooth but my insurance won’t let me treat people on a hunch.
I think you should email the practice manager to ask for an apology on the way the letter was worded so they are aware of your concerns in this regard.

I just wanted to say OP that I had exactly the same tooth issue after a filling. It didn't feel right from the minute it was done, and after some years it started to become very painful on and off.
Two different (albeit general) dentists looked at it and neither could find anything wrong.
However, unlike you, I never felt that they dismissed the pain.
The tooth ended up cracking above the gum line (when eating some white bread!) so it had to be removed and I now have a nice gap (thankfully at the back).
So I did just want to say dentists absolutely can miss problems like these. I don't think either of the dentists who reviewed my tooth did anything wrong, but these things can be very difficult to spot!
I hope they can sort yours out!

Yes, sometimes that is true.
But OP has had multiple investigations and treatments for this particular problem and by their own admission states they want to save the doctor/dentist their job and are self diagnosing based on research.
This does lean towards (lean not confirm) fixation/medical/dental anxiety, and perhaps that’s why the comment from the dentist, albeit poorly phrased, is of relevance I think.

Too late it's gone to the endo. I'm hoping he'll take the tooth at face value and not pay too much attention to the amateur psychological assessment of me.

That’s not correct . As a consultant, pts should be copied into all letters about their health unless there is a very good reason. This means that letters must be written in a way that is considerate of this. This phrasing is not thoughtful or kind.
Significant needs such as neurodiversity or learning difficulties or communication issues should be included in all referrals to allow needs to be met.

Youve had many sensible replies here from both doctors and dentists. Other people's experience is of limited use to you and your symptoms. You've also had complete charlatans replying and encouraging an aggressive approach. It's totally up to you how you proceed but nicely, you do not have the knowledge of a dentist or a specialist from Google. Otherwise we wouldn't need any medical experts - AI would do it for us.

The endodontist is unlikely to pay any attention to the letter at all other than it's a referral. They will go through everything again and take a full history and do all the special tests again. This is so they can make their own assessment not based on what others have said. It means repeating yourself but is much more independent. I hope you find this reassuring.

And the key here is that one might do that research, I usually do, and one might have an expectation of what one is going to be prescribed.

But one has to go through a ritual whereby we ask what they think, guide them in the right direction, maybe dropping in some nice medical words here and there, add some queries in if one thinks they're missing something "I wondered whether the discolouration might imply anything?" "Oh but what about X" and then when they prescribe a medication or say they don't need to, ask them why they've decided that and why they've decided against X. That way the person doesn't feel like you're not letting them do their job but you're still fairly likely to get your own way.

That's how I do my expert appointments anyway 😅

I think professionals can be quite patronising when they see certain diagnoses and make blanket assumptions, treating the client differently from how they would a client without a diagnosis of autism. I get that you would be rightly hacked off about that.

I also know that I once convinced myself that I was ill with such and such, had all the tests and the symptoms miraculously cleared once the tests proved I hadn't got the illness. So it is possible you are imagining things (the mind is really powerful) and absolutely no shaming from me (as I say, I've done it myself). I think the endodontist will do his /her own x rays or scans and be able to tell whether the tooth is infected or in need of a root canal. On the bright side, if the nerve isn't dying you won't need the root canal though which would save you money and the hassle of getting it done?

The tooth or a confrontation with the dentist??!!! 😅

Well it's not blatant to me and I'm pretty informed about disability legislation.

It bothers me that yet again there's a mention of "rage".

Rage is not required here because it won't solve the perceived problem.
If you think that you have been discriminated against then the first course of action is to point it out to the perpetrator, and explain why discrimination has happened, using standard legal definitions.
Be the change that you'd like to see.

I think that won't apply here though, because going straight to triggering and rage is a very easy path. And because discrimination has not occurred.

Not undermining your rage, just suggesting ways out of it.

Rage is not required here because it won't solve the perceived problem.

I think you've misunderstood the pp.
They hadn't suggested it was required as a solution, but that it would be experienced as an involuntary emotional response.

Yes exactly. A purely clinical assessment and referral is what he should have written, not some pseudo psychological assessment. Just not relevant, is it. Like I said , he didn't even look very closely at the tooth, he just took the x-ray and said I can't see anything wrong. Well hopefully the endo won't pay too much attention to it. And the tooth will speak for itself.

I'll think about the practice manager. But I'm supposed to be going back to him for an implant when this other tooth is sorted. Oh gawd, i don't think I can now.

No, actually you're not correct. The advice is to write directly to the patient. Locally, consultants tend to write to the GP/other HCP and patient separately rather than writing to one and copying in the other. My original statement is correct, patients can't just access letters about them unless they're sent them directly or request them formally. And OP has clarified she was sent it directly.

Well, it sounds like you should probably change doctors anyway as you clearly don't like or trust him, and apparently he badly damaged your tooth. The 'tellingly' sounds awful, but I imagine it's because you linked the pain with autism by including it in your journal. If I read a diary of someone noting both their tooth pain and their autism, I'd assume they were connecting the two. But then... I'm autistic, so pretty literal!

You'll have to fill in forms for the endo anyway so can mention it there, along with any other medical issues. It's also presumably on your current dentist's notes, so all your treatment should take it into account. I don't think it needed to be on the journal, which was presumably just to record tooth symptoms.

Also, make sure the endo does a full 3D scan. Any problems will definitely show up on that, so it doesn't make any difference if they don't believe you. I had a tiny infection at the top of my root canal that bothered me for a couple of years, and nothing showed on x-ray. It was very clear on the scan though. I did have to have the canal cleaned out though, which was both expensive and unpleasant, so you should be very relieved if it turns out you're imagining it!

Yes, exactly. There is no reason whatsoever why a general dentist in private practice would know anything at all about autism. They strictly deal with teeth. Even if it's a gum specialist you need that's not a general dentist, so they literally don't even deal with every part of your mouth. Let alone know about neurodivergency or psychological issues.

Aha! Thanks for telling me that. Well it would make more sense that fixation refers to the heavily restored tooth rather than a fixation of mine that is causing psychosomatic symptoms. Although wouldn't it be THE dental fixation rather than HER dental fixation??

@owlpassport you got the wrong end of the stick and incorrectly advised op, numerous people have pointed this out to you.

The rest of your post may well be correct technically (that patients only have access to files, notes, letters via a formal request) although this is unfortunately entirely irrelevant to the thread. So yes, you are correct. But you are correct about something else.