Patients should be fully informed....

[vipersnest1]

Today has been the third time I've found out something quite important about my health when I wasn't informed initially:

A long time ago, I was eventually told that I had a chronically inflamed sinus - I'd had an MRI a few years prior which showed it. The chronic sinus infection (I was told it had probably been there for at least ten years) resulted in me getting glue ear, losing 50% hearing in that ear temporarily and having to have grommets.

I have a prolapse (a rectocele) and also have a rectal intussusception - I only know about the intussusception because I've seen it mentioned in a letter to my GP. Luckily I haven't had a problem, but it can cause a bowel blockage, can cause rectal bleeding or in the worst case can cause part of the rectum to die.

Today I went to see a spinal surgeon (I have neurological symptoms in one arm). I already knew I had a bone spur on my spine which is pressing slightly on one nerve to that arm. I found out today that I also have a slightly prolapsed disc one level higher. The MRI he looked at was taken in 2022. The disc is highly relevant to my symptoms and I can't for the life of me work out why I wasn't told at the time, when I was informed of other findings.

I'm pretty pissed off to be honest. I can get why some patients should have part of their findings withheld if it in their best interests, but that doesn't apply for me.
WWYD?
And has it happened to you - I'm very interested to hear if this is common or not.

Yes, I found out I (officially) had anorexia because I happened to spot it on my medical record. Patient respect is at all time zero in the NHS.

I can get why some patients should have part of their findings withheld if it in their best interests facts should not be withheld except in very rare situations such as risk of suicide.

Sorry you've not had the full facts, perhaps a full discussion with a doctor about everything to get you up to speed?

Didn't they even hint at it, @ItsVeryHyacinthBucket?

@LightSwerve, who would I ask? I have a single hospital record but each department is only interested in their own notes. I'd almost be asking them to go through any records I've ever had anywhere (for example, the whole sinus thing was at a completely different hospital) - it would be like paying long for a needle in a haystack.

I don't think it really warrants a complaint?

Just bumping this up in case anyone has more thoughts on it....

The paediatricians failed to mention that DS had a partially collapsed lung before they discharged him with no treatment for the bacterial pneumonia which he had. (They tried to tell us that the pneumonia was a virus, but tests had shown otherwise so that never made much sense.) We found out months later when the GP told us. We complained but we've not even had a response yet.

With regard to your sinuses, you may like to google Plantago drops OP. They've changed my life.

Hmmm, now @ToothlessTerror, that's what I'm starting to suspect. I also found out that over all of the times DM (who had a diagnosis of COPD and then emphysema) had an exacerbation it was actually pneumonia.
Why (basically) lie? Surely the better people are informed, then they know what to look out for that might be something to take seriously? 🤷🏻‍♀️

Not told ds was posterior
Explicitly told that there was only an old break to my L1 despite me expressing concern and insisting on an XRay. Because the F2 had disagreed with me, she lied when the T12 was clearly broken. Weeks and weeks of unexplained pain. I had to request a copy of the radiology report.

I now insist on full copies of all notes and letters.

@SeatonCarew, I'm very aware of it now! If there's the slightest hint of anything going wrong I'd ask for antibiotics (I soldiered on for six weeks blowing all sorts of disgusting stuff out of my sinus when it all blew up). I also have a Neilmed sinus rinse bottle.

@RosesAndHellebores, the x-ray thing is crappy.
As for the posterior baby, mine was undiagnosed until they were born, hence the prolapse.

I have a rectocele too.

I don't understand your comment, but you're welcome.

@RosesAndHellebores, I ended up with a prolapsed uterus, cystocele, rectocele and had them repaired, along with a perineal repair too - the rectocele I've mentioned is a recurrence of the old one.
@SeatonCarew, sorry not to explain properly - I meant that I'm on it anyway.

Anorexia is a medical term for abnormal loss of appetite it can be due to cancer, medication, mental health problems ( it is known as anorexia nervosa) AIDS and a number of other diseases. It doesn’t always refer to an eating disorder.

To be honest I frequently see cloudy sinuses on dental X-rays but most patients are unaware of any symptoms. Sinuses are really just u-bends for the respiritory system . They catch all the dust and debri we breath in. Acute sinusitis is usually the result of the drainage from the sinus being blocked by inflamed nasal mucosa.
Chronic sinusitis is not necessarily the result of infection, often its allergy related or can be the result of nasal polyps.

So if you have polyps or chronically inflamed nasal mucosa it can block the entrance to sinuses which allows build up of mucous in the sinus which shows up on radiographs.
Glue ear is due to inflammation of the naso pharynx causing the station tubes to block. They are not art of the sinus system. So the sinusitis and glue ear share the same cause but one does not cause the other.

The drainage hole for sinuses is situated just inside the bony part of your nose but actually sits higher than the floor of the sinus. It is the one part of our anatomy which shows we were once on all fours. Drainage is much better when you get on your hands and knees and tip your head down with your chin to your chest. As a result of its position most of us will suffer sinusitis intermittently throughout our lives.

Eustation tubes*

That's awful about your DM @vipersnest1 and really bad about your back @RosesAndHellebores. There really isn't any excuse for this when the diagnosis is right there in the notes.

@Angrymum22, the Eustachian tube on that side is in an abnormal position. It was actively bubbling on examination by endoscope. I had been diagnosed with Eustachian tube dysfunction years before but no-one had joined the dots.

Yes, my gp recently told me that my ferritin of 6 was not indicative of iron deficiency because my hb is fine - so they won't offer any treatment and will retest in 3 months. But, also casually threw in that according to my notes I was very anaemic after bleeding for 10 months after having my child in 2019. The gp at the time told me my bloods were fine and prescribed no treatment and suggested spatone.

I'm glad I can see my own results in the nhs app now because I don't trust any gp.

@Judylicious, that's how I found out about the intussusception.
I wouldn't have know otherwise and I don't think it's a minimal finding.

When consulting about back pain last week the GP found a reference to slight spinal compression on a chest X-ray in 2021!! Good on that radiologist. I was suffering from intermittent facet point pain - thank you remote teaching in lockdown(s). It wasn't picked up at the time and the FJ pain was slight and soon gone so I didn't tell GP until it went into overdrive lately.

I remember a Dr referring to my fibromyalgia, and me correcting him, as he stared, confused, into the monitor.

I don’t have it anyway- I have osteoarthritis (which I mostly manage through exercise, diet, and occasionally joint replacement 😁), but someone, at some point, clearly wrote it on my notes, without telling me.

And the reason for that is in your OP
I can get why some patients should have part of their findings withheld if it in their best interests

Except that it’s not up a doctor to decide that.
You can have full consent from the patient if you dint tell them what’s going on to start with!

But doctors are humans. They make mistakes.
They often feel superior, like THEY know best.
Sometimes they dint know how to approach stuff (like telling a patient their cancer isn’t curable - this was my FIL)

It still shouldn’t happen.

During the birth of DC1 I was quite unwell and had a drip of antibiotics. Only found out when I read my notes at home that it was GBS and they failed to follow any protocol.

I had an ultrasound due to lumps in my abdomen, I was going through cancer treatment at the time so my mind was taken up with other things and I sort of assumed no news was good news. 15 months later I attended a&e for something unrelated but made a joke about the lumps in my tummy, the doctor pulled up my notes and the ultrasound report and seemed very surprised that I wasn't aware of the large hernia I had, he said it was 'a bit naughty' that no-one had let me know!