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"Misdiagnosis and inappropriate treatment"

About: Queen Elizabeth University Hospital Glasgow / Ear, Nose & Throat (Ward 11b)

(as a service user),

I was admitted to ward 11B out of hours Saturday afternoon for a helix cartilage piercing that had become embedded. The presentation was unusual and confounded all who had looked at it. This is because I have Ehlers Danlos syndrome. A senior doctor examined it Monday morning and  told me that via one small knock I had acquired permanent damage in the form of cauliflower ear and tissue necrosis. It would never recover and there was no point attempting to drain the area or do further investigation. This had been caused, it was claimed, by pus becoming trapped in the cartilage area and forming an abscess which had then hardened. This seemed highly unlikely / irregular given the complete lack of any sign of infection prior.

I explained I have Ehlers Danlos syndrome which causes me to produce defective collagen and this manifests infection any number of unusual ways. They would not consider this a possible cause or even confounding factor. Worse still they had a group of junior doctors also convinced of this utter nonsense theory. I was kept further and remained on very strong IV antibiotics.

I self discharged that night (unable to cope with the excessive heat in the rooms). Tuesday morning it was examined by my GP who confirmed no antibiotic treatment was necessary and the lump was likely a rapidly formed keloid due to EDS. As of Tuesday evening - 24 hours after I left and 36h after this "diagnosis" by the senior doctor - and without any further treatment - I no longer have a lump. At all. It has gone completely save for a slight bump at the site of the surgical incision (made to remove the piercing). My "permanent disfigurement" that should not be investigated and would never resolve is gone. Permanent, it seems, is a shorter time than one would think.

I appreciate that most doctors do not have much knowledge of EDS but perhaps that senior doctor may consider listening to patients and learning about things they are unfamiliar with so that they do not make blatant misdiagnoses and prescribe antibiotics - which as we all know should not be overused - without cause? And certainly so that the next generation of doctors are not mislead and miseducated.

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Responses

Response from Nicole McInally, Patient Experience and Public Involvement Project Manager, PEPI, NHS Greater Glasgow and Clyde 2 years ago
Nicole McInally
Patient Experience and Public Involvement Project Manager, PEPI,
NHS Greater Glasgow and Clyde
Submitted on 05/04/2022 at 16:31
Published on Care Opinion at 16:31


picture of Nicole McInally

Dear HappyC

I am sorry to hear of your experience within Ward 11B and the concerns that you have shared in relation to your diagnosis and management. As Care Opinion is anonymous, we would be grateful if you could contact our Complaints Team at: Complaints@ggc.scot.nhs.uk so that we can investigate this.

If you don’t feel comfortable doing this you can contact the Patient Advice and Support Service (PASS). They provide independent and free advice and support for patients in Scotland. You can find more information at: Patient Advice & Support Service | Citizens Advice Scotland (cas.org.uk)

Thank you

Nicole

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