Research publication

[zoe69]

'I still can’t forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses

A research team in Cambridge conducted a study to better understand the lasting effects of patient-reported psychosomatic and psychiatric misdiagnoses on individuals with systemic autoimmune rheumatic diseases (SARDs).

Vasculitis is a rare condition that can be challenging to diagnose. Its symptoms often overlap with those of other autoimmune diseases or even cancer, yet many patients are frequently told their symptoms are psychosomatic. This misattribution can lead to delayed diagnosis and treatment, affecting a patient’s prognosis. But what impact does it have on their mental health and their trust in healthcare professionals? This study sought to explore these critical questions.

Link for the published paper:

'I still can’t forget those words': mixed methods study of the persisting impact on patients reporting psychosomatic and psychiatric misdiagnoses. academic.oup.com/rheumatolo...

[piglette]

It is reckoned that forty per cent of patients going to a GP are misdiagnosed. I suppose in a lot of cases it doesn’t matter, but in some cases it must have a devastating effect mentally not just for people with SARDS. On the news at least weekly you hear about misdiagnoses and the devastating effects this has. Sometimes even resulting in the death of young people which should not have happened. At least they are now looking at the role off GP assistants who seemed to be given a job way above their training and unknown to the patients, who thought they were doctors.

[Varp]

So many years I was led to believe I was going mad and exaggerating before diagnosis.Hopefully professionals will be better informed through this.

A great study.

[StriatedCaracara]

I included a link to this paper in a GP eSubmission I made yesterday.

Remarks like this from a consultant back in 1998 and then one in 2022 still affect the way I interact with medical profwssionals

Both have also done very well in their careers the first manages a whole institute and the second, younger consultant, receiving various awards.

Sadly, I am sure this was how they spoke to many patients. Maybe they have another focus in their careers.

The boards who oversee career progression and advise on award allocation are also at fault not preventing this. Safeguards are needed.

[oldtimer2]

Doctors are human, some nice, some nasty, some caring for people, some focussed on their own advancement. It damages patients who are not resilient. Only recently I was told I wasn't eligible for a new treatment - the GP had refered me as it's consultant only currently. The exclusion turned out to be my age, after a rather acrimonious exchange, as I challenged the consultant to provide reasons for my lack of eligibility. Patients can read too!

[Tuffymason]

Hello Zoe69, thanks for your post. I am a poster child for this topic. With an Autoimmune overlap of diagnosis, I have lived with this issue from the beginning. Now I find I live with it because of the multi diagnosis. I actually have seen a specialist recently, a neurologist who denies nerve involvement stating that the reason I am having the these symptoms is from the multiple diagnosis.

Whaaat? Is he saying that all these AI diagnosis can’t create, nerve damage too?? Frustrating! Callie

[zoe69 Administrator Volunteer Vasculitis UK in reply to Tuffymason]

I have GPA vasculitis and I have peripheral neuropathy caused by vasculitis.

[HiveMind in reply to zoe69]

Can I ask what kind of neuropathy you have. I’ve recently been diagnosed with Small Fibre Neuropathy but I’m not convinced it is. I don’t have many of the symptoms that others have with this condition. I think the consultant just wanted to give it a name. My main symptom is having like a bruised sensation all over the soles of my feet when I start to walk. It only happens when I walk. I don’t have numbness, tingling or sharp electrical pain. I have zero pain when walking about at home. Any advice would be greatly appreciated.

[zoe69 Administrator Volunteer Vasculitis UK in reply to HiveMind]

I have peripheral neuropathy: nhs.uk/conditions/periphera...