Patients Experience Should Be Listened To

[Sparklingsunshine]

Interesting story in the Guardian which I thought would resonate with many of us on here 😄theguardian.com/society/202...

[helvella Administrator]

I think this is the paper:

Attribution of neuropsychiatric symptoms and prioritisation of evidence in the diagnosis of neuropsychiatric lupus: mixed methods analysis of patient and clinician perspectives from the international INSPIRE study

academic.oup.com/rheumatolo...

A PDF is currently available - though looks to be a pre-publication version.

The article is pretty good - simple and understandable. I think it will draw significant patient support.

[humanbean in reply to helvella]

In the very first paragraph of the PDF :

any neuropsychiatric symptoms, such as headache and hallucinations, cannot be verified by tests or clinician assessment

And this is a massive problem because doctors never take a patient's word for what their symptoms are. This is why I will do everything I can to avoid seeing doctors unless the problem is visible. I would dial 999 if I thought I was having a heart attack or a stroke. But I would struggle to decide what to do if I thought I might have developed cancer because they won't believe me.

[crimple]

Sprklingsunshine, hopefully this is the first chink of light into the world of high handed and ignorant medics, who think they know it all when in fact they understand very little. No doubt many people, probably all on here, have experienced longstanding symptoms that have been ignored, are classed as irrelevant etc.

Recently I have experienced not just a chink of light but a full beam at my own surgery☺️ who are willing to listen and take note . Lets hope this is the dawning of a new age of doctor and patient collaboration.

[Doris11]

Interesting thank you 🙏 I’m my patients notes a GP has written “she got it off the internet” Yes it was the NICE guidelines! 🙈🙈

[Sparklingsunshine in reply to Doris11]

The bit I picked up on was that women and those from ethnic minorities are more likely to have their symptoms dismissed as psychosomatic. Indicating the medical profession has a long way to go to overcome both deep seated sexism and racism.