Research team highlights the power of doctors saying, "I believe you"

[Fran_Benson]

Many of you took part in this study on the long-term impact of misdiagnoses from Dr Mel Sloan and Prof David D'Cruz's research team at Cambridge. The paper was published on Monday.

The team thanks everyone who supported this work which was funded by The Lupus Trust, LUPUS UK, and Vasculitis UK, and then shared and supported by charities such as ourselves and the BSR.

I think many of you will relate to the experience of being told that your symptoms are imagined or not as bad as you're making out. I took a call just recently from a patient who had been told just that by their doctor and that person was devastated. So this study is very much welcomed.

Links

Link to 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...

This was reported widely in the media. Example article: theconversation.com/all-in-.... Example interview (Evening Standard) : pod.fo/e/2b4837

Lupus UK also wrote a good lay explanation and although it explains in relation to lupus, it is very relatable to PMR/GCA: lupusuk.org.uk/2025/03/03/r...

Patient and charity event in Cambridge UK

Please email Mel on [e-mail] if you would like to join a patient and charity event in Cambridge in early April to give your views on priorities for the next stage of this team's work. The afternoon will include a presentation and discussion of these results and a preview and discussion of the early results from the team's latest survey on care and equality (last chance to complete is by 6 March!): bit.ly/MM_PATIENTS2024

(Please note this is not an event organised by PMRGCAuk)

Fran

[PMRpro Ambassador]

One to put alongside Helen Twohig's paper "I suddenly felt I'd aged"! And make up into a gift-wrapped presentation that can be handed to the guilty.

I'm probably unusual - my 5 years of gaslighting over PMR has made me the slightly bolshie patient and PMR advocate I have become.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

That rings a bell... just replace PMR with GCA... 😏

[PMRpro Ambassador in reply to DorsetLady]

👍🥂😄

[Longtimer in reply to PMRpro]

Thank goodness it has! 😂

[Broseley]

I was misdiagnosed by a locum GP over the phone during covid as "Degenerative joint disease involving multiple joints", prescribed diazepam for the stiffness and told to go and get a massage! I have been trying since then to get this corrected on my medical record as it affects my travel insurance claim - I didn't declare it as a condition because I don't have it!

I ended up researching and self diagnosing, eventually persuading my GP to test my ESR and CRP by which time they were sky high and I had GCA as well as PMR.

[PMRpro Ambassador in reply to Broseley]

Trouble is - I believe only that locum GP can do the correction ... What a numpty though.

[Broseley in reply to PMRpro]

Unfortunately he's long gone. He didn't tell me of his diagnosis, I only found out when I finally got to see my medical records a few months ago.

[Broseley in reply to PMRpro]

It's listed under 'health conditions' as well as in my notes. Surely they can amend that?

[PMRpro Ambassador in reply to Broseley]

I don't know - but I'd certainly be making a fuss. They really need to consider the longterm consequences. I know I have hospital notes that probably suggest I am an alcoholic!! A middle-eastern duty physician treated me for alcohol withdrawal after I had a TGA (transient global amnesia) which had been correctly diagnosed in the ED but he was insistent it was a TIA (ministroke) and ordered a banana bag (bright yellow B vitamins used for alcohol withdrawal) for which there was NO indication at all. My GP thought it was hilarious. I didn't. Hopefully after 16 years here my medical notes have been binned ...

[Broseley in reply to PMRpro]

Unbelievable.

I have finally got my notes which the insurance company requested back in November. The surgey printed them out, 155 pages, though it only goes back to 2005. However I'm not going to send them off until they've been corrected!!

[sampete in reply to Broseley]

I was diagnosed with COPD which I didn't have, no one had ever mentioned it to me and I only found out by looking through my notes for something else. I complained to the surgery because as you say it can affect your insurance. Took about 2 months of me keep checking my records and complaining to the surgery before it finally disappeared. Good luck.

[Broseley in reply to sampete]

Thank you, at least they did it. I've been asking for 4 months now.