Rejected NHS paediatric cardiology referral shared with me: ‘Unfortunately are not seeing patients for assessment or treatment of POTS. In rheumatology and cardiology fields it is widely understood that dizziness on standing is a normal physiological phenomenon, but in some individuals it may be…. - ThreadSky

binitakane.bsky.social • 37 days ago

Rejected NHS paediatric cardiology referral shared with me:

‘Unfortunately are not seeing patients for assessment or treatment of POTS. In rheumatology and cardiology fields it is widely understood that dizziness on standing is a normal physiological phenomenon, but in some individuals it may be….

Comments

binitakane.bsky.social•37 days ago

…exacerbated by factors such as physical deconditioning, poor muscle tone, anxiety and somatisation. As such the management should consist of reassurance, advice about physical rehabilitation (physio) and in some cases where it coexists with chronic pain/fatigue, psychological therapies.’

binitakane.bsky.social•37 days ago

It’s 2025.

How is this this somehow still acceptable?

I won’t name and shame individuals or the Trust involved. This is a system problem within paediatrics (and medicine in general).

binitakane.bsky.social•37 days ago

*systemic

bennevis.bsky.social•37 days ago

The NHS has been systemically infected with quackery #Neurolinguisticy
#MUS (Made Up Syndromes)

https://www.scottishlegal.com/articles/david-j-black-pace-gate-have-we-been-waddelled

From @rfh1955.bsky.social to 'Yuppie flu' to #cfs to #FND to #PNS

#MyalgicEncephalomyelitis #LongCovid

stevefifield.bsky.social•36 days ago

Are there any cardiologists we CAN trust, without a ‘personal opinion’?

Malicious. Not sure why we protect them from shame.
No doubt they will continue to influence other trusts and staff wherever possible.

(This is right up there with predominant transmission mode for Covid ‘being by droplets’ 🤬)

stevefifield.bsky.social•36 days ago

Re: “and cardiology *fields* it is widely understood” - clearly working in the wrong ‘field’.
Or did the PA write that?

madknittrsteaparty.bsky.social•36 days ago

It isn't acceptable. But how very revealing. The 'unfortunately ' doesn't even come across as particularly sincere. I hope this is going to be challenged by people with more clout and capacity than I. Thanks for sharing.

madknittrsteaparty.bsky.social•36 days ago

Reminds me of a filmed lecture I saw where a cardiologist who does take POTS seriously was assuring the audience that POTS 'wasn't just fainty, emotional girls' (or words to that effect) but a real and debilitating problem. It was clear he felt the need to hammer this point home to his colleagues.

catherine11.bsky.social•36 days ago

Not acceptable but unfortunately not surprising after our NHS experiences.

exceedhergrasp1.bsky.social•35 days ago

I hope you are naming more privately. Patients spend time and energy getting to these clinicians believing they will do their job. There is no reason for them to waste their time with a clinician who is too lazy for the work of diagnosis and treatment.

camregier.bsky.social•37 days ago

tokenwelshman.bsky.social•37 days ago

"Anxiety"

FFS

notunpackedyet.bsky.social•35 days ago

I was told, by cardiologist on the POTS UK website, that all chronic illnesses for which we don't know cause are just imbalance of para/sympathetic (i.e. chronic stress) & that I am a frightened gazelle being stalked by lions, & their patients who get results are those who reduced stress...

notunpackedyet.bsky.social•35 days ago

This was just back in November. And I will name and shame - Dr Boon Lim. Anyone looking for help with POTS, don't touch him w a barge pole. Full of prejudice. Asked if I'm an only child, what I do for work, where I went to university (i.e. A-type personality is the problem).

meepmorp.bsky.social•35 days ago

That physician *might* have been referring to things that have valid scientific basis, but “reduce stress” is not medical advice. Patients need strategies and treatment to improve autonomic system. In the long covid realm this is based on the scientific evidence https://longcovidtheanswers.com/recovery/

notunpackedyet.bsky.social•35 days ago

Honestly, don't fall for this. There are a million grifter course for 'brain retaining' etc. to cure ME. "With the power of neuroplasticity..." - major red flag. None of these grifters show causation, they wave at a few studies that say things like HPA axis and para/sympathetic, but the science...

notunpackedyet.bsky.social•35 days ago

... hasn't progressed enough to show that the actual cause is...well, whatever collection of vague fig leafs for ignorance these grifters point to. And those who get better w these services: show me the controls, the non-intervention groups. Except, there aren't any.

notunpackedyet.bsky.social•35 days ago

I know you mean well by flagging this but, I promise you with all my heart, in the ME community, we've been down this road with these types of services a million times. Until they show causation, I wouldn't give them an inch.

meepmorp.bsky.social•35 days ago

(I’m not affiliated with this, I’m a long covid/mecfs/pots patient myself and just heard about this today and had coincidentally been listening to the relevant section.)

binitakane.bsky.social•35 days ago

I’m a bit sceptical about anything that charges money and promises as much as this course. Also an interesting description of an OT and what they do. I’m all for autonomic nervous system work, but as you say, it’s complex.

notunpackedyet.bsky.social•35 days ago

I'm not a long COVID patient, I've had ME for over 20 yes, plus CCI/AAI and tethered cord. He wasn't referring to any scientific basis and he even lumped my spotty skin in with 'caused by para/sympathetic imbalance'. It's the same bullshit that's been used to gaslight ME patients for decades....

meepmorp.bsky.social•35 days ago

Yeah, I get it, and there are a ton of hucksters out there. This one came recommended by Dr Daniel Griffin who is on This Week in Virology and has earned my trust (has been great at highlighting that CBT and graded exercise therapy are ineffective & dangerous eg, and wrote a review of the literature

littlegreyrab.bsky.social•35 days ago

My daughter most likely has this. We couldn’t even get an appt privately. It flares, just like an autoimmune condition, & when it does she has crippling chest pain, tinnitus, nausea, + pulse above 180. What has helped most to regulate her autonomic system has been beta-bs + a breathing exercise app

littlegreyrab.bsky.social•35 days ago

📌

natalieclegg.bsky.social•35 days ago

It’s so disappointing that this is STILL happening, despite the huge amount of science saying otherwise. I finally got my diagnosis from Dr Gupta last summer, at 33.. after 20+ years. One NHS Cardiologist told me POTS was so rare, I couldn’t possibly have it - after a +ve tilt table test. Baffling!

emmavardy2.bsky.social•36 days ago

Unacceptable.

derringdo.bsky.social•37 days ago

"Sorry, but unfortunately we do not provide assessment or treatment to patients presenting with this life-changing illness that falls under our specialty, because... [outline how we believe outdated, pseudoscientific misinformation about this condition]." NHS

carolrifkabrunt.bsky.social•37 days ago

Absolutely unacceptable. Though I would also say that it could be a blessing in disguise because a dysautonomia illiterate cardiologist can do more harm than good. Since POTS isn't really a cardio condition most know nothing about how to treat it.

carolrifkabrunt.bsky.social•37 days ago

There used to be a fantastic NHS POTS/syncope/EDS consultant in Plymouth but he has retired now and the whole southwest has nobody. Most are using the POTS UK drs directory and going private if they can. Disgraceful that the NHS picks and chooses which illnesses can get treatment. So wrong.

nikki-s.bsky.social•34 days ago

WTAF?!!

otskiff.bsky.social•36 days ago

💔💔💔💔

vlister.bsky.social•37 days ago

Sadly most patients in the UK need to go private to get a definate POTS diagnosis.

binitakane.bsky.social•37 days ago

The thing that makes me sad (and angry) is simple treatment like fluids, salt and rate control can be life changing for these kids.

vlister.bsky.social•37 days ago

Totally agree. I've suffered with POTS for 30 years. No help on the NHS whatsoever.

binitakane.bsky.social•37 days ago

I’m so sorry 😞
It’s unforgivable that 30yrs later kids are in the same position today.

paulkeeble.bsky.social•35 days ago

We have to get the standard practices replaced, POTS, MCAS etc it all needs guidance and rolled out before most people have a chance of getting adequate care.

binitakane.bsky.social•35 days ago

I’m pushing hard for a clinical treatment guideline for ME and Long Covid at national level. It beggars belief that this is something that needs ‘fighting for’ - but here we are.

paulkeeble.bsky.social•35 days ago

Its been a very long fight so far! Here is hoping we finally win soon.

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