Is hEDS support on the NHS disappearing?

I was fortunate enough to be diagnosed with HMS around the age of 13 and hEDS maybe 5 or so years later, all through the NHS.

I feel like as a child, my issues were taken more seriously and I was fortunate enough to see various specialists at Great Ormond Street when I needed to. This was back in the early 2000s, so things weren’t perfect but the NHS was a damn sight better than it is now.

In the years since my discharge from Great Ormond Street, I’d see a rheumatologist yearly for a general check in and GI doctors quite often as I recurring SIBO which seems to cause inflammation in the gut and scarring as a result.

Since the pandemic, I was privately diagnosed with POTs and Hashimoto’s. In both cases I was advised to transfer my care back to the NHS for medicine reviews and the Hashimoto’s needs monitoring as my thyroid function is dropping scarily fast. It’s also looking like tendon shortening surgery(or something like this) might be needed so that I stop dislocating my knees. I’ve caused permanent damage and no amount of physio and weight training is helping me to stabilise my joints.

So far I’ve been told:

* To download a physio app instead of seeing a rheumatologist. Rheumatology isn’t for EDS

* To refer to the NHS healthy eating guides and Fodmap diet (been doing this for years), don’t need to see a GI doctor for my issues.

* SIBO isn’t real and is only diagnosed by private doctors, according to my GP

* My thyroid function is still above the NHS thresholds and it’s normal for it fluctuates. A 2 year downward trend and increasing levels of antibodies isn’t indicative of an issue. Also according to my GP

* There are no clinics any longer for POTs. This is according to St Guys and St Bart’s, both hospitals the private consultant told me to try transferring my care to as he works with both.

* My food allergy symptoms are probably all in my head and not to worry about MCAS. It’s another “private doctor only” diagnosis.

I’m just at a bit of a loss on what to do.

I can feel my body breaking down day by day. But I don’t know where to turn to for support and it seems that the NHS just isn’t interested.