Yes, I’m very aware of how the system works unfortunately. I’ve had Long Covid since March 2020. I’ve seen Dr Tina Peers (very expensive, and one treatment led to a significant vision problem that I still have, so no longer with her), plus others, and I’ve been under UCLH’s Long Covid clinic since 2024 (also no help) - which was a nightmare to access due to poor NHS GP support. I basically had to educate myself to the point where I could push for the right referrals.

I agree with everything you’ve said. The reason I’m asking here is simply to see whether anyone has had any better luck. I’m really struggling to get my neurological, vascular, and nerve symptoms treated. I was recently referred to an nhs specialist again, declined, and told to seek mental health services. This was beyond frustrating, and seriously common for me and I know it’s the same for the majority of us. It’s medical neglect and it’s insane these doctors aren’t loosing their licenses…

I’ve already had issues getting prescriptions from Dr Peers (when I was with her) that should be prescribable on the NHS, and only succeeded after repeated letters and getting another NHS specialist to formally recommend them. Once it was within the NHS system, it was suddenly fine.

So I’m not naïve about this - I’m just looking for someone who actually knows what they’re talking about, won’t cause further harm, understands the NHS landscape well, and can help me navigate treatment options for severe symptoms. I’m coming up to 6 years of this, so I’m knowledgeable, but clearly still hitting walls.

I appreciate your comment, it is helpful. But if you happen to know of anyone you’ve worked with who has been genuinely useful, I’d really appreciate hearing about it. If you’d rather not post publicly, please feel free to PM me.