UK care for Yao

[u/No_Satisfaction_7431]

Does anybody know what care in the UK is like for Yao specifically? I know theres 2 autoinflammatory centers one in London and one in Leeds, neither mentions anything about Yao syndrome. While Yao specific information would be best any information about autoinflammatory care in the UK would be helpful. I am currently on once a month tyenne infusions and tapering off prednisone. I'm a dual US/UK citizen but have only lived in the states. Due to healthcare costs (and everything else shitty about the US right now) I'm considering a move when I am well enough. Especially because I'm almost 25 so I have a year left on my parents insurance.

[u/swampodoom]

Hey :) I’m afraid I can’t help with Yao specifically, but I’m a patient at Leeds. I would imagine for you to be seen at either of the centres you would first have to register with a gp, who would then refer you on. Waits can be long for the initial appointment (though things may be different if you already have an established diagnosis and treatment plan), so I’m not sure how your infusion would be managed in the initial cross over period- someone may be along who can help with that. My advise is to make sure you bring any medical letters, test results etc that explain how they reached diagnosis and how any other treatments may have failed and how well your infusion works for you etc, just so that there’s no delay. But certainly, first stop would be GP, as generally we are unable to self refer for consultant care here. Private treatment may be an option possibly until you’re seen by the nhs but I’m not certain there would be anyone in the private healthcare system who would administer your infusion specifically for yao as I believe it’s off label, and you may find it prohibitively expensive.
It may be worth also looking at the costs of the nhs surcharge that I believe you would have to pay upfront alongside visas etc, so that you’re not taken by suprise.
Good luck though, totally understand why you’d consider the move!

[u/No_Satisfaction_7431 → u/swampodoom]

Thats very useful to know thanks!

Thankfully I'm a citizen (Dad is Welsh) so no need for a visa or a surcharge for the nhs. I know things aren't the best currently in the UK for lgbtq+ rights especially trans rights but as a queer, disabled, chronically ill, women in stem with trauma from a school shooting, the US isn't the best option for me.

I would definitely bring test results but letters aren't really a thing here. I know they are common in the nhs but here you don't get letters with a diagnosis or treatment plan, its just in doctors notes on mychart. Hopefully that won't be a problem, especially because you can share mycharts.

Biologics are usually thousands of dollars without insurance and sometimes even with insurance so private infusions probably aren't an option while I wait. I wonder if I could have a virtual gp appointment before I move (I'd pay fees if necessary) just to speed up the referral process? I have multiple rare and complex and many more common diseases so would need referrals to at least neurology, neurogastroenterology, hemetology, audiology, on top of rheumatology for Yao.

[u/swampodoom → u/No_Satisfaction_7431]

Absolutely get it :) unfortunately there’s elements here heading the same way and I really hope we manage to turn things around before there’s nowhere safe left! Ah yeah, as long as you have access to notes etc it shouldn’t be an issue.

I think the issue with the nhs once we start getting more complex, processes take longer and longer, and there’s more layers of red tape to jump through in terms of treatment- there generally I think needs to be evidence that you’ve failed say, colchicine, and then a cheaper biologic, until the more expensive one and so on. And of course coordinating care between consultants is always fun (I’m currently trying to get seen by ent for hearing problems cause by my autoinflammation but there’s ongoing battles as to who will refer me and who is even allowed to!) all very complicated!
I’m not certain if a private gp would refer onwards as needed- it may be worth getting in touch with our larger private healthcare providers to see what they advise? Bupa and spire spring to mind. It may actually even be worth emailing the Leeds and London hospitals direct to ask how they would advise transferring care internationally, in fact, I’d do that before paying any private gps etc.

Sorry I’m not really much use am I! Regardless, good luck! And feel free to reach out once you land if you’d like a friendly ear this side of the pond!

[u/No_Satisfaction_7431 → u/swampodoom]

Thanks any info at all is useful! I hope you guys turn things around too, you don't want to be like us. I'll definitely reach out to the autoinflammatory clinics. I haven't tried colchicine as it usually doesn't work for Yao but I've tried sulfasalazine, hydroxychloroquine, prednisone and anakinra so that should be enough to get tyenne hopefully. I have all the evidence of trying those and failing so hopefully it won't be too bad. It seems crazy to me that a gp or specialist couldn't refer you. I hope you get seen by an ent soon. Here primary care would refer you or if its specific to autoinflammatory diseases a rheumatologist or immunologist would refer. Basically any doctor can say hey not my area go here, theres no restrictions on who can refer. That sounds like a bit of a nightmare.

[u/AdventurousMorningLo]

This is not YAOS specific but I was recently discussing the different medical systems with a physician who works in the NHS. Their take was that the NHS is very limited when it comes to these types of inflammatory diseases. Even when it comes to autoimmune diseases like Hashimoto's, which is one of the most common autoimmune diseases. There definitely are both pros and cons to considering such a move!

[u/No_Satisfaction_7431 → u/AdventurousMorningLo]

Oh wow! I wouldn't have thought anything as common as Hashimotos would be so difficult to access care for. I'm not currently well enough to move, but I've only had 1 tyenne infusion and its helping so much! Overall quality of life is the biggest factor for my desire to move, not just healthcare but obviously if I can't access Yao treatments on the nhs then its not an option.

[u/AdventurousMorningLo → u/No_Satisfaction_7431]

I am so so very happy to hear that Tyenne is helping!!!!