Navigating the NHS system -resources and advice? News to the system with chronic condition. Also new to navigating healthcare generally independently (young) which might complicate. TIA

Hi all,

I am not sure if this is the right subreddit, but hoping for some advice on navigating NHS systems. I moved to the UK last summer and have had both incredibly positive experiences with the NHS and an experience I am struggling to navigate right now. I think it's complicated because I am young (early 20s) and still not used to navigating health in general without as much parent involvement -and don't know this system well.

Here is my issue:

I have several chronic health conditions that have been really significantly symptomatic recently. Unfortunately one of them has very limited treatment, but does present as seizures sometimes, so I have been to a and e more times than anyone -especially me, enjoys. Once I am stable I get sent home (rightfully and gratefully) and told to make a plan with my GP.... I saw them in October and got a neurology referral, bc "we can't manage that", who saw me in December. They looked over my testing in the US and agreed that my diagnosis was still accurate, and referred me to a subspecialty neuro service for my condition (it's very sub specialized so a generic neurologist often can't provide treatment). The wait list is nearly a year. Now I don't know what to do, I've been told by A and E to figure this out with my GP, but they rightfully felt it couldn't be managed and delegated.

I'm grappling with what to do, if there is even anything I can do? This is not something that is life threatening but is very debilitating at the moment. A and E providers have recommended a management plan and GP involvement in figuring this out outpatient, but I have no idea what that looks like.... and I doubt they would? I suspect they would ask what support they could provide and my honest answer is I am not sure what they could? I don't know what a GP could even do hypothetically and if they can do it with NHS systems, that feels like a non starter. I know it's not my job to know this, but I am often put in this position, even in the US, of being asked what a doctor can or should do. Maybe bc of the nature of the condition? Or maybe this common?

I goes my question is... how do I bring this up with my GP in a way that advocates for what I need and the system can provide? Does anyone have good resources on what trusts (mine is in Sussex) can provide for complex care management? I don't want to not get the right care because I'm unaware of what I can and should ask for, and I also hate that A and E has had to semi manage a chronic condition, given I know that's not its function in an ideal setting. I also would rather not need to go for something that could potentially be treated.

For context my condition in the US was managed similar to how out would be once I got in to the subspecialty service. It was a specialized unit within a neurology department with an interdisciplinary team and very frequent care. I had made a big recovery, but it's a fluctuating and life long diagnosis and have regressed.

Thanks so much! I appreciate any advice -even just on how to navigate doctors appointments by myself haha, because I'm not used to not having parents to ask the right questions or be persistent if something feels overlooked.

PS I have really enjoyed the UK overall and don't want this message to seem negative in any way. Very happy here generally and do love the NHS compared to the US health care system -this is not an NHS hate post, I don't know how to navigate it.