I lost all my peripheral vision after sudden emergency brain surgery. And have been battling with medical bills and testing since. I would be willing to talk to you about it. My grandmother has RP so I have some knowledge on how that effects life. I am an open book so feel free to message me with any questions :)

I don't have experience with the welfare care system, but will say one thing that when it comes to healthcare I have found that the "best" treatment rarely means the best. My parents worked hard to get me into the best specialist in the country, who has never spent more than two minutes in a room with me, could care less because I'm just a standard case, lectured me when I said I didn't want to pay his overpriced version of my prescription, or had concerns about one of my medicines and told me I had to chose a career sitting down all day. But the doctor who originally suspected it and the one who officially diagnosed me spent way more time, talked through any concerns I had, and really personalized my medicine.

I have seen given up with the "leader" of the industry, as with something like RP, the treatment is pretty standard until you get really bad which is when you qualify for trails to redeem eyesight.

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I don't know if that really helps, but something about the eye care healthcare.