Maculopathy in both eyes

I’ve had progressive maculopathy in both eyes now with as perfect as can be hoped glucose levels. Just fought for my first appointment in 6 years to talk to a doctor about it and he’s never seen someone with my A1C levels ever develop this condition. He was no help at all. I’ve been waiting now 2 and a half years for the eye clinic to see me all the while my maculopathy has been progressing according to eye screening. I’ve tightened my control even further but the doctor just said “very strange”. I’m in the UK and I don’t know what to do. Just let it progress? I’m 34 with children and people that depend on me and the pressure to get on top of this is killing me, even though there seems to be nothing I can do. Is there some kind of number I can call. I’m 34 and am the only person in my family that has diabetes. I don’t even know anyone with diabetes. I just need to talk to someone that might tell me I’m going to be ok