Juvenile Glaucoma

[Dodie68]

Hi, my 20 year old son has been told he needs a trabulectomy due to juvenile glaucoma however has been given no check ups in the meantime. He has been told the wait could be between 6 and 12 months. Does this sound right, no check ups despite potentially a 12 month wait?

[Jon1988]

Honestly, with the state of the NHS at the moment I strongly think you need to be your own advocate and force them to take action sooner. I would call the hospital and make them see your son sooner, or at least have a couple of private appointments with a specialist. They cost £170 for the first one and £130 for follow ups, but they are so worth it. I spent an hour with my consultant on my last visit, and wasn’t even seen by a consultant when I went to the NHS.

[hoolohoops in reply to Jon1988]

how did you get a private appointment/find a good consultant to go to?

[Jon1988 in reply to hoolohoops]

I looked up a glaucoma management specialist who was also a surgeon on the Spire hospital website. They have profiles you can review. The consultant I’ve got is lead glaucoma specialist in the hospital (which they often are privately). Then you just book through the website, no need for referral

[Helen_GlaucomaUK Administrator]

I would definitely give the eye secretary a call at the NHS hospital your son goes to, just to ask about another appointment. It doesn't sound right that he is waiting for a trabeculectomy for 12 months without being checked at the eye clinic.

[Dodie68]

Fortunately he now has a date for his pre-op, 30th September, which is much sooner than they indicated. Any idea how soon the operation will follow? Also, can my husband or I go with him for the pre-op and operation? I know he's officially an adult but it's a lot for him to deal with and really scary for anyone let alone someone of his age.

[SpaceBend in reply to Dodie68]

pre ops are valid for 6 months I believe.

You can go with your so. I had one of my parents with me for at least 3 ops this year.

I would echo the private appointment if you can afford it and perhaps make sure the doctor you see privately is the one performing the operation (not just supervising)

Good luck!