"My 22year old son losing eyesight"

About: Ninewells Hospital / Neurology Ninewells Hospital / Ophthalmology

(as a parent/guardian),

After a visit to the optician, my son was referred to Ninewells. My sons vision was deteriorating fast. This was over 6months ago. After various tests, bloods, mri, electrophisioligy we went back to the doctor to be told that my son should be walking in with a white stick but there was nothing wrong with him. He did say he always does 2nd opinion. We were in and out his office in less than 5minutes.

My son was referred to a specialist who did the usual visual fields, then said we will try a gene test. 1 blood test that wasn't done months before. 3 weeks later my son has been registered blind has lebers optic neuropathy.

The doctor will not speak with me as my son is 22, and showed no compassion while we were at hospital, I thought that being a doctor u have to have a caring heart, I didn't like the way the doctor spoke to my son. My son is now a young man with a very hard future of adjustments to his young life. I just want anyone to know that never take 1 doctors opinion if you know it's wrong.

There is no cure for my son but the months of waiting and hoping are shattered, when months ago we could have known the outcome, and tried to come to terms with this horrible disease.

Do you have a similar story to tell? Tell your story & make a difference ››


Response from Tracey Passway, Clinical Governance and Risk Team Leader, Clinical Governance and Risk, NHS Tayside

Staff at NHS Tayside are very sorry to read of your sons experience. We will feedback this story to staff in the department, however if you want to get in touch with your details that would allow us to investigate further.

Please contact Alison Moss, Complaints & Feedback Lead, NHS Tayside on 0800 027 5507 or email complaints.tayside@nhs.net

  • {{helpful}} {{helpful == 1 ? "person thinks" : "people think"}} this response is helpful

Updates, changes and questions related to this story