UK Keratoconus Self-Help and Support Association

Hello all,

Learned alot over the last week or so. My son had problems seeing with his new glasses so I went back and asked them to recheck his prescription , the optician spent over an hour and then told us she suspected Keratoconus. She said she could scissoring in his eyes. She thinks both are affected. She has sent a letter to the GP for referral.

Since then my husband has bupa through work ( started last month ) and we can have a first appointment tests and a follow up paid for. I had problem getting a peadiatric Dr in the South East. We are in East Kent. I was advised about a dr at the centre for Sight at East Grinstead. Not sure if I can mention name ? So I have booked to go there next Friday. They advised us test would take about 3 hours. I am not sure bupa will cover anything more than the initial appointment if it is deemed a "chronic " disease. So not sure how we will get back with NHS. Not sure we can afford to pay privatly ourselves. We have never used Bupa before. It would be nice to know if anyone has been there ?

My son was shocked , he was upset as he is due to start college for automotive and driving soon. We are not sure what's to come .
The forum has been very informative and helpful

Hello purpletopaz and welcome!
East Grinstead has a very good reputation for KC, so your son will be in good hands. And you shouldn't have a problem getting on the NHS track if your GP refers you. But it'll be good to know more about your son's diagnosis before college starts. Have you found the leaflet 'supporting students with keratoconus' that you can download from here and give to your son's tutors? https://www.keratoconus-group.org.uk/in ... lications/
While BUPA won't cover routine appointments or the cost of contact lenses if they are needed, I'm pretty sure that they DO now cover the cost of corneal crosslinking if that is recommended for your son. (There was a very lively discussion on this forum a few years back when private insurance companies refused to pay for this - it hasn't been mentioned for ages, so I'm assuming it is now covered. Maybe other forum users can confirm).
You'll find lots of information on our website including videos of talks we've had from specialists (see Professor Frank Larkin's talk on crosslinking in children for example) and newsletters with the latest developments. And if you'd like to join our mailing list for newsletters and news of forthcoming events, just e-mail anne@keratoconus-group.org.uk
Do let us know how you get on at the appointment next Friday and don't hesitate to come back to us with any questions.

It is quite common for patients to have part of their treatment privately and then swap into the NHS. The NHS and your consultant should be able to make this process a smooth as possible. If you are seeing a consultant privately tell them that you will want to swap back at an appropriate stage. A useful starting point explaining this can be found here https://www.nhs.uk/common-health-questi ... -affected/

Hi,
We went to the appointment with the centre for Sight on Friday and my son has been diagnosed with KC in both eyes with his right eye being worse. And bulging to the bottom. He also has a squint which is why I took him to the opticians in the first place. She believes the squint is because the brain won't use the right eye as the vision isn't great and that once his is fitted with a gas permeable lens his eye will return to centre, as when his left eye is covered his right eye pops back to the middle.

Before that she has recommended CXL in both eyes to stop progression. Fortunately through my partners work Bupa will pay for both eyes and 2 follow ups. So we have provisionally booked him in on 7th October.
She is of the opinion with the CXL and a Contact lens he will achieve good sight in his right eye .
She wouldn't allud to what stage it is. He has 6/10 in RE -4.00 and 6/7.5 in left - 4.50 ( the optician gave us those figures )

I feel incredibly lucky my husband got this Bupa insurance through work only 2 months ago. As we don't know how long we would be waiting on NHS.
We still have a lot to learn about his eyes and the effects.

Also. I thought I had added a post thanking you for your replies. But maybe I did not submit. But they were really helpful to me both of them. I ahve the print out for my son for college and will try to speak to his tutor before the surgery. Thank you for you help and support