UK Keratoconus Self-Help and Support Association

My daughter has recently been diagnosed with KC and I was wondering if I can get a susidy for the cost of contact lenses.

Hello Jayne, and welcome to the forum.

Quite possibly, yes. Certainly if she gets the lenses from the hospital, then she should pay no more than the NHS lens cost of £40something per lens. Hopefully, someone else with more knowledge will pipe up soon!

Just to add to what John said, if your daughter is still in full time education she should get her lenses free. Otherwise, she should get them at NHS rate which is currently around £45 per lens and covers any changes in prescription during a calendar year. But you would need to get the prescription for the lenses from the hospital eye service (even if they don't actually make the lenses up) to get the NHS rate. If you'd like a booklet about keratoconus which we distribute, do e-mail me at anneklepacz@aol.com
(John, if you haven't already done so, is it worth moving this thread to the main forum where more people will see it?)
Anne

Yes like Anne, I'm sure anyone in education up to 16 [or 18?] would get an NHS prescription for lenses free. Also people on Income Support qualify for free lenses.

My second graft was done after my first year at uni, and fort he short duration i could wear a lens, I was classed as full time education and got the lens free.

That was back in 1989 so things may have changed.

In all the years I needed to wear contact lenses I never paid the full commercial price for them.

When I lived in Aberdeen I saw a high street Optician who worked under contract from the Hospital. I think that they picked up the tab for the bulk of the bill.

In Glasgow I saw a hospital based ophthalmologist, again I paid only the standard NHS price, or where the lens failed, nothing at all.

Jayne, it may be that the rules about payment for lenses have changed, but when you go to the optometrist, make it clear that your daughter is in full time education and ask about cost. I do promise that they will not mind.

Post the answer here and somebody who knows will tell you if the information you are given makes any sense.

Andrew

Yes i have always paid reduced costs which are about £40 per lens firstly through school and then at uni but also because they are a strong prescription. Do find out from your optimetrist, wishing you the best!

Sweet X x X

thank you all for the replies. it has been a very worring week. we go to bethans opticians this week so will take your advise and ask lots of questions. bethan is only 15 and we are not sure whats in store for her.
any advise would be grateful received. thank you.

Jayne

Easier said than done; but try not to worry too much.
Make sure that you ask as many questions as your feel necessary relating to anything about the condition; both here and with your optician.

Is the optician a local high street? I would suspect that somewhere along the line she will get referred to a NHS Eye Unit which will specialise in Contact Lens / Glasses for KC; which again, is a good thing!

Please do keep us informed on the progress!

J

Jayne,

May be teaching Granny to suck eggs, but write the questions down and make a note of everything said. It can be easy to forget something and as this is all new, it is easy to get information overload.

I have kept a diary on and off since my Mum first went to the opticians with me when I got diagnosed 20 years ago.

KC may have been caught early in which case glasses will be enough to correct sight. KC is an odd condition, it can stabalise as quick as it can start. Some it stabalises for a very long time, others itis quite agressive.

One thing to remember is that only 5 - 10% require a corneal graft and of these about 20% I thin have a graft in each eye.

The 90 - 95% of KC'ers live a relativly normal life with glasses or one of the many types of contact lens that are now available for KC.

From an educational point of view, Anne Keplatz can provide this, but make sure your daughters teachers get to see it so if she does fins school difficult heading towards GCSE's, this can be taken into account.

For me, certain coloured pens on a white board are hard to see, especially if there is reflections/glare on them. I know many schools use multimedia pc projectors too and some text fonts and colours can be hard to see which is again something teachers need to be aware of. If they use such media, a printed hard copy should be available for your daughter so she is on a level pegging with her classmates.

Career wise, KC should not cause I problem, after my corneal graft I started a Micro-Biology degree while partially sighted and when I could see I also raced cars on a semi-professional level.

Good luck, these new conditions sound awful at first, but we are an adaptable lot willing to help where we can.

Regards

Gareth