UK Keratoconus Self-Help and Support Association

Hi Group,

This is my first post, I have just been told today that I need to switch to contact lenses from my trusty glasses. I have read all the posts and understand the different types of lenses etc.... but I was disgusted that my hospital does not provide lenses to those with an income, I was told to go back to the opticians. I did this expecting some help from the government, after all the money I have paid into the National Health. But you have guessed it.... I have to pay for them. I have an appointemnt with them on Thursday. I have read several months quick posts, and can see this is a typical problem, but I was wondering if anyone else has been left to pay the whole bill, or if anyone knows of a solution to help me cut the cost ??? Also can anyone give me an estimate as to what I may have to pay and how often ??

Comments very much appreciated, as it appears my health Authority don't have any spare cash for me !!!

Thanks

Adam

Hi Adam, welcome to the group.

You're right, it is very odd that different NHS hospitals charge differently.

I think someone was going to contact Alan Milburn MP about this - it may be worth contacting your own MP.

Certainly, Moorfields only charges the "standard NHS cost" of I think £42 per lens for all types of lens; even for sclerals.

I got my Rose K lenses from my local optician, and they worked out at about £55 each. Each Rose K lens probably lasted about 6-9 months before my eye changed, but that's an individual matter.

Let us know how you get on.

I recently saw Alan Milburn and he said he woould investiagate the funding differences within the NHS. I will be contacting his office next month to check progress, think anyone who has simliar funding problems should see their MP.

I paid nearly £300 with d&a a year ago for a pair of softperm lenses and fitting services. I now need a new pair and as I am a member of their 'schemes' it will cost £180! Have wrote to my local eye hospital that I go to and they have agreed to pay for a 'one off' pair but made it clear that would be it!

Guess it's better than nothing!

Dave.

Adam

The variation in services offered to people with eye problems in different parts of the United Kingdom is a scandal that ought to be exposed,

In Glasgow I receive an excellent service from dedicated and specialist staff. the hospital is responsible for prescribing my contact lenses, and I pay only art of the overall costs.

In other parts of the country, people like yourself are forced into the private sector where you have no way of knowing whether the opticial has any experience of keratoconus.

If you are in Scotland, write to your MSP. If you are in England or Wales, write to your MP. Demand a better service for yourself and for others in the same boat.

All the best

Andrew

I went for my appointment today, and have been told that if I am lucky I will be able to use standard RGP lenses, which will cost £36 a quarter. If I am unlucky i will need specialist fitting which he could not give me a cost on. It is down to the optician to decide what he thinks best.

I will keep you posted.

Adam

Hi Adam

Just found this site this afternoon!

I was diagnosed with KC when I was 15 and I've now been wearing RGP lenses for 22 years.

My hospital in Edinburgh doesn't deal with me, I was outted to my local optician, who luckily has a good knowledge of KC.

Not once have I had any help with the costs or even a free eye test. My optician thinks this is ridiculous and thinks I should at least get a free eye test. The last time I was at the hospital, around the mid 90's (!), the doctor agreed with my optician.

I pay approx £130 for a pair of lenses, and they can last for 2 years. My optician won't change them if they're OK and working well.

They've been great for me, so I hope they help you too. Try not to think about the cost, just think about the help that the lenses can give you.

Good luck

Fiona

I agree,

They say you can't put a price on health !!

To me eyesight is the most important thing so any amount will be worth it. I suppose its only £144 per year, no more than specs I suppose lol

Thanks for reminding me cost is the last thing I should worry about

Adam

Interesting about free eye tests: I now get free NHS eye tests; but only (it seems) because of my current need to wear specs over a scleral lens.

According to my optician, that counts as "complex", and a complex prescription means free eye tests. I just sign the form that the (excellent) optician puts in front of me and that's it .

Does anyone else get free eye tests?