UK Keratoconus Self-Help and Support Association

Hi everyone.

So went to the optometrists yesterday for my new prescription and was informed that the nhs has now limited funding for KC patients to £400 (i have no idea of whether that is yearly or total) and that my treatment has gone over £2000... I was told that some other patients are over £6000 :-s

I was assured that they are trying to find a way around it so I wont have to come up with the difference and if tgey cant i wouldn't have to pay it all, but what I am more annoyed about is the lack of warning! What if my opto decided to charge me the rest? How would I be expected to come up with 1+ 1/2 thousand pounds working only 25 hours a week.

I know I am very lucky to have my lenses and tests paid for, im not ungrateful.

Also how many clinics are going to lose out on alot of money over this? As I was under the impression that this had also just been dropped on them too.

Anyone else here heard about this?

Thanks for listening
Sam.

Hi Sam and welcome to the forum!
I certainly hadn't heard of any blanket restriction on funding, though I had heard that some hospitals have problems prescribing the more complex, expensive lenses because of funding issues. If this is general, it would be very bad news for all KC-ers and severely restrict our options. Whereabouts in the country are you? Do any of the optoms who sometimes post here know any more?
I do hope your hospital can find a way round the problem for you. What sort of lenses do you wear?
Anne

Thanks for the welcome look forward to being a part of the community.

I was wearing soft scleral lenses as my eyes couldn't tolerate rgp last time I tried them but as of yesterday I now am back to rgp lenses as they are apparently cheaper and my optician thinks I will do better with them.

I live in somerset, I don't know if it is just a regional limit or not but from what was said everyone in my clinic is affected.

I am now voluntarily going to pay for my tests but I cant afford the lenses. I have 2 tests before getting a prescription then another when I pick up the prescription. Plus over £100 for each lens (I am sure this is what I heard) every 6 mobths. As you can tell it adds up to more than £400.

If you have heard correctly, this is very different to what has been the situation in hospital eye clinics up to now. Anyone with a clinical need for contact lenses (which is most people with KC) has been able to get their lenses and all eye tests at the NHS rate which is around £54 per lens and no charge for any eye tests. The payment covers any changes in prescription for a 12 month period and applies whatever the type of lens prescribed.
What has changed in England since April is that rather than Primary Care Trusts being responsible for commissioning contact lens provision in hospitals, this is now down to the new Clinical Commissioning Groups for each area. Scleral lenses (though I don't know what 'soft' sclerals are?) are being treated differently - they now come under 'specialist services' and are commissioned for the whole of England by NHS England. How this will work in practice I have no idea!
If anybody else has now been told that the NHS can no longer supply lenses at the previous rates, please let us know. And we'd love to hear from any optoms who know more.
Anne

Sorry, I believe the lenses I was using are called KeraSoft, they are large like scleral lenses but soft rather than rgp.

Thanks - I wondered if those were the ones you meant. As far as I know, up to now they would have been covered by the same annual charge of £54 per lens, so it's bad news if that has stopped in your area. Have you got your rgps yet? Are you finding them any easier this time round?
Anne

I haven't got them yet, they were ordered a couple days ago, not sure how long they take.

Not really looking forward to them, I get 10 to 12 hours wear out of my current ones and from what I understand the wear time of rgps are alot less.

Just to clarify, the cost of getting contact lenses through HES (Hospital Eye Service) is £54.70 per lens. Strictly speaking this is for a single lens or, if the patient wears disposable lenses, for six months supply of lenses. Kerasoft lenses are supplied either in 3 monthly or yearly replacement option (different materials). Hence, a patient wearing 3 monthly Kerasoft will normally be supplied with 2 lenses every 6 months at a cost of £54.70. If lenses are worn in both eyes, the total annual cost would be £54.70 x 4= £218.80. The annual cost for someone wearing the "yearly" option would be £109.40 but some patients wearing these find that 1 year is just too long and they need replacement every 6 months which would double the cost. What Anne is referring to is the so called "technical non-tolerance" arrangements whereby replacement lenses required through change of fit or prescription are covered for a period of 12 months from the initial supply but this does not cover regular supply needed due to wear and tear.

I am not aware of any national blanket restrictions on supply, but a lot of hospitals are having to look into ways of keeping their costs down, and I guess limiting choice to less expensive products is part and parcel of this. I would have thought patients would be able to challenge decision resulting in supply of their lenses being withdrawn in favour of cheaper alternatives which may not be as comfortable. The way I see things developing is that cheaper products (corneal RGPs) will be offered as first choice and if patient can adapt to them that's all very well as they are arguably the best choice clinically as well. However, alternatives must be made available to patients who are unable to adapt to them.

Many thanks for the clarification, Ali. I hadn't realised that the cost of Kerasoft through an NHS eye clinic was more expensive than rgp lenses for the patient as well as for the hospital.
Anne

Cost of each lens to the patient is the same Anne ie £54.70 each but patients wearing Kerasoft would normally pay more in the long run as their lenses would need replacing more frequently. Mind you, some corneal RGP wearers go through a lot of lenses through breakage or lenses pinging out and usually need to pay for the replacements.