UK Keratoconus Self-Help and Support Association

Hi, sorry if this is a question I should have been able to find the answer to, but I haven't! But i thought if i ask, plus share a bit of my story too, there might be other helpful things that some of you could share?

Last week I had my appointment at the lens clinic that I've been attending for three or so years now. Up til recently, my appointments have gone along the lines of 'how are you getting on with the lenses?' - 'not too good to be honest, hardly ever wear them as my eyes are sore/the lenses hurt' -'hmm well the fit looks perfect so that's all we can do, you really should wear them as you must be quite limited without them'. I have rgp lenses, I have never been told what type they are, I did ask once but that particular optom was near non communicative (and I'm not the most confident type)!

This appt, the optom asked the usual questions about wearing time, and having been off work with the bank hols and all (my office makes lenses basically impossible for multiple reasons), I could actually report that I have worn the rgps most days for a couple of weeks for an average of 6 but up to nearly 12 hours on occasions, which I was pretty chuffed at myself about. But she went on to ask about when I wear them, how comfortable it is, how well I cope etc, which has never been asked before, and based on my answers she said I should be able to get much more wear and more useful wear, and actually talked about different options including kerasoft, which she fitted me for and which gave legal driving standard vision - not quite as good as rgp vision but I rarely drive wearing them as they fall off if I look round too far (well and cos I rarely wear them of course!). She also wanted to try piggy backing but by this point my eyes were too sore. So I had the option of the kerasofts, but not really knowing much about them or their advantages, I decided to wait until my next appt in two months when I will try the piggy backing.

Anyway (sorry this is becoming very long) this brings me to my main question - if I get the kerasofts, presumably I will have to pay. But apparently they last three to six months - does this mean I'd have to pay every time I got them, so potentially £400 ish per year? Plus if I kept the rgps too would that then be a separate charge? Cost isnt too much of a factor right now, but if I could wear lenses every day, fairly reliably, I'd love to go back to a job I enjoy which would mean a massive pay cut!

I have read the posts about kerasofts and understand it's a pretty mixed experience, so any other comments on them particularly from anyone who switched from rgps, would be great. As I can no longer see the top line of a sight chart, and that is how I live the majority of my life because of issues with the rgps, then the potential of a longer wear lens that I could drive in is quite exciting right now (oh, how I would love that freedom back, I miss my jeep!).

Out of interest, is there any way around the total non consistency of seeing a different optom on every single appt in a larger clinic? The first person (who happened to be the total non communicative one) I saw fitted me with totally non suitable tiny lenses that fell off if I even blinked, and that's the only person I've ever had twice! I've thought about just hiding if she calls me again, and hope I'd then get called by the next optom but I don't know if it works like that!

Anyhow sorry for the ramblings and any thoughts appreciated!

Kerrie

Kerrie,

Im sorry to hear you have an optometrist who seems so unhelpful. Theyre a few like that at my clinic who i just refuse to have now because thwy dont explain anything or talk you through whats going on.

As for cost if its NHS they should cover it if the lens isnt right i.e needs to be corrected or doesnt fit.properly because thats not your fault. I was told i would have to pay for them if i needed a new lens and it was still the same fitment and strengh though i havent paid for anu as of yet :p

You can get many diferent types.of.lenss. I currently have a sceleral rgp that covers the white of my eye as well because i have the same problem as you with the smaller ones faling out or wandering around my eye.

Anyway hope this all helps and you get it sorted soon. Bsat of luck.

Matt

Hi Kerrie,
For lenses through a hospital eye clinic, then it doesn't matter what type of lens they prescribe - the cost is the same NHS charge of around £54 per lens which covers any change of prescription within 12 months. So whether you go for Kerasofts or piggy backing, that'll be what you pay. There are people on the forum who get really good results from Kerasoft and others who swear by piggy backing. So it's going to come down to whatever you feel most comfortable with.
It's a shame it's taken so long for someone to offer you something other than the standard rgps when you've clearly been struggling for years. I don't know the answer to always seeing a different optom in the big hospital clinics, apart from being assertive and asking at your next appt whether you can see the person you saw last time - easier said than done I know!
And I guess the big teaching hospitals have a lot of optoms just 'passing through' while they get some hospital experience which makes it hard to offer continuity. And of course the down side of continuity is if you get stuck with someone who doesn't think 'outside the box' with KC!
Anyway, I do hope you'll finally find lenses you'll be able to get good vision and good wearing time from.
All the best
Anne

Kerrie

The NHS lens clinic ought to try to find the best combination of lens type and lens material for your particular keratoconus. this does not necessarily mean that they will let you walk out with the latest thing in lens technology; KC is a bespoke condition and what will suit one of us may not suit another.

As Anne says, they are all dispensed at the same price.

Every good wish.

Andrew

Hi Kerri

You were asking, if you had kerasoft lenses, and, if they needed changing every few months, how often you'd need to pay for replacements. There are a few different versions of kerasoft, some need replacing every 3 months, others can last "upto a year". If you had the quarterly ones you would not normally be expected to pay the £52.90 NHS charge towards every single lens. There are some variations across the country but most hospitals would charge you every 6 months, hence if you wore kerasoft in both eyes you would be looking at a charge of 4x52.90, about £220 per year. Obviously if you have the annual version and the lenses actually last for a year you would only pay £105.80 per year. If you also wear RGP s, could you have kerasoft as well through NHS, I'd have thought yes, but hospital clinics are under great pressure due to budget cuts, so it'd depend to some extend on the policy of the particular hospital you attend. I hope this helps.

Many thanks for correcting us, Ali. I didn't realise the charges would be different for Kerasoft on the NHS as opposed to other lenses. And I guess we're all nervous that budget cuts might begin to restrict the range of lenses the NHS will be prepared to pay for.
Anne

NHS statutory charge is £52.90 for all lens types Anne and normally entitles the patient to a single lens. However, if patients need lenses replaced at frequent intervals eg. daily disposable lenses, monthlies or lenses replaced quarterly, most Hospitals would supply 6 months supply of lenses for each payment. Therefore a patient wearing Kerasoft 3 which needs replacing every 3 months would need to pay statutory charge every 6 months. The only exception is what is called "technical non-tolerance" which means that if lens fit/prescription needs changing for clinical reasons, replacement lenses are supplied free of charge for a period of one year. However this does not cover repeat replacements due to wear and tear. I know, it is somewhat confusing!

Hi

Thank you for the replies and info. I knew if there were changes to scripts or fit, there was no further charge within the year, but that there was a charge when one of my lenses went down the sink (guess who had a plug for Xmas!), but having had rgps I haven't faced the question of lenses that in themselves only last three months (that was the length of time mentioned) -so that is really useful to have confirmed and clarified.

Incidentally, can anyone confirm whether the length of time - so the three months in my case - that the lenses are supposed to last for, is that assuming you are wearing them everyday? I'm asking in the context of, if for example I only wore them every two days, would they last six months? (although of course what I want is to find a lens I wear everyday, that would be so good)

Also wondering, I have seen mention of the argument that rgp wear may cause damage or scarring to the eye in some way. Is there any actual evidence supporting this, or any studies that anyone can point me towards?

Thanks again, kerrie