UK Keratoconus Self-Help and Support Association

Hello All,

Does anybody know why we get our scleral lenses subsidesed by the NHS and don't get any help with the cost of the extra soloutions that we use over and above what a person wearing ordinary contact lenses would pay?

Drew

Drew,

I think it is for the same reason we dont get normal contact lens solutions on prescription. Although the government admit we are entitled, the primary care trusts still see contact lenses including sclerals as cosmetic.

If you get your lenses from a hospital, you should be able to get SOEM of the fluids fromt he hospital at prescription charge rates (or on your prescription season ticket, if you have one).
Why do you use more for sclerals than for corneal lenses? - I don't.
At least, I don't think I do - I take the scleral one and dry it on a tissue and store it dry so I ought to be using less than somene who stores their corneal lenses in a case full of solution.
Maybe I use more saline, but not more wetting solution.
Rosemary

I agree with rosemary. As scleral lenses are stored dry, they ought to use less fluid.

That said, if you have a problem with fluids, why not ask your hospital optometrist about it? They often have samples sent in by manufacturers.

Andrew

Ok my aim with the saline is bad and it takes me at lease a tube of amidose to get my lenses in. So I do use a lot and I have to clean my lenses frequently to get the wear time up, so I guzzle miraflow as well.

I think the piece of paper that prohibits us getting full assistance is below.

http://www.statutelaw.gov.uk/content.as ... lesize=283

I read this and thought hmm. Sensible peice of legislation if its aimed at ensuring medics deny prescribing soloutions to those who wear lenses for vanity reasons.

I don't think anyone who has been prescribed lenses for KC fits in that as we loose our ability to function normally without our lenses.

Have we ever tried and should we look at how to try to get an exemption for our condition from the prohibitory instruments or would that be moving the group in a political direction that is outside of its scope?

D

Drew - that's precisely what one of our committee members has been trying to do through their MP, but we keep hitting brick walls. We argued that as we have a clinical need for lenses and solutions, GPs should be able to prescribe solutions for us. However, there is also a DH regulation which says that hospital eye clinics should prescribe solutions as an integral part of the contact lens provision (although we all know that almost none of them do). So the Health Minister is telling us that we need to complain to each individual hospital to ensure they provide us with solutions. Hardly a good way of ensuring that we get UK wide compliance with the rules - but that is the answer we've been given. All very frustrating.
Anne

Ah, yes, the saline.....
I think I use less saline with amidose tubes than with the big saline bottles. The latter seems to be easier to slop around a lot, I think just because they have bgger nozzles.
Does it help to snip the tip off the amidose tube slightly nearer the end, so it doesn't come out quite so fast and sloppily?
I find a tue of AMidose lasts about a week. That is, unless I'm having difficulty getting the soft lens aligned for piggybacking and have to take the scleral out and try again three or four times.
And until I start using it is lubricating stuff witht he graft eye is even more sore and achey than ever.
As for cleaning solutions..... well, I clean my sclerals in washing up liquid, which I'm sure isn't available on prescriptoin anywhere!! - but at least is a lot cheaper than contact lens fluids.
As regards the legal situation - it is all very well the ministry of health telling people to complain to their local hospital - but even those that do, they generally don't give enoughin one prescription to last till the next appointment, or anywhere near that, unles syou are having depressingly frequent appoints for some big problem.
Rosemary

Hi Drew

I can sympathise with you.
I have worn sclerals for 10 years
I used to go through at least 1 sachet of saline a day with my lenses, this is mainly because of wear time. I usually had to 'reset' my lenses due to them getting dry/irritated any where from every 4 hours to every 2 minutes.

With this in mind, I use Sterets Normasol. It comes in sachets of 25ml which is much cheaper. its £9.40 (38p each) per bag of 25 x 25ml sachets from st johns online shop (http://www.stjohnsupplies.co.uk/product ... tId=F14685) or £4 from the hospital.
Although amidose is easier to use as it has the twist off cap and can kind of be carried about with you in its tube, i found some 30ml dropper bottles with a screw lid that can be refilled, these cost 36p each from a vet supplies website and i usually replace them on a weekly basis (to try to prevent bacteria build up)
http://www.vetuk.co.uk/index.php?main_p ... ts_id=1797

November 2007 i was listed to get a cornea transplant due to lens intolerance (booked for feb 2008).
At this time i was also going on a month long business trip to Industrial China, i was very nervous about the polution and what affects this would have on my eyes and so took 100 sachets of saline to make sure i had enough. What amazed me is that although the polution was so bad you could not see the horizon, my eyes out there were suddenly amazing, i 'reset' my lenses just once a day and used only 12 sachets.
I realised that it was not my intolerance, but something to do with my surrounding enrironment or the way i treat my lenses, so i cancelled the transplant, quit my job (it was about 20% humidity in my office) and changed how i clean my lenses.

I now no longer use miraflow or washing up liquid on a daily basis:

1. I place each lens in an eye wash cup, and fill with: Boots preservative free 'Deep Cleaning System' (i contacted the lens supplier to make sure that this was ok to use). This is a peroxide based cleaner (1 month supply = £7) It comes with a neutralising disc which needs to be prised out of the supplied case (the lenses are to big to fit inside) and placed in the solution on top of the lens. this sits overnight for at least 6-8 hours (yes i store mine wet). this was amazing for me and has completely changed my life, somehow it also seems to prevent protein build up so i need to de-protein less often

2. Every 4 weeks i use protein removal tablets, they only sit in the solution for 2-4 hours, after are thoroughly cleaned with miraflow and hot tap water and then cleaned as usual overnight (i used to de-protein overnight but always had a VERY bad eye day the following day, my specialist advised to reduce the hours) tap water is very bad for the eyes, but very good for miraflow removal, be sure to disinfect the lenses before wear if using water.

This system sees me vith very clean lenses and a vastly increased wear time. unlike cleaning with a paper towel and storing dry, this doesn't scratch the lenses which promotes protein build up. I have had the same pair for over 2 years now and my specialist told me that they are in great condition (i asked to change these lenses in Nov 2007 as they were too bad to wear, they are now still going strong)


I now spend about £10-13 per month on all my lens care supplies and they are the best they have ever been.


I hope this is useful info to you.

Tom