Scleral lenses on the NHS (UK). Anyone done this?

[CharlieGreenEyes]

I'm so sorry if this has been covered before. I think someone did refer me to a thread about obtaining sclerals in fact - but I've had a particularly bad few weeks, can't stay on a computer/read for too long, and I'm feeling a bit desperate so hope no-one minds a possible repeat.

So basically just wondering if anyone has managed to obtain sclerals on the NHS. I don't know what to do anymore and feel like I'm running out of time to get help. I can't work whilst things are this bad and I can't afford to stay like this much longer. None of the dry eye/mgd opths seem to listen to me. It's like they only want to deal with one issue (the dry eye) and dismiss any complications/impact on other conditions.

I've had opticians mention the vision won't be great with glasses - but then go ahead and charge me several hundred pounds anyhow. For glasses that aren't usuable.

I have a complex vision - and it's only decent vision with my rgp contact lenses. (Glasses and soft contacts give me distorted and double vision).. I still get some double vision with the rgps but it's manageable. I can't tolerate the rgps most of the time anymore - and so see sclerals as my best/only option for normal life (work, seeing friends again, not being stuck in the house most days, etc).

My eyes seem even worse since I've started the steroids. Sort of better in terms of oil I think - for the first time ever (since this mgd/dry eye started) I've had oil come out of my glands. But the soreness is worse - and I've not been able to wear my rgp lenses at all. Before I started the steroids, I was able to wear the lenses perhaps an hour a day (maybe 3 or 4 days a week).

[PhoenixEyes]

Since you're already wearing RGP lenses and sclerals are I think just large RGP lenses with a slight vault over the cornea to fill with artificial tears / saline then I definitely think you should ask an ophthalmologist. You could also ask an optician who does NHS services or your local GP as to whether they can refer you to the nearest NHS scleral lens fitter.

[CharlieGreenEyes]

Thanks, PhoenixEyes. Appreciate your reply - reading what you've said makes things seem so obvious....I'm just working myself up in a panic because I'm not having a good time recently with the eyes, and I'm panicking about time delays.

I have a feeling I might eventually get a referral but things are just taking so long, and my money is running out in the meantime (and I don't want to be out of work for so long in any case).

I know I need to calm myself down - I know stress makes our eyes worse!

[MGD1701]

Hi Charlie
Have you been examined by the confocal microscopy for your cornea?
to find out exact causes?? Normally only big hospital have such tool.

[CharlieGreenEyes]

Hi MGD1701.

I found out recently that I did have a confocal microscopy examination. But I don't really know much more than that. I had a couple of tests done (don't now which were which) and they couldn't do one of them properly - my eye was so painful I couldn't keep it wide open enough without (unconciously) blinking. They told me my corneas were too inflammed and damaged to do the test properly - so the plan was to retest after the steroid course.

All I know is I've got mgd grade 3.

[PhoenixEyes]

I have a feeling I might eventually get a referral but things are just taking so long, and my money is running out in the meantime (and I don't want to be out of work for so long in any case).

Going private might be quicker but of course it would cost more money which is often in short supply in our cases due to difficulty working with this condition. I would inquire as soon as you can via as many routes and ask what the wait time would be if you got a referral.

If you have the funds then a few private places you could email about costs:

http://www.kenpullum.co.uk/ - Hertfordshire, has a lot of high praise and over 30 years experience. Also available at Moorfields via NHS.

http://www.peterivins.co.uk/ - Glasgow, has good feedback on the forum and technology like the Inflammadry mentioned recently.

http://www.thecontactlenspractice.co.uk/ - Birmingham, uses technology to scan the eye and digitally design a fit for the lens.

[CharlieGreenEyes]

Thanks for those links - I appreciate it. It does seem like a vicious circle doesn't it - needing treatment to be able to work properly but needing to work in order to afford the treatment!

I'm hoping to get a referral NHS asap - but might see if I can pull together the money for a private fitting if the wait looks like being too long. Ideally it would be closer to where I lived because of the difficulty and cost of travelling but a one-off might be worth it.

I found somewhere near me that does mini-sclerals - and they cost no more than I last had to pay for glasses so I might try to get seen there.

[minniemouse1]

Hi CharlieGreenEyes, how did you get on with the mini-sclerals? What were they like and where did you get them from?
Thanks

[CharlieGreenEyes]

Hi Minniemouse1,

I haven't tried sclerals yet. I decided to see if I could get them from the NHS because money is tight for me now, and I'm currently waiting to hear back from my local hospital optometry department. I've been referred for NHS sclerals there - but the hospital reviews all referrals to decide whether or not they think you're eligible. I was referred more for my complex prescription rather than my dry eyes so I'm not sure if they accept dry eye referrals (but it's worth asking your opthalmologist).

If you decide to go privately, someone (PhoenixEyes) kindly suggested 3 opticians that might be worth trying. They're on this thread - a few posts back. I'm also thinking about trying one of these opticians. The optician near me that does mini sclerals is also an option for me but they were a bit confusing when I enquired about cost.

I'm sorry I can't help more - and I'll definitely post back if I do get to try sclerals. Everything I've read about them suggests they do help a lot of people with dry eye conditions - although some people find it hard to tolerate them/get used to them. I think getting the right fit is really important too - so it's worth making sure you see someone experienced enough (which is why I think I'd try one of those recommended by other people on here).