UK Keratoconus Self-Help and Support Association

Can someone inform of the latest on getting contact lens soloutions via a Prescription?

What is the protocol? Do KC patients have any additional rights? Are practictioners reluctant to prescribe solutions via prescriptions? Are despensers reluctant to accept prescriptions? Does age or financial status have any bearing?

All info appreciated. I am just conducting some research on this in view of doing somethng with it at a later stage.

Thanks

Jay

Hi Jay

According to parliment we are entitled to our lens solutions on prescription.

The reality is that Primary Care Trusts (PTC's) interpret the rules differently so solutions are unavailable on prescription. That said some PTC's will let you have a months supply but your next appointment is 12 months away!

There is a prescription code for GP's to use but I have yet to hear of one prescribing anything except saline for use with Scleral lenses.

As a group we do have involvement with one of the Government select committees I think (possibly through one of our members local MP), so our voice is being heard but as with most things Government to get a change it is a long slow progress.

Anne will no doubt give further information on this.

Agree with this - hospital will give prescription for solutions BUT:
you can only get the hospital prescription filled at the hospital's own pharmacy
pharmacy rules (!) say you can only gt a month's supply
and
you can only have a prescription when you have an appointment.
One month's suppy with six-mnthly routine appointments is silly. What's also silly is that if you need a new type of solution for a new lens, you ca't get a prescription to use the new lens unless you have an appointment when you collect the new lens. And waiting for an appointment slot could mean you don't get the lens till a month or more later than you'd have got it if you arranged to pop in and pick it up. Unless, of course, you get the prescription at your PREVIOUS appointment - and if there's a delay withthe lab getting the lens out, it could have gone off in that time.
I've made representations to the hospital about this and they have taken the point. I don't know if the system ahs officially been changed to "appointment or new lens issue" but I got a script with a set of new lenses I was picking up. (Mind, my MP had been involved inthat one.....!)
Interestingly, GPs can and do prescribe things like Celluvisc, and presumably systane and the other lubricating drops people have mentioned. I use the thicker version of Celluvisc as a lens solution when I'm piggybacking - which means it would be cheaper in solutions to piggyback than not. Ho hum.
Never heard of GPs prescribing saline - is this amidose, or the big bottles, or ,,?
Rosemary

I phoned my GP this morning and spoke to the usual "stroppy receptionist." I requested some saline, got told I needed to make an appointment. After pleading that I didn't want to waste an appointment slot I persuaded her to ask the GP for me and I would call back. I requested 48 tubes of 30ml or the four boxes (they come 12 in a box). Anyway, much to my surprise when I phoned back I got told the prescription was ready for me to pick up. However, I was also told it said 4 x 10ml Saline. I have to go on Monday to collect the prescription and speak to the GP then ... when she becoems available. So I await. I am hoping the message from me to receptionist to GP was scrammbled re the amount and I still might get the 4 boxes. 10ml tubes seems unfeasable that I question if they even exist? I keep my fingers crossed. It seems all too easy so far, albeit the amount is wrong on the script. I hope my actual request is granted and a solution, pardon the pun, is awaiting me. The fact she wrote a scipt out at all for the saline is a step. I may have quite a few to climb though. I will let you know Monday!

Hope they get it right.

The nurse at work as 10 ml ampoules in the fridge to rinse out foreign bodies, usually when someone gets frit in their eye walking across the car park.

If it is anything eles you get a 500ml bottle of saline squirted in your eye and that takes sometime to get through and if you do it wrong you come close to drowning The joys of working with chemicals

Let us know how you get on, it might be a step forward for all of us.

My GP will do a prescription for a month supply of Systane which is available over the counter. Downside is prescription cost is more than 28 ampoules of Systane which is about a months supply.

Any way keeping fingers crossed for you.

Result.

I went to the GP and told them that 4 x 10ml bottles would last me about 2 minutes. GP then invited me in. I informed him of the error and I said I needed a months supply, ideally 40 x 30ml bottles - I may have pushed the boundaries, but I went with it. Anyway, without answer he proceeded to type "Sodium Chloride 0.9%" into his prescription generating computer programme. He could not find the 30ml bottles but wrote out a script for 50 x 20ml. Went to local chemist - got them all.

For info the exact product is: Steripod Normal Saline (Sodium Chloride 0.9%) Sterlile 20ml Ampolues - Ampoles are small hard plastic tubes with a top that you twist off leaving it easy to fill a scleral lens or an eye due to the "pointy" like end of the tube. I hope that makes sense!

They do 25ml sized but these come in a plastic south plastic pouch and it would be harder to fill the eye or lens with this method so the 20ml Ampoules are better.

Anyway, the GP appologised for the original error, told me to hand in the second part of the prescription for a repeat next month and I would get it every month when needed. So, all-in-all no questions asked, very positive and a result. I was honest and told him what it was for and he was more than happy to help. Incidentally, he had no idea of what Keratoconus was. I will leave that for another day.

Well done!!!!
If you haven't already done so and you have to pay for prescriptions, yu might like to look into getting a "season ticket". Have a look at the small print on the back on the repeat prescription counterfoil for basic info and a phone number on this.
Rosemary

Great Daz.

My GP didn't know what KC was when I told him, he does now as he's had a copy of the groups literature and has some business cards for the group incase the practice have another person with KC though their doors.

Glad you posted today otherwise I'd have thought it were an April fool joke

I thought the same Gareth when I got told the prescription was ready!

Anyway, I used the saline for the first time today and the applicator it comes in makes it very easy to clean and fill the lens so this style is recommened.

Perhaps we can get on to the GMC and recommended that all GP's follow suit for ALL types of solution for KC suferers?