SOLUTIONS ON PRESCRIPTION

[GarethB]

Steven,

Without going onto the parlimentary web site I am unable to give the exact wording but the gist of it is that certainly two, I think three different MP's raised the queston on sperate occassions asking if we as Keratoconices were entitled to contact lens solutions on prescription.

The right honourable Rossie Winterton (Health Minister?, she at least had something to do with the NHS) said where there is a medical need for contact lenses to be worn then yes we are entitled.

I have a written response from my own MP and a copy of the response he was given reaffirming that as I have KC and wear contact lenses that I am entitled to contact lens solutions on the NHS and I should take the matter up with my local primary care trust. That is where I have hit a sticking point, as far as they are concerned that if we wear glasses then despite having poor vision which makes living and working extremely hard we are not legally blind. My argument is if that is the case I will cost the tax payer more in terms of benefits to live and benefits my employer would receive to put things in place for me to work normally or as close as you can. By allowing me the solutions I can do a normal days work, live normally and pay my taxes while getting relatively small amount back.

For me to wear lenses I pay out £750 per year (excluding the cost of lenses themselves). Glasses have cost me so far £600 and bring vision in one eye to driving standard, the other is well off. Not much of a saving and I can only do half my job with glasses. Soft lenses and the cost comes down to equivelent to someone who wears soft daily disposables for 'cosmetic' reasons and if I can live life like those people I am happy to pay for my lens solutions. Unfortunatly many KCers are unable to do that.

Sorry it turned into a bit of a rant, but it does bring you upto speed where I have go to with taking this up at a parlimentary level.

[Steven Williams]

Well done and thanx for sharing the information Gareth

IMO a co-ordinated campaign is needed if a successful outcome is going to be gained.

Will this be put on the next committee meeting agenda?

[Anne Klepacz]

Steven
See my reply to Sue at the beginning of this thread. Solutions has been an agenda item at most of the committee meetings over the past year, but as I said, it's likely to be a long battle. As soon as there is any progress to report, we'll post it here and in future newsletters. This doesn't just affect people with KC of course - there are other eye conditions which involve a clinical need for contact lenses. So we'll look at whether there are any similar support groups that we could link up with on this issue.
Anne

[Steven Williams]

IMO a co-ordinated and structured ACTION campaign utilising the KC membership is needed if a successful outcome for Kcers is going to be achieved.

As a KCer I am willing to support such an initiative. Is anyone else up for it?

By all means consult other like minded groups but Anne surely we need to be fully utilising our limited resources first.

[donna]

Count me in

[Sue Ingram]

Hi everyone, I have had a result! I had no problem with getting a prescription from my GP for solutions - in fact she did not query it at all. However, upon trying to get Amidose and Miraflow from the chemist, I was told that they are black-listed by the NHS except from a hospital pharmacy. However, Boots have come up trumps. They could not get Amidose for me, but have found Miniversol Sodium Chloride 0.9% Sterile Solution. Looks like its made by NaCI. They come in 45 ml pods. Unfortunately, like Steripod, once you have broken the seal, there is no cap to put back on (as there is with Amidose). When I first tried it with my scleral lenses, there was a stinging sensation and I thought 'Oh no!'. However, this only lasted about a nano-second (!) and since then it has been fine. I can use this at home and keep the Amidose for when I need a secure top.

Still can't get Miraflow for cleaning or ordinary bottles of saline for rinsing. But it is definitely something. Hope this helps if you are able to get a prescription for Amidose but could not get it! Take care all. SUE

[John Smith]

Although I agree with your sentiments, Steven, I don't think that an actioning campaign targeting MPs will help us. The problem I see is that according to the Government, we are ALREADY entitled to prescribed solutions, so (enter head in sand mode) WE MUST ALREADY BE RECEIVING THEM - so why are we making such a fuss?

Now, you and I and everyone else here knows how stupid that sounds... but the solution seems to me to convince the NHS trusts to follow the guidelines they've been given.

I'll stop now before I turn political!

[jumbo]

Miniversol is really useful - 45ml of sterile saline and easy to squeeze and direct.
I hear from my Pharmacist that Miniversol is made by Aguettant Ltd. in Somerset and is available directly from them - I think Aguettant have a web site.
The reason the top cannot be put back on the Miniversol pod is because the solution is sterile until open.Once the pod is open and you keep the solution for days - you might get bugs in that could give you an eye infection.
Jumbo