UK Keratoconus Self-Help and Support Association

Could I ask members here if any of the lens care|eye drops which you need are given to you on prescription? I ask because our PCT will not allow any of the products that David is using to be issued on a script. It's taken ages to find things that do not irrate his eyes and if he were allowed these on a script, and because he will soon be on Incapacity Benefit and Income Support, he would be able to have them free. However we can't even have them written up on a script and I am quite angry about this.

The lenses that are needed for KC are not cosmetic and I see this as a form of discrimination. But I need to know if this a blanket policy or if it differes from Auhtority to Authority?

Thanks

Carole

Hi Carole,

This is a post code lottery, in the West Midlands area I am in the Walsgarve NHS Trust in the Coventry area I have to pay for all my solutions. Go from Coventry to the Birmingham Eye Unit and my understanding is that some get their solutions on prescription that is if they have an appt they can get about a three month supply. No good if you have no need to go back every 12 months!

Things can be problematic within the same Health trust area for example IVF. If I live three miles closer to Coventry I would be eligable for IVF treatment free, but I do not so I would have to pay the full cost!

The argument I have been given from the hospital was that if I still wore glasses and looked after them properly with glasses cleaner and such like, then glasses that were tinted like my lenses, average frame cost and the eye test would cost in the reagion of £200 for two years. The hospital seems to think lens solutions and lenses cost an equivelant amount. Well a years supply of cleaner in bulk which gets me a discount on the net is £70 and the £100 for lenses leaves £30 for saline and protein removing pills. Well those in bulk and the saline for a year cost me another £275.

Average glasses would cost me £200 for 2 years, lenses cost me £1030 for 2 years!!!!! Put on eye drops I need which are not on the prescription list you can add another £90 for a two year period. How I wish I had never complained about the cost of glasses!

When I tell people this they can the understand why I enjoy life and seeing so much, at £550 per year for the gift of sight I am determined to get value for money

Carole,

You may like to get in touch with Marian, our West Mids co-ordinator. She is involved with a parliamentary committee about solution costs, and I'm sure she will be able to give you some more info.

Thanks Gareth and John,

John I will certainly get in touch Marian hubby and I are old hands at Parliamentary committees - he attends the autism one to fight our corner there.

I had some good news this morning actually. Our chemist rang to say that PCT have said they allow the cleanser and conditioner but not the drops and saline. It's a start but I will press hard for the rest because KC is for life not just for Christmas. So the lenses are not cosmetic.

Carole

I could get prescriptions for my artificial tears, but I don't because they are cheaper "over the counter". Steroid eye drops are only available by prescription, so no choice there.

I think some hospitals with contact lens clinics will give paitents supplies of fluids that the manufactureres supply free to them as "samples".

Andrew

I hate to be the bearer of bad news but Moorfields will now only provide prescriptions for one month's supply of lens solutions .

If I understood correctly this comes out of Moorfields budget and they do not recover this from NHS.

Any further information on this anybody?

Although the health minister says we are entitled, the next obsticle is to get the entitlement initiated in all the hospitals.

Not a simple task, but as a group, I am sure the comitee will brain storm how we can put pressure on the powers that be.

Any suggestions from those who post here I am sure would be welcomed.

Gareth, the problem here appears to be that we are going backwards rather than forwards.

I wonder whether a can of worms hasn't been opened resulting in Moorfields saying hey, we shouldn't be giving out prescriptions either, because the cost is non-recoverable.

I guess sometimes you have to take a step backwards to go two forwards and hopefully that is what this will prove to be.

I think they change there mind daily.

In May I was given three months supply of everything

the same on a previous visit.

In Sept I had dry eyes they gave me two months supply of refresh.

I was told they now only give two months.

With one months supply it is cheaper to buy than pay the prescription charge.

I have been a moorfields patient for almost two years now charged for replacement rgp dailies are free. While a patient at Kingston only once paid for my rgps back in 1987 there after everything replaced foc. But never given any solution on prescription. There is no consistency.

In the West Midlands area I live in solutions on presecription has never been available.

It is a post code lottery and could well be Moorfields thinking no one else does this so why should we?