SOLUTIONS ON PRESCRIPTION

[Sue Ingram]

Hi everyone,

Not been on the Discussion Forum for a while so hope you are all well. I thought I would let you know my experience in trying to get contact lens solutions on prescription locally in between my appointments at Moorfields.

Went along to the Dr and was amazingly surprised when she had no problem in issuing the prescription for Amidose Saline, Miraflow Lens Cleaner and LensPlus Saline, despite the fact that none of these were on her list and she had to find something that sounded nearest and said to take the bottles/boxes to the chemist and show them what I needed.

Went to two local chemists - neither of whom were able to help. Decided to try Boots. Again, they could not get them from their suppliers, however, they did say that they do get supplies direct from Moorfields so would give them a ring - a little bit of hope, maybe!

The upshot is that Amidose and Miraflow, although supplied by Moorfields on the NHS, are 'blacklisted' on the NHS and cannot be supplied except from a hospital pharmacy. They can get the ordinary saline for me.

I really don't understand this situation - how is it possible to get solutions ON the NHS from a hospital pharmacy but NOT ON the NHS from a local pharmacy. Surely if you are eligible for items on prescription it doesn't matter where you get them from? Can anyone tell me why there seem to be double standards? I thought the NHS was ONE organisation? Its all very bizarre.

Unfortunately, the Amidose is the most expensive and is really the one that I wanted to get on prescription, especially as I only attend Moorfields once a year now.

I know the solutions situation has been an on-going gripe amongst most of us that wear lenses. I was just wondering what others' experiences have been and whether anyone has actually been successful in getting solutions locally on prescription. Take care, SUE

[Anne Klepacz]

Hi Sue - good to see you back here again!
You're right, the whole solutions thing is very unfair. Virtually all contact lens solutions are blacklisted as far as GPs are concerned (presumably to stop millions of contact lens users getting their solutions on prescription). BUT Department of Health guidelines say that where there is a clinical need for contact lenses, solutions are an integral part of the 'treatment' and therefore should also be available on prescription (which of course applies to most of us with KC). So hospital eye clinics can prescribe solutions. Unfortunately, all hospitals seem to be cutting back on their budgets and Moorfields will now only give a months supply
which is not a great deal of use! I think some other hospitals still give 3 months supply but there are others which don't seem to supply solutions at all.
The West Midlands KC Group organiser, Marian and her husband are leading a campaign to get the rules changed so that GPs could prescribe solutions to those with a clinical need for contact lenses. They have got an MP on their side, and are hoping to arrange another meeting with him soon. But in the current climate of cutbacks everywhere, it's likely to be a tough battle. We'll keep you posted of any developments.
Coming back to your particular set of solutions, I thought some people did manage to get Amidose on prescription from their GP. But I may have got that wrong - I know ordinary saline is OK.
Anne

[Sue Ingram]

Hi Anne, Thanks for your reply. Its good to hear that there is a campaign under way - there definitely should be! It will be interesting to see the progress.

If there is anyone out there who has managed to obtain Amidose on a GPs prescription, perhaps you could let me know how you managed it. SUE

[Lynn White]

Sue

This sort of thing comes down to budgets and funding. Hospitals deal with contact lenses while GP's and pharmacies don't. Yes its one big NHS but GP's, Optoms, dentists, pharmacists, hospitals etc all work to different rules. Frustrating but true and far too complicated to explain here. Factor in how different PCT's treat funding for different drugs and it gets even more complicated. As Anne says, it is actually in the rules that CL solutions should be supplied by hospital clinics but life is never as simple as that!

Good luck with the Amidose!

[Steven Williams]

What about a letter being sent to the Secretary of State for Health on the Groups charity status letter headed paper from our committee with a signed petition from UK KCers?

This may give more weight to a campaign. Perhaps this could be included on the agenda for the next meeting of the committee.

[Andrew MacLean]

Actually, I agree completely with Steven. It is a pity that there is no "English Group" to look after issues that are specific to England as a separate jurisdiction for health matters. Given that this is the situation, I guess it would do no harm for the UK committee to focus on this English concern.

Andrew

[Sue Ingram]

Sounds like a good idea, Steven. I think anything we can all do to help the campaign must help it on its way. SUE

[GarethB]

I may be wrong, but my understanding is that you write to a government department/minister and you get a standard letter of reply from a secratary.

Write a letter to your MP and the questions gets asked in parliment and as such gets documented which is why if you search the parlimentary web site it is there in black and white the questions asked to date with responses. All of which say where there is a medical need we are entitled.

Part of our campaigne is finding the place we can hit hardest.

Some of us have approached our local primary care trusts and they interpret the rules that contact lenses give us the best visions, but with glasses we can get sufficient vision in at least one eye as not to be legally blind so the contact lenses are non-essential.

There is then the system GP's work under and another which optoms work under. Basically the system is a shambles and these groups should be working together.

Something needs to be done on the solution front so by all means make suggestions and e-mail the committee with them but we need your help and this may well mean more than just a signature on a petition. For example it may well be getting to petition publicised and people in your area to partake.

[Steven Williams]

Write a letter to your MP and the questions gets asked in parliment

Has anyone actually done this yet Gareth?

Was the question raised in parliament?

If it was what was the response received in parliament?

Whether or not the question gets raised in parliament is at the discretion of your MP. Before raising any question the MP will do their own research and probably sound the issue out first with the Secretary of State for Health, MP Alan Johnson. Anyone in his constituency?

If not could I suggest the following as a positive way forward:-

1. That the committee compose a suitable letter/question for KCers put on the website/distribute to
members in the newsletter so that individulas can then copy and paste and send to their MP and
put on the website.

2. That the committee write to the Secretary of Health as suggested earlier as well.

3. KCers and the committee report back on the website the response received

I forgot that in Scotland people have the privilege of free healthcare as well as free further education. Maybe the solution is a move to bonny Scotland

[Andrew MacLean]

All welcome. I think that the Welsh also have a pretty fair health scheme (when they live in Wales).

To answer your question directly, I did write to my MSP and our local party list MSP's asking them to raise a series of KC related questions in parliament. Within a week I had answers and within a month had been contacted by the Minister.

I had been attending a meeting of the Scottish Group and the speaker provoked a lot of questions in my mind. I raised them with the people whom we employ to deal with these matters on our behalf and they dealt with them. I think that the only downside was that the speaker who provoked the questions in me got caught in the backdraught as his employers were put under pressure by the Government to make things better.

In future I think I'll ask provocative speakers whether they would mind my raising issues with my MSP's.

Andrew