UK Keratoconus Self-Help and Support Association

Thanks for all your advice (People in the forumand anyone that wants to be a part )

But i still feel ill, ive not been to the eye specialist before. And im sick to death now my eye sight makes me feel ill and get lots of headaces. The Contact Lenses that Specsavers game me make me worse, and they arent interested. My first Referal letter to the Doctor went 2 months ago and they said they only got it on 3rd of Feb (Hospital that is) so i rang them up to see how much longer i have to wait and they said 13 weeks. i nearly died with shock. It just takes them forever and it really annoyes me all i want is some contact lenses so i can see and stop feeling ill. Is there anything i can do to make my appointment sooner?

It seems the Cheshire area is particularly bad.

Options to speeding up the process are going back to your GP and explain the situation. There is going private, but given you preveous post this may not be easy.

The other is going to eye casualty.

Beyond that, I am at a loss.

I really hope someone else has some more constructive advice.

Personally I would go somewhere other than specsavers as I have never found such outlets good for KC. The indipendent opticians are generally more caring and helpfull in such matters.

JB

You are experiencing what I did......in that the frustration and delay in getting seen to, and the lack of understanding from the Optician / Eye Unit

I really do think you should avoid SS at all costs.....there business model is based around "fast in- fast out" and they all (franchises) have a set amount of time which they all can dedicate to patients in order for the stores to be profitable! Anyway,enough of that!

I would suggest the following

a) Progress with the Eye Unit, call them up again and air your concerns...ie YOU CANT BLOODY OPERATE.....but maybe in not those terms!

b) Walk into Casualty (as Gareth said) and maybe they will refer you to Contact Lens

c) Find another Optician who knows what they are talking about and have experience in treating KC and fitting lenses for keratoconics

J

Really sorry to read where you are in this. I would say to leave SS well alone as well, as they through no real fault of their own are not really trained to fit lenses with a KC patient. Eye casualty would be an option and see how you get along there, but failing that and knowing how long it takes to get into the hospital system i would find yourself an independent optometrist to fit a new lens.

You would be paying the same as at SS and with someone who is skilled in fitting KC lenses so would hopefully get a lot more help. The hospital appointment would sadly have to wait until they have space although you could phone weekly and ask for an immediate cancelled appointment if they have any. Sometimes people cancel and they can't find someone to fill the space at such short notice but if you let them know that you would be available and keep contacting them about it you may get somewhere.

Wishing you all the best and hoping that you find a good optometrist near you.

Sweet X x X

I wont go on about *loot* but thats why i live at the job centre, and thats why Private is a no. Also i still get NHS vouchers and SS have been funny and caused a problem and i left and they kept the voucher so i dont have one for 3 months. I cant have another appointment either which is another problem. (thats an appointment with any optician because the voucher for contact lesnes and an eye exam is used)

Jayboi,

I am thoroughly confused, I am in full time work, but my KC means complex prescription so my eye tests are free and my lenses are subsidised so ionly cost £40 each.

Not a specialist when it comes to benefits, but I am surprised you need vouchers for eye tests with KC and to get lenses if your prescription changes.

I really think you need to get further advice from the RNIB and from Action for the Blind to make any further progress.

The job centre should be helping as they are being encouraged to get people off the unemployed list regarding long term sickness/ disability. By them not helping they are not only failing you, but themselves in missing the tragets set by their superiors. this again is where you need RNIB and Action for the Blind to get involved.

JB

Problems never come alone!

Right, here's my advice. Go and turn up at eye casualty in the hospital to which you have your ophthamology referral. (eye casualty may ve separate from A and E, ask at reception).

Tell the Administrator that you have KC, that you are waiting for an appointment and that you are having eye problems with which you can't cope. You will be asked to take a seat.

Take a book, game boy, mp3, walkman or anything else you think may help you through a long wait. Your wait will be long!

When you see an ophthamologist (the eye doc), explain what has happened and tell her or him how all this is making you feel. If your hospital has a contact lens clinic, and lots of them do, you may be referred to them. this would be an excellent outcome as the optometrists there will be well used to fitting KC eyes.

If you are not referred to a hospital contact lens clinic you may be referred as a hospital patient to a private sector optometrist. This is what they used to do in Aberdeen and still do in Edinburgh. These optometrists are in the private sector but for hospital referrals they are exactly the same as hospital clinics: they do not charge for eye tests and you pay only the current NHS rate for any lenses they fit. I think this comes to about £45 per lens, but there are others who are more current on this than I am.

If all that fails, and I can't think why it should, post here and ask if anyone in your area can contact you in a pm with info about optometrists in your part of Cheshire who know about KC eyes. I guess there will be folk who can give you advice.

but know this, also. We all know exactly how hard this is for you. Each of us hopes you manage to get a result.

Yours aye

Andrew

JB,

I also cannot understand this "voucher thing"!

I go to my independant optician, who tells me my prescription is complex. I give her my National Insurance number and sign a form. And that's that. I get free eye tests - and I've had them much closer together than three months too - and the paltry NHS discount of glasses.

I like Andrew's suggestion, but why not call your local ind. optician, explain the situation and ask if they can help. You'll be amazed at what the independants will do.

Please don't go around assuming that everyone will be as nasty to you as SS have been.

In Australia we have medicare, similar but different to NHIS. Here I make an optometrists appt pay for my glasses and lenses but pay nothing for the appt no matter how many I have. If the government think I have to many they check out the reason. If you have a health care card (low income or pensioner) you can be eligible for free glasses, not sure about contacts but the frame choice is minimal. My private health insurance gives me $350.00 a year back on lenses or glasses, not enough when I had active KC, but enough for a set of glasses (without transistions lenses ) a year, and for my kids to get new glasses each year. The possible kcer may send us broke though.

this voucher thing is because im under 18, so i get an NHS voucher for glasses/lenses and an eye test. i had an eye test in January but i know from how i see things that them results are no good any more. In January i was also given some contact lenses and sent home but i cant see a singe thing through these lenses thats the problem. SS say they have this return policy and you can take them back but they didnt let me. So because the Hospital is taking so long thats is one problem, and the other is i can't walk into another Opticians because they say you have had a sight test less than 3 months ago so we cannot give you another.