UK Keratoconus Self-Help and Support Association

Hello All,

Feeling a bit frustrated and low at the mo I found out the other day via an Artemis scan at the London Vision Clinic that I do have KC, I had been to various other laser surgeries and was declined treatment and even went to see a consultant at Southend Hospital who was about as useful as a chocolate fireguard! I was given no further information from this consultant other than "chase the prescription as it progresses" well gee I didn't think of that how long did it take you at uni to figure that one out?

Anyway rant over for now, Prof Reinstein at the LVC has said I am suitable for the cross linking procedure but I can only get in for this in Feb 07, and to add salt into the wound my pupils are too large for Intacs to be placed in them, so I guess from a positive side I guess I can at least prevent my vision from getting any worse. In light of this and due to the occupation I am in I decided to go to Specsavers to see if I can better vision with RGP lenses as the vision provided by my current glasses and daily disposable contacts is becoming too degraded for me to remain safe in my role.

However in the great tradition of my eyes being the complete genetic abnormality that they are, the optomotrist at Specsavers aid she didn't know if "normal" RGP lenses would suit my cornea's but is willing to try and fit some, but stated that the best would be to order in the Rose K lens, but she stated that due to the fine irregularity in my cornea's she didn't think they would be able to cater to my shape again I seem to be hitting a brick wall!
I guess I will just have to wait and see what the outcome is!

Anyway the main reason behind me posting this query is that I wish to find out if there is any government funding which would be available to someone in my position to help assist with the numerous payments I have to make in order to maintain a satisfactory standard of vision, for example these are the current expenses I am looking at

(private treatment) C3R 2,500.00
umpteen eye sight checks at 15.00 per test
RGP lenses/Rose K lens from 350.00+ per year

Surely if you have been diagnosed with this condition there must be some form of fiancial assistance!

If anyone out there could be of any assistance please post a reply on the forum or reply to my e-mail address which is brian.kristy@tiscali.co.uk

Many thanks for your assistance from someone who is becoming mentally fatigued at the constant banging of my head against a brick wall!

Brian

Good to see you got here!..Or rather found the board!

Not good that you have so far had a kinda useless experience!

In terms of financial aid; I think alot will depend on your personal circumstance. BUT, if you do get yourself refered to an NHS Eye Clinic then Lenses are subsidised per annum

However, new treatments C3R etc will not be covered...this will have to be paid by yourself....

It may be wise to get yourself referred to Moorefields or somewhere from your Dr?.....

HTH

Jay

hi brian
david o brart at st thomas hospital in central london treated me with c3r earlier this week.
i phoned for an appointment for a consultation on the friday, had the consultation on the tuesday and had the c3r on the wednesday.
seems a long wait til feb??
cost was £750 per eye.
mr o brart is one of the top corneal guys in the country and has a website, http://www.davidobrart.co.uk, if you want to take a look.

Brian,

Welcolm to the forum.

RGP corneal contact lenses should be able to improve your vision. Rose K lenses are a particular design of RGP corneal lenses which are specifically designed for keratoconic eyes. But fitting our eyes is a specialised art. It can take a lot of chair time to find that 'perfect' lens fit. To do this you need to find some one who is experienced with fitting keratoconics, and has the time to fit you.

Ask the optom how much experience she has with fitting lens for KC. If she is experienced, or has and interest in KC, then you will find it really useful as you may have several appointments in the near future and it will be easier to see someone who is local to you.

If you decide to go the NHS route then it could be some months before you get an appointment. The lens from Moorfields are about £50 pounds each and as jakuk said include any prescription changes within the following 12 months.

Lia

Brian,

Just to underline what Lia said above, you need to find an optician who can afford the chair time that you need.

Whilst it's a generalisation, most of the "high street names" in opticians like Specsavers, Boots, D&A etc. don't have the time to spend with patients like us.

You're usually better off with a small practice "independant" optician.

Brian

Along with the need to find an optician who has time (and the skill) to fit keratoconic eyes, you need also to be seeking a referral to a hospital ophthalmology clinic.

If C3R is indicated, then more and more people in the Uk are having this procedure on the NHS. In the meantime, lenses may be able to give you very good sight for a very long time.

All the best

Andrew

is c3r available on the nhs?? is there anyone on here who has had this done on the nhs??

Ashley

It is becoming available. We had an ophthalmologist come and speak to the Scottish Group who was at the point of going to the ethics committee to request a pilot study of C3R in Glasgow. I guess it may take some time before the protocols have been rolled out to every part of the UK, but the Scottish end of the NHS seems pretty well advanced.

Andrew

Brian - as I've said recently on another C3 R thread, several hospitals have applied for ethical approval to conduct trials of this treatment, though I don't know of any that have got the go ahead yet. Once they do, then it will be available for the people they select for their pilot trials.
Anne

Brian,

Hello and welcome to the forum!

Not a lot to add here after the excellent advice you have already had!! I just wanted to say hello and hope that you can find a lot of information and support here.

RGP lenses have given me really good sight for 16 years so hopefully you will find someone who can fit you as well.

Take care ... Sweet X x X