UK Keratoconus Self-Help and Support Association

Hi all,
New to this forum but been usin this as a place for advice for quite some time. A little bit about me firs i suppose!
Ive been diagnosed quite late in life with kerataconus for about 5 years now (29 currently). and moved quite rapidly from glasses to hard standard contacts via Specsavers, Before being referred to the Leicester Royal NHS to confirm my Kerataconus and then move onto RoseK2 Lenses.
I have been on these Lenses now for over a year and been discharged from the consultant as they beleive my KC has stabilised (mostly due to the corneal scarring from what i understand) howver i still attend the LRI optometry to check my eyes.

Recently however i have been getting very photophobic with these lenses and very dry eyes requiring eye drops. Also ive been noticing headaches more regularly. however when mentioning this in June of this year they mention its just a phase and not really worth changing the fit or lens type.
As i was particularly frustrated with the NHS i decided to search externally for other potential lenses that would be better for me. Luckily i found a very good local contact specialist and after trialling KeraSoft IC - I am sadly unsuitable for these due to my corneal scarring I have settled on the SO2Clear lenses which has given me amazing clarity - better than 20/20 in my left eye (currently waiting to fit my right eye).

My question really is this:
Going private for these fittings and lenses is obviously very expensive, and i still am currently a patient of the LRI optometry.
Does anyone know if it would be possible to receive the So2Clear lenses on the LRI now that they have been successfully fitted and i know the power/fit?
The lenses ive had through the LRI are practically useless compared to So2Clear - comfort is astounding, photopohbia seems non existant and these seem much harder to have problems with dust and lenses falling out. making sports and activities not a worry anymore.

I spose in a perfect world id like to be able to purchase these lenses through the NHS and then see the specialist privately to check the fit/power as i have alot of confidense in her ability. Would this be possible?

Hi Pacee and welcome to the forum,
Good to hear that you've got such good results with the SO2Clear lenses - we've had a few other people on the forum who also swear by them. Though as we keep saying here, everyone with KC is different and a lens that works wonders for one person doesn't suit another.
You can only find out whether your hospital eye clinic could provide them for you by asking them. As you have found out, these lenses are much more expensive than corneal rgps and sadly some hospital eye clinics now have budgetary restrictions which can limit the types of lenses they can fund, though hopefully that isn't true of the large contact lens departments in big cities.
But I have to say that the 'perfect world' scenario you describe at the end of your post doesn't seem fair to either the hospital optometrists or the private practitioner! Where is the job satisfaction for either of them in this arrangement? Perhaps one of our optom members will have a view.
Anne

Surpised the Kerasoft IC are unsuitable for you becasue of coneal because I know many on these lenses who's corneal scaring has reduced as a reult to changing to a soft lens, but as Anne says not all lenses suit everyone.

My hospital were initially reluctant in fitting me with the Kerasoft IC, so I had them fitted privatly and went to my normal check-up with the lenses. They weren't happy but when I explained that as the hospital were unprepared to try soemthing differnt I felt I had no choice. When they checked my eyes and found I was seeing far better than any RGP lens I had in the past and that I could wear lenses for a decent length of time with no photophobia they relented and now provide my Kerasoft IC lenses.

I was told photophobia is just soemthing some people get when they have KC which I accept to a point, but I am now of the opinion that optomotrists should be asking why when the vision is corrected, any significant level of photophobia should be investigated. Since taking part in lens fitting workshops and attending contact lens conferences, support group meetings etc I have met so many people that were photophobic wearing the traditional RGP lenses that have since changed are no longer photophobic and who's corneal scarring has got less the longer they are out of RGP lenses.

For some a change of lens will have no affect because the corneal scarrrgin is due to the Keratoconus, but I understand that a good optomotrist can usually spot the difference between scarring due to lenses (even well fitting lenses) and that as a result of Keratoconus.

In the Midlands we are blessed with some excellent lens clinics, Leicester is one, Northampton another, I go to Coventry which is excellent and then there is the big eye unit in Birmingham which I understand is the second biggest eye unit in Europe, so I think Moorfields in London is te biggest.