UK Keratoconus Self-Help and Support Association

I have been diagnosed today with Keratoconus and need to wear contact lenses . I have an appointment with a NHS conctact lens clinic , is this the best option or should I use an optician ?

I work for London Underground in an operational role and have been told by occupational health that I cannot wear any type of lens for safety reasons so this will affect my position within the company . Has any one had a similar experience ?

thanks Wolfie

Hello Wolfie and welcome!

If you've just been diagnosed, then an NHS contact lens clinic is a good place to start as it will have optometrists who have lots of experience in fitting keratoconic eyes, and you'll also have your KC monitored by a consultant ophthalmologist or members of his/her team. It will also mean you get your contact lenses at NHS prices (currently £50.50 per lens) rather than High St prices. Many High St opticians hardly ever see anyone with KC, so don't have the experience in fitting contact lenses for it, although there are some who are particularly interested in the condition and do have the expertise (we've recently started a list of these which you'll find on the home page of this site).
I'm surprised that London Underground have such stringent rules about contact lenses, although I know there are some occupations like this. But under the Disability Discrimination Act, your employer is obliged to make reasonable adjustments for you, which may mean finding you an equivalent post in the organisation. I'm sure others who post here will join in as we have several veterans who have dealt with occupational health! And have a look at our Keratoconus at Work leaflet which you can download from the home page.
Do PM or e-mail me anne@keratoconus-group.org.uk if you'd like to join our mailing list and get our information booklet on KC and other literature.
All the best
Anne

Hi Woolfie

There are pro's and cons of both NHS and high street opticians.

The NHS in my expereince has a greater selection of the types of lenses for KC and due to the cost of lens fitting sets high street optoms often do not have the full range so limited in what they can fit. Some high street optoms find it hard to stay completly up to date wioth lens options for us but I know in some areas of the UK the same can be said for the NHS.

Upside to a highstreet optom is they can often see you far quicker and should you need a new lens they can get one quicker. The other question about highstreet optoms, how do you know you have a good one?

Regarding do you need glassews or contact lenses, the optoms verdict can differ to th doctor whi diagnosed you. Mine is well respected in his field and sail contact lenses only solution After a few years I challenged this with the contact lens fitter and actually I can get good enough vision to drive legally with glasses despite being told my KC is well advanced.

Regarding your occupation, the occupational health people need to give a good reason why contact lenses are a high risk so no one can wear them. Mine told me the same thing, but could not adequatly explain why so I tried many safety glasses and found a comfortable set which offerd so much protection they could no longer justify why I could not work while wearing contact lenses. We all employees go for safety glasses fitting so each employee is issued with the best fitting safety glasses.

If the issue is regarding protecting your eyes from damage then you employers have an obligation anyway to ensure everyones vision is suitably protected emplyees, visitors, general public and so on.

Rgerading change of job, my understanding is that part of reasonable adjustments emplyers are obliged to make for us is job change of equivelent level within the organisation.

Hope this helps.

Gareth

P.S If you know someone on London Underground that owns a Sierra RS500 and I think a Focus RS; say hHi to Lord Lucan from me

Wolfie

Welcome to the forum. I am sorry to hear of your diagnosis, but agree with both Anne and Gareth that you will probably be as well served by a hospital optometrist as any other; indeed they will probably do better than many high street optometrists simply on the basis of their greater experience of fitting lenses to Keratoconic eyes.

Have a word with your Union about the work situation. I think tht "no lenses for health and safety reasons" is an easy fall back position for employers, but this does not have to be their final position.

Also, you could have a word (or maybe your Union would do this for you) with the Access to Work team at JobCentre Plus. They were wonderful for me; sorting out along with my employer a whole range of djustments to my work environment that made it possible for me to work on without a break.

All the best

Andrew

my suggestion is a). do some research wolfie and b). get lots of opinions on everything! i wish i had done this years ago.

maybe you could look into c3r to halt the progression of KC?

good luck,


tim

Tim,

Your enthusism for C3R is comendable, but Sheraz Dhaya a consultant that presented at our confrence this year stressed although this techneque has been researched for the past 10 years, it is still a very new treatment and as yet we don't have the full long term picture. Plus what is beneficial for one person may be completly inappropriate for another.

Those of us who have had the condition for many years and seen promises of cures and so on which have come to nothing are still warey of new techneques.

Take your time, ask lots of questions and question the answers you are given too.

Hi Wolfie

I am an optometrist myself, so please ask any questions you want.

The first thing I would like to say, in support of what Gareth said, is to challenge this rule about contact lenses and find out exactly why they say you cannot wear them. As an optom, I have found that in some cases this is a an old rule that has never been revised as the situation has never come up before - as in people just accept it and wear glasses at work.

Once you have a reason, if you come back to us here on the boards and let us know, we may be able to offer more advice.

Keep your NHS appointment and find out the situation regarding what contact lenses are advised. It is only then you can start thinking about what to do next as by then you will have a better idea of what stage your keratoconus is at. Please do mention the job related problems to everyone you see so that they know that wearing contacts may be a problem. That will help them to help you!

As always, Lynn gives good and well considered advice!

Andrew