UK Keratoconus Self-Help and Support Association

Hi all,
I am new to this forum and would like some help and advice please.
I am 39 and was diagnosed with KC 2 years ago. I am being seen at Nottingham Queens Hospital, but due to them being behind and then not priority (letter sent to me) due to Covid, I haven't had a follow up to my appointment. This appointment was to see if my condition had progressed, in which I can definitely say yes.
My left eyes is the worst, which Is just blurry, but now I can tell my right is going. I feel sick and dizzy a lot of the time and my glasses I have had for 2 years, don't do anything.
I am in a dilemma, not knowing what I can do, I quit Teaching because I felt guilty of not being able to give the children the best education and hoped my eyes would have been fixed or semi- fixed so I could return.

Sorry for the long essay, I am just lost on what to do.

Thank you

Hi,

It's a real concern to hear your story. I am sure in your current position where you don't have a plan is of great concern to you. Typically in the early stages you might be seen in 6 months to see if there is any detectable progression. However, it does seem from the fact that you have had to give up teaching (at least for now) your condition does need some treatment. Usually, when glasses are no longer effective there are a number of different contact lenses that do work well for KC, starting with regular small RGP lenses. Many people with KC use these successfully for years.

So I think we need to address how to get you seen at Nottingham Queens Hospital. I don't know the hospital personally but it does appear that they have the full range of services and a large number of specialist consultants for Ophthalmology. Helpfully their Ophthalmology webpage does list all the direct contact numbers. Presumably, your hospital letter tells you your hospital number which always helps when contacting them.

The significant factor for you is that you are not able to continue normal living and have had to give up your employment due to the condition.

You may need to try several different routes to get someone's attention, but I would work through (the numbers are under the 'Contact us' link:
Waiting list coordinator
Orthoptic department
even Eye casualty (as some hospitals are currently using their A&E teams to triage patients)

If you get nowhere with this a conversation with your GP might be the best way forward as GPs often have a direct contact with the specialist departments in their local hospitals.

Do come back if you have any more questions.

Graham

Just to add that if you can't get an early appt at QMC, there's an excellent optometrist in Nottingham who specialises in KC and is the principal optometrist at this practice https://brooksandwardman.co.uk/
He used to reply to posts on this forum giving us the benefit of his knowledge, and was recently recommended by Liam, who posts here and was delighted with the solutions David found for him. So it might be worth going there for reassurance while you wait for the hospital.

eye casualty should be still operating, by definition KC is degenerative, id present at eye casualty and ask to be seen , explain that your condition is having SIGNIFICANT impact on your daily life ie giving up work due to it, the physical affects etc and that should put you back in the system to be seen by someone sooner.

Good luck x