UK Keratoconus Self-Help and Support Association

Hi all

I have a quick query about regular type appointments / check ups. In various posts, kcers on here have referred to having regular appts, even if this is just an annual check up, and this has been the case where there is fairly un-progressed KC. I just wondered if people are talking about annual eye sight type tests, or if they specifically mean they get seen by a consultant to keep an eye on progression etc? After my diagnosis about 13 years ago, I had a few follow up appointments - the consultant said it wasn't worth me trying lenses as my eyes were too allergic, then the appts just fizzled out and I went for years without any (altho a few years ago I made a fuss about not being able to see and demanded I got referred for lenses - but that was about the only time I remember seeing a consultant type.)

So I guess I'm just a bit worried that the only person who has checked my eyes at all has been my community lens fitter (plus the A&E staff for the regular abrasions and ulcers) and my vision (so presumably my KC) has got much worse during this time. Is that normal practice / experience?


kerrie

kerrie

For many years I was signed up to a research programme being conducted in Glasgow by Professor Kirkness. he was trying to find out the effect on KC of not offering early surgical intervention, but maintaining patients on contact lenses.

As I understand it, he found that many patients for whom surgery would have been offered early the could be successful life long use of lenses, although the type of lens would vary over the years.

The advantage of seeing a contact lens specialist every quarter, and sometimes more frequently, was that when I needed to see my ophthalmologist I had immediate access. I had been seeing the ophthalmologist on a roughly annual basis, but when I became unable to continue to wear lenses the hospital based optometrist took me directly to see my ophthalmologist.

So, in answer to your question, I think that many people here use words like "doctor" or even 'optometrist' or "optom" quite loosely. I think that in the United States they seem to call any eye-care specialist 'doctor', but even in the United Kingdom the term is not used with any precision.

This is why I always try to post references to my ophthalmologist (eye surgeon) or my optometrist (the person who does refractions in the hospital and dispenses contact lenses or issues prescriptions for glasses) or my high street optometrist (same as optometrist, but whose business also dispenses glasses).

All the best

Andrew

ps I think that the optometrist would once have been called an ophthalmic optician.

Hi Kerrie,

One of the reasons in the past for not seeing a consultant regularly is that really, once the condition has been diagnosed, there is not much you can do about it surgically until there is need for a graft or unless some ocular emergency arises. The condition can be managed by contact lens fitters/optometrists who will refer back if they feel a consultant's attention is needed.

This may well change in the future with the increasing use of CXL and intacs. Once these procedures are well established in the UK hospital system, then yes, it would make more sense to be regularly checked by a consultant so that they could be offered at appropriate times.

On these boards you have a full range of people from those who see an optometrist annually to those who see a consultant very regularly - this is all dependent on the condition of the their KC. There is no way to generalise!