UK Keratoconus Self-Help and Support Association

Hello.
I'm a young optometrist who is fairly new to the game, and have seen only a handful of keratoconics. In a quest to improve my handling of these situations, particularly in first time diagnoses, I thought I'd ask for some opinions from the patients themselves on how they feel diagnosis should be handled, with their hindsight on the matter.
Were you diagnosed by your community optometrist, or was it following a referral to an eye hospital?
When you were first diagnosed, what were your initial thoughts/fears?
When you went home afterwards and really thought about the condition, perhaps with a bit of googling having followed, was there anything you felt that you'd wished your optometrist had addressed?
And I know that many of my colleagues are absolutely amazing at what they do - was there anything that your optometrist did or said that you found really helpful/informative/reassuring?

Thank you!

My own condition was first recognized by a high street optometrist who handled the situation very badly. He dismissed me with an airy observation that I had an eye condition and told me that there was nothing that could be done. I therefore did nothing.

Several years later and living in another town I went to another optometrist who said that he could see something in my eye that needed attention. He gave me a letter to my GP who immediately referred me to the local ophthalmology clinic. There I was told that I had keratoconus, that I would go blind but that they would 'punch out my discs and give me new ones from a dead person'. In the meantime, he referred me to a high street optometrist who had the contract hospital contact lens clinic referrals. There I found a whole new meaning of patience. Nobody put a lens into my eye; instead they taught me to do it myself.

I then moved again, this time to Glasgow, and came into the orbit of the Tenant Institute of Ophthalmology, now housed in Gartnavel General Hospital. The quality of my care has been first class.

I'd say that there are stages that would be helpful to anyone learning that they have keratoconus.

1 That they are not alone, and that there are things that can be done.
2 An early referral to a hospital ophthalmology Department and introduction to the hospital's contact lens clinic or high street optometrist who has the local contract.
3 A realistic appraisal of the treatment options available, given the clinical indicators.

Welcome to the forum, and thank you for raising an interesting question.

Every good wish

Andrew

Hi saoirse,

I am an optom with many years of experience in keratoconus and your questions remind me of how I got involved so much with the patient group many years ago. I asked the same sort of things and was variously amazed and horrified at the responses. Many will tell you how badly the diagnosis was handled and how confused and upset they were to hear they had this condition. Many professionals bluntly tell people they will progress to needing grafting when in fact, that is increasingly becoming a last resort.

A major issue for me was that of quality of life. In the UK, we have to refer on to hospital for diagnosis. Some mild cases are referred back into the community but most end up in NHS Contact Lens Clinics. Now these clinics do a wonderful job but one major problem is that time is limited and many people are seen at 3 monthly intervals - even for pick up appointments. For example, you will see another thread here where the person was seen in January but is only getting their lenses in March. Bad enough if you are a "normal" contact lens patient but if you rely on CLs to function - that is a VERY long time!

I used to think that was inevitable until I went to work in Trinidad for a while. At that time (2002) there were no hospital clinics, so everyone was seen in the community and time elapsed from recognising the condition in a routine eye test, through referral, fitting and pick up of lenses was around 2 - 3 weeks on average. Which made me think a bit, I can tell you!

Nowadays, there are available, privately, a wide range of surgical interventions for keratoconus, a lot of them based around cross-linking. This makes it a very exciting time for all practitioners involved in this kind of work.

Are you interested in getting involved in fitting lenses to keratoconics? Happy to chat with you if you are!

Lynn

Hello Lynn.

I haven't really given much thought to keratoconic fittings, if I'm honest. I'm coming towards the end of pre-reg at the moment, and there are so many areas that I would like to explore further; keratoconus is just one of them! I work in a large multiple, and although we have a keratoconic fitting set and are listed as a keratoconic contact lens centre, we have 3 CLOs who handle pretty much all of our lens wearers. Additionally, it is in a very working-class area where few people would opt to go privately over the NHS. Hence I don't think there's a great deal of scope to get much hands-on experience, for now at least.

This topic was inspired by a young teenage keratoconic patient that I had in practice a few months ago who didn't know he had the condition, but his VA in the worst eye was 6/36 with pinhole and the K readings were off the scale. I referred him on to the hospital for fitting with CLs there. He knew that something was wrong, what with vision in that eye being so poor, but hadn't been offered an explanation of why. I explained the condition without actually giving him the name "keratoconus", because he was only 15 and I was frightened that he would go straight home to google it, and be met with terrifying images of conical corneas and horror stories of acute hydrops, corneal grafts and visual impairment. Considering his young age, I thought it best for the hospital to deal with it, but perhaps I was wrong... hence the topic - I want to hear from the patients themselves.

How did you get so involved in this field?

saoirse

Don't worry about working for a multiple; in Glasgow one of the best and most experienced contact lens fitters in the private sector who works with patients with KC works for a pharmacy that has an in-store optometry department.

Andrew

I don't have much to add as can't fully focus my eyes this morning but wanted to quickly post to say WOW! a optom who already wants to do more to help us this is awesome, waht a great attitude to have :p made me smile this morning

Lea
xox

Hello. Perhaps if you've haven't already then you may like to read my various posts re my daughter Charlotte. Regards. Angie4Char

Hello Saoirse and welcome!
It's great to see optoms who want to help. And you're right - although it's wonderful that there's so much information on the net these days, it's easy for someone newly diagnosed to latch on to all the extreme cases and imagine that's what it will be like for them. One of the hardest things about KC is that it's so difficult to predict for any individual how far and how fast it might progress. So putting things in perspective is really important - like the fact that only around 1 in 10 of people with KC will ever get to the stage of needing a corneal transplant and only 2 in 100 will ever get hydrops. And that most people will manage well with contact lenses.
One of the things the KC Group does is to organise a national conference every 2 years. We invite ophthalmologists and optometrists to give talks on various aspects of KC, but each conference also includes stories from members. So if you'd like to know more about the patient perspective, do e-mail me your postal address and I can send you the various booklets/DVDs we have anne@keratoconus-group.org.uk And of course there's a wealth of experiences (both positive and negative) on this forum.
Anne

Hi Saoirse,

One problem with not explaining things fully at the time of diagnosis is that people imagine lots of horrible things and they also worry a great deal. This is not so bad if we had a quick referral system within the NHS, but we don't in the UK, so patients are left floundering. Taking time out to explain more thoroughly and to warn about the dangers of googling is probably the better option, together with referring straight to the support forum. The members on here are extremely adept at putting people at their ease and they deal with the fear factor before it gets out of hand. If you work in a "keratoconic" practice it would be useful to have some of the leaflets that are produced here to hand out to patients.

The problem with the hospital "dealing with it" is that they are not there to offer counselling, they are there to diagnose and fit contact lenses in the most efficient way they can. That is their job. Thus patients often fall between two stools - community optoms passing the "buck" to the hospitals and the hospitals having no time to sit and talk for long periods of time with patients.

I got involved many, many years ago. At that time, complex contact lens fittings were contracted out to community optoms and anyone, really, who took an interest could supply such CLs and get reimbursed through the HES system. This was the time before IOLs for cataracts, so you could run a busy practice fitting extended wear aphakic lenses as well as other complex cases. However, gradually, the idea turned to creating centres of excellence within hospital clinics which had a mixed result. Yes, you can now get expert treatment/management in one place BUT the patient loses convenience and in large hospital complexes can lose the continuity between practitioner and patient. Plus, community practitioners lose their skills - just consider what you have said - your practice fits keratoconics but even so, you do not see the opportunity for hands on experience. In a few more years time, as the older generation of optoms retire, these skills may well be lost for ever.

In many ways, for years and years, keratoconus was a static condition attracting little attention. There were not many options - CLs or grafts and that was about it. However, several things have changed in recent years to make this field, more correctly termed Irregular Cornea, the "hottest" growing field in optics. The first was the development in corneal collagen cross linking (CXL) around 11 years ago which is still controversial but offers the possibility of halting the progression of keratoconus. This is being combined with several other surgeries such as INTACs and phakic implants to offer keratoconics a much better prognosis. These are gradually being accepted within the NHS as well - but however well these procedures work, often the patients do still need contact lenses. Additionally, the explosion of refractive surgery in recent years has also left many people with visual problems and even induced keratoconus (post LASIK ectasia) and these people also need expert specialty contact lenses, so this is a fascinating area of expertise. However, I must say I am biased, as I love my work!!

Although I was already involved professionally, my more dedicated involvement came about when I sat and worked my way through many of the posts here on this website and others. As you say, finding out what the patients say. Doing that changed my life.

I am just back from lecturing in the US and I noticed that many CL lectures focused on the method of fitting and how to improve fits. Nothing was said about how the patient reacted to wearing lenses. For example, it is often advocated to use anaesthetic when fitting RGPs to speed matters along and to better assess the lens on eye without the distraction of excessive tears. This is routinely used in India, where I was also lecturing earlier this month. The fitting may work well but the patient is in for a nasty shock when they go home with the lenses!! With the excessive tearing, the lens simply does not work the same way as on an anaesthetised eye and a keratoconic is often more sensitive to pain than a "normal".

So, the rule is always: Patient first! They have to wear their lenses all waking hours just to function normally. If they can't wear them, they can't watch TV, use the computer, see their children, cook, or do anything the same way as they can in lenses.

I know you have a wide range of options, just coming out of your pre reg year - enjoy the diversity but remember, that dealing with this particular patient group is immensely satisfying!

OK... nuff said!!

Lynn

Saoirse, Hi there and welcome to the forum!

It is nice to hear from an optom who would like to know how patients feel when they are told about KC and how they deal with it. I hope that you hear from a lot of friends here which will help you!

I was diagnosed at 14 by a local optom who tried very hard fitting me with lenses but had to send me to another practice when he couldn't help anymore. The lenses were very painful and I never did tolerate one in my left eye until I had a graft five years ago.

I didn't take my parents with me in the beginning to the clinic as I wanted to just get some help to see. It took months before I was told that I had an eye condition that would get worse, would need surgery and that I had to wear lenses to see. To be honest at that age without anyone else there with me, a lot of it went over my head apart from him saying that in time I would go blind. I soon forgot this though when I started trying lenses and found out that I could see very well with them in the right eye! I found out that lights were not supposed to have 'halos' around them which to me was just amazing!!

My mum did come with me later on when I was transferred to another optom who was better experienced with fitting RGPs. They were so much better and at about 16 I had a good lens that wasn't painful! The new optom was very good at trying to explain things and who told me off when needed when I was 'cleaning' lenses in my mouth!! Arrghh the thought now!!! The things you do when you are young!!

Since then I have had some very good optoms who have helped me through uni and work. I moved to London 6 years ago and found this group which has helped even more! I didn't know there was a KC group when I was in Wales and hadn't really been looking until I had a lot of eye problems and was unable to wear a lens for 7 months because of a corneal ulcer. That was when this forum was a lifeline as I couldn't see to do anything else!

I still keep in touch with my last optom in Wales and have given him info about us to give to new patients. I also took my little sister to see him as I was really worried that she might have KC as well, thankfully she doesn't.

I think that optoms just need to listen, as we know when a lens just doesn't 'feel right'. If you have an optom you can trust everything is so much easier. It is difficult to hear that everything is ok and that a fit is perfect when you know that when you leave the practice you won't be able to wear that lens for more than an hour! Telling us to practice and keep trying when the lens you had before was perfect and this one isn't doesn't help! It is no good to us when we rely on our lenses so much to do everything!

Wishing you all the best with your career, and thanks for asking how patients feel when you are looking after us! Love Claire X x X