Patient perspectives of Keratoconus

[Mike Oliver]

I have been asked to speak to some optometrists and others at a study day devoted to Keratoconus, giving them the patient perspective of KC. In other words, it is a chance to give the professionals some idea of how we perceive them, how things can and do go wrong and what it might be helpful for them to have in mind or how approaches might be changed or modified.

It will not be a forum to debate what treatment/management is appropriate, but rather the practicalities, their approach, how we feel we are dealt with and how we think procedures, attitudes etc. could improve and what issues are of the most concern to us.

So at the risk of being deluged with replies, are there any horror stories, comments, criticisms, moans, constructive suggestions or other contributions anyone out there would like me to consider when putting together my words of wisdom? I need your input to make the most of this opportunity and am more than a little nervous since it is the first time I have been asked to do this. Help!

[Susan Mason]

Mike

My comment would be and I must stress it is not a moan, just a comment:-

I am sure we are all very aware of just how highly trained and knowledgeable the consultants and various people we all see are. However, when they speak to us and we are in most cases anxious, worrying about our jobs and various life changes we have needed to make to fit in with the KC, we need to be communicated to very clearly. What doesn't help in these situations is muttering to each other whilst you the patient are sat at the slit lamp or worse still the sometimes tone of 'what you don't understand what I have just told you, has it not sunk in?' Well in most cases it may not have sunk in especially if it was what you didn't want to hear or worse still what you feared the most and also how many of us are medically trained?
I can just about remember what the eye looks like and basic workings from school, however since KC obviously have wanted/needed to know a lot more and sometimes when good vision is difficult to maintain or limited sitting looking on the internet or reading books is not so easy.
It is also difficult if you have lots of questions to fit them all in especially when you know the clinic is full and people are already late for their various appointments.

Recently I saw a very good Dr who was obviously aware I was stressed with the whole situation however, he quite quickly explained he would look first so if I could just sit nice and still for him, he would then read my notes etc and then I could ask whatever I wanted to, simple really however not always as it goes appointment wise.

I know they must all be under a great deal of pressure to clear patients and are also needed in theatre and on the wards however, hopefully at the end of the day they go home and see family, relax watch the tele read a book etc maybe study. All the things most of us took for granted and now sometimes don't find so easy to do.

Hope this makes sense.


Susan

[jayuk]

Hi

That sounds a good opportunity you have there!!

I thin, whilst I can think of lots of ideas and things to say, I am sure you only have a set time to delivery your piece in..

I think you may want to give an example of what a Normal person see's and what a person with KC sees at mild, interediate and advanced........Now this may sound an odd thing to suggest but I tink it would some it all up in a spech / power point presentation of a few slides.......I think also Id comment on the lack of understanding on more than half the specialists of what a Person goes through on a day to day basis and how there life deterioates as there KC gets worse........thus the importance of Correct Lens fitting, prompt dates, options available to them and the likes......

I think this one is a broad question but as I said, I am sure you only have a limit on the peice..

[Lynn White]

Ohhhh

Where is this Mike?

As a professional myself and someone who has been in teaching situations... I would say you really need to hit home with the nitty gritty practicalities.

Optoms who are not used to KC can quite happily tell someone "Just leave your lenses out for a week or two" without actually clicking that this could be totally disastrous work wise.

I know this sounds very basic - but this is often where the gap between professionals and patients shows up the most. Optoms are trained to do the best they can professionally for the health of the eye. Increasing litigation makes many afraid to go out on a limb and work with a patient to help manage their life better. I am sure you understand that many an professional has been bitten by being helpful to a patient only to be sued later... so they often just work by the book - which isn't really that helpful to a KC patient!

This occasion may well involve optoms who have a working knowledge of KC - but never lose the opportunity of just telling it how it is.

In fact - printing out the thread where I asked people their experiences of KC and presenting that may well be helpful!

Lynn

[Sajeev]

Hi Mike....Great thread to start...

There are so many things where do i start?!?!...lol

But here are some quick thoughts which comes to mind ...

I can imagine very easily a meeting, somewhere, someplace, ...where the subject is about where to put more effort and resourses for each eye condition...and the condition called keratoconus comes up...!!!

I can imagine someone saying...what about this condition called Keratoconus...what do you think about focusing more effort and resourses to that?....and I could imagine what the reply might be.....it would be....ohhh! they have contact lenses!

And the reply coming back would be.....whats the problem with that?....and then they would move on to the next subject!!!...lol

As we can see here on this forum...we can see people come on here...who really do have problems due their KC...many are soildering on with pain, discomfort, various other troubles...and may be suffering needlessly!...As I see it, many are intolerant to contact lenses by various degrees, ect...

A co-ordinated national frame work or a straergy is not in place...It is seen by the patchy cover as witnessed here, at various times.

There is also a whole range of (and new) contact lens that is not available nationwide. The level of KC care you get is dependant on where you happen to live!...which i don't think is fair...

Also I think more training for eye care personnel is needed...not only in contact lens but about keratoconus it self !...

And not forgetting the collecting of statistics on underling conditions...a co-ordinated effort to help the gentics programmes (who are working on the genetic connection) so their work can be speeded up to find a gene therapy for KC...

Including the fact that a wealth of knowledge & learning can happen through international networking!!!....

by comparing notes...checking out what best practices is being adopted over-seas...pooling data together...ect

Also I think there sould be patient repersentatives who attend meetings where decisions are made so that better decisions are made!...


Thats all for now...lol

Sajeev

[Drew Radcliffe]

Hi Mike

Thanks for giving us all an oppurtunity to have an imput.

There's four points that I would like to make based on my experience. Diagnosis, Therapy, Cure or support.

We all have our own horror story about when we where first diagnosed. Mine was being told that my cornea was failing and I would need a permenant contact lens glued to the front of my eye to stop it doing so. I then had to ask what the name of the condition was and asked her to write it down. Having read up on KC I was able to calm down from being freaked out.

We all know the therapy's that are available whats good bad and ugly about them. The medics are very forcefull about this route even though you may only end up with the ability to wear them for a short time each day.

Corneal grafting - I've already been offered one and I only have moderate KC. I have made the decision not to do this until either my vision is so bad that its worth doing or my cornea scars, and I may well never get to either end point.

Registration - Blind or Partially Sighted. I can only wear my sclerals for a short time, they allow me to see the things in life that are really important to me. But on balance being registered PS has made a bigger impact to the quality of my life than anything else. I had to keep nagging for it and I am well inside the criteria for Registration. The medics seem to forget they can always deregister you when your back up and running.

They key to what im saying is patient choice and education. I like many of us has had to educate myself, so that I can make informed choices about my treatment and support needs. It would be nice if they would balance patient needs on a principal of therapy, cure and support, and effectively implement all of them in a equal and balanced way as appropriate to individual. This would ensure that you got the support you need, whilst they are trying to maximise your outcome.

[Lynn White]

OKay....

Let me just say something here... there is a big distinction between "medics" and "optometrists".

Mike is going to be talking to optometrists...

Optometrists cannot diagnose under law. This causes all sorts of confusion, misinformation and also contributes to patient getting more hyper than they should.

The situation is this: if I were to see a patient in my practice whom I am pretty sure has KC, under law, I cannot tell him so definitely as this would be diagnosis and we under law cannot diagnose - we can only "recognise" a condition and refer on to a consultant.

There was a case some years ago where an optom was actually struck off for mentioning to a patient about her pregnancy - turns out the fifteen year old girl did not realise she was pregnant nor did her mother.. but the optom saw she had eye problems related to toxaemia of pregnancy and understandably assumed they knew all about it - she was VERY obviously pregnant! But he was regarded as diagnosing a medical condition which is against the law and so was struck off.

Now this is obviously not a very practical aspect of the law and the situation is gradaully changing as we optoms get more involved in direct referrals of cataract etc.,.,.. however, universities cannot really run a course on patient management during diagnosis as we are not supposed to do it! Therefore there is an extreme lack of skill in this area.

Even last week... when I found a patient of mine had KC.. I had to sit down with the parents and very carefully steer round it... I had to say -"I think your son may have a condition called KC but this will have to be confirmed by the hospital." I had to be very circumspect and eventually had to explain more than I "should" because the parents very obviously were going to hit the internet as soon as they got home.

Other optoms may handle it by not saying anything at all but just saying that there is a problem with your sight and you will have to go to hospital... which causes a lot of stress to the patient.. and at the hopital, they really have not got time to sit and counsel a patient.

So often if you have a bad experience with being told you have KC it is because sometimes the optoms are as scared of it as you... they have no idea how to approach the patient with explanations because we are not supposed to be trained to do it!

Another interesting difficulty I had in Trinidad was that the consultants would often not confirm KC when you referred a patient.. a diagnosis of high or irregular astigmatism would come back...and I have had this happen in the UK as well.. so where does that leave the poor optom?

Also - optoms cannot register anyone blind or partially sighted.. only the consultant can do that.

Legally, an optometrist has absolutely NO input into therapy direction. They can only work within the instructions of a medic. So its fine if an ophthalmologist refers you to an optom and says just to fit contact lenses... but if we are told to fit Rose K for example.. thats what we have to do even if we think it won't work. To do anything else we have to write back to the consultant to ask permission.

Obviously there are situations where consultants and specialist CL fitters have a good working relationship and there is much more freedom to fit as you want - but there are some consultants who really dislike optoms and will not give us freedom to fit as we like.

Similarly we have absolutely no legal right to discuss with you matters concerning grafting. That is entirely a medical decision and we are not trained as medics. The fact that we may know every aspect of grafting is entirely beside the point. Our actual training now extends way beyond what we are allowed to do in law and because of increased litigation following the US model, many optoms steer clear of anything that may involve them in appearing to make clinical decisions.

What you are all saying here is mainly about consultants NOT optometrists. We optoms would love to be more pro-active about many eye conditions - we have been fighting for this for years - but we are simply not allowed to. This year we MAY just get the right to start prescribing ocular drugs. At the moment - I could sit you down at my slit-lamp, see you have an eye infection but could not give you a prescription for anti-biotics. I have to refer you to your GP who does NOT have a slitlamp and who cannot tell if you really have an infection or in fact an allergy or, say, keratits.

I am actually very glad you started this thread Mike because I think we really do have to start differentiating between what consultants do and what we optoms do - or are allowed to do.

I agree we need a national strategy - but for that you need to talk to consultants - not to us!

Lynn

[Drew Radcliffe]

Thanks Lyn for The Clarification - I'd obviously got confused about the roles here.

It was my Optometrist that told me I had kerataconus and I can now understand why she was so unforthcoming to my probing her with questions, subsiquent to seeing the consultant she is a lot more open and informative with me.

Perhaps had I been referred to the Hospital because of concern's arrising from my increased astigmatism and when i probed was told that there are multiple causes which the consultant would have to diagnose I would of been more gentle on my Optometrist and not pushed her into an ethical/legal corner in which she could comprimise herself.

Must say that I have every confidence in her as a practioner and despite the ethics/legal issues that you have raised I will continue to use her with confidence.

[Lynn White]

Yes Drew... that is an useful point and one that hopefully that Mike will pick up on. Mind you, even just saying that your increase of astigmatism is of concern would have got you probing...

As you point out.. once diagnosis is made, we are free to discuss alternatives more openly and can confer with receptive consultants about therapy. Its really the diagnosis but we have to be careful about.

We also really cannot advise you against a graft even if we think its not a good idea... as we are not medical people. However, as often the front line professionals who deal with your day to day problems, we often have a better idea of your condition than a consultant who see you only on hospital check-ups - so getting a good optometrist and visiting regularly is often the best way to make sure things are going OK. They can also keep your GP and consultant informed.

Lynn

[Sweet]

Thanks for clearing all that up, as even being a nurse i didnt know that! I did wonder why i didnt get any answers from so many questions when i kept asking optometrists and i have been to so many. It was just like wait to be seen in the hospital which is always at least a 6 month wait.

My consultant is very nice but after i was diagnosed i got more help and support from my optom as they knew me better, it was them that had to sit there with me when again i was struggling with a new lens, whereas i only see my consultant once a year. The optom i know from Wales has been lovely as well. When i moved to London and have been waiting so long, they agreed that i could come back and even managed to slip me through the net to see my consultant again so i have to praise everyone except the long wait! Which i know is unavoidable.

Thanks again, Claire X x X