UK Keratoconus Self-Help and Support Association

I'd love to see more service user involvement in the training of ophthalmologists, optometrists and lens technicians.
I know some of you have been involved but I'd like to see greater, more organised involvement. I think we have a lot to offer not only in terms of first hand experience and impact on life, but also practical suggestions in relation to examination and teaching.
Take for example ophthalmologists - it can be so much easier if they approach us slowly when testing pressure and get us to look in the opposite direction when removing sutures. They also need to believe us when it comes to sensation and LA. The consultants in my experience are absolutely fine on this, but not neccessarily the juniors.
Optometrists, in my personal experience are much better at talking through anxieties and giving information. Then lens technicians, they often do not appreciate how the person feels, that everything might be riding on that piece of plastic. I know there are time constraints but I watched someone expected to put the lens in/out, in/out with no break after the lens has been all around the eye. Now if my lens moves off centre and I have to get it out, it's a bit sore as I've scrapped the eye , so I leave it out for 15 mins or so before I put it back in. I let the eye settle, I wouldn't immediately put it back in. I appreciate time constraints but when I was given lens lessons over 20 years ago the nurse would say, 'have a break get a cuppa, come back in 10 mins', especially if there were problems. Not feeling under pressure of time actually helped me.

I'm interested in what optoms here think and I will raise the subject of user involvement in training & education at the conference.

Louise,

Lynn has made the first step in compiling a list of optoms with an interest in KC and I thinkt here skill levels too.

I have no idea how big this is, but we are getting to a point that perhaps soon we can sit down as patients and optoms and put across our concenrs as you have done above and they can inform us of the issues they are faced with.

With this common understanding, then together we can tackle the issues we face with their support.

I think much of what you have said is also hospital specific.

I appreciate time constraints but when I was given lens lessons over 20 years ago the nurse would say, 'have a break get a cuppa, come back in 10 mins', especially if there were problems. Not feeling under pressure of time actually helped me.

Taking time as you mentio you got 20 years ago is the norm at the hospital I have been going to for nearly 3 years now. It was the same at the opticians in the high street that did my first set of lenses.

Yes I know, but I'd like to see ophthalmic workers have input from service users irrespective of a specific interest in KC because they probably need it more!

Any dialogue of needs, concerns and constraints would be great, alongside involvement in training.

Yes I was referring to one hospital regarding the lens technicians. I am also aware of other members with concerns regarding other hospitals. I'm also aware that not all KC work occurs in hospital, I should have added opticians to the above list!

Louise...

What you are talking about relates to Continuing Education and Training.. ie CET. What is needed is workshops where there are a good supply of actual "subjects" with KC.

In the past, there has been no real connection with people organising CET events around subjects like KC and this group which could conceivably supply volunteers to go along and be "guinea pigs" during the lectures/workshops or indeed supply information from a patient point of view.

Now we are getting the optom friendly list going, we do have more access to practitioners and educators - which is also part of the reason for creating such a list.

To a certain extent, there is no reason the Group could not co-operate with a CET provider in organising an event which would attract CET points for the professionals... something to look into here I think.

Excellent idea Lynn, and pehaps the KC group could compile a list of members [via a survey?] who would be willing to be contacted directly to participate in training. There could be a list made available to the appropriate places and people so they could email/call them up directly and the group wouldn't have to do any further work.

It is a good idea. I have given my details to the London institute but they seem to have quite a few KC patients already! I do hope that they get the info about our group.

Me too, and I have my own springy eye glasses!

Well done Louise this promises to be a positive and moving forward thread, working together, sharing information and helping each other with one goal.........to make improvements in KC healthcare and identify the centres of excellence.