UK Keratoconus Self-Help and Support Association

Hi All,

UK Vision Strategy Initiative

I am a member of the Optical Confederation Low Vision Committee and we have been asked for a response to this Initiative. As with many such initiatives, it concentrates solely on those deemed to be "blind or partially sighted" and ignores the situation many of you find yourself in - namely being able to see normally when wearing contact lenses but rendered partially sighted when you are not. It assumes that people have static conditions who can be helped via low vision aids such as magnifiers.

However, there are many of us looking at how vision impairment affects people who are not "registrable" yet whose vision falls below what is now commonly accepted as "normal". It is an uphill struggle to get the interests of this group recognised because it is not universally accepted as an issue. This is because people in this category - which includes a good many of YOU - get on with their lives and cope.

This initiative is concerned with finding out what the "end user" wants. On this page is a downloadable pdf file which outlines what outcomes YOU would want as ta person with poor vision; Not much of it, if any, applies to your situation. This is your chance to explain this; To say that YOU have issues that are not being addressed.

For example: If you feel you do not have timely access to help (which may be contact lenses you can wear all day comfortably or vision aids to assist you if the only lenses you can wear give you limited wear time), then you need to say this. If you have ever grumbled that no-one listens to you, then this is an opportunity to have your say.

You can comment directly on the UK Vision Strategy website or if you prefer to comment here, I will gather your comments up and use in my own response.

I have been working to gain recognition for people who do not fall neatly into the "blind and partially sighted" for some years now but the main stumbling block is that your issues are not recognised. "I have never come across these problems" is what I am told time after time. It is difficult to fight for what is deemed to be a non existent issue!

Therefore please take the time to have your say. The consultation ends on 16th December.

Lynn

OK
I don’t think that this answers the questions on the survey but my thoughts are:

1 Acknowledgement that there is such a condition as ‘part time visual impairment’ or ‘variable vision’. I think that we’ve all been asked ‘Why don’t you just wear glasses?’ when we are having contact lenses problems. If only it was that simple!

2 For optometrists to suggest that back up glasses might give some vision. I can’t be the only one who for over 15 years had thought that I would get no usable vision from glasses. The vision with glasses is variable from day to day and whether I’m wearing them before or after my contact lenses. I appreciate that not everyone may get useful vision with glasses; but if the unaided eye can only see a couple of inches to be able to recognise someone across the room is a big improvement.

3 R&D funding for the development of specialist contact lenses that can be worn all day without risk to corneal health. Which could result in an overall cost saving by reducing the probability for the need for a graft.

Lia

Points taken on board Lia - at least the ones relating to spectacle wear.

R&D funding it a bit more complicated as this tends to be a manufacturing domain. What research you could ask for is investigation into how many people are affected by variable vision etc and how much current registration numbers reflect the true level of vision impairment in the UK.

Lynn

Lynn,

Yes, I did think that my third point was probably 'out of scope' for this particular initiative.

However with regard to spectacle point I'd like to add one further point. I've just read your post on another thread about the time taken to adjust to a new prescription. I think that it would be useful if it was pointed out to patients that it could take some considerable time to adjust to a spectacle prescription if it was high powered and the patient hadn't worn glasses for years. The patient might hear 'it will take time to adjust' but will hear 'days' rather than the 'weeks' it might actually take before the brain can optimise the vision from back up glasses.

Lia

Agreed...

Interestingly, I think this issue comes down to the fact that most people are seen in hospital Contact Lens Departments. In hospitals, eye care is very much divided up into specialities and spectacle refractions are dealt with by another department entirely.

Keratoconus needs to be dealt with like any other "Vision Impairment" condition where all types of visual aids are considered. For some reason I can't quite fathom, the fact that keratoconics can't get "perfect" vision with spectacles is seen as a reason for not giving them at all, in many cases. As you quite rightly say, something that can give you some functional vision is better than nothing.

A lot of this is down to education and the truth is that there is not much time in a University curriculum to go into great detail about keratoconus.

Lynn

Hello Lynn , i filled the online form in as i feel that this disease can be very disaballing sometimes in my case anyway , never can wear glasses , advanced in both eyes , can be very frustrating and nobody really understands apart from people on here , everybody in the real world doesnt know anything about Keratoconus , i think there should be more education on this disease .

Thanks Mikkey!

So good of you to do this. I agree totally there should be more education You just added to this process so again many thanks!

Lynn

No problem Lynn , i wish more people were like you out there , people with this problem dont want sympathy they want understanding in my view . im sick to death of people asking me why i wear sunglasses all the time , and i cant be bothered to tell them what the problem is , people think your normal because you seem to manage , but on the other hand they dont know how difficult it can be without a contact lens , only the people very close to me understand how serious KC can be from time to time , like you say its like being blind part time , i could not put that better myself , Thanks Lynn for all your hard work .