New Sight Registration possibility for KC: Input needed
Posted: Wed 05 May 2010 8:46 pm
I have moved this post from its previous position on another thread and edited it slightly. This is a request for feedback and information: if you feel you have any input at all into this issue, I would really appreciate your contributions.
On April 29th 2010, the major Optical Bodies officially joined in forming an Optical Confederation (see press release) which aims to speak with a united voice for patients, professionals and the optical sector.Within this Confederation, I am involved with Low Vision issues and am now officially looking at this situation of sight registration for KC and IC. I am going to prepare a report on this issue and my first priority is listening to YOUR input.
Here are some suggestions and ideas that have been mooted:
A new registration category called, perhaps, "Variable Sight Registration" which would apply to those who rely on contact lenses in order to function visually. This could be entirely voluntary and would be more for recognition purposes. i.e. rather than having to explain to educators, employers, family friends etc about your visual issues, the registration would make this official. It could also automatically open doors to access to visual aids and so on.
Another registration category called "Temporary Sight Impairment" which could relate to period of time when one is recovering from grafts or other KC treatments.
Louise's excellent idea of a "badge" to show when you are not wearing your lenses is also something that I have been looking at (she posted several times on here about it).
Background:
Registration has many functions, not least the fact that it highlights the quality of life issues for many patient groups and brings recognition that certain eye conditions cause loss of visual function. Historically, keratoconus (KC) and other related irregular cornea (IC) conditions have always been "left out" of the registration process because of the small number of patients involved.
The official stand has been that most KC and IC can be managed with contact lenses, the majority have the condition worse in one eye than the other, so nearly always have one reliable eye and the small number of patients that suffer sight loss in both eyes simultaneously can be managed on a case by case basis without the need for a "special" category. However, treatment and management of people with KC and IC is changing fast at the moment and I feel the time has come to change the registration criteria.
Lets first look at definitions. Only 5 % of people registered "blind" are actually TOTALLY blind i.e. absolutely no perception of light. Accordingly, this definition was changed to "severely sight impaired" a while back. Similarly, "partially sighted" is now "sight impaired". This is not some PC rewording by bureaucrats, it is a real attempt to more correctly describe what sight loss people suffer.
Here is the official criteria for blindess:
Generally, to be registered as severely sight impaired (blind), your sight has to fall into one of the following categories, while wearing any glasses or contact lenses that you may need:
visual acuity of less than 3/60 with a full visual field
visual acuity between 3/60 and 6/60 with a severe reduction of field of vision, such as tunnel vision
visual acuity of 6/60 or above but with a very reduced field of vision, especially if a lot of sight is missing in the lower part of the field.
As you can see, this does NOT require you to have no vision at all. It also says you have to be wearing the contact lenses "you may need". It does NOT take into account the fact you may only be able to wear these lenses for a limited time in any given day, which is where this completely falls down.
Official "partially sighted" registration
To be registered as sight impaired (partially sighted) your sight has to fall into one of the following categories, while wearing any glasses or contact lenses that you may need:
visual acuity of 3/60 to 6/60 with a full field of vision
visual acuity of up to 6/24 with a moderate reduction of field of vision or with a central part of vision that is cloudy or blurry
visual acuity of up to 6/18 if a large part of your field of vision, for example a whole half of your vision, is missing or a lot of your peripheral vision is missing.
As you can see, a lot of this is based on eye conditions such as glaucoma which cause sections of your field of view to disappear completely. None of it addresses contact lens wear for KC nor does it address the temporary changes in vision that people undergoing INTACs/CXL/ grafts suffer.
What I would like to see is a lively debate all around this subject so as to get YOUR input as to what you think should be done. This will also open up the subject that Louise and Andrew have highlighted here: the need for PROPER, considered, structured advice on the condition based on modern technologies. In my many discussions with professionals about this whole subject, what strikes me is that many assumptions are made about what "patients" want or think. In the end, none of us professionals really "know" - but YOU do.
This is an incredible opportunity to improve quality of life for everyone with KC and IC. To make change happen, it has to be shown there is a need for change and therefore your views are essential to that process. Please, let me know your thoughts either by posts to this thread or pm's or emails. I would also really appreciate professionals' views as well, as whatever is discussed has to relate to the practicalities of how it will be administered.
Lynn White
PS
If those who have already posted on the other thread could copy their posts to this location, then this would keep this thread intact and separate to the other one.
On April 29th 2010, the major Optical Bodies officially joined in forming an Optical Confederation (see press release) which aims to speak with a united voice for patients, professionals and the optical sector.Within this Confederation, I am involved with Low Vision issues and am now officially looking at this situation of sight registration for KC and IC. I am going to prepare a report on this issue and my first priority is listening to YOUR input.
Here are some suggestions and ideas that have been mooted:
A new registration category called, perhaps, "Variable Sight Registration" which would apply to those who rely on contact lenses in order to function visually. This could be entirely voluntary and would be more for recognition purposes. i.e. rather than having to explain to educators, employers, family friends etc about your visual issues, the registration would make this official. It could also automatically open doors to access to visual aids and so on.
Another registration category called "Temporary Sight Impairment" which could relate to period of time when one is recovering from grafts or other KC treatments.
Louise's excellent idea of a "badge" to show when you are not wearing your lenses is also something that I have been looking at (she posted several times on here about it).
Background:
Registration has many functions, not least the fact that it highlights the quality of life issues for many patient groups and brings recognition that certain eye conditions cause loss of visual function. Historically, keratoconus (KC) and other related irregular cornea (IC) conditions have always been "left out" of the registration process because of the small number of patients involved.
The official stand has been that most KC and IC can be managed with contact lenses, the majority have the condition worse in one eye than the other, so nearly always have one reliable eye and the small number of patients that suffer sight loss in both eyes simultaneously can be managed on a case by case basis without the need for a "special" category. However, treatment and management of people with KC and IC is changing fast at the moment and I feel the time has come to change the registration criteria.
Lets first look at definitions. Only 5 % of people registered "blind" are actually TOTALLY blind i.e. absolutely no perception of light. Accordingly, this definition was changed to "severely sight impaired" a while back. Similarly, "partially sighted" is now "sight impaired". This is not some PC rewording by bureaucrats, it is a real attempt to more correctly describe what sight loss people suffer.
Here is the official criteria for blindess:
Generally, to be registered as severely sight impaired (blind), your sight has to fall into one of the following categories, while wearing any glasses or contact lenses that you may need:
visual acuity of less than 3/60 with a full visual field
visual acuity between 3/60 and 6/60 with a severe reduction of field of vision, such as tunnel vision
visual acuity of 6/60 or above but with a very reduced field of vision, especially if a lot of sight is missing in the lower part of the field.
As you can see, this does NOT require you to have no vision at all. It also says you have to be wearing the contact lenses "you may need". It does NOT take into account the fact you may only be able to wear these lenses for a limited time in any given day, which is where this completely falls down.
Official "partially sighted" registration
To be registered as sight impaired (partially sighted) your sight has to fall into one of the following categories, while wearing any glasses or contact lenses that you may need:
visual acuity of 3/60 to 6/60 with a full field of vision
visual acuity of up to 6/24 with a moderate reduction of field of vision or with a central part of vision that is cloudy or blurry
visual acuity of up to 6/18 if a large part of your field of vision, for example a whole half of your vision, is missing or a lot of your peripheral vision is missing.
As you can see, a lot of this is based on eye conditions such as glaucoma which cause sections of your field of view to disappear completely. None of it addresses contact lens wear for KC nor does it address the temporary changes in vision that people undergoing INTACs/CXL/ grafts suffer.
What I would like to see is a lively debate all around this subject so as to get YOUR input as to what you think should be done. This will also open up the subject that Louise and Andrew have highlighted here: the need for PROPER, considered, structured advice on the condition based on modern technologies. In my many discussions with professionals about this whole subject, what strikes me is that many assumptions are made about what "patients" want or think. In the end, none of us professionals really "know" - but YOU do.
This is an incredible opportunity to improve quality of life for everyone with KC and IC. To make change happen, it has to be shown there is a need for change and therefore your views are essential to that process. Please, let me know your thoughts either by posts to this thread or pm's or emails. I would also really appreciate professionals' views as well, as whatever is discussed has to relate to the practicalities of how it will be administered.
Lynn White
PS
If those who have already posted on the other thread could copy their posts to this location, then this would keep this thread intact and separate to the other one.