Is there any hope of registration in the near future?

[jojo19732009]

After my visit from access to work (RNIB) I was asked if I considered registering myself as partially sighted? I did say that KC I thought that this particular disease was not in that box. My KC is a big pain in the buttocks as my lens tollerance is rubbish and I only manage to wear lenses for work alone and spend the rest of the time in next to useless glasses with sore fluctuating vision with the added insult of photophobia that KC throws in for good measure. So all in all KCers live life with little vision without the help needed by registration. Is there any point that this changes??????? does anyone know or has anyone managed this??????
I know many are fighting for this but dont know where to look at how or if this is progressing.
Thanks jojo

[Lynn White]

Hi JoJo

I have been fighting for this for a long time but it really doesn't look good I am afraid. For one thing, it is really hard even for those who completely qualify for current registration to get registered. Ophthalmologists have to register patients and they often do not actually do it.

Secondly, I am often asked (by other professionals and professional bodies) - what is the point of registering people? You don't need to be registered to get access to work or to access low vision services. My answer always is that unless you have some sort of "label" it is difficult to convince people you need help. I hate to say it, but it is hard to get even professionals in the field of Low Vision to fully understand KC issues.

Thirdly, in most of the arenas that I have aired this issue, I am told there is no issue. Practitioners who see people with KC day in and day out tell me that THEIR patients certainly do not say they have a problem.

The long and short of the issue is that, after years of trying to get this moved forward, largely on my own, the biggest stumbling block is that people with KC simply do not air their issues enough. If no-one perceives there is a problem, no-one will work to find a solution, especially in these cash short times.

I am willing to give this another shot but I do need support from you guys. What is needed is an alternative to registration (as there is no way in the current climate a change in legislation will be brought about.) This can take many forms and I have quite a few ideas but if I am to try and move this forward, I really do need the support of people with KC By this, I do not mean just moral support, I mean practical, manpower type of support from both professionals and people with eye conditions.

Sorry to sound a bit negative but I have spent an awful lot of time and effort on this issue and there is only so much one person can do!

Lynn

[jojo19732009]

OK Lynn so good and bad news then......
I for one would love to help and would even talk how it affects me. I have more time with poor vision than I do with corrected vision due to intollerance. This is increased by being chronic Asthmatic. KC plays a large role in my families life who have to constantly be aware of good and bad sight. But with Access to work coming to speak to myself at work he did show me how being registered would be greatly benificial.
jojo

[jojo19732009]

OK Lynn so good and bad news then......
I for one would love to help and would even talk how it affects me. I have more time with poor vision than I do with corrected vision due to intollerance. This is increased by being chronic Asthmatic. KC plays a large role in my families life who have to constantly be aware of good and bad sight. But with Access to work coming to speak to myself at work he did show me how being registered would be greatly benificial.
jojo

[Lynn White]

It may well be that in your particular case you are eligible for partially sighted registration. However, it would still need an ophthalmologist to register you.

Additionally, there is no particular condition that "qualifies" for registration - more the type and level of vision loss.

Lynn

[harker]

Hi Lynn,

I'm - for now at least - better off than a lot of people here, in that I can still get workable, albeit ghosted, vision from glasses. As such, I don't feel as strongly that the 'part-time partially sighted' label applies to me.

However, as someone whose job - I'm a magazine journalist covering videogames and tech - requires a fair amount of screen work relating to a very visual medium, I'm frequently reminded of my eyes' limits, and I would be very happy to help out if I can.

[chris1972as]

Hi All, well i do manage to battle on and where my contact lenses for anything up to 16hrs a day, though it is a sink or swim scenario, if i dont wear them i dont see, as i can not see any of the snellen chart with or without glasses and with my contacts i manage to get 6/9 to 6/12 round about there which isn't to bad i think. The problem being to me with this condition is we are typical people we just battle on and try our best not to complain too much, we do have a long term condition in which affects our lives in some ways and like many the darkness is difficult with ghosting vision so i dont get to see any mid week football matches . Registration isn't too much of a worry for me but it would be nice to have the condition recognised as being more serious than I am under the impression from the medical proffession, as i dont require sympathy but empathy and the more it is recognised and talked about the more people will understand how tough the condition can be, not just on those that suffer but those that support as well, would be very pleasing if there would be a documentary on the condition from the BBC for people to see, well we can hope

[Lynn White]

HI All

Just to clarify further on this situation....

One reason registration is not a good idea is that people do not see themselves as disabled - even when they are. Another is that it requires legislation which is always a battle.

What I am looking at now is the development of "Low Vision Pathways". These are High Street type options to provide easy access to Low Vision Aids. Currently, they are designed with elderly people in mind who have static conditions such as glaucoma and macular degeneration. Patients go to a registered Low Vision Practitioner and have an assessment. A report is sent to the GP and Low Vision Aids can be dispensed. For this, you do not need to be registered - you just need to have a visual problem.

The important point is that the report can be developed into a "Statement of Visual Impairment" which can detail exactly what your particular issues are. In JoJo's case, for example, her issue is that she cannot wear lenses continually during shifts without discomfort or pain and also cannot see clearly in low illumination on night shifts. This could be outlined in a report which goes to the GP and then which can be forwarded on, if needed, to other agencies.

This has the advantage of being very specific to each person rather than trying for a blanket registration. The main issue about KC is that with lenses you are fine, without you are partially sighted. This is so NOT black and white, legislation cannot get its head round it!

Lynn