UK Keratoconus Self-Help and Support Association

Carrying on from the a previous topic, here's a quick poll to enable us to gauge interest.

If you were entitled to a form of variable sight registration what benefits would you like to receive?

I am not jumping up and down here, for a tiny group I won't hold my breath

I do not get DLA for MS as I do not have these problems full time. Even though I could hardly walk or get myself dressed for two months due to a relapse, it didn't count. It was not the DLA I wanted, all I was after was a blue badge so that my husband could drive me to hospital appointments and I wouldn't have to walk so far to the car.

MS is a condition affecting thousands of people, KC is a rather insignificant one to the politicians, so I don't really know where we go from here. If we get a variable one here, can you please push for MS as well.

Claire,

If you refer back to my original post, http://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=5697&start=0 you will see that this is not being put forward by any patient group. Rather the reverse, this is something being investigated by the Optical Confederation, which is a coalition of 5 Optical bodies, looking to use their combined resources to provide a united view on optometric and dispensing services in the UK. In other words, we made coalition fashionable before the Govnts did!

As the AOP member of the Joint Low Vision Committee, (which is the Low Vision arm of the Optical Confederation) I am gathering evidence from patient groups that cover other conditions as well. So far, the Nystagmus Network and the Uveitis Information Group have shown a lot of interest, as well as the KC Group and the ICF.

I do actually mention MS in my post, plus we have to consider conditions such as stroke, diabetes and macular degeneration as well. So far, it is only the vision aspects of these conditions being considered as it is vision registration we are talking about. However, if we once establish the principle of help/aid for a variable condition, this could then well be extended to physical conditions as well. In fact, since the Govnt is keen to review invalidity benefits, I am sure the fact that people may only require help when they need it rather than all or nothing would be seen as a much more sensible and, in fact, cost effective approach to situations such as yours.

So to answer your question, yes MS is already high on my list of conditions I want to involve in this registration. I have asked for information from patient groups because if we are going to do this, we NEED input from as many people as possible.

In view of this confusion over who is putting this idea forward, could I suggest that my original post be made a sticky as well, otherwise the reason for the poll itself will keep getting lost down the pages?

Lynn

RE COUNCELLING - the RNIB offer 6-8 sessions of phone based councelling which is free to all, and is awesome

RE DLA - there is nothing preventing us from applying, as from this time next year we as VIP's will be elegable for high rate mobility

RE PERSONAL CARE - that is what Direct Payments are for

RE RECOGNITION - sadly that will take more empwerment, and activism but is ACHIEVEABLE

sorry had a word document with this saved i did a few days abck but cant seem to locate it on my puter

Lea x

Thanks for this Lea

The concept of the new Registration is help people who actually are functioning normally with contact lenses and suddenly find themselves running into trouble due to changes in their condition. They will not be on any register, as they do not qualify as they have good corrected vision and may indeed only require help for a short period of time, say when they are awaiting a replacement contact lens or recovering after CXL, INTACs or grafting. It is currently very difficult to get assistance with a temporary sight loss. DVLA and Social Services are geared towards permanent, unchanging sight loss, not fluctuating vision.

Many other patient groups are reporting similar issues. As treatments improve, the possibility of regaining lost sight becomes more likely and the current registration situation is not geared up for this. For them, getting OFF registers and disability is difficult.

What is needed is a flexible registration system, possibly involving Opticians and Optometrists, which will make access much easier than the current hospital based system. As KC sufferers who CAN see with contact lenses are not at the moment considered AT ALL for any kind of registration, as they have "vision potential", they do not have access to social services, counselling etc as they are not considered disabled and would have to rely on letters of explanation from professionals.

Having a Variable Sight Registration would mean that whenever a problem arises, there is already recognition in place of the needs of the person.

Lynn

This string has been viewed over 170 times, but only 48 people have responded to the questions. It may be said that these are not the questions that I'd have asked if I had wanted to gauge opinion on variable registration, but I know that we were mirroring a poll launched by another group without consulting the KC group.

I wonder whether the fact that around 130 of the 170 hits have not found this a helpful vehicle means that we ought to de-sticky the poll and let it drift off into oblivion?

Andrew

Well, 48 replies is more than we usually get when we ask for feedback! We will be asking for feedback on the idea of Variable Registration in our next newsletter which goes out to all our mailing list members so it won't be just those people who look at the forum who will get a chance to comment.
Anne

Andrew is wondering about the disparity between numbers viewing the thread and numbers responding on the poll. However, I think many do keep checking to see how the poll is going (I know I do) so it the numbers of visitors to the thread may not represent new people at all.

As for the questions: these were based originally on what the relevant committees wanted to ask patient groups. They well not be optimal, but they are certainly a start and in fact the Vision Registration thread itself is giving us all a lot of very useful feedback.

I would just like to emphasise that this subject is now being taken very seriously by the various Optical Bodies. Also, many other patient groups who suffer from quite different conditions do have exactly the same issues as KCers as regards fluctuating vision. there is now quite a determination to work together to promote a better vision registration policy. So, this is not just an academic exercise, information gathered from this poll and contributions to the Vision registration thread will all be used to formulate changes to the registration process in the UK.

Registration at the moment suggests an "end of the line" situation. This is NOT what it should be for. Registration should be about getting recognition for your condition (so you don't have to explain yourself endlessly to family and friends, educators and employers) and also about getting appropriate help when you cannot wear contact lenses, such as vision aids. Currently, people with KC are not recognised as needing this kind of help.

This is a HUGE opportunity to change the way KC is perceived and treated in the UK. It is a genuine shot at changing the status quo.

Lynn

Anne had raised that possibility with me in a pm. I had always understood that the 'magic cookies' the forum lodges in our computers when we visit pages meant that 'revisiting' members were not recounted. John will know for sure.

Andrew

as far as recognition for KC it's something all of us will need to shout for together. as for support i don't know if it's just me but since being diagnosed and sent a letter i've been told nothing else and all i've been able to find out is from the internet and the short conversation i had with my optician before they gave me contacts. Actually knoiwing who to speak to would be a brilliant help i mean i only found this forum a couple of days ago