Lobbying vs self-help

[jayuk]

Sweet

I like the summary but one thing Id add is that we need collective buy in from the opticians .....as to be honest...they are the people who have the potential to help us the most!...but its a catch 22......how many opticians do you know that have the experience and ability to fit KC patients? Not many....and why would this be?....a) cuz its not cost effective or b) because they dont have exposure to KC patients.

Its not an easy task...but with a good strategy and plan; goal setting over the coming 12-24-36 months; the whole group can work on addresing the issues and generating awareness.

I think sending out informaton to ALL opticians may not be the best way.....the reason for this is that many wont have the time of day for it....as KC patients are not revenue generating candidates

Getting optometrists buy-in and working on a regionalised plan of attack; theres no reason why we shouldnt be able to have a minimum of 2 optometrists who could provide a service to KC patients.......

The above was just an example of how to approach the issue, I am sure there can be many more we could address in this manner

a) online discount system for ordering Solutions?....So a tie up with somelike like Post Optics etc?....again another example

b) mail shot to independent Optometrists to create awareness

etc etc...the list can be endless if this is approached in the correct manner

J

[Louise Pembroke]

You've got good ideas Jay, this is the kind of thing I want to know from everyone.
What would your action plan be, what specific projects would you like to work on?
Maybe there could be one sub-group which looked purely at optomotrists for example, another for online discount buying.
I remember someone saying she would be happy to work with me on my badge idea [I'd be prepared to be in a sub-group for that].
But any idea or plan of action needs some consensus and KC Group backing in order for people to start working at it. That's why I suggested a survey, as a means to an end.

[Sweet]

Good ideas!

Lynn very nicely added her opinion when i stated that we need to promote ourselves in saying that an article in an optometrists magazine would be more beneficial than just placing an advert in the back which i wanted to do.

An article could be tested and CET points gained by optometrists which are needed to keep registration. This would ensure that it is read and hopefully give KC a better chance in getting more professionals interested in gaining experience with us!!

It is difficult to find optometrists who fit KC patients but maybe if it was moved into the community and more training given we would have less problems.

Sweet X x X

[Louise Pembroke]

Ok, then an 'optometry group' could look specifically at these issues, and even better with input from members who are optoms. Much of this work could be done by email between people and/or online [sub-group boards??] to cut down on face to face meetings

[John Smith]

We've already got a list of optoms recommended by members on the members-only area; this will very soon be joined by a list of optoms with the equipment and desire to deal with us keratoconics.

I hope that this second list will indeed become larger than our existing one, and may be more useful because of this.

[Anne B]

Louise,
i think it was me that said that i would be willing to help with a badge idea, but so did cherishu2.
what interest me about that is we are both Mums at home and i think it is fair to say we face lots of new situations and people on a daily basis For example my 3 children all go to different schools at the moment so thats 3 different classes of mums that may think i ignore them! i also take my youngest to toddlers ,and a singing group where it full of parents and children that i don't always recognise, parents evening , school concerts , getting on the bus , asking for things in shops, filling out slips in the bank a badge or something similar would really help in the same way people who work in offices etc have large screen moniters and large keypads etc to help them with there work.

So yes i think the badge idea is great, and i would be willing to help.

Anne

[Louise Pembroke]

Thanks Anne, well may I make a suggestion?

If the committee were agreeable could me, Anne and anyone else who wants to work on this do so?

It would need KC Group backing/approval and headed paper [for making approaches/liaising with folk like the RNIB].

I would be happy to PM Anne and anyone else interested my email/phone number and make calls/send emails as required.

Or, we could wait for a survey of members and see whether it's listed as something members would like to be taken foward.

Can the committee please guide me and Anne as to what you would prefer us to do, thanks.

[Sweet]

Louise and Anne

Sounds like a good idea to me! Was just wondering, isn't there a logo for partially sighted people? One with an eye and a line through it or something like that??? Not sure where i have seen that but it could be something which could be asked to help us. It is a promotion for sight problems.

Sweet X x X

[Louise Pembroke]

Yes Sweet, there is a badge you can obtain from the council sight impaired team but here are the problems;

It's 1", it's too small, it needs to be 2" to be visible to others

It has the eye with lines across it, black on paleish background, it is so easy to miss, just putting it down on my PC table I couldn't it see it, it just blended in with the grey.

A white stick is so visible because it's brilliant white, if it were brown/black we would miss it.

I think these badges need to be 2" with a bright luminous background which anyone could spot, just like cyclists have bright yellow stripes on their clothing sometimes. A bright colour would make others look and then see the reduced sight symbol, and perhaps it could also say underneath it 'Reduced Vision' [for the stupid!!]

The other problem is, it was very hard to get this out of the team, they didn't have a clue about KC, about how we can be 'part-time partially sighted' without our lenses. Their response was 'get your lenses fitted better'.
They also don't get how the condition itself can change visual acuity, or how just sunlight can be blinding. They will give it out but they don't understand the problems at all and the badge is c**p. Likewise I'm not sure the RNIB understand that people [especially mums] don't want to hold a symbol stick during these reduced visions periods, and just want to stick a badge on.

So we could suggest a better design and explain how KC folk would use it and why

[Sweet]

Ok i see your point! I have now found out where i saw the sign and it was the RNIB which is a good start as most people can relate to this image. Maybe we need to ask them? Maybe it could be the same logo so everyone would understand but in a bright colour??!!!

I would wear one if it was maybe bright yellow and can be seen! Am not sure who you are thinking of lobbying for it?? Maybe the RNIB would indeed be a good place to start???

Sweet X x X