Lobbying vs self-help

[Anne Klepacz]

Thanks Louise for starting this thread - Ken's talk at the conference was inspirational and did raise important issues. Just to give a bit of background on the members' survey we did in 2003 (just before the conference that year). We had 600 members then (we now have over 1100) and just over half replied. The last question we asked was 'What are the 3 issues which most concern you with regard to KC?' The 3 topics mentioned by the majority then were:-
1. Worries about the future - will my KC get worse and the implications of that.
2. Issues of cost and provision especially cost of solutions and the variability of access to the full range of contact lenses around the country.
3. Lack of knowledge and understanding of KC
Waiting times for lenses came further down the list for people then - maybe it would be different now. The main results of the survey were presented at the 2003 conference and are written up in the 2003 conference booklet - I still have copies of that if anyone doesn't have one and would like one.
As Gareth says, we did discuss another survey at our last committee meeting, though my priority at the moment is planning next year's conference (yes it's time for another one already!) so it's a question of whether we can do everything we'd like to.
And while you may be right Jay that we may not get anywhere on the solutions issue (which has been taken up by one of the committee members) the lobbying done so far has already had the effect of raising the profile of KC among various health and other bodies, which can only be a good thing!
But do keep up the debate!
Anne

[Louise Pembroke]

Thanks Anne.

I guess whatever peoples priorities are and whether campaigning on solutions is a good use of time of not is neither here nor there to me.
Yes it's good to regularly assess peoples priorities but my main point here is logistical.
I know from my own field that running a forum, producing a newsletter, organising conferences is a hell of a lot of hard work.
This is even harder without an office and more human and financial resources.
Funding apps are not something I am good at, I hate doing them but I'm wondering whether there might be members out there who might be prepared to try for some bigger money [lottery]?
However, in order to try for bigger money there needs to be a work/campaign plan and a new survey would help produce that.
Even without going for more funding, it's still hard for any small committee not matter hard working and dedicated [which you are!!] to do both the ongoing work and campaigning. To do both effectively is hard work.
Some people might be interested in joining a sub-committee for a finite period of time to work on one specific campaign issue for example. Again, this is something which could be asked in a survey.
So it's not only actual issues I am wanting to see debated/assessed but how work is carried foward and how to get more human resources involved.

This is a good forum, a good group and an excellent committee, I only want to see the work expanded without people keeling over under the strain! [I've seen this happen in mental health service users groups].

[jayuk]

Anne

I appreciate what you say..but I just kinda feel that the Committe could do more to push things...its just things seem to take ages....to do basic things....

I know this may sound harsh and Ill open myself up to critisism saying this (which I dont care!)

Whilst the Board is here on the Web its the posters and there experiences and stories etc that make the place. But above that, there is what we can do collectively as a group that matter.....and thats where I think things have gone at a snails pace.....

Now, I know people have full time jobs, and I know that those involved in the Committee have other commitments etc.....but surely that shouldnt stop things?....and if it does then that needs evaluaton surely...

Im in no way taking anything away from whats been done today with regards to the Forum et al and those members that have provided this platform....what I am saying is that there extensive room for improvement.....and push and drive to kinda pick up the pace......

Jay

[GarethB]

Jayuk,

I strongly suggest you or anybody else for that matter to attend a local group meeting, attend the AGM and come to a confrence you will find those that post here is a relativly small number from my experience. The ineternet based KC people are from a major part of what makes the support group.

Of the registerd people to the site I will be honest and say I do not know what proportion are also on the mailing list.

What I can say is that we have over 1200 registerd to the forum and only 1% are regular posters. This is why I am caferul to say to many who read horror stories that it is quite possible we are not representative of the whole community all of the time.

My understanding is that when the board was upgraded you had to re-register so I have no idea how many just visit and did not bother re-registering after the upgrade.

(Edited; sounded as if I was having a pop at Jay which was not my intention )

[Andrew MacLean]

ther are other ways. The form site could put one of those cookies into the computer of the person filling in the form.
some problems here: more than one user of the same compouter may want to fill in the form, or the same user could fill it in a second time using a different computer.

but then, a paper questionaire is also open ot abuse.

Andrew

[Louise Pembroke]

Andrew, I guess there are no fail safe methods of ensuring people do not fill out an online or postal form more than once. I'm not technically minded but there must be some online protections, as for postal then ask for peoples names and addresses on the forms. I am wondering why there is so much concern about a survey being 'abused' given a survey has been carried out before, and if the concerns about 'abuse' are that great then noone would ever survey/consult at all.

I feel I might have offended some people and that certainly was not my intention. It wasn't started as a criticism that needs defending.
I intended this thread to be a constructive exchange of thinking and ideas.
With very best wishes

[Andrew MacLean]

Actually, Louise, I think we are agreed.

Professional pollsters have ways of allowing for roigue or abberant responses. there is no "fool proof" way of conducting a survey, so the 'best protection' should be enough.

for my part, I'd have thought that the magic cookie idea is as good as any.

One entry per computer.

Andrew

[GarethB]

It is not so much a question of a questionaire being open to abuse but doing our best for the community in do what we can to get the most accurate reflection of the KC xomminuty as it stands now.

As a part of that there is a risk of people on the forum being over eager and doing an online survey and then just to be sure doing the postal one that comes with a news letter. We have only ever done a postal survey and we know what works and what does not. A web based system is a different kettle of fish hence playing devils advocate. That way we get all sorts of suggestions come forward and any decision made will hopefully be a informed as possible.

[Sweet]

(((Friends)))

Hey all!!! What a lot of very useful opinions which are very much needed!!

Yes the solutions issue was raised at the last committee meeting and it was sadly myself who strongly stated that it was a difficult and time consuming exercise which would probably never get the result we would like. I seriously do agree that it is a genuine and worthwhile issue, just that the NHS is far from being able to fund it! As was mentioned at the meeting with it being the PCT who would give financial aid, it needs to be brought up that it is obviously the NHS where this money is coming from. Patients have been publicised as being unable to get cancer drugs so being able to get solutions on prescription would be extremely difficult.

The promotion that this issue has raised though from this has been excellent and definately something which we need! I would be more happy though for it to be put on a sub committee where other suggestions could be worked on as well.

As most know i am very interested in the whole community idea of moving KC out of the hospitals and training more optoms to look after us. The waiting lists would be shorter in the long term and we would be able to get more information and help when needed. I honestly feel that we only need to go to a hospital for an inital diagnosis, yearly follow up checks and issues about surgery. Contact lens fitting and check ups does not really need a hospital appointment! This is what i would like the committee to be able to work on in the future. As with cataract patients getting quicker operations, we all need to get together and highlight the problems we have to get some results.

The views brought up from the last surveys were interesting but sadly what we would expect from any group! Money always comes in there somewhere, so reading that most wanted cheaper treatment is no real surprise. It also doesn't surprise me that waiting times was not really mentioned! As patients we complain about the long wait for appointments but do nothing about it, we just seem to expect it! But in all honesty it doesn't need to be like that if the system worked better. If we give people the idea of lesser waiting times i am sure that a lot more would be able to give some ideas as to how we could go about this.

I would like to see the commmittee and group overall aiming for more promotion on KC in 2007. If we don't tell those in authority who can help us who we are, we can't expect to get some support! It really surprised me how few medical staff actually knew what KC was and the whole issue on lenses and surgery.

It would be good for information on our group to be sent to EVERY contact lens clinic in the UK. This way we would be able to get more members, promote the group in general making it more of a recognised charity and give optoms information to give to patients. Hopefully more clinics would buy booklets to educate people and bring in more money for the group! Hehe there is some logic in there somewhere!!!

Here's to 2007 where i am hoping for an even bigger community with a lot more publicity and help for all KC people!

Thanks for reading!! Sweet X x X

[Louise Pembroke]

Info to all clinics is a good idea Sweet, and I'm glad you like the idea of sub-committees, it would help spread the load and some folk might be more into involvement for finite periods.
Issues and possible involvement could both be ascertained by asking people