Lobbying vs self-help

[Louise Pembroke]

I watched Ken's presentation on the DVD and it really inspired me. He posed good questions for us, lenses are the mainstay of sight maintenance and faster access is indeed the priority.

Then there's the cost of lenses and solutions. Then there are other considerations around work & education and other ideas like my reduced sight badge.

As a mental health activist with nearly 20 years experience as a campaigner I do feel it is very hard to combine activism and self-help without more substantial financial and human resources.
There are few 'survivor-led' groups which manage to do both on little or moderate funding, they typically concentrate on activism or support.

I think we need both, but achieving both will need some consideration.
Some groups have a 'support' side and a separate 'campaign' branch. Some groups have sub-committees which concentrate on specific topics. I'm not offering answers here, just thinking out loud and wondering how other members feel?

I have nothing but respect for what the committee does, and I know how hard it is from first hand experience in my field.

[GarethB]

Louise,

To a point I think we are now begining to do both.

The web site and the local groups with the group contacts do a great job at the support side as do the rest of the commitee with the news letter.

We are campaigning for lens solutions and the commitee has been putting a plan together so that the campaign is as constructive as possible.

The rest of the action you mention has been raised before and we need suggestions so that we can prioritise and plan each one so that the campaigns are as constructive as possible.

[jayuk]

Gareth

Without faffing about and getting to the point; I think solutions et al need to be put on a back burner; or a lesser priority.....theres more important things to think about now then solutions as the cost of them are decreasing year on year; and lets be VERY honest here! If theres a post code lottery on Cancer Drugs does ANYONE REALLY beleive that we are going to get any success with getting Solutions free?..

Cancer : Potentially Life Threatening and ackknowledged,

and KC...no awareness even at the fundamental level!...

I DONT THINK SO! (Happy to be proved wrong though!!)

The value adds here are, in my opinion

* Getting seen to by opticians \ eye units faster

* better education for personnel in eye units with regards to the impact on people with KC and how the fact that without Lenses many cant function, ie work, etc

* better knowledge transfer to patients on the condition; as thigns still havent changed when you get seen; even in Moorefields. Unless you ask question, you actually never get a decent enough answer

* Opticians who can treat KC patients and not just see them as a disadvantage due to the time that needs to be spent with them

* Information relating to treatment and options; ie Management Techniques.

Stuff like this is what needs to be done. Address the fundamentals then worry about the periphery...

[GarethB]

Jay,

I am not the one to answer this fully, but my understanding was this came from the request of several members.

Sweet raised many of the things you have, like I said we need outside input so we get an idea what is important to the KC community as a whole.

At the confrence I heard more people talking about solutions than getting seen quickly.

Playing devils advocat, but the question can be asked why is Moorfields having such long wait times? (Purely an example). for me wait times is not an issue.

The time consuming action is collating the information so that we fully understand which are important.

What is important to me for example will be different to the important issues to you which differ again from someone else.

It is very hard as we need to deal with many bodies, not just the Health minister or local health authorities. We have found there are many organisations inbetween that have a say. this equally takes time to unravel the process so we know where to best place are arguments.

[jayuk]

Gareth

Totally agree..which is why we need to take a step back and add realism. Whilst Solutions may have been referred to, I just dont think its something that will get the results that an issue deserves.....due to the example Cancer scenario given.

I dont agree that what you, me or anyone else thinks are important would be that different. The reason why I say this, is that a mere look on this board and past posts from eager newbies clearly shows that we all share the same concerns and have asked the same questions....in one shapre or another.....what MAY differ is the time it takes for someone to start experiencing the issue....

[Louise Pembroke]

Gareth, I'm not criticising the committee or local groups, far from it, I've said and repeat I totally respect and acknowledge all the work that everyone does and outside of full-time work. I really do appreciate what this entails.

I'm acknowledging how hard it is to both to their full potential on limited resources and that campaigning and support work unless seriously funded can sometimes be achieved in smaller chunks and in different ways that's all.

Jay has a point about the cost of solutions, personally I can't see how we can compete with cancer drugs in todays NHS.

May I make a suggestion?

How about an online and newsletter survey as to what issues members would like to see prioritised [and other suggestions people might have]?

Then an appeal for people to come foward in the light of those results to work on specific issues [and any required funding, perhaps in sub-groups]?

[GarethB]

A survey was briefy discussed and if you guys keep posting then we can set clear objectives regarding what information we would like to get out of the survey. Care will be taken so that the questions are open rather than leading the person to a certain answer so the answers available (assuming that route were taken) are appropriate. Equal care will have to be taken regarding the size of the questionair as who wants to be faced with a huge questionaire?

One concerned that may be expressed when it comes to online ones is how to prevent people completing it more than once and distorting the views. Anne did a survey a while agao and we got a good response and some valuble information and we learnt a lot too.

We need to capture as many views as possible, we have over 1000 registerd to the web site yet onlya small proportion post. We have a large number on our mailing list and I think Anne got a high reply rate.

Most questionairs get extremely low response rates. Not sure of the figures though.

[Louise Pembroke]

I agree about open questions, and perhaps there is a way of making online questionnaires fixed so that one person can only submit it once?
If this were undertaken online or via the newsletter I don't think it would need to be massive as it would basically be ascertaining priorities and perhaps who might be interested in pursuing them.
I doubt every single member would reply either online or by post but there you go!

[Pat A]

Hmm - I still consider myself very much a newbie (I only joined last week!) - although I now have an elevated status of contributor (probably becuase of the current word game and I'm bored being off work at the moment) so not sure what value I really bring to this discussion. I'm not even sure I fully understand the issue in debate - so apologies if I've got this wrong. I've not been at any conference and I haven't seen the DVD so to a certain extent I'm in the dark. (I've also carried out some medical research into the effects of red wine on KC tonight - results inconclusive at the moment...) But my experiences are (to date) as follows:
A 3 month wait to get an intial appointment at Moorfields - and I can't work in the interim. I think that is appalling.
Then - a very welcome diagnosis - but still a 2 month wait to get my first set of RGP lenses (wish me luck for 19th January 2007)- and having read others tales on this site, no guarantee that these will be OK. I have got to go back to work - which I want to do for my own sanity (or I won't get paid) knowing that I may not be able to reach satisfactory performance levels to start with , so lots of uncertainty there too. And stress.
A very frightening feeling that I don't know what the future holds - and I suspect I'm quite a bit older than the majority of contributors to this forum. There's an element of "you can't teach an old dog new tricks" here...
A feeling of tremendous hostility to certain high street opticiams who have ignored my worries for years - but in return a feeling of great warmth to a local independant optician who has spent no less that 9 (virtually unpaid) hours of his valuable time in getting me to where I am today - including arguing the toss with Moorfields!
An employer, who when reading the "Employers Guide to KC" (which I think is very good) immediately thinks that as soon as I get my lenses, everything is totally back to normal on day 1......in other words, he doesn't want to underatnd that life with KC will still have it's challenges.
Sorry , I've rambled a bit - but what I'm trying to say is that I think there are probably quite a few of us who would like to help if we can, using our own life experiences, even if we are not on the committee. I have some experience in devizing questionaires, and certainly have access to others who can help with this too. Most quetionnaires are geared towards getting the naswers you want so this would be a real challenge to get a bit of realism in!
Enough from me - but if I can help in any way - count me in please. Even in this short time, this support group has helped me tremendously - if nothing else it's given me the strength to face up to my KC and start to learn how to manage it. Thank you.

Pat

[Lesley Foster]

Perhaps one way to ensure that people only fill an online questionaire once is to get them to register their email address before completing the survey and that could then be recorded, if they try again there could be a message or something telling them they've already filled it in.

Just a thought.

Lesley.