UK Keratoconus Self-Help and Support Association

As we heard on Saturday Direct Action and lobbying will enable the National Health Service, the National Institute for Clinical Excellence to listen to us sooner,

2 more years, could personally speaking result in no vision at all, which scares me beyond words, in the last year iv lost around 6-65% vision

Who is prepared to help assist me to lobby, campaign and ensure we don't get bullied into silence

Yes I am outspoken, yes I am an atavist, I despise the word NO, so I ask again

are iwth you me on this?

Lea
xox

Good for you, Lea

In Scotland we lobbied hard for Intacs, and after a long campaign of letters to hospital management, our own MSP's and the Minister of Health, we go the action we had been working for. I think that the effectiveness of that campaign was acknowledged by one of the speakers on Saturday.

All the best

Andrew

yup lobbying and direct action waw commended by one of saturdays's speakers, in Scotland health care appears better in ways down here as people don't just talk they act.

I will get this going as surely my only option cant' be the grafts I was suggested?

PITN (pain in the neck)

Lea
xox

that would depend on how advanced your KC has become. As you know I waited until I had nothing left to lose Others may prefer a more proactive approach.

Andrew

Re the graft, i will say again get a second opinion about the graft as i was told by my hospital my only option if CL didnt work was a graft when i knew of other options that were available. From our discussions your local hospital (where they confirmed the KC) isnt a specialist Eye Hospital so may be worth asking for a referral to Manchester Eye Hospital (not too far from you). I found i was seen very quickly when i requested the referral to Manchester, the only delay was they wanted me to attend a clinic on the sunday at 8.30am the day after i got married

If someone could organise a letter template we could all just download it and fill in the blanks for our particular area and post to the relevant persons? It may also be worthwhile to include MP's in the list of people we intend to lobby. i have some experience of lobbying and will find out more and get back to you either on the site or via PM.
Graeme

Well said, Lea - and strength to your elbow.
Am with you all the way in spirit.
Wish I could be so convinced I'd be there all the way in the flesh, with health as it is.
Will do what I can.
Maybe we could arrange a mass deputation to whichever is the relevant committee of MPs? - and have people start to take out scleral elnses in front of all these MPs, then insist of reading the paperwork ourselves at 2" distance, summon assitance to lead us back to the tube station, etc?
DO you think we might have an MP faint at the sight of a scleral lens coming out?
No, seriously..... would do some of our policy makers good to experience exactly what struggles some of us go through to survive each day.
Rosemary
tearing her hair out over the apparent inability of her bank to understand that not sending out large print credit card statements in time to pay them before the cut-off date is NOT ACCEPTABLE and furthermore is ILLEGAL!!!!

Remember that the PM himself has big problems with his vision. I am not sure exactly but I understand he only has one functioning eye and even that does not have great vision. I do know that his poor eye was injured in a rugby accident and is either not used or may even be a prosthetic one.
He does wear a contact lens and delayed a speech recently as he lost a lens.
Surely lobbying the PM himself would be worthwhile? Can it do any harm? All that might be lost would be our time?
We invited our local MSP's into our practices a few years ago to allow them to see the work of Optometrists and Dispensing Opticians. I see no reason why a KC sufferer couldnt do a similar thing to invite their MP to view how they cope with their poor vision in a work situation.

Anyone hte energy to go a petition on the official goverement petition site , as I am not haivng a good evening tongit or would do it myself.

Lea
xox

It would have more clout if the petition were started by the KC Group and a mass e-mail to all who are registered on the forum and an item placed in the next news letter to encourage people to go on line and complete the petition.

Rebemebre to e-mail the link to the petition to friends and familly and get their support to.