Quicktopic posts: Dec 2003

[rachel lovejoy]

can anyone recommend a good KC specialist, i live in brighton but will go anywhere. I have softperm lens in right eye and very stroing but normal soft in left but noy for much longer. My GP will send me anywhere to get the right advice and treatment- is moorfields the best place in the UK? I have tried sussex eye hospital and centre for sight in east grinstead with varying results. thanks

[umbilica@umbilical.demon.]

I had a letter and leaflet this morning from the Moorfields Eye
Hospital chief executive, telling me they were applying to
become a foundation trust, and asking me to apply to become a
member or express interest in being a director or council member.
Anyone else had one of these?

Anyone here going to go for it?

At the time I log in next and upload this, I'll also have a look at the website advertised on the leaflet (assuming it is
accessible, of course; and wouldn't it be nice to be able to
assume that anything connecting with an *Eye* Hospital would
be!) to see more about what is involved.

But so far I'm in two minds - do I really want to have anything
to do with the set up of foundation hospitals or any part of
Agenda for Change, being so opposed to it all? - or would this
really give us ordinary "users" a chance to influence anything
for the good? It would be nice to think we - the people who go
for being members, or on the COuncil, or directors, etc - would
be able to do good and useful things - like: impressing upon the "system" that people with eye conditions are *people* first and
foremost and not just medical conditions on legs; or like the
emphasis that we are disabled by an inaccessible and
discriminatory environment and society rather than a string of
medical Latin (as someone else on here posted a while ago,
training new medics, etc, in the social model of disability).
[Plus, of course, all the usual things we complain about like the appointments system or lack of it.]

Anyone else got this mailing and got any thoughts about it?

- and apologies to those who aren't Moorfields folk for posting
a local issue.

Rosemary

--
Rosemary F. Johnson

[Jay76]

Rosemary

I also recieved this.

Whether or not you agree to hospitals being Foundation is somewhat a personal opinion and each have there pro's and cons'

I personally am FOR it; means Hospitals can seek alternate funding, are independent and arent out right dictaed by the Government, can become BETTER hospitals as they control budgets, can imporve patient services, etc etc

Of course, the main argument is that it becomes a BUSINESS..if that makes sense.

[Zollico@aol.com]

I'd kindly like to unsubscribe

Regards,
Al

[Dave D]

HI Folks,

Hope we all had a good christmas and looking forward to a healthy new year!

Was wondering if anyone could help put me at ease on a couple of things?

Ok, as posted in teh past was told has KC a year ago and have successfully wore softperms in this time. Recently I have had an increase in floaters, a reducyion in my quality of vision and a graininess, like interfernce on the tv appear in my vision.

Now I have been to the eye dept twice and they say they can see no reason for any of these symptoms, my retina is fine however, my cornea has some scarring which should clear over time with ointment.

The worrying thing has occured over the last few weeks. I have a constane numb pain behind my eyes and often some form of head pain. Yesterday I completly panicked myself when seeing loads a bright flashing lights with my left arm going numb and my field of vision closing in. Was told by hospital that I was now a member of the migraine club aswell as KC, nice! I can't help thinking now that there is more to all of this and worried about complications in my head/brain with blood vessels etc etc. THis nmay explain the redudction in my vision over recent weeks and my head and eye ache and general fatigue?

What do you reckon and are migranies more common with KC that I first thought?

Cheers folks,
Dave.

[Janet Manning]

Phil,
I actually got my KC diagnosis as a result of an incident like yours, when I used to wear RGP corneals. I was teaching a reception class at the time and over several weeks 'lost' two lenses. The efforts of 35 five year olds to find teacher's 'eye' were all in vain! Each time I gave up and like you put in a spare lens. I was on lens no. 3 when one morning I woke up to completely opaque vision in one eye. PANIC! I felt around for a bit and realised I'd got a lens in there. Finally managed to extract two very gooey lenses stuck together. They had been stuck at the very top of my eyeball for SIX weeks and meanwhile I'd been wearing a third lens. So much for the oft quoted phrase about it being impossible to lose a lens in your eye! I went to a local optician to check my eye and got the KC diagnosis. I think the problem arises because of the need to use very small diametre lenses on cone shaped corneas. They are then unstable and move off centre frequently. Being small they disappear from vision and we think they've fallen out.
Another good reason to wear sclerals!

[Janet Manning]

I think anyone who is a Moorfields patient will have got the letter yesterday. Whatever we might think about foundation hospitals this looks like a done deal, so we might as well make the best use of it. I think it would be great if there is a KCer out there willing to put themselves up for election as a governor as this would give us a voice. It would however be important to represent a broader spectrum of patient concern than just the KC specific view. Here's a chance to make constructive suggestions about all the whinges we have and also to praise and support all the excellent practice that already goes on, so that they know what we appreciate.

I will definately be returning my form to become a member. Is there anyone with the time and enthusiasm to stand as a governor?

[Jan Fisher]

to Susan and Andrew both 27/12. Ta to you both for your advice. My other half took her out for a big girls drink and would not bring her back until she finally told him all that was troubling her. Things seem to have calmed down a bit but all help and advice is gladly received and greatly needed. Jan xx

[umbilica@umbilical.demon.]

Jay said:
I also recieved this.


- this being the mailing about becoming a member of MEH trust.


Are you going to go for it and become a member, though? Or
consider being on this council, or even being elected as a
governor?

I had a look at the site, and it talked about wanting people to
apply/express interest, but not about what was involved. Do
members have any duties/responsibilities/meetings to go to, or
just get newsletters every so often and a ballot paper from time to time? Or are they actually trustees and could be held
liable? Does anyne know more about this? - I presume governors and Council members have committee meetings to go to.

It sounds from the leaflet as if members probably have to do
very little - and maybe they want as long a list as possible to
impress with the community involvement. But maybe no harm done, even if impact is comparatively low?

Anyone else going to sign up/stand for election/whatever?


Note: I wasn't trying to start a discussion about what's right or wrong with Agenda for Change; there are better places for that
and I go to far too many meetings where it is discussed at great length! - just mentioned it as one of the reason I was in 2 minds.

Oh, and by the way, MEH web site is refreshingly accessible, and even contains a statement about wishing to make it maximally
accessible and compliant with the Web Accessibility Initiative. How wonderful! - and alas all too rare. Unfortunately their
downloaded document was only available in PDF, which is
notorious for access difficulties.


Rosemary


--
Rosemary F. Johnson

[AGM]

Rachel Lovejoy - we have chatted before by e mail - I am also in Brighton - I see David Ruston in London (not NHS) and would recommend him to anybody who is looking for a very very good lens fitter

http://www.nfburnetthodd.com/index.html

Good luck

Josh

Chand0404@aol.com