Anyone going to MEH?

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rosemary johnson
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Anyone going to MEH?

Postby rosemary johnson » Tue 25 Oct 2005 7:19 pm

I've got an appointment at Moorfields on Wednesday (red clinic, scleral contacts).
If anyone sees a 5'6", 14 stone person with a two-tone purple jacket and a black leather Oxhat, please do come and say hallo.
NOt quite sure what's going to happen - othing much has changed. The ;iggybacking is going on and everything continues, pretty much. eyes been a bit sore recently, largely due to a cold and being woken up very early Sunday morning by a loud banging which turned out to be the Home Offie doing a (pre-0dawn raid on my neighbours.
Rosemary

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Susan Mason
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Postby Susan Mason » Wed 26 Oct 2005 11:15 pm

Hello Rosemary

Hope all went well at your appointment today.

Sounds like you had a pretty eventful Sunday.

best wishes

Susan

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rosemary johnson
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Postby rosemary johnson » Thu 27 Oct 2005 7:50 pm

Hi Susan - yes Sunday was eventful.....
as was Wednesday, what with MEH, plus the -whoever it was - sounding as if they were sneaking back to do a moonlight unnoticed - except with the landlord of the upstairs flat having put down wood laminate flloring on the cheap with no sound insulation, no-one can do anything upstairs without me knowing........ I think I'd hear it in my kitchen if someone upstairs dropped a contact lens on the floor!
APpointment -
well, first of all, what on earth has happened to the outpatients' waiting room? - it is even darker and gloomier in there than ever! I was sitting through the doorway in what I think is anyother department, but the only place it was even remotely possible to read! - and I have a book I have to read in a hurry as I've got a job of writing a review of it for a couple of mags. You should hav eseen Ken's puzzled expression looking round the waiting room for me until he eventually spotted me there!
Does the group still/will it again have meetings with MEH people, and can this be taken up?? - I do know not everyone can stand *brihgt* lights, but this dimness is ridiculous. The receptionist clearly thought so too.
The eyes are much as ever...... apart from the after-effects of being woken up with a terrible fright on SUnday morning and not getting much sleep thereafter....
...... the problem is the soft lenses to piggyback with....

When I first starting piggybacking, I was told it was the standard charge for a contact lens for 6 month's supply of daily disposables. Well, OK, it seemed tobe working so worth a try.... even if it the time finding the cash wasn't too easy.... so I paid and ordered them....... and it took mEH until June, 4 trips up there, and a small fortune in phone calls before I actually got hold of the things - in June - that I'd paid for last November.

When I last had an appointment, I was asked why I'd done that, because - since I'd already paid for the scleral the d/ds should count as accessories tot he scleral and not need to incur a lens charge.

Brilliant!!! I really need the cash. Where's my refund?
Except then, suddenly no-one was too sure.....
And now - yesterday - it seems no-one is even remote clear about this at all....
...... and it is down to *me* - a pateint - to write to someone I'd never heard of at MEH, to (try to) get this resolved - because the things can't even be ordered until anyone knows whether they can order them with a payment or not.
Which organisation ever has to depend on its customers to resolve its own internal processes, for Pete's sake?!
Oh, and in the midst of all this, it has mysteriously transmogrified from 6 months supply to only 3 months supply for a lens charge.

NOw, if that is a fixed rule that for d/ds for piggy backing there is a given charg for a given quantity, for so be it - I'll either have to go without or scrape up the cash somehow ..... but this messing about is, well, does anyone else start to think of phrases like
"railroad"
"run a"
"no way to"
?
Rosemary

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Susan Mason
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Postby Susan Mason » Thu 27 Oct 2005 9:15 pm

Hello Rosemary

Sounds like you had an eventful appointment.

This sort of topic seems to crop up on a regular basis for us all and I often find myself wondering if people who have other illnesses and needs find the same hurdles to overcome and so frequently - quite possibly the answer is yes they do and we are just not aware how poor healthcare can be.

Now I have no intention of commenting or questioning the merits of the NHS however I do often wonder why treatment can vary so much from one area to the next and costs also be so much of an issue, well I dare say that is the good old post code lottery.

I do though feel we get a bit of a rough ride as I feel we need to see to function on a day to day basis and work if possible. And as we all know contact lens wear can at times be a challenge in itself, I certainly don't really ever know from day to day how I will be - not something that is easily accepted by an employer. Nor is advising them that contact lens wear times is not as a NORMAL person would achieve however, who defines normal?

In fact whilst typing this and having had my scleral lenses in for approx an hour and a half, I am now experiencing a patchy steamy area over my left eye and my right eye has just developed a pinhead bubble - the pinhead bubble being my eyes party trick and my left eye steamyness suggested to me by my optom at last visit the effect he has on all his femal patients - although I am home alone at the minute.
If at work this sort of situation doesn't always go down too well and I know for certain that in the past although I have know I needed to go and rinse lenses/replace drops etc at times I have delayed this as the comments/hassle that follows is often just a joke.

Getting back to the point though on paying for and waiting list times etc why does KC seem to be such a variable from area to area. I waited ages for an initial appointment and KC diagnosis, thinking all the time I was going blind. Once on the appointmnet system things got a little better until I needed contacts and when RGP's didn't work and sclerals were suggested I once again waited several months for a second opinion on the fit and then 5 months in total for the lenses themselves, only to then get them for 4 weeks and then have them sent away again for changes to be made before return to me about 6 weeks later. This my employer certainly did not understand.

Having recently had the left scleral refitted I again went from 4th Aug being advised refit needed, 1st Sept before refit appointment, 13th Oct before I could pick up new lens and now as on pick up I 'steamed up' and couldn't see the chart let alone read it am waiting to go back for a check on the lens which is booked for the 17th Nov and this was the soonest they could see me, ven though the optom suggested one week for the follow up.

It really all is a bit much when we all rely so much on our lenses.

Sometimes when I attend my appointment they even struggle to find saline as it seems to be in short supply around the clinic, so I now take plenty with me to avoid delays.

Maybe it is KC that is quite uncommon and hopefully other illnesses or conditions are managed/treated better or then again maybe we are just not aware of other difficulties/hurdles.

Possibly we all need to write to someone and have our views and comments heard/acted upon. Our sight is afterall very important to us all.

good luck to you Rosemary,

Susan

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naeemkhamkar
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just missed you

Postby naeemkhamkar » Mon 21 Nov 2005 3:18 am

Hi Rosemary,

I havent been to the site for a long time, if i had i would of said hi. Yes i was there in clinic 4 in the dimness LOL.

True the waiting times are silly, but i have varying appts at times weekly or monthly. I have always been able to change my appts to the following if im unable to attend (i do this just over the phone) in both clinic 4/15.

Whens your next visit to MEH I've got appts on 30th Nov clinic 4 (refractions, consultant and contact lenses clinic) then on 7th Dec in clinic 15. Hopefully see you there.

Naeem
Ive had 4 graft rejections in right eye. I'm intolerable to lens in my left eye. Been 2yrs Ive learnt to live life with single ocular vision and I enjoy everyday as I have KC in my left eye. I live to enjoy everyday as it comes with my wife and children.

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rosemary johnson
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Postby rosemary johnson » Mon 21 Nov 2005 7:28 pm

HI Naeem,
When's my next appointment?
- oh, not for another 6 months now.
By which time, of course, i will have long since run out of soft lenses for piggybacking and be back to single-eye operation (effectively...... I can get some reasonable vision out of the right scleral without the soft lens underneath but only for shortish periods).
Do you think there's any chance that anyone will have come to a conclusion about whether soft lenses for piggybacking required payment by then???
And do you think that, even if they do, anyone will actually contact me and sort out a new supply??
- or, as the case may be, a prescription so I can get the things from ASDAs instead?
hat do you think?!!

Rosemary
(cold and cheesed off in East London - and last week we had the police round cos the owner of the flat upstairs was trying to kick my flat door down.

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naeemkhamkar
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lenses

Postby naeemkhamkar » Mon 21 Nov 2005 9:30 pm

Well now
Lenses and prescription there is a major issue, I would doubt if any resolve would be made by then or even if there is any contact. My bad experience of MEH was that the clinic sent out a letter cofirming my apr graft a letter i never received. I only found out abt the op due to a off chance phone call i made. It was too late for me to prep for the graft so we postponed.
Prescriptions I find it very annoying that we cannot get our medication locally, I'm on preserve free drops so have to obtain them frm MEH - the pharmacy is awful. I will be hopefully joining the gang of lrndrd soon and can only comment on these issue then.
Lets hope all is well in the new year for everyone.
Ive had 4 graft rejections in right eye. I'm intolerable to lens in my left eye. Been 2yrs Ive learnt to live life with single ocular vision and I enjoy everyday as I have KC in my left eye. I live to enjoy everyday as it comes with my wife and children.

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Sweet
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Postby Sweet » Tue 22 Nov 2005 1:46 am

I have only just started piggybacking and am on monthly ones, so got given three months free as haven't long had sclerals (which i don't use anymore), so think it was to do with a lens change thing as i paid for sclerals and they are not very old. I actually had four soft lenses given to me, as i was wearing the one she tried me with, and then given a box of three, hehe ;)

Anyway ... i have an appointment December 16th in clinic 2 if anyone is around?! I guess you won't miss my welsh accent! LMAO!! Slightly out of place in the middle of London!! :lol:

Am going to suggest if i can try daily sofy lenses, which i guess would count as another lens change and so may not have to pay for them. Am thinking though that as they are just plain, am going to either buy them online or go to my optometrist who provides me with the RGP.

Would i want Moorfields to give me the RGP, hhmm you are kidding right??? Would i want to wait three months for a new appointment to get another one if i accidently broke it??! I kinda think not! So am only in Moorfields to see what they think on my general eyesight and new options, then get my RGP from a local optometrist who i can see in three days if needed, and have had surgery in my other eye done privately.

Dam confusing but it works for me as i now have three opinions, well four if you count the very nice optometrist i still have in Wales who i drop in to see when passing :wink:

Hoping that everyone else can work out the quickest and easiest way to sort out their lenses, as it is dam difficult sometimes to get to someone when you really need it.

And yes, i did notice how dim the lighting was in clinic, but the last time i was there a few months ago, there was a power cut. We sat almost in the dark for a while on emergency lighting until it was sorted, so maybe that had something to do with it!

Take care
Sweet X x X
Sweet X x X

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