Self Help Group Poster at Moorfields

[Pat A]

Hi
I'm at Moorfields tomorrow - I'll see (with my new lenses maybe - ha ha !) whether it's back up there.

Pat

[GarethB]

Good luck for Friday Pat.

[Pat A]

In case people haven't picked this up from other posts, the new poster, nicely laminated, is on the board in Moorfields, just as you go in to the Contact lens clinic.

I must say though, that without any lenses in I couldn't read any of it from either the front row of seats nor as I walked past it so it could be missed by the very people who need to see it..

I think we must lobby Moorfields staff to help us raise the profile of this group - & that links us nicely back to the other post-string about mental issues and KC.

[Michael P]

Pat, I made a comment earlier in this thread about the size of the print on posters at Moorfields generally.

Not only that, every time I go I am never sure of my bearings and usually find the contact lens clinic, pharmacy etc more by luck than judgement. Am I the only one or are these senior moments (which must have been junior moments as well years back!).

[Pat A]

Michael
You're not the only one! I struggled to find the pharmacy last Friday and if hubby hadn't been with me haven't got a clue where I'd have ended up!

Have found the easy way to the contact lens clinic (as a result of the fire evacuation on Friday) - go in through the A & E entrance (beyond the main entrance) straight through past the loos - and you are there!

And senior moments? I have them all the time - combine them with blonde ones and I don't stand a chance!

[Steven Williams]

If its the same people at the CL clinic as when I was there...I wouldnt hold your breath!....Jeeez the two women there moan and groan at everything! and god forbid you have to go up and ask how much longer...then its like youve just commited the biggest sin!

I do hope they have changed the Clinic Admin staff!....

That mirrors the situation at MREH (Manchester) exactly . At my last consultation the two women were busy looking through their mail order/Argos catalogues no doubt looking for a bargain! I find them unfriendly and unhelpful. It comes across they hate their job and dont want to be there.

Some advice/a tip :- if these paid public servants are giving you a rough time, avoid confrontation. Just be assertive and positive: politely ask them for their names, after that you may find they treat you a bit better and give you some respect.

The waiting area and consultation rooms are dated (Victorian) uncomfortable and an absolute disgrace. The gents toilet stinks of p***. Maybe the working environment is part responsible for the low admin staff morale?

I dread and hate going because it always makes me feel so depressed, but relieved when I get outside the building.

[Steven Williams]

One thing that I do appreciate here is the humour, the irony and the hope offered for effective KC patient representation to make improvements for all parties involved.

This thread when reading through it reminded me of the TV comedy series "Allo, Allo" and the "elusive picture of the fallen madonna with the big boobies!"

It is imo though a serious issue and highlights a barrier I have consistently faced with the healthcare profession......a lack of openess, transparency, accountability, consideration and patient/customer care.

Where there is good patient KC care we should be asking the key question why cant it be like this throughout the UK. We need to identify and flag up the "beacon" KC health care centres from the patients/customers point of view.

[GarethB]

Steven,

That is what e are trying to do, it is possible to get a list of eye hospitals in the UK, but not all of those cater for corenal disorders so do not take KC patients.

The committee is actively trying to find/compile a list of all the corneal centres in the UK. We are slowly but surely identifying those people within the healthcare industry that have the power to make change.

As I said we have made progress, small may be, but progress none the less.

As much as we would like to raise the awarenes, that will take time. We have taken the first step in compiling a list of optoms that have an interest and a desire to help us with KC. As I check registrations and clear the spam, I am seeing more and more optoms registering.

Hopefully they will post and share their experiences treating people with KC and we cna get a better understanding of what each goes through so hopefully we can together improve the treatment and management of KC.

Unfortunatly I was unable to attend the last commitee meeting so if my post contains errors, I am sure they will correct it.

[Steven Williams]

Pat, I made a comment earlier in this thread about the size of the print on posters at Moorfields generally.

Not only that, every time I go I am never sure of my bearings and usually find the contact lens clinic, pharmacy etc more by luck than judgement. Am I the only one or are these senior moments

And it is supposed to a centre catering for people who are visually impaired!!!!!

[Steven Williams]

Again this lack of consideration mirrors the situation at MREH.

At an appointment last year after almost two hours of waiting, with no magazines/anything to read in sight, I got out my mobile and started to play the games on it.

It did no appear to bother any patients waiting. After a few minutes I got a shout from the reception desk "Mr Williams have you not read the sign".

I looked around and could see nothing apart from a piece of paper at one end of the waiting area. The font size was about 12 and could only be read by wife who has normal vision unaided when she stood in front of the A4 size sign a couple of feet away!

At my last consultation the other week one of the fluorescent lights in the waiting areawas consistently flickering. I arrived on time for my appointment and waited for almost an hour before my call. Whilst waiting I decided to see if anybody else would do anything as most of the waiting patients were indicating signs/making comments between them about the aggravation/discomfort it was causing.

Remember this is a specialist eye care hospital!!!!!

I returned to the reception to arrange my next appointment and after I had done this mentioned about the discomfort the light had caused. "Its been reported to Maintenance Mr Williams" was the reply.Nothing more nothing less!

Name and shame springs to mind, Thank goodness for this self help website facility.

Whats needed is a KC patient (compiled Qs agreed by the community here) questionaire sent out to registered UK people here aimed at locating these Beacon centres.