Anyone here get contact lenses from Nottingam QMC?

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graftpatient
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Anyone here get contact lenses from Nottingam QMC?

Postby graftpatient » Sun 29 Mar 2015 7:58 am

I used to go to Nottingham up until 2012 but was fed up with just being offered gas permeables as I can barely tolerate them having had a graft on my right eye and dry eye and KC in my left.

I asked my GP to refer me to Moorfields but almost 3 years on and am no better off, my eyes are sore all the time and I found the consultant I saw last time very curt and abrupt despite being a highly well-known fitter.........

So I wondered if anyone goes to QMC and if they now offer more variety in lenses? It is much more local to me

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Re: Anyone here get contact lenses from Nottingam QMC?

Postby Lia Williams » Sun 29 Mar 2015 8:54 pm

Hi Graftpatient,

Welcome to the forum.

I'm sorry to hear to that you are having difficulty finding a comfortable pair of contact lenses. Unfortunately fitting a KC eye never seems to be straightforward and it can be an extremely frustrating process. But sometimes one just doesn't know whether it is the eye that can't be fitted or that the optometrist hasn't the lens to fit the eye. Also it can taking a lot of appointments to find the best compromise.

Are you following the hospital's advise about contact lens wear?

How long did they suggest you wear your lenses for? And for how long are you wearing them? Do use re-wetting drops regularly? Do you use protein remover tablets (if instructed to do so)? And do you clean your lenses after wear (rather than before wear)? Lots of small changes can make a big difference.

You may find it useful to write things down before you go to an appointment. After taking time to travel to an appointment and hanging around in the waiting room it's easy to forget what you wanted to say, or it comes out all wrong. Especially if a lens isn't performing as hoped it's very easy to say that the lens is 'useless' rather than give a rational description of the problem.

Hopefully someone will see your post about QMC and update you - but you might find changing hospitals is like going back to square one as they may not have access to the last three years' notes.

LIa

graftpatient
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Re: Anyone here get contact lenses from Nottingam QMC?

Postby graftpatient » Sun 29 Mar 2015 10:12 pm

Hi Lia

Yes tried lots of things but thanks for the tips.

Don't mention taking written notes, I did that at the last but one appointment and the consultant wouldn't even read it (again it was one of the top people in Moorfields) and just said curtly "well, what's on it then?" and I was so dismayed I just read out a few things.

At my last appointment I tried a scleral in my left. Again I was treated and spoken to like a child because I couldn't get used to it at my first few attempts. In the end I went off with a friendly lady I have seen before who doesn't mind going through things several times.

I have struggled with that on returning home because after only a couple of hours wear it is oily/cloudy and needs taking out for cleaning. I have a mini-scleral in my right and gone back to the mini-scleral in my left.

But like today my eyes have felt burning and sticky all day so no lens wear again. They look nice and white though.

I don't think ophthamologists have any understanding how much mentally KC and other problems effects patients.

It is now 9 years since my graft, and I had an accident in the eye a year later, losing the lens part of it. My left eye, which used to do all the work seems to have advancing KC now (dispelling the urban myth it stops at 40) so after all this time my vision is worse than ever.

VERY depressed about it

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Re: Anyone here get contact lenses from Nottingam QMC?

Postby Lia Williams » Mon 30 Mar 2015 8:19 am

graftpatient wrote:I don't think ophthamologists have any understanding how much mentally KC and other problems effects patients.


This is one of the things that came out of the London KC Group Meeting on the 21st of March when the topic for discussion was 'Seeing the person, not just the eyes - the patient perspective of KC'.

Our dependency on contact lenses is such that are our lives are affected if we can't wear our lenses and the stress of getting a suitable lens prescribed. The best lens for the patient perspective might not be the one that gives the best theoretical vision according to the Snellen chart but with limited wear time but one that can be worn comfortably throughout the day.

I have found it difficult to go to an appointment and say that I preferred my old worn out lens to the new one they spent ages prescribing at the previous appointment. This has been because the new would ping out when I glanced quickly in one direction, or it gave 6/6 vision on the chart but had not been like that in real life because of the ghosting, or the power of the lens was significantly different or the lens had significantly reduce wearing time. It's difficult explaining these sorts of issues as one feels that you are questioning their professionalism. And yet we know that without their help we wouldn't be able to see and function. At the same time they can be frustrated with the patient who doesn't follow their advice about wearing times and cleaning regimes. I have to remind myself to use protein remover regularly (ie weekly and not the night before an appointment) - and to give my eyes an occasional rest from lens wear.

graftpatient wrote:only a couple of hours wear it is oily/cloudy and needs taking out for cleaning


I wonder if the lens is getting oily/cloudy - I had a similar issue with an RGP. Another lens that I had rejected as being 'useless' but the issue was a build up of tiny bubbles under the lens. You may have a similar issue, are you managing to get the lens in bubble free? Or there a bubble which is then breaking up into smaller bubbles?

Lia

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Re: Anyone here get contact lenses from Nottingam QMC?

Postby graftpatient » Mon 30 Mar 2015 12:48 pm

I know what you mean about the Snellan Chart. With my left eye I can read to almost the third from bottom line without any correction. But I have to keep saying "yes, but it's all the accompanying distortion/ghosting/multiple images I need correcting please" !!!

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Re: Anyone here get contact lenses from Nottingam QMC?

Postby Anne Klepacz » Mon 30 Mar 2015 4:47 pm

What Lia didn't mention is that the AGM discussion followed on from a session we'd had the previous month with one of the senior people in the Moorfields Optometry dept when we talked about the psychological effects of KC on us, and about issues like the Snellen chart not giving a good indication of how we really see. So we are trying to get the message across! And I think we are being listened to although it might take a little while for it to permeate down to everybody.
But it also strikes me that we sometimes complain about not being seen as people when we're behind the slit lamp, but we can be just as guilty of not seeing the health professionals as human beings! The last couple of times I've been in the clinic, there were so many patients that the clinics were over running really badly, with people arriving for the afternoon clinics while there was still a large backlog from the morning. So the staff were working through their lunch break to get everyone seen. It's then no wonder that they don't have time for empathy and are feeling frazzled. I also remember a time a few years ago when I waited hours in A&E to be seen on a Sunday. When I finally got in to see a doctor something made me ask him how long he'd been there. When he told me I was going to be his last patient at the end of a 12 hour shift, my complaint about how long I'd been waiting died on my lips!
So I think Lia's right, and there are frustrations on both sides of the slit lamp. Not easy to remember when, as another KC Group member put it so eloquently, our contact lenses are our wheelchairs, and we're lost without them.
I don't know what the answer is, without more resources for the NHS so that the medics aren't feeling so pressured.
Anne

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Re: Anyone here get contact lenses from Nottingam QMC?

Postby James_Ldn » Tue 31 Mar 2015 1:39 pm

I concur with the comments above regarding the Snellen chart. Reading the 20/20 line is no good if there are multiple images of what you're reading! If you have to read from a computer like that all day long, then that's a huge problem. I think this is something that a lot of ophthalmologists and opticians really don't understand about how keratoconus affects people. It's the quality of vision that matters just as much as the quantity of vision.

It also makes things difficult when ophthalmologists write letters for the patient's employer or insurance company, because saying that someone can see the 20/20 line makes it sound as though there are no problems, when nothing could be further from the truth.

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Anne Klepacz
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Re: Anyone here get contact lenses from Nottingam QMC?

Postby Anne Klepacz » Tue 31 Mar 2015 2:55 pm

Yes, and it's particularly galling as there ARE alternatives to the Snellen chart, which would be much better at giving a truer picture of how we see, which have 5 or 7 letters on every line. I'm sure optometrists do know about the ghosting - I certainly tell them when I'm reading the chart and I hope everyone does. But as you say, that doesn't help when the Snellen measurement is given in any letters about us.

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Re: Anyone here get contact lenses from Nottingam QMC?

Postby Lia Williams » Tue 31 Mar 2015 5:14 pm

And some Snellen charts only use symmetrical letters. Which means that it's easy to guess - rather than read. I have said "I can see C and N but it must be an O and M as you don't have a C and an N on the chart".

It reminds me when I was in Infants School and I had an eye test with an E Snellen chart. I was give an large letter E and asked to show her which way the letter was on the chart. So I got every M and W right but all the Es and 3s wrong. Why? Because the nurse was standing between the chart and me so I held the E so that she would see it as she would on the chart. Baffled she asked me to read the chart and read all the letters correctly.

Lia


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