What should we do?

[Libby]

Hello all,

Just starting to feel anxious because my daughter has a hosp appt on tues. She was diagnosed with KC about 2 years ago in her right eye (I have had KC for 25+ years in both eyes). the prob is that she has only ever had one topography done when we saw the consultant privately on her first consultation. Ever since no other topography has been taken. When I mention CXL I get a very negative response and I am given the same advice which is to wait and see. They cant or wont even tell us if its progressing as they have no new topography charts. My concern is what if it gets to a point where her cornea is too thin for CXL.

I already feel guilty about her having KC and now im worrying that Im not doing the best for her.

Your advice would be appreciated.

Sorry if im rambling but the 6 monthly hosp appt always turns me into a nervous wreck.

Regards Libby

[Andrew MacLean]

Libby

you have no reason to feel guilty about your daughter's condition, but you are right to be puzzled about the examinations she has received. Does your hospital have a dedicated cornea specialist? If not, why not ask for a referral to one that does?

Every good wish. Please let us know how things go on Tuesday.

Yours aye

Andrew

[Lynn White]

Libby

As CXL is not yet routinely carried out in hospitals, sometimes its just that hospital staff do not really know a lot about it and even if they do, they cannot really be seen to be encouraging you to look at a treatment that is not mainstream NHS.

As for topography measurements, you need to ask about them OR you can find somewhere that does them privately. In the optom listing provided on this site http://www.keratoconus-group.org.uk/optoms/index.php where possible, it is indicated whether a practice has topography or not.

Now, just to confuse matters, some topography machines will also measure corneal thickness (like pentacam and Orbscan) but others won't.

An alternative you could consider is laser clinics, as they have to measure thickness anyway on corneas they operate on. Not too sure if they would just let you book in for a topography and pachymetry - probably depends on the individual practice - worth asking though!

Lynn

[GarethB]

Libby

Scrivens opticians are in the Midlands and if you don't mind a trip down the A38 and M1 to Rugby, they let you book in and pay just for a topography. I did this for my daughter after we had a topography done on my wife who has astigmatism in one eye because it raised a few questions, so we had muy daughter done for peace of mind.

Hope this helps.

[Libby]

Hi Everyone,

Thanks for yr replies.

Just a quick update on todays outpatient appt at our local hospital.

I received a phone call at work from my daughter who was crying thro a mixture of frustration and anger.
She was seen for her 9.30am appt at 11.15am - her consultation lasted 2 mins - when she asked about whether she could have a topography so we knew if the KC was progressing she was told there was no need, followed by another negative answer to the question of CXL.

I have now decided that history has repeated itself - I myself was left traumatised by attending that hosp 15+ years ago and unfortunately their eye dept does not seem to have improved.

I am definately changing hospitals - I am currently researching good quality eye clinics in hospital in the East Midland area - I will also look at getting a topography done privately.

Thanks for listening to my moans

A very frustrated mum

[GarethB]

Hi Libby,

Sorry to hear about your daughters traumatic experience. i have no idea of any of the Nottingham hospitals treat KC, but after attending one of the East Midlands local group meetings Leicester hospital got good reports somewher off to the left of junction 21 of the M1 or f at the same junction you go right down the M69 you get my hospital Walsgrave in Coventry (just in to the West Midlands) whome I have found to be excellent. Rarely do I have to wait much beyond my alloted appointment time usually no more than 15 minutes and if I arrive early I am often seen earlier than my appointment time. The ony time I waited over an hour was because a couple of optoms were struck down by the smae bug and the poor optom left was running two clinics single handed!

They may not always take a topography but have always done so when I have asked and I usualy see the same optom at each visit. They take their time with lens fitting and when I was first fitted they would put a lens in, send me to the waiting room while it settled and then see me again and this could happen several times. On one occasion while we were trying to find the best lens I was there most of the day, it was as if they weren't prepared to let me go until they had found somethng thatworks or the hospital closed for the night, whichever came first. I've never had a check up last less than 10 minutes, they are usually 15 - 30 minute sessions and like I say longer if necessary and that is time with the optom.

I know this would involve extra travel, but from your post it sounds like you are prepared to travel if it means you get the quality of treatment we all would like.

all the best.

Gareth

[Steven Williams]

Hi Libby,

Sorry to hear about both you and your daughters bad experience of KC healthcare in the NHS.

It certainly replicates my 26 years experience at my local hospitals.

You should look elsewhere. Private treatment though is expensive. For an half hour consultation and typography on both eyes at the Manchester Centre for Vision I was charged £250 and when I asked them to compare if my cone had changed since these readings they were not in my hospital file. I regret not taking these readings after having paid £100 for two pictures. Two pictures turned up later but they could have been a picture of anyones eyes.

I hope that somebody here can provide you with a recommendation. I'm afraid I cant but when I can I promise I will do. Hope that that you have more success here than I have of trying to find top quality treatment because the best interests of KCers dont appear to be put first imo. Have a read of this locked thread:-

viewtopic.php?f=1&t=5242&start=10

[Anne Klepacz]

Apologies for editing a couple of posts on this thread to take out the names of specific hospitals that were being criticised. While I appreciate that people need to vent their frustration when they have a negative experience, criticising named hospitals or named professionals risks this forum having to be closed down and the KC Group being faced with legal action which could mean the charity having to fold. We don't want to stop people expressing their views, but please do not identify hospitals or individuals when making critical remarks on this public forum.
Many thanks
Anne

[Libby]

Hi there

Just a quick post to thank you for taking the trouble to firstly listen to my moans and secondly to reply and offer support.

Thank goodness for this website it is an absolute gem. I can still recall how isolated I felt in my younger years when I was first diagnosed. To be able to speak to someone who understands the condition and challenges it creates is absolutely priceless.

We are now considering which hospital to be referred to and your suggestions have been greatly appreciated.

Regards Libby

[Fordy]

Anne,

Is this forum not about sharing good and bad experiences?

While I agree that we should not name individuals surely there is no problem naming and shaming Hospitals offering poor treatment to KC'ers.

Editing posts should be for extreme cases only.

Fordy