UK Keratoconus Self-Help and Support Association

Sorry for the delayed post but I am so upset with all this at the moment. I have posted this to the other post as well.

Thanks have gone a bit downhill since my post advice

We've been back for a review appointment which hasn't gone well. We made an emergency appointment which she was cross about as she felt it was not an emergency. To be fair I would of been happy to have spoken to her on the phone but she's only in one day a week and I was told this wasn't an option. She said we could leave it 6 months then try again or we could keep trying and she would work with us. She said it wouldn't make any difference to Zach's sight.

We then went back the following week as Zach doesn't want to wear his glasses and is keen to get this sorted but it got worse.

The lens lady said the lens would not hurt if its in the right place so we must be putting it in wrong - but then she couldn't get it in and made his eye really sore. When we have got the lens in I've made sure it's where she told me it should be - but what do I know?

She then gave him an eye test and accused him of lying. Fortunately I was not able to go on this visit as I don't think I could of restrained myself. My husband did tell her that we won't be back for at least 6 months.

From what I can tell she is the only person in Swindon to fit KC lens so I don't really know what to do now. I am very reluctant to go back - she doesn't seem to have the patience which I think Zach needs - our appointments always feel really rushed and are very stressful.
She has said we can go back any time but that the lens must be in - yeah right - somedays it can take over 1/2 - 1 hour to get it in! The way I feel at the moment is that I am not letting her anywhere near my son- this is difficult enough for him and I don't feel she is helping at all.

Our only "potential" option (so far) is to make an appointment with the consultant at Bath (my friend is a nurse at the eye clinic and has already spoken to him and he has agreed to see us). The problem with this is the initial cost as we'd have to go private but also the time needed - I work full time and have already used up all my holiday and, like everyone else, we do not have unlimited spare funds to pay for transport and parking etc.
His school work is already suffering and I don't want to keep taking him out of school.

I'm sorry if this has turned into a mini rant - I'm still seething over the way she spoke to him.
Thanks for reading this far.

Dawn

Dawn, hi again.
I've already repliedo nthe other thread, but interested in the extra news.
I do agree this isn't the style you want, and a complaint to the hospital wouldn't be out of order from what you say.
I don't know anything about Bath eye hospital/clinic - but a personal recommendation from your friend is likely to be worth quite a bit.
Can you not et your GP to refer you there, rather than having to fund a private consultation?
As regards the time out of school - I remember going off to loads of hospital, doctor, contact lens etc etc appointmnets and missing a lot of school.
Are the school being sympathetic? - would a chat with head or whoever, and some of the group;'s factsheets help?
Unfortunately, there comes tobe a stage where you can loe either way - either missing a lot of school from lots of appointmnets, or struggling with school from having difficulty reading the blackboard, etc.
What does Xach himself think about that issue?
As for the time off work - can only sympathise. Are your employers being unsympathetic? - there are now rules about requesting (unpaid, I think) time off for family problems if you have a disabled child - which it sounds like you ought to come under - or a supportive boss might agree you should! You might like to have a chat with a union rep if you have one, or even CAB.
Best wishes, adn do keep us posted.
Rosemary

Dawn

I already responded to this on the other string, but I think that you now have had some contact that may indicate a way forward.

As I said elsewhere; this is unacceptable from any eye care professional, whether the patient is 12 or 42.

All the best

Andrew