Disappointing consultation today

[JuliaF]

For context firstly I need to explain, I don't have KC but my son does. He asked me to go with him to the long awaited hospital consultation.
I was prepared, had read up on KC, got my list of questions and off we went.
It was clear on arrival at 3.20pm that we would be in for a long wait, there were signs on the walls talking about the virtue of patience, that there are likely to be delays etc. So we waited....patiently.

An hour later my son was called through. It was clear from the start that the young Dr was under great time pressure. He didn't listen when my son tried to explain and was very chaotic in mannerisms and in what he said. He had no time to listen to our questions but talked over us and rushed us through the appointment. At one point I lost my temper (regrettable) and I told him I felt he wasn't listening to us.

It is clear KC is a routine thing to them. It isn't to us.

So.....how thick are his corneas I asked. Answer? 'That is irrelevant'. I argued that it was relevant and would surely be a factor if in-tacs and/or cross-linking might be considered suitable for him. Answer 'the corneal thickness is different across the cornea so I can't answer that'.
OK, I'll change the question said I 'At the thinnest point, what thickness is the cornea?'

That gives you a flavour of what it was like. I feel so flat. My son is not a number. I was also told to 'forget talk of in-tacs and cross-linking' lets just see if contac lenses will work.

To cap it all when I persisted in wanting to understand about in-tacs etc I was told our Trust won't pay for either in-tacs or cross-linking anyway and he said if that did become something to consider, he'd refer me to some private place in East Grinstead (over 2 hours away!) I said that I would prefer my son be referred to an NHS Trust that DOES offer the intervention on the NHS if it comes to that.

The whole thing felt rushed, unconfortable and chaotic. The only 'ok' part was the time spent with the optometrist who tried a lens in my son's eye to see if it helped his vision. Without aid, he could just about make out the top letter with his right eye and that was all
I felt so sad for my son - a bit of compassion wouldn't have gone a miss. Feeling very flat. Sorry for the rant.

[Anne Klepacz]

Julia - I'm sorry this first visit was disappointing. But I'm sure most of us have experienced hospital visits where things have been rushed or stressful and others where the staff have been wonderful. It's just a shame that you started with a less positive experience. At least the optometrist part of the visit sounds a lot better. You don't say whether contact lenses have now been ordered for your son. Hopefully they have, and he'll find they make a big difference to his vision.
All the best
Anne

[Andrew MacLean]

Julia

that sounds like the sort of hospital visit that we all thought had been consigned to history. In your place, I'd write to the hospital administration to share my concerns about the way in which patients' were treated.

Andrew

[GarethB]

The fact that a hospital trust doesn't do intacs should be irrelevent to the way you were treated. My understanding from the NICE consultation done about 2 years back and the guidance that resulted said that Intacs are to be made available to us on the NHS. I know in Northampton they don't do Intacs but that is because they don't have a consultant trained in the procedure. So instead they refer people to Leicester for Intacs where the hospital is larger and have people trained in the procedure. The Northampton trust I am sure pays Leicester for the treatment.

You can go back to your GP and ask what other hospitals in you area provide corneal treatment, we can choose from I think three hospitals in our area. The trouble is we don't know what those hospitals are so just go where our GP's refer us to. I would still put a complaint in to the hospital.

If you tell us where you are in the UK, someone may be able to recomend another hospital.

Regarding your son's vision, without lenses I can't see the top line of the eye chart, but with my Kerasoft IC lenses I am now getting 6/4 which is practically the bottom most line. It might take patience to find a lens that works best, but you can most definitly have excellent vision and comfortable lenses, due to an invitation to a confrence in Holland I ended up wearing my lenses for 19 hours for 3 consecutive days, something I could never achieve with rigid lenses. It took me about 3 years to realised it was possible to have comfrotable lenses and great vision and another year to find a lens that provided this vision and comfort.

When your son tries lenses he needs to be honest and if possible detailed regarding what he can see and how comfrotable the lenses, it makes the optometrists job a lot easier.

[Andrew MacLean]

Ditto to everything that Gareth has posted (above). but you should not have to request a referral to a hospital that offers a treatment to which you are entitled. Your own hospital ought to refer you as a matter of course; if the clinical indicators are right you should be referred.

But, in the event it seems that there is a strange reluctance on the part of your ophthalmology department to refer you to another, so please do give us an indication of the part of the country in which you live and somebody is sure to know of a hospital in traveling distance that would be able to offer INTACS surgery.

And do write a letter of complaint about the way you have been treated at your present hospital.

Andrew

[Anne Klepacz]

Hang on a mo! I'm not sure it's fair to condemn a whole eye dept on the basis of one visit where one person was a disappointment on the day, and the other was fine. Maybe the individual concerned always lacks a 'bedside manner', but maybe he'd had a dreadful day and this wasn't typical - health professionals are human too!
And this was the very first time the patient had been seen - surely any eye clinic, whether they fund crosslinking and Intacs or not, would first be trying contact lenses before thinking about more invasive options. As I understand it, Intacs are offered if someone is intolerant of contact lenses or if the shape of the cornea is such that a satisfactory fit of lenses proves impossible or difficult. If contact lenses are going to work well, then there's likely to be no need for Intacs. And with crosslinking, one of the criteria in the NICE guidelines is that the KC is progressing. So again, any NHS hospital is going to need evidence of progression before putting someone forward for the procedure.
Of course it's important for us to be aware of all the options open to us - that's why the KC Group invites specialists to members' meetings and conferences to keep everyone abreast of the latest developments. And of course we want to be able to discuss the options with our own specialist. But surely it's also reasonable for any eye clinic to start with the option that works for the majority ie contact lenses, before considering more invasive procedures that may or may not be necessary or appropriate for the individual.
I don't want to minimise the impact of a bad experience, but I do hope this won't put your son off giving contact lenses a chance!
Anne

[JuliaF]

Thanks for all your replies.
Nottingham is where we live. I understood from my previous thread on here asking about 'where are the centres of excellence for KC' that the QMC are a respected hospital for KC care, hence this experience being particularly disappointing. We had arrived there with a very positive mind-set, ready to engage with their professional judgement.
Everything was shutting for the day as we were called in for the appointment so I suspect the problem is in appointment management and we (from the start) felt like an inconvenience to be rushed through the system before it closed - the signs everywhere talking of delays support that view....

Not sure where this leaves us to be honest. We left the white bit of paper which arranges for my son to have a contac lens fitting appointment sent to him in an open cage on a wall as the staff had all left - I hope it gets found and acted upon.

Like most people my life is full of lots of other things demanding attention of both a practical and emotional nature, I thought we were very well prepared for the KC journey, now it just feels confusing and that we dont' have much of a voice in it.

I hope Anne is right and that we experienced a particular set of circumstances that created a particularly bad day. At the moment I'm pinning my hopes on the helpful optometrist.

It is the first time they had seen a KC patient who had undergone laser surgery and this apparently makes a plateau within the cone so contac lenses harder than normal to fit. She did say that dealing with KC and contac lens fitting is very routine to her. Good or bad? I hope good.

Thanks for listening

Confused of Nottingham

[GarethB]

I know some of the optometrists at QMC have seen this type of cornea, because they came and talked to me about it after I helped give a presentation at the Hospital Optometrists Association Confrence 2009 on the quality of life issues those with KC are faced with. They refered to it as Post LASIK Ectasia which can happen a couple of years after laser eye surgery for myopia.

From the confrence I attended last weekend I saw some data that showed good results can be obtained with contact lenses.

All the best

Gareth

[JuliaF]

Hi, I wonder if those with more experience could help me sort out my head with 'what to do now'.

It's been suggested to me that Ultralase (where my son had lasik in 2000) may be the best place to go rather than pursue the hospital route and that they may even be prepared to see him under the 'Lifetime eye care' banner which may mean no financial outlay (this is all ifs and buts at the moment as they've not been approached for now).
Also, I'm getting the feeling it would be more likely my son would be given access to Kerasoft lenses (he plays a lot of 5aside and takes P.E. at school which makes hard lenses a concern, plus the comfort <lack of!> factor is a concern when he needs to have long wear time for his lifestyle).

My question is do private companies like Ultralase have the required expertise in KC to be a good option for my son's care? I'm struggling at the moment having assumed the hospital is always the best route. Having that belief shaken is causing total chaos in my head!!

Another thing I'm struggling with is this. I had thought that there were two elements to the care of a person with KC, firstly medical care and monitoring of the cornea itself, and secondly finding the appropriate route to getting satisfactory vision. Am I right in this belief? I ask because my son was rushed through to the optometrist 'to catch her before she went home' so he could be tried with a contact lens before he'd even had his cornea's properly examined. After the contact lens try-out, a topography was done.

Thanks all for your time in listening to me. Feeling a bit emotional right now for some reason.

[Helen G]

Hi
It sounds like you got a 'bad appointment', I had a similar experience 6 months or so ago. I had been attending the Leicester Royal eye department regularly for over 20 years with no complaints, but when my eyes deteriorated I got a 'stand in' junior doctor that had no real idea of what to do, and whom I could barely understand. It is very upsetting and frustrating when you wait for an appointment for months hoping that they will be able to so something to help, only to be let down and left with no answers.
After that appointment I asked to be seen ASAP by the consultant, and got an appointment 3 weeks later which was much better
I am having Intacs fitted in a few days, and although this is a 2nd attempt I am confident in the care I am getting, that the doctors are doing what they can to improve my vision.
Don't take no for an answer, ask to be seen by the consultant, or at a different hospital. Even if Ultralase can help (and assuming its not costly) your son probably needs on-going care and support for his KC, from people he trusts and that have the time for him, I am not sure if a private company would offer that long-term.
All the best

Helen