frustrated and need advice!!

[Erfan]

Hi, I have been reading the forums for a while now but have never posted anything up until now. Firstly I'd like to thank everyone for all the useful information that's been posted as there have been times when I felt as though no one really understood the effect that KC has on me and performing everyday tasks but reading the forums helped alot. I'll try to keep it short and would really appreciate any help or advice that is offered.
I 'm now 28 and was diagnosed with KC in December 2009. My vision had been deteriorating for a couple of years but was told I had an astigmatism and it was nothing to worry about as it should be corrected fine with glasses. I was diagnosed with KC due to a random visit to specsavers. I actually went there to pick up some contact lenses for my wife. While I was waiting I noticed the optician was free and as I felt I needed a new set of glasses decided to have an eye test. After what felt like hours had passed by she explained she couldn't give me glasses and would refer me to a consultant at royal Blackburn hospital.
I thought it was strange being refused glasses but when I saw the consultant I was told I had KC and he explained I needed hard lenses and referred me to an optician. In February I had the first topography and the results weren't good. It showed mild/moderate KC in both eyes.
Over the following months my optician continued to struggle finding me suitable. I have tried hybrid lenses, hard lenses and piggy back lenses but was going through a set every few weeks. The optician initially thought I was mixing up the left and right contacts but realised it was in fact the KC progressing quite rapidly when I asked him to compare the corneal measurements to when I first came to him. He referred me back to the consultant to discuss the possibility of having x-linking therapy and/or intacs.
During the consultation the nurse struggled with the refractive index measurements and was unable to complete it for my right eye and got some for my left after about four tries. I asked the consultant about intacts and x-linking therapy and he said that although I was a good candidate for the procedures the nhs would not provide it and I would have to pay privately at a cost of about £8000. Having read the forums I knew there were a few hospitals offering intacs on the nhs so I asked why I was being refused when it was a technique approved by NICE. He basically told me it was down to cost and the hospital didn't have the equipment but his private clinic was well equipped to do the intacs. I then asked why he couldn't refer me to a hospital which does have the equipment and his response was "even if you find a hospital willing to do it on the NHS they'll apply for the funding from Blackburn PCT due to the referral and it'll be refused!". We finished off by agreeing he would refer me to a private consultant in Manchester as I wanted the x-linking therapy more than the intacs and he only dealt with intacs. He also warned me that looking at the refractive index measurements he thought I was moderate/high risk of having hydrops.
The following week I got a call from his secretary explaining he wanted me to have a topography urgently before deciding on what to do next. I had this performed at Burnley general the following week. About 2 weeks later I got a letter explaining there was progression in both eyes and it could be KC or pellucid marginal degeneration. If it was the latter intacs are useless, however in both cases he recommends corneal transplants. Also that if I wanted referring to Manchester I would have to do that through my GP and he was discharging me from his clinic. I was a bit shocked as this wasn't what was discussed at the consultation.
I'm now very confused about what to do next. I have tried chasing up the referral to Manchester, but have been told it's in the system, however it could be months before I get an appointment depending on whether the consultant thinks its urgent or not.. I'm worried he won't as my GP was surprised the consultant didn't refer me himself and was unsure of the extent of my KC so just used the discharge letter to refer me. I also asked Manchester if they did intacs on the NHS and was told by a consultants secretary she wouldn't like to comment as if I was offered it they would have to apply for funding which may or may not be approved. I feel I should have the x-linking done privately at the Manchester center of vision (£3000 + consultation fees + tests if required) but they are recommending having the intacs done first (another £5000) and then the cross linking which I don't feel I can afford. My thoughts are to try and stabilise the progression with the x-linking then wait till I get seen on the nhs to see if I'm offered the intacts.
Any advice would be appreciated. Thanks for reading my post and sorry it went on a bit!!

[Andrew MacLean]

erfan

Welcome to the forum.

Many of us have been round the houses trying to find the right lens, especially during times when our keratoconus is progressing.

I can well understand why you were shocked to hear that you had been discharged and, like your GP, I am surprised that the original consultant did not refer you himself.

As I understand things, the Intacs procedure is supposed to be available in England (the NHS varies between the UK jurisdictions, and NICE only makes decisions that affect England (and Wales?)).

I am afraid that my own KC was too far advanced when Intacs and CXL became available, but I know that these two procedures are often offered in tandem. Practice seems to vary as to which is offered first.

Every good wish.

Andrew

[Lizb]

For information Mr Kaye at Royal Liverpool does both procedures on the NHS. I have been referred from the Preston area to Liverpool due to similar circumstances as you at my previous hospital. Nothing has been said about applying to my PCT for funding for Intacs (i went privately for CXL in London). Since seeing Mr Kaye I would recommend maybe trying to get a referral on the NHS to his lists - i went to my GP and asked for a referral to Mr Kaye at Royal Liverpool, he gave me a choose and book option. I got in very quickly at Royal Liverpool (within a couple of months earlier this year). Mr Kaye has never done Intacs after the CXL procedure (he normally does them the other way round), but i am hopeful that i can still have the procedure done when i go back later this month.

[Erfan]

Thanks for the replies guys...
The frustrating thing is that its suppposed to be available but its not being offered. Scared me when i was wearing the hybrids because i couldnt see my 1 year old son smiling from a couple of feet away. Unaided im ok to see a few metres at the moment but still really rely on these three year old glasses.
I was and probably will still have the x-linking done privately as i can hopefully get it done within the montth at manchester but i will definitely ask my gp to refer me to mr Kaye in liverpool instead and see how that goes.

To Andrew, if you don't mind me asking what procedure(s) have you had if you didnt have the option of intacs? was it transplants? Asking because my wifes brother suffered from hydrops about six years ago. Apparently woke up one morning with very cloudy vision in his left eye. Didnt know him then but i do know he had to wait forever for a transplant for the one eye. He still isnt able to see that well from it 5 months on but we hope that it'll still improve. Knowing what hes been through to be honest im kind of dreading having to have transplants if the time comes.
And Lizb, I think the whole funding thing was the consultants way of trying to get me to have it done privately so the trust doesn't have to pick up the cost. I work at Royal Preston so i do know for example, with laboratory referrals we recieve the tests we do are all charged back to the referring trust. Thanks for the advice about Mr Kaye in liverpool though. Wish you all the best for your next appointment, from what i've read there's usually no problem having the intacs done after x-linking which you probably already know. Let me know how you get on and all the best again.

Thanks again because i really cant show you how grateful i am for the info you've provided.