INTACS and the NHS

[twr]

Hi Im a newbie so please be gentle... i know we're going over old ground but i could do with some advice on a few points so i hope you can help. I have found this an invaluable source of information and inspiration over the last 4 years and long may it continue!

To cut a long story short I am 23, have had rgps for 2 years now and am starting to struggle even with my lenses. KC in my right eye has progressed quite quickly and i think its time to look at action, through difficulty in reading the KC has already cost me a post grad course, and i have had to withdraw from a teaching course.

My last experience of eye specialists, 2 years ago, was not good, referred through optometrist to gp to my local eye unit in North Yorkshire, (think ITVs The Royal) merely told me i had KC and to come back when i fancied a graft.

I now seek further advice re INTACS (right eye) and also cr3 (left eye) am going to go to my gp and ask for another referral. My optometrist isnt really sure:- he has only seen KC a couple of times before.

it is here that the details become blurred (if you excuse the pun)

1) I go to my gp:- do i have to be referred to my local hosp or can i be referred anywhere ie Leeds/ London?

2) Im aware that NICE guidelines now make it easier to obtain INTACS...but is this still difficult? do they all know what it is? if they are unmoved do i try and move to another health authority or shall i just be persistent? Where can actually carry out the op? i assume i will have to go to a bigger hosp.

3) Is it just easier to forget about the nhs, sell the family jewels and go private all along? if so do i just pick a hospital and book a consultation whenever and wherever i choose? any reccomendations?

4) In the case of c3r (i feel it may benefit my left eye which isnt as advanced) do i just stick to private and book a consultation with a hospital of my choice? again anywhere people reccomend?

sorry for asking daft questions, but its an area i feel needs clearing up, particularly at this time of seemingly brisk progress in treatment, and likewise brisk progress in my KC.

cheers!

tom

[Karl R]

Hi Tom and welcome to the forum.

In answer to your questions

1. Theoretically it is now possible for you to choose where you have your treatment, practically it may not be possible especially if your GP/LHA does not have direct booking access.

2. The NICE guidance now makes it easier for a consultant to go to the local authority's finance board and get the funding for the INTACS procedure, however the consultant must be trained in the procedure and certificated before they can operate. This will still create a hit or miss situation as to where the procedure is performed in the NHS, long term more centres will probably offer INTACS.

3. It may be easier to go private, but bear in mind that if you do it is possible that you will waste your money - see later

4. AFAIK C3R is not widely performed on the NHS as it is still in the experimental stage, as was INTACS up to last year. You would probably best going private for this. The only place I can think of is in East Grinstead and is performed by Mr Daya.

Referring back to my answer to 3.

Please remember that INTACS are only suitable for a small number of patients. Governing factors include, but are not limited to:

Severity of KC
Corneal thickness
Previous history of contact lens intolerance
Likely prognosis of gaining useful sight

It may well be that you've gone ahead and booked a private consultation only to find that you are not suitable for INTACS.

Speak to your gp, research the "local" authorities on the net, before deciding one way or a nother.

I wish you all the best and please keep us updated on your progress

Karl

[Anne Klepacz]

Hi Tom and welcome!
I'm really sorry to hear your KC has affected your further studies. Colleges and universities are much better these days at offering help to students with any sort of disability, as our student members of this forum will tell you, and KC really shouldn't be a barrier any more. So don't give up on your dreams just yet!
Not much to add to Karl's excellent advice, except to confirm that Intacs are now being offered on the NHS at more hospitals and that for C3R you should be able to find a thread by Riz1 which lists the centres that offer this and compares prices. A few hospitals are also now doing trials of C3R, so again in the next few years this treatment will probably be more widely available.
Are you already on our postal mailing list? If not, do send me a PM with your postal address, or e-mail me anne@keratoconus-group.org.uk and I'll send you the various conference booklets/DVD. You'll also then be sure of getting our 2007 conference DVD later this year which includes talks on Intacs and C3R
All the best
Anne

[Eddie S]

Hi Tom,

Welcome to the site.

Just wanted to say straight off the bat, they are your eyes and its your health. If you don't get the help you require then go elsewhere. Stomp your feet, shout and scream! Do whatever you need to do to get the level of care you expect. There are a lot of professionals in the UK who do understand KC and understand it well - I've been lucky to find them, as have others here.

Right ok, rant over

If it helps, and I dont know how much it will, but i'm now on the waiting list (op November) for intacs at Leicester Royal Infirmary. It is a teaching hospital so it may well be as Anne says, I'm benefiting from this. Interestingly enough, I was put forward for the op before the NICE recommendations were finalised.

Also -

My optometrist isnt really sure:- he has only seen KC a couple of times before.

All of the professionals I have seen now and before are very familiar with KC - its not a case that they've seen it a couple of times before, they currently have at least double that they are currently 'treating'. In the past, my specialist at Brighton (where I used to live) got me trying new lenses from the US, put me through dozens of different lens types and didnt give up on trying to find a good lens fit for me.

I am now only walking towards Intacs because after 15+ years of wearing lenses, my eyes are starting to reject them. You may have more luck trying different lenses under an NHS specialist - many of us here are in lenses.

Ok, extended rant over. Good luck!

Ed

[ashley wilson]

my advice would be to go and see about getting c3r in your good eye asap to stop it progressing.
i have 6/5 vision in right eye unaided and had c3r on it last year and am so glad i did. KC had begun to progress albeit only slightly and and since c3r no progression. on my left eye my vision is a lot poorer. i had an intac in it earlier this year and there was an improvement ( from 6/60 to 6/12 ) and it can now be corrected with a soft lens to 6/6. however intacs are not always successful in improving vision and i think i'm one of the lucky ones. i have just had c3r on my intac eye and really think you should think seriously about this asap. what is your vision like in your good eye?? my optham is david o brart in london and he is regarded as one of the top cornea guys about. http://www.davidobrart.co.uk i would recommend him to anyone. unfortunately c3r is not available on the nhs anywhere but intacs now have approval and are available. hope this helps.

[twr]

HI, and thanks for all of the useful replies!

It's hard to know where to begin. Karl-very concise answer- thanks thats cleared up a few things i was not sure about.

Anne and Eddie thanks too. In fact i possibly was a little harsh about my optmetrist- he has been very useful, and we had to try a few lens types before we got it right. (i had worn soft lenses since i was 10, glasses from age 5). Im finding the hard lenses difficult though- have been trying different lenses, cleaners, solutions, saline drops, wearing massive sunglasses and so on....still i find it hard to keep them in.

As for Ashley's reply- very useful- i think this fits into my way of thinking exactly- to do something ASAP to hopefully slow progression. Vision in my left eye is ok with just glasses, but i have noticed some distortion beginning to appear. I wish i could be more precise with figures- something for me to research there. I think i will look into c3r right away- starting tomorrow. I will also check back and try to read as many old posts as possible.

I went to my gp today- and he requires a letter from my optometrist to refer me to the eye clinic- however the waiting list is 3 months so i dont know what to make of this. Perhaps wasting money and going private is the best course of action after all.

Not sure if i am entirely comfortable with the wait and see approach- it may be the best way for most, and im sure many are happy with just lenses, but i would rather try as many differnt avenues as possible before contenting myself that that is the only way.

Thanks everyone and i shall keep people posted as to what happens and if i think of any more questions i will come back and shout out loud!

thanks

tom!

[Karl R]

however the waiting list is 3 months so i dont know what to make of this.

That's quick! It took 5 months for me to get an appointment from GP referral, a further 2 months to get an appointment at St Paul's in Liverpool after the local eye unit referring me, and 13 months wait before I had INTACS done.

[Andrew MacLean]

twr

Welcome to the forum.

Just to underline what others have said: you have a perfect right to take control of your eyecare. Ask propfessionals what options are available to you and what they would reccomend at this stage of your contition. If you do not think that your local hospital is geared up to meeting your needs, than ask for a referral to a regional centre of excellence. (I think that NHS funding is different in the four jusrisdictions, but in Scotland this can be done easily and without cost to the primary healthcare trust or any of the hospitals involved.)

All the best

Andrew

[helen jones]

just out of interest - the London Centre for refractive surgery do initial assessment consultations for C3R etc free of charge with no obligation to make a decision to have anything done
Helen