UK Keratoconus Self-Help and Support Association

Hi folks,

Quick straw poll for those of you who have had grafts.

How long did you have to wait between seeing the consultant and having the operation?

I am trying to get a vague idea of how long the wait is as no one at the NHS seems to know.

Cheers

--Paul
--2 months already

Paul

NHS - anything from 2-9 months (although I beleive the realistic wait in London is about 16 weeks)

Private - anything from 3 to 28 days

J

Hi.

I live in Sacandinavia. Grafts are almost 100% a matter of public health care, grafts are finenaced by the public health authorities. Only one private clinic doing this in my country. Corneas coming from either Scandinavia or USA.

That means you will get a graft in an emergency sitiation the same day or the day after. Otherwise there are in general rather big queues to have a new cornea. The problem is the lack of donor-corneas. Recent trade with cornea-banks in the USA have shortened the waiting-lists dramatically.

There is also, as I have mentioned, increasingly more post operational corrections on grafts. New lasik sience gives hope for those with too big post op. correction problems to use contact lenses or glasses

I had my first graft in 1998. Then waited for the next from 99 to 2005, since I could use a Rose K contact lens until june this year.

Once again this may be a case of post code lotteries and surgeon availability.

Both mine were on the NHS back in 1989 and 1990 and I only waited a maximum of 4 weeks!

jayuk wrote:Paul

NHS - anything from 2-9 months (although I beleive the realistic wait in London is about 16 weeks)

Private - anything from 3 to 28 days

J

Hmmm

That implies that the wait is not based on the cornea availability but instead surgeon availability on the NHS.

Which consequently suggests to me that the private sector have a priority on corneas.

This makes me a little bit browned off.

Oh well

Paul

To a degree that is correct.....availability is an issue on the NHS and thats through the whole cycle from being assessed for the graft, to be given a date...which can take upto 15 months (thats how long I would have had to wait from the day I needed a graft to getting one)..

However, there are areas and hospitals where it is performed quicker...as G said...Post Code Lottery!

GAHHHHHHHH!

Just phoned the opthalmic suite at the K&C Hospital out of curiosity to find out where I am on the list and ask for a vague estimate of time to wait.

Apparently I am not on the list yet as the paperwork hasn't been filled in at the consultants end.

So I phone the consultant and ask whats going on and they say the paperwork has been done.

This way the last two months have been a complete waste of bloody time.

Lets say that I am more than a little bit browned off.

Sorry about the rant.

Paul

Paul,

I waited 6 weeks for my cornea - and that was done privately. It was worth noting though that period spanned Christmas. I could have had it in 4 weeks, but the additional delay was to ensure that the hospitals etc. were back on full cover post Christmas "just in case".

Hello there

On the NHS in Wales i am kinda still waiting! Has been about four years now, and counting. However i decided in August to go private after so many eye problems, and was booked in for just under two weeks. A cancellation came up though so i only had to wait a week!

Hoping it all goes well!

Sweet X x X

Oh I am sure it will sort itself out.

I am just browned off that it took me phoning up and being nosey for someone to realise that some of the paperwork has left the consultant and not arrived at the opthamic suite in the hospital.

OK that has wasted two months which in the grand scheme isn't huge, but if I hadn't called it could have been considerably longer.

So next Friday I have been advised to phone again and see if the paperwork has arrived and try and find out where I am on the list. Notice the way that I have to check up on the paperwork being sorted?

They did tell me that the people longest on the list have been on it since September, so by reasoning it out it is around a four month wait in this area - as Augusts lot have been/are being done (according to the waiting list wallah at the K&C). So this is a good thing.

However dependant on the urgency assigned by the consultant (and whether I am bumped up the list due to the paperwork foulup) it is difficult to say until the paperwork shows up where I will be assigned - so at worst a four month wait, hopefully only two - possibly less if deemed urgent.

Of course it will never be quite that simple - but not to worry eh.

So now I have calmed down and finished trying to kick the office door off its hinges (I was a tad annoyed yesterday I admit) I am relatively happy now I have thought things through.

Thanks for the reassurance guys.

Paul