IF or how could this affect us?

[space_cadet]

Just noticed this news piece

http://news.bbc.co.uk/1/hi/health/8177826.stm

[Andrew MacLean]

This has been brewing for some time, now. Maybe it's overdue.

The only advantage I can see in any of us opting for a private admission to hospital for transplant surgery is that we can pick the date most suited to our diary. That said, I think that my own surgeon went out of his way (each time) to book me in on a date that was okay for me.

Andrew

[Lynn White]

As far as KC is concerned, I think that the "availability" of graft "material" is decreasing anyway - this is what I have heard when I have been lecturing at hospitals this year. So it may be a case of too many people chasing too few donors for too long and it is all now coming to a head, as Andrew says.

I have been involved with KC for many years and am definitely sensing a difference in attitude. At one time, grafting was seen as the best answer, whether you had scarring or not. That gradually changed to more of a "Well - there is always the safety net of grafting" to now, more of an attitude to avoid grafting if you can and to find ways to extend contact lens viability. And this IS related to lack of donors.

With advent of new technologies, such as CXL, INTACS etc, I think the emphasis should definitely be to look after what you have first and foremost. I feel quite strongly about this: I see many patients in practice who for 15 or 20 years have gone along not really even seeking basic contact lens aftercare because to do so might mean they find out something they really didn't want to know about their condition. Or simply because things felt as if they were OK, so why bother?

Often it is the fact they suddenly fail the driving test standard that pulls them up sharp. This usually means scarring from lenses that now fit badly because they had not been changed often enough and often the only option is a graft - but this takes a long time to settle and meantime, working life can be affected. If graft donor numbers are slowly going down for whatever reason, then even the possibility of grafting may become a problem.

So if you are reading this and have not had a check up for a long time... make sure you get regular care!

Lynn

[Andrew MacLean]

With advent of new technologies, such as CXL, INTACS etc, I think the emphasis should definitely be to look after what you have first and foremost. I feel quite strongly about this: I see many patients in practice who for 15 or 20 years have gone along not really even seeking basic contact lens aftercare because to do so might mean they find out something they really didn't want to know about their condition. Or simply because things felt as if they were OK, so why bother?

Lynn

I deliberately postponed my first graft until I had nothing left to lose! My position was, if I can see with lenses, at least I can see. It is in the nature of any surgery that there are no guarantees of success. i figured that if I could manage with regular checks on my progress by the contact lens department at the hospital, then they would know when the time came when I'd need some other sort of intervention. They did!

Lynn gives good advice. I think that the increasing shortage of donor corneas may be due to the refusal of many people to allow their relative's eyes to be used for transplant surgery. They will allow all sorts of things to be taken: veins, hearts, lungs, livers etc, but not the eyes.

Andrew

[GarethB]

In the past i have been involced in promoting the donor cards which always amazed me that you had to tick an extra box to allow coreas to be donated.

I always pointed this out to peple and pointed out how much it had changed my life. Some people still refused saying they found the idea od somone looking through their eyes repulsive. Made no difference if you pointed out it was only the clear bit at the front. Others on religious grounds told me that they felt it would allow others to see into their sole.

Poeple have many strange ideas.

[space_cadet]

it honwt it frightens me a lot as when I was dx I was told geaft is only option. That was in may, got 12days till fingers x I see specalust. Even in the 3 months Ben's noticed deteroation in my vison.

Sorry for typo's on my fone on hen weekend sharing a room with beat friend who's snoring for the entire uk!


X

s

[Sweet]

I have emailed my surgeon to ask his opinion as I went for a private graft with him.

He has replied saying that 'he is not allowed to use tissue on patients who are not NHS entitled, and that he imports tissue on patients who come from abroad'. This is a rule he says which has been in place for over 10 years so I would imagine that all surgeons doing private cases are needing to abide by this as well.

I guess there still is the debate about those who have money being able to pay to 'jump the queue' but they would be UK citizens only.

The only reason that I had a private graft was because I was desperate having been off work with eye problems for seven months. I had a big tax rebate and wanted to use it for something important and not waste it! I also wanted to pick the surgeon who would do the graft as before my sick leave I wasn't looking to have any surgery. I would never be able to afford to have anything private again and nurses do not get health insurance, so it seemed like a good idea at the time as I was already technically 'blind' with the other eye due to a corneal infection which refused to heal.

Hoping that those who need a graft are able to get the help they need. Loads of love Claire X x X

[rosemary johnson]

As regards diffrence in going private......
My mum offred to pay for my graft to be done privately.
Mother's motiations something could probably wirte an essay about. no t here.
Was appalled - haven't been carrying a donor card all these years for someone with the readies to jump queue to get my bits..... blah blah blah.
Told mother would be no benefit as same people, same facilities and queue governed by available of bits of dead person.
Glad to say she dropped the subject.
Not sure now whether I'm glad...... I have a suspicion that I was "puting up with too much c**p" from medics because "It's the NHS" and shouldhave expected better; and if was having bill to pay would have decided not paying for this (or not letting my mum pay for it). ANd walked out and gone home and not had total disaster it's been.
On the other hand - suppose I had gone ahead.....?
I fear my mother is not the type to have refused to pay bill in view of graft being such total disaster.
THe cynic in me (who? what? me? cynic?_ says it might have sharpened the medical mind remarkably jad they had a bill bieng bounced because of the disaster they'd caused - or bounced till they did something to sort it out.
My father might.... it's at times like this I wish my father were still alive and chasing the things I don't have the strength and health to cope with.
This is all a very lop-sided way of looking at the issue, I know!

I heard something about this on the radio news and was glad = in the same "I haven't been carrying a donor card all these years....." sense. I wonder what impact it might have on donor card carrying?
Rosmeary