My grateful heartfelt thanks to those on here

[lulu]

My eyes are very bad at the mo, still waiting for the outcome of the autologous serum funding decision from my local PCT whom have now had it officially presented to them. It is very expensive in the UK and costs around 1660 for the first treatment and about a 1200 for subsequent treatments which all last roughly 3 months, so roughly 1440 for each treatment over the year which if you have Four of them, gets pretty expensive.
But I wanted to thank those of you whom over the time have been incredibly supportive with their kind personal messages to me, I am very gratefull. Hopefully I have tried to be helpfull too. I know that not everyone always does offer advice "in public", I dont always, particularly if I feel that people really need "one to one" help, just as I have. Little Mermaid I always look forward to your incredibly informative posts which have helped me enormously, and Jenny 2008 and others whom have been kind and helpfull at a personal level. But thankyou to everyone on here and to thank Rebecca for this life saver of a site. Just wish we all felt a bit better.
But thankyou again, wonderful work!
Lulu x

[sazy123]

My eyes are very bad at the mo, still waiting for the outcome of the autologous serum funding decision from my local PCT whom have now had it officially presented to them. It is very expensive in the UK and costs around 1660 for the first treatment and about a 1200 for subsequent treatments which all last roughly 3 months, so roughly 1440 for each treatment over the year which if you have Four of them, gets pretty expensive.
But I wanted to thank those of you whom over the time have been incredibly supportive with their kind personal messages to me, I am very gratefull. Hopefully I have tried to be helpfull too. I know that not everyone always does offer advice "in public", I dont always, particularly if I feel that people really need "one to one" help, just as I have. Little Mermaid I always look forward to your incredibly informative posts which have helped me enormously, and Jenny 2008 and others whom have been kind and helpfull at a personal level. But thankyou to everyone on here and to thank Rebecca for this life saver of a site. Just wish we all felt a bit better.
But thankyou again, wonderful work!
Lulu x

Hi If they dont fund it.

I got mine from the vissum institute in spain. You get 6 months (or 3, i cant remember) and it cost me 150 pounds. The flight and two days stay in a hotel was very cheap. There was a cheap hotel near by.

You can have it on ice and bring it back on the plane. Then refridgerate when you get home.

Just a thought.

This was the plasma stuff which is supposed to be more concentrated, and thus better, than normal auogulous serum drops.

[jenny2008]

good luck Lulu! i want you to at least be able to try the drops..so frustrating!! and thank you for all your help and private messages.. ) youre the best!

[lulu]

Hi If they dont fund it.

I got mine from the vissum institute in spain. You get 6 months (or 3, i cant remember) and it cost me 150 pounds. The flight and two days stay in a hotel was very cheap. There was a cheap hotel near by.

You can have it on ice and bring it back on the plane. Then refridgerate when you get home.

Just a thought.

This was the plasma stuff which is supposed to be more concentrated, and thus better, than normal auogulous serum drops.

Thanks Sazy
I have now been officially turned down as off today. Letter arrived from my opthamologist just briefly saying that the PCT had turned me down, so now to appeal. Its a ridiculous system as although we have put in more compelling evidence, we will now have to appeal it again. My optho thinks this is the appeal, but it isnt, even though it has already been before 2 different panels.
I am considering your info very carefully, this is very helpfull. If it comes to that, may I impose upon you further for more info?
I cant remember whether it helped you or not?? Its nice to see you back on the board after everything you went through, hope you are feeling better??
Thanks for your support.
Lulu x

[littlemermaid]

Lulu, do you fancy trying scleral lenses? Many of the big centres are doing these now, I think, though what kind of fit you'd get in UK compared to US I don't know (Keratoconus forums have lots of chat on this) x

[lulu]

Lulu, do you fancy trying scleral lenses? Many of the big centres are doing these now, I think, though what kind of fit you'd get in UK compared to US I don't know (Keratoconus forums have lots of chat on this) x

Would I? Not half I would'nt. So that is what I am going to ask my Optho on Monday. He is going to love me, isnt he!
I have often wondered about these, I know that they bandage the eyes with them following surgery at times.
Will let you know what he says, prob come down to money but what the hell, I will ask him.
Lulu x

[littlemermaid]

I often think of Lulu and pray she managed to get Sjogrens treatment funded, even though her ophthalmologist supported it, and other areas pay for it where there are specialist units. Here's some good news on how RNIB have intervened with CCGs to get meds funded for macular degeneration http://www.rnib.org.uk/clinical-comm...b-intervention. Also, what reason is there that blood products should be so expensive and under monopoly.