My first private consultation

[jlg_uk]

Bloody Hell. Thanks for that advice - very useful and important for those of us who live in the UK.

I sometimes wish I could transfer or share how it feels to live with DES to the Doctor for a day/week - I think you'd get a lot more understanding then!

In fairness to the NHS, after a poor initial start ("migraines" my arse), I've seen some people who are at least trying. I might not get anywhere, and I reserve the right to change my opinion if the NHS becomes distinctively unhelpful though.

It's frustrating when your eyes look OK (my anterior margins and the white of my eyes are OK), and professionals can't see what you are moaing about, but you know it's severely affecting your life. Many people on here have thoughts relating to exiting this existence, and whilst I have no immediate plans, let me say that the idea of 40 approx years of DES suffering does not appeal. This is _not_ a minor issue for many DES sufferers.

Have you considered escalating to your PCT?

[irish eyes]

I wrote a letter to my GP to see if I could discuss it with her as I feel so hacked off. I'm unsure what to do but I think I need a few days to calm down because I feel so angry.
The NHS were always attentive when my iritis was severe but when the attacks came to be less frequent, I was `reminded' of what a lucky person I was and to `count my blessings' that I still had sight in my right eye. Of course I am relieved - BUT I didn't see that as meaning I had to contend meekly with everything else in eternal gratitude and not complain. Why didn't they enter the Church if they want to deliver sermons on the `human condition'? (Was I being greedy for wanting to have more than one eye complaint treated?)

I have had Dry Eye for years and I cannot say that I have got used to it at all because it impedes so much that I want / need to do. The only thing I can do with ease is to lie down with my eyes shut. I hope for the sake of all the young people who suffer this malaise that something comes up soon.

[sazy123]

Hi Jlg

Isn't the NHS brilliant? I have seen a few people in a private capacity over the years but remained `under the wing' of the NHS. My dry eyes were always dismissed as a `mere nuisance' - like many posters' experience. As I also used to suffer frequent bouts of iritis - the Eye Dept felt like my second home.

However, the dry eye condition was deemed untreatable around 3 years ago, and the Head of the Eye Dept wrote to my GP to say so - adding that my case was not that severe anyway and he had seen far worse. I had been prescribed drops and if they didn't work, it was just unfortunate. I was signed off.

In desperation recently, I asked my GP to refer me to see someone privately. I saw him last week. This chap hadn't seen many eyes as bad as mine and said it was little wonder that the pain was so severe. Private prescription for Cyclosporine will cost £480 for a months supply. When I asked the NHS Eye Dept about Cyclosporine - the idea was scoffed at. `Don't tell us our job' attitude.

My advice - keep in the `loop' of the NHS. I feel I have been left alone to cope with the problem and it has become worse as a result.

£480.

I would Tell them no thanks i can get a rx online for a fraction of that www.edrugnet.com

Its no wonder people in the UK are forced to do it this way is there!

[sazy123]

I wrote a letter to my GP to see if I could discuss it with her as I feel so hacked off. I'm unsure what to do but I think I need a few days to calm down because I feel so angry.
The NHS were always attentive when my iritis was severe but when the attacks came to be less frequent, I was `reminded' of what a lucky person I was and to `count my blessings' that I still had sight in my right eye. Of course I am relieved - BUT I didn't see that as meaning I had to contend meekly with everything else in eternal gratitude and not complain. Why didn't they enter the Church if they want to deliver sermons on the `human condition'? (Was I being greedy for wanting to have more than one eye complaint treated?)

I have had Dry Eye for years and I cannot say that I have got used to it at all because it impedes so much that I want / need to do. The only thing I can do with ease is to lie down with my eyes shut. I hope for the sake of all the young people who suffer this malaise that something comes up soon.

Yes i hope so too, im the same, my eyes burn all the time and all i want to do is shut them, you cant live life much with closed eyes!

Ive just tried some chloramycetin eye ointment OTC mentioned in this thread and it gave great relief from burning for about an hour.