doxycycline UK

[robinzb]

Health secretary in Downing Street? let us know the result

[sazy123]

Complain to the royal college of othmalologists (sp), but id complain as well about the general lack of knowledge of dry eye as well.

Could complain to NICE (like they would listen). dont know who else.

general complaint about health ( heath secreatry).

[brd888]

Complain?

Stella,
What do you want to complain about and to whom?
Bruce

[stella]

I want to complain that dogs can get cyclosporin eye ointment in the UK and human sufferers of DE cant !!!!!!!????
I also want to complain that we do not have access to most of the treatments and drugs our US fellow sufferers have eg restasis;doxycillen eye drops ,erythramycin eye ointment,autologus serous drops ,to mention some of the main ones - I'm sure you can add to that list - To get one's GP to perscribe even oral doxy is like pulling teeth, and even then it is a major piece of detective work ie to get it in a low enough dose for MGD sufferers ,and YET it is the mainstay of treatment for that condition??
I want to complain at the ][B]lack of interest, knowledge and practical help[/B
there is amoungst the medical profession in general and opthalmologists in particular, in the subject
I want to complain that there seem not to be enough resources in GB to help DE sufferers
Who do i complain to - I hav'nt yet decided and wonder if
1 It is worth while
2 Is it counterproductive ie you just get labelled as a trouble -maker , or a nut- case,or a nuissance ?
3 I dont know if i have the bottle to start a campaign
4 Is venting and complaining the best way to get anything done ?- I mean u can end up getting people's backs up and they just say - Here she goes again!!

Thanks - that has helped me clarify and vent my thoughts and feelings
Stella

[sazy123]

hi stella,

if your interested i was thinking about making a dry eye association group in the UK, on the advise of kakinda who runds an association in france/portugal.

I have no idea where to start but kakinda will give advise and maybe give space on his website for the UK. Im not to keen to do it alone, would be better to get others on board in the UK, pratstar are you interested? Aparently toril is doing the same for norway. We have no such thing in the UK.

He says doctors etc listen more to organisations rather than individual people/rants, one person doesnt do much good. You get alot more respect for the condition with an organisation. His organisation has gained more respect for dry eye. i.e Better access to clyorosporin etc.

I dont think the situation for dry eye in the UK will ever improve unless patients take action.

[Toril]

Hello, Sazy!

...yes...I am working on a page for Norway now. I have been describing how it is to be Norwegian and have dry eyes, what problems you meet, treatments you don't get, doctors with little knowledge, reimbursement-systems etc, and I have also made a list of all tear substitutes available in Norway (and added if they contain preservatives or not and the prices..as there are big price differences). I seem to be all alone here in Norway with this...of course I am not..but I can't seem to find anyone else at the moment,...so I decided to start writing this myself. I've been writing a bit now and then,..when I've felt ok enough to write,...so I've not been stressing. But it feels good now that I have started working a bit with this. I'll add more information later on to the page when I come up with good ideas of things to write.

I think it's a good idea that you and others in the UK can work together and write something similar and be a part of Keratos too. I thought it sounded scary in the beginning, but when I started writing it wasn't that scary after all...I did a little now and then...and collected information I thought was important. Later I can write you a mail with a short summary of the exact things I've been writing about if you want.

Greetings from Toril

[Guest]

Sazy

I welcome your efforts and would be happy to do what I can to get some more coverage of this condition in the UK.

I have simply been taking a little time out lately, I am trying to work on the theory that if I don't spend all day searching dry eye websites than it may take my mind off my problem and make it less prominate - I must say whilst a great theory I have, it doesn't seem to be working too well.

Please email me and we can communicate about how we can get this started.

I am starting back on the Doxy today and am also on an anti-bacterial eye drop (does not contain BAK).

I found the doxy helps as long as you keep up the warm compresses. I have considered going back on Restasis as well but I am just not sure about it.

I have quite a stash of Restasis that I must get around to using.

Warm regards

Ian

[sazy123]

Hi pratstar.

I will give you a PM about this and speak to kakinda, its up to us what scale we ant to do it on, but starting small first and working up is probaly best.

I think it is a good idea. I know what you mean about endlessly searching the net for something. When i really depressed with it the internet really helps me. Staying away from it makes me feel worse coz then im in the world where noone has this problem, and it gets me down.

The only thing is im not sure how common moderate/severe dry eye is in the UK, i personaly dont know anyone.. Maybe elderly, who accept it better than we do, as a meledy of being old.

Gotta go to work now, and struggle. i will PM after.

take care

[stella]

Yes, definately interested - just tell me what to do
I'm not exactly a computer bofin, more of a silver surfer , but will back you up in anything you do so long as i know how
Stella

[stella]

Hi Sazi
I think i have replied to this in the wrong place
My answer was YES DEFINATELY - just tell me what to do
Stella

[sazy123]

Stella, IAN: i have sent you a PM.

Yes toril that would be great if you could send us a summary of what you have written, just send me a message when you have it together.

Chears S

[brd888]

Stella,
I agree with you but I think getting any change in healthcare impossible. As we all know the NHS is underfunded. How many times have you heard of postcode lottery etc when folk are trying to get life-saving drugs?

I've tried a couple of times to get more people intersted - I got the Sunday Post journalist started, I emailed the head of the Scottish Optometrist association but got no reply and I've tried to get my local Optometrist interested but he only wants to know when I find a cure

I totally agree with your concerns too. I hate the idea of becoming an irritating campaigner. I've avoided trying my GP again about DES as I feel I would be wasting time bcoz I know there is nothing they will do.

Maybe you should avoid "complaining" and try a more awareness raising approach. I would list all these treatments which we don't get etc. Maybe see if you can get your optometrist interested? See if you can contact the College of Optometrists?

One thing I remember from the Post story was the Opthalmologist who dismissed that dry eye care was neglected in the NHS.

Bruce

[sazy123]

Brrd:

Thats why starting an association is a good idea, because health authorities dont listen to individuals. Keratos has gained attention in france for dry eye, and they collaberate with researchers for the cause. As they are already established in france we will be a branch like a 'european dry eye association'.

I share your thoughts re the NHS, but i dont think its impossible. The other day i found nhs guide lines which appear to be different from the ones i saw a while ago:

http://cks.library.nhs.uk/dry_eye_sy...whole_guidance
bottom of the page:

What other treatment options are there for dry eye syndrome?
Options available in primary care
-Acetylcysteine eye drops are an effective alternative in treating people who have problems with sticky, viscous mucus on the eye

Options for secondary care interventions
-Parasympathomimetic (cholinergic) secretogogues and mucolytics: pilocarpine
-Surgical treatments for severe disease or poor compliance include plugging of the lacrimal puncta
-Ciclosporin A
-Topical corticosteroids

I think most people would be happy with an improvement privately as well even though it means paying.

At the end of the day we can rant all we like, but ranting alone will not change anything.
If you want to help with this, give your testimonal etc please PM me.

Thanks