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**sazy123** · 29-Mar-2006, 07:56

I would like to be proactive and set up an organisation (kertos UK) as a starting point-getting cyclo more readily available, but i cant do anything till after my exams which is end of may, then i am taking a year of absence from university (very glad i can do this). I will be getting cyclo the fastest way possible, im not waiting for the NHS to get thier act together, but i still want to help others get it here and change the situation.

I have asked one doctor on the NHS for it, well actually restasis, but she said no, and it is quite clear that both docs i saw had no flexability with this in the NHS. Plus they dont know much about dry eye as it is. They believe drops are suffient.

2. You told me that there was cyclo drops for intern patients. Anyway, I'm sure someone produces cyclo in the UK ... how else would you prevent corneal graft rejections in the UK? Usually this cyclo is at higher concentrations such as 2%... but once the cyclo is produced I believe it can't be that difficult to produce bottles in lower concentration doses such as 0.05% -- as for Restasis.

I know they could do it in this consentration, but the question is are they willing to do it? they might already do it, i don't know. The problem is they don't understand the benefit of giving it to dry eye patients on the NHS.

Can you really look into this and be certain you can't get cyclo or convince them to give it to "external" patients... because this is precisely what happened in France in the hospital where i get my cyclo. Now they provide cyclo to at least 500 external patients regularly.

I would love to do this, but i have no idea how to go about doing this, if you give me some advice and tell me how you or others managed to make this happen in france that would be good..

As far as i can tell i see two problems:

first problem is 'Where are all the dry eye patients in the UK!' the only two i know, who really want better treatments are on this site. I can only assume that the others are elderly and don't know how to use the internet, or they are happy with the treatments available (plugs and drops) and arn't on the internet looking for better ones-If they had eyes like mine i would be surprised if this was the case! If there isn't many people wanting this drug i think it would be hard fighting a case. So if youre there speak up!!

The other problem is (which also ties in with the first) that the NHS have a very tight budget and are already in deficit, we all hear on the news about the drop heceptin not being available for a type of breast cancer for patients that could save their lives.. They are winning the right to it, but not with out a fight, I think its the same scenario with a lot of innovative new treatments, research is advancing better treatments are available but there isn�t money to fund it on the NHS, so they can't stay up to date with the times. I don't know why we don�t cut the losses and have a social health care system like Europe.. dont want to start any debates, just my 2 cents worth! .. Despite this im no expert, but im still willing to try.

There may be more chance getting it available privately, so people have to pay for it.

So if you give me some ideas that would be great and i will look in to it after exams finish, and any help from other UK dry eye sufferers interested?

**kakinda** · 01-Apr-2006, 06:55

Sazy,

It�s great if you can start something in the UK and hopefully someone in the UK will help with that.

Well, there are no guidelines on how to go about this dry eye issue in all countries of the world. � all cases are very specific but most comments you made on the NHS (deficit, no money, lack of will, no knowledge of dry eye treatments) are globally applicable to all countries I have lived in (quite a few) and including France with the S�curit� Sociale or globally the Ministry of Health. Still, my experience may not be applicable to the UK at all�so I�m afraid that you may have to find your own solutions for the UK.

However, I�m sure that you still have to try, try to call the responsible person in the hospitals, someone in a ministry department� and try to convince them. Nothing will happen by itself� if dry eye sufferers don�t take a stand. Try researchers working on ophthalmic issues, try ophthalmic centre� write letters to the ministry, to your parliamentarians if you need to.

So the first thing you must do is identify who should you talk to get this done? And in the meanwhile try to gather a group of proactive people to help you (either dry eye sufferers or people who care for them� yeah, you�re going to have a hard to time with the latter category!)

I have the same problems here in France, sometimes I don�t know who to talk to, sometimes those people don�t listen� but one has to keep on trying� if you accept no for an answer that�s precisely what you are going to get. The NHS won�t get its act together unless someone presses them to do it�.why should it unless you really start to bother them or that you have some kind of leverage on them� unless dry eye sufferers get their act together too!

And, I�m sure there are more dry eye sufferers in the UK who are not satisfied with their treatments. Still, only a limited percentage will be proactive� so what, if they�re stupid enough to think that things will be solved by themselves or they are simply fatalists�. Well that�s their problem.

I think it�s precisely because dry eye sufferer behave like sheep, awaiting for some miracle to happen, most of the time that we are treated the way we are and nothing happens.

You know Sazy I spend half of my time thinking I�m chasing windmills �most of time on my own (no dry eyed Sancho Panza to keep me company in some of my initiatives) but once I a while something works out� I can accept to fail but not not to try.

It�s a challenge certainly � but it�s better challenge than accepting this ****** up life as it is!

Take care,
Kakinda

**np1981** · 19-Jun-2006, 05:59

Quote: So if you give me some ideas that would be great and i will look in to it after exams finish, and any help from other UK dry eye sufferers interested?

I'm a dry eye sufferer in the UK and had little or no success here, I'd be happy to get involved in anything that will help those in the UK get better treatment.

**kakinda** · 21-Jun-2006, 03:21

and Keratos Europe would be glad to have an English dry eye pro-active counterpart...
take care = take a stand

Kakinda

**Helen26** · 31-Jul-2006, 04:22

UK Dry Eye Sufferer

I too am a UK dry eye sufferer. I am sure Restasis would help me because I have a lot of inflammation in my eyes and the short course of steroids I took worked wonders. However, I haven't mentioned it to my opthamologist but I know what the answer will be. The NHS seem to think that drops and plugs are sufficient!! If there is anything I can do to help I would be more than willing to get involved.

**sazy123** · 31-Jul-2006, 08:17

Helen you should ask them for it anyway, i always think the more people let them know that they are not satisfied with the treatments-tears and plugs alone the better. They too told me that drops and plugs are sufficient for dry eye, but i made it clear that they were NOT sufficient at all for me, they didnt work for one thing. They just told me that most people get on with it using this. But i think most people are older and they dont realise theres anything better out there!

Not that it did me any good, but i still felt better for expressing how i think the options they gave were not good enough. It enoys me coz Im the one with dry eye not them, i think i would know if it was suficient or not.

You espically dont want to just put in plugs if youve got loads of inflammation in your eyes. coz the inflammation has more time to interact with the surface and doesnt drain away, you should really get it under control beforehand.

Have you been to anyone else or just on the NHS?

**Helen26** · 01-Aug-2006, 03:37

Hi Sazy

It's great to hear from someone else in the UK who understands what I'm going through. I had a severe allergic reaction to something (not even entirely sure what it was, a new brand of make-up I think) and it destabilised my tear film. That was 6 months ago and since then my eyes have been getting progressively worse. It took me 3 months to get to see a consultant -I kept going back to my GP because I was in so much pain but she just kept telling me to put the drops in (hypromellose!!!) and get on with it because it's very common especially with older people (but I'm only 33!). Anyway, when I did get to see the consultant he put me on a 4-week course of FML (as well as Celluvisc - didn't think much of this!!). After 3 days the steroids kicked in and my eye felt fantastic - no pain at all and it looked like my tear film was actually being restored (the dry spots disappeared). When I went back to the consultant a month later he put plugs in my lower tear ducts and told me to taper off the steroids. For the first few days my eyes felt even better due to the extra moisture but then the inflammation came back and I felt my eyes were producing even fewer tears. So, I upped the steroid dose again and at the same time started using Theratears (saturation dosing 4 times a day). I think the Theratears are working because over the last few weeks I have managed to taper of the steroids and have now not used them at all for over a week. I'm also taking Theratears Nutrition (6 capsules a day) and Devils Claw (which I've been told helps with inflammation).

I'm not due to go back to the hospital until October but I will mention Restasis when I do. But I think I'll have a battle on my hands - the consultant won't even admit that there is a problem with my tear film or the extent of the inflammation, he just simply said that my eyes weren't producing enough tears. And I rang an international pharmacy and they said Restasis costs �200 per month to import - so there's not much chance of the NHS paying for that. The thing that worries me most is that I know there are lots of drugs in the pipeline that will hopefully be approved over the next few years, but how long will it be before we get them in the UK. I think I might have to emigrate!

I haven't tried anyone private yet because I'm not sure what more they will be able to offer. But I have thought about either going to see David Crystal in Edinburgh or Michel Guillon in London (I live near Manchester so I could go to either). Have you been to see anyone privately that you could recommend?

Sorry I've gone on a bit but I've had no-one to talk to over the past 6 months who even vaguely understands.

helen

**SusieD** · 01-Aug-2006, 07:49

Hi - Im also from the UK and can sympathise with the issues you face, believe me!!!

Is that David Crystal from Edinburgh eye tests, the optometrist?

**np1981** · 01-Aug-2006, 08:11

Originally posted by HelenBaldwin

I kept going back to my GP because I was in so much pain but she just kept telling me to put the drops in (hypromellose!!!) and get on with it because it's very common especially with older people (but I'm only 33!).

I used to go back to my GP constantly too, in the hope that if I pester them enough they might do something more. But in the end GPs are really useless in such circumstances, one even got irritated with me for going back so often. Unfortunatley I got so p***ed off here in the UK I went abroad for an opinion.

**Helen26** · 01-Aug-2006, 08:27

Where did you go abroad? Has anything helped?

Susie - yes, David Crystal the Optometrist in Edinburgh. I have e-mailed him a few times about the availability of certain drops in the UK and he seems to be very knowledgeable about dry eyes. I'm not sure there is much he can really do to help but I may give him a try. Have you seen him or any other dry eye specialists in this country?

**np1981** · 01-Aug-2006, 09:46

After 9 months I went to see Dr Tseng in Miami (I have a cousin in Florida whom I stayed with). He said I had both aqueous and lipid problems, as well as conjunctivochalasis.

Personally, 4 punctal plugs have helped my tremendously (2 didn’t make any diference), also I sleep with my eyes slightly open so I wear a Tranquileyes mask at night. These two have definitely helped, where as all the other numerous things I have tried have been useless (including steroids) or at least their effects have been very small. I still take Omega3 ‘cos it probably won’t do harm, and I think (like others probably) that its worth continuing to take for its other health benefits.

I must say I am feeling better now than I have since the problem started, but there is still some way to go. A few months ago I thought I would never find relief from the burining/stinging. But there is still some inflammation and I am still constantly aware of my eyes.

I think the problem is that every patient seems to require personal care - what works for one person may not work for another. Here in the UK they seem extremely inflexible regarding treatment – if what they try doesn’t work they give up quickly or imply that your problems really isn’t worth complaining about. Out of interest who did you see on the NHS?

**kakinda** · 01-Aug-2006, 10:10

sorry to insist but we've had the same experience here in France... nobody will listen to you unless you organise yourselves by launching an association.

it's a bore but someone will have to do it...
I did in two countries so far for Keratos...
who will in the UK and elsewhere in Europe?..
if anyone wants to create a Keratos section in their country in the meanwhile I'm available.

Take care = Take a Stand
Kakinda

**SusieD** · 01-Aug-2006, 10:33

Originally posted by HelenBaldwin

Where did you go abroad? Has anything helped?

Susie - yes, David Crystal the Optometrist in Edinburgh. I have e-mailed him a few times about the availability of certain drops in the UK and he seems to be very knowledgeable about dry eyes. I'm not sure there is much he can really do to help but I may give him a try. Have you seen him or any other dry eye specialists in this country?

No, I havent seen him personally, Ive contacted him but I think he's overpriced on drops and everything - he also said that his was the only place where you could get smartplugs (punctal plugs) and that the NHS wont put them in due to the cost. They do. Had I not have looked into this I could have paid a ridiculous amount of money for plugs. Beyond plugs and drops, I dont think there's much more an optometrist can do for you, although the ones that have a special interest in dry eye are usually really up to date and may be able to advise on other practical things you can do to help your eyes.

Andrew Matheson is really nice & seemed really clued up. Ive spoken to him a couple of times, he does all his dry eye consultations in Alresford, Hants. Google him and have a look on his website. (sorry cant remember the address off-hand).

**SusieD** · 01-Aug-2006, 10:37

Originally posted by kakinda

sorry to insist but we've had the same experience here in France... nobody will listen to you unless you organise yourselves by launching an association.

it's a bore but someone will have to do it...
I did in two countries so far for Keratos...
who will in the UK and elsewhere in Europe?..
if anyone wants to create a Keratos section in their country in the meanwhile I'm available.

Take care = Take a Stand
Kakinda

I hear what your saying, honestly, but it sounds like a very time consuming activity and while I can see how important it is and would love to be able to do this, Im absolutely stretched to my limits at the minute. Im trying to keep up with my studies and my job, which is extremely hard going at the moment. I can only use the computer in short bursts because my eyes get painful so just keeping up with my current workload is hard - Im only just managing it.

What benefits have you seen from organising your association etc - how much of your time does it take up?

Announcement

How to get cyclosporin and other new treatments in Europe

How to get cyclosporin and other new treatments in Europe

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