Publicity

[brd888]

Read this on one of the special Q&A forums:

"I am sure this will happen sometime in the future but first
we need you all to scream out loud and get this disease some more attention.
Your local newspaper is a start. Once we get global transplants will follow."

Anyone else tried to raise awareness of Dry Eye problems? I sent an email a while back to "Optometry Scotland" about neglect of dry eye in healthcare here and got the following reply-

">Thank you for your email. I have forwarded it to Frank Munro, Chairman of >Optometry Scotland, and he will reply to you shortly."

Not had a reply in the 3 months since, though.

[Rebecca Petris]

Regarding publicity on your side of the pond...

I had an email from Janet Boyle of the Sunday Post a couple of weeks ago looking for any updates on a laser eye surgery issue widely reported on back in 2004. I sent back a reply urging here to take a look at dry eye as a health issue badly needing better treatment and better public awareness. Here's her email if you want to contact her... the more people they hear from the better.

I think that the Daily Mail would be a good target for dry eye. Try contacting some health reporters there and just tell them briefly why this needs to be reported on. Also, getting a bunch of people to post on their bulletin boards might be a way to spark some attention to our needs.

On this side of the pond...

WSJ article has helped spark some new interest. I had a bite from a major local TV station recently interested in covering it. Working now on putting together a media kit to send round to some others. If anyone has local media they'd like me to send it to when finished please just drop me an email or PM with contact information (name & mailing address or email) and I'll make sure they get it.

[brd888]

UK website

Further to previous post (or should I say no further as I've not had a cheep from the first email) I've also sent a message to The Eyecare Trust in Britain.
www.eye-care.org.uk

Bit long-winded but I finished with
"To summarise I would like The Eyecare Trust to investigate how we can increase the number of Ophthalmologists and Optometrists who have an understanding of the problem and time to properly care for patients."

I think the root of the problem is the lack of Practitioners and Clinics with aggresive Dry Eye treatments.

[sazy123]

I remember sending an email to i think eye care trust ages ago. Because i was outraged that the only treatment they included on the dry eye page was artificial tears. And asked if they would add more of the treatments as it was missleading to people who would assume there is nothing else. They added plugs and thats it.

I also emailed the The Royal College of Ophthalmologists and complained about the way i was treated by most eye doctors i saw re dry eye. Cant remember the reply..

If any one is not happy with doctors treatments they should complain to the The Royal College of Ophthalmologists.

Oh i have just found the email i sent to the eye care trust last year, (note i was angry):

Dear sir/Madame,

I am a severe dry eye sufferer, and I just wanted to say that I think it is
outrageous that a company such as your selves who promotes eye health has
such a blasé attitude towards dry eye. There is no wonder the eye doctors in
the UK are so unbothered about doing anything to help us patients with
statements like this:
"After Treatment, Use of artificial tear drops should provide immediate
relief. These drops should be used forever. There is no need for regular
clinic checks after starting the treatment. The drops may sometimes cause
some feeling of stickiness or a little crusting of the lid."

The above statement totally contradicts the American view of dry eye: that
it is a pathological disease, and could be a result of underlying
auto-immune diseases, and requires attention and numerous follow ups. For
example as stated by one American dry eye expert:
"Dry eye patients need continual monitoring and follow-up to ensure
effective treatment. Typically, I see dry eye patients at least five times
during their first year of therapy. During this time, most of these patients
also undergo punctual occlusion, driving average revenue per patient between
$485 to $545 if only one set of plugs is used. To properly educate and treat
my dry eye patients, I rely on my staff. Here are some tips on how I train
them." http://www.optometric.com/article.aspx?article=71543

I am 20 and I certainly can't get along in life using just 'artificial
tears', they provide momentary relief at best and I feel disabled by this
condition, and no one will help with this disability. Every dry eye patient
in the UK that I have spoken to feels let down by the doctors. I know the
only thing they can give us is artifial tears, but the situation is unlikely
to ever change with this kind of attitude to dry eye, 'it is more than just
a nuisance'. The American eye care providers recognise this so why don't eye
care providers in the UK? I think we will see more and more dry eye among
younger people in years to come due to all the increased computer use
amongst other things, as it is becoming more and more common. Then maybe you
will start taking it more seriously.

Thanks for listening, regards

This was the reply, which totally ignored my original point.

Thanks for your email. Puctum plugs were on the system as a treatment and
not associated with the eye condition - this has been resolved.

There are very few practitioners who do punctum plug work in the uk - but it
is something that will become more prevalent, there is a trend towards more
treatment in the primary care sector so I am sure this will help. Dry eye is
very often related to factors outside of the field of optometry and those
considerations must be investigated first which is why it often ends up with
GPs and in the secondary care hospital system.

Regards

[Rebecca Petris]

There are very few practitioners who do punctum plug work in the uk - but it is something that will become more prevalent, there is a trend towards more treatment in the primary care sector so I am sure this will help.

Unbelievable. This person is making it sound like plugs are an emerging technology or something. There are many doctors in the Uk who fit plugs, on and off the NHS.

[brd888]

I think the main care package should be from Optometrists. I don't know what sort of dry eye knowledge Ophthalmologists have but, via NHS, you are looking at a 3 month wait for a single consultation. When you finally see one they are not impressed to have to deal with "just" dry eye.
Optometrists are more numerous and should have the time for dry eye patients. Problem is they are well behind the times on dry eye conditions.

[sazy123]

yea exactly brd888, then all the they give you is artificail tears which you probaly already tried by then and if you push it they may give you plugs that fall out!

Have you sent a complaint to the royal colledge? i may do that again..