Pooling resources UK

[brd888]

Hello,
You may have read a "pooling resources" thread I made in open forum.

A good start may be a petition to Number 10.
This is easily done nowadays -
http://petitions.number10.gov.uk/

So any ideas for a simple idea which should get some support?

I think either something to do with getting better treatments/funding into Blepharitis research. Also the dangers of Lasek need to be publicised.

Regards.

[irish eyes]

I think that is an excellent idea. The fellow who heads the Eye Dept of my local hospital (big northern city in UK but prefer not to say which one) admitted that there really wasn't an awful lot of interest in this area of eye health. It seems to be a case of `guess work' with a pick & mix approach to eye drops - and then put up or shut up.

When I started with this condition, I had no idea it would be such a tortuous and futile journey - not to say expensive. I have wasted an awful lot of money getting other opinions, trying different approaches, treatments & therapies and being prepared to travel just about anywhere to get some help. In a way, I am fortunate to have the resources to do this but I am really concerned about those who do not. What do they do? How do they cope? It makes me so angry.

My eyes were not caused by Lasek but I agree with you that its potential dangers should be publicised. I was unaware of this until I joined this forum. When I get hold of the glossy magazines at the hairdressers, I now notice how many adverts there are for this treatment - all with 0% interest free credit. (It's all too tempting).

[eva b]

couldn't agree with you more, Irish Eyes.

More than one "professional" has admitted to me that there is little interest if the condition is not actually sight threatening. The fact that it can ruin your quality of life seems not to bother them.

However, I don't really know what we can do...other than esxchange experiences and ideas. It really is a bummer.

[brd888]

[However, I don't really know what we can do...other than exchange experiences and ideas. It really is a bummer. ]

EvaB,
This is the whole point of the thread. Instead of talking amongst ourselves why don't we try to do something?

Here is a popular petition:
"We the undersigned petition the Prime Minister to Create a dedicated Military & Veterans Hospital within the UK. More details
Submitted by Denzil Connick – Deadline to sign up by: 19 August 2008 – Signatures: 113,837"

We could start a similar petition maybe: "We the undersigned petition the Prime Minister to create dedicated Dry eye clinics in several hospitals throughout the country - these clinics would support patients of Lasik induced dry eye, age related dry eye, blepharitis and meibomian gland disorder - many Optometrists and Ophthlamologists admit there is "little interest" in these chronic disorders which require repeated consultancies and care from professionals to find long term relief.."

We could perhaps try and get our Optometrists and Ophthalmologist go give extra weight...

Something at least?

ta
bruce.
(at the very least have a look a some of the rejected petitions for a laugh)

[eva b]

sorry, I clearly did miss the point completely...

I would certainly be up for joining forces with others in the UK to get a petition going.

Other than this site, how would we go about getting the info about the petition out there to relevant interested parties?

I'm not very technically savvy, don't understand about search engines and stuff (silver surfer, I'm afraid)...perhaps someone who knows more about the internet would have some ideas.

I suppose a start would be to ask whether online suppliers of dry eye products would be prepared to mention such an idea on their websites...?

any ideas anybody???

[brd888]

Eva,
I am more interested in the wording of the petition at this point. The idea of a dry eye clinic is one idea I have - is this what we want? Maybe we want more recognition of the problem? I think the problem has enough recognition but limited treatments - imagine if we had a dry eye clinic like Dr Latkany's in NY but available on NHS and in several hospitals throughout the country.

Otherwise we could petition for lasek awareness or research into blepharitis treatments but where would these lead?

Once we have an idea and started the petition then would be time to try and get signatures.

Regards,
Bruce.

[irish eyes]

It's a wonder that Lasek hasn't made the media yet. Is it too fanciful an idea to think it might be the topic of something like Channel 4 Dispatches - or similar? There are plenty of consumer affairs programes that highlight bogus financial scams, questionable cosmetic surgery firms, environmental health hazards etc. Why not do this with Lasek? At least it would give `Dry Eye' some publicity.

What do we want this to lead to? From comments I read - and my own experience - it would appear that there is little formal research into the history of the condition. Advice seems to be the same; ie `.......No cure as such but use warm (or cold) compresses and go away...' Surely doctors wouldn't say that if they knew more about it? Prognosis might depend on an underlying cause if there is one - but I don't recall anyone making any effort to find out in my case.

Who would we engage with initially? Special interest groups such as RNIB? Charities? Also, Optometrists & Ophthalmologists who have an interest in this already?

[Rebecca Petris]

[(at the very least have a look a some of the rejected petitions for a laugh)

What a riot!

"...change the law so that children under 10 should not be allowed to live in flats" got a whopping 5 signatures

[brd888]

Free laser

Rebecca,
Did you see the petition asking for laser treatment to be provided free of charge by the NHS?

I emailed a Dr Pearce in UK asking for advice on how to lobby interest in Dry eye conditions. It is encouraging to read some of the research into our conditions, here are some of the titles of Dr Pearce's recent papers:
"Effects of Novel Eye Warming Goggles on the Tear Film ARVO 2006"
"Efficacy of an Emulsion Eye Drop in the Management of Mild to Moderate Dry Eyes ARVO 2005"
"Efficacy of a novel lipid-containing eye drop in the alleviation of moderate dry eye 2005"
"Tear Physiological Changes in the first 3 months of Contact Lenses Wear"
etc.

Bruce

[Seamus]

Belfast

Hi there,

Anyone there from Belfast/Ireland? Any doctors to recommend?

I think pooling knowledge tips and resources is a good idea.

Best wishes,

- Seamus

[eva b]

Eva,
I am more interested in the wording of the petition at this point. The idea of a dry eye clinic is one idea I have - is this what we want? Maybe we want more recognition of the problem? I think the problem has enough recognition but limited treatments - imagine if we had a dry eye clinic like Dr Latkany's in NY but available on NHS and in several hospitals throughout the country.

Otherwise we could petition for lasek awareness or research into blepharitis treatments but where would these lead?

Once we have an idea and started the petition then would be time to try and get signatures.

Regards,
Bruce.

Bruce,
I understand your concern that wording is of utmost importance.
In my view, I don't think that the problem has enough recognition in general - particularly in the UK (eg we can't get Wiley or Panoptx glasses anywhere)

I've seen at least 20 doctors, in the country's 2 leading eye hospitals and also in Harley St, both on the NHS and privately, from the most lowly hospital doc to the most highly (over)paid private specialists, and they have without exception been highly dismissive. "oh, you've got blepharitis, MGD, do compresses and use some drops" the end.

The most helpful person who has actually done something for me is my local optometrist, because he is US trained and has a particular interest in MGD (lucky for me) ...also several of the nurses I've come across from time to time.

Because dry eye is not usually sight or life threatening it is dismissed as a bit of a nuisance, and they actually don't know what to do with us.

I think it requires a lot of people to actually state the devastating effects dry eyes can have on your quality of life before anyone even begins to take it seriously.

Unfortunately, unlike Lasik, it's never going to be a big money earner, as any treatment is usually going to be time consuming for the doctor, and labour intensive.

Sorry, don't quite know how helpful these comments are - just my thoughts as they come.

Eva