Increasing awareness - ideas please!

[lizlou29]

Having a chat with my ophthalmologist and I showed him the link that Rebecca posted a while back http://www.dryeyeclinic.net/blog

He is head of clinic at a good NHS eye clinic (I'm in South East England), he also has a private practice. He is quite honest with me and said that he is often told he spends too much time on patients with dry eye. He treats children with complex corneal dystrophies so I assume other ophths think this is where his time should be spent. Obviously his time is well spent treating those cases (and i know a few people on this forum have children who have been helped greatly by him) but he understands how debilitating dry eye can be and said he would help me with a campaign to increase awareness amongst doctors (GPs included). I've been thinking about this for a while anyway because my GP is clueless and always asks if I've tried all the different artificial tears, doesn't know what punctal plugs are and thinks I should stop worrying about it etc.

Anyway, my question is, is this futile? I think a lot of us have seen ophths who send us away as quickly as possible with the old hot compresses and more eye drops advice and for many of us it doesn't work. I for one have cried in front of an (expensive) Moorfields ophth and was told "it's very common, it's just something you learn to live with so don't get down about it. It will likely get worse as you get older anyway. Don't waste any more time and money on it". This attitude really has to change, I'm mentally stronger now but it's hard to pick yourself up after those sort of appointments.

My ophthalmologist doesn't have a whole lot of free time but if he could provide support in any way I'd like to utilise it. Any ideas? I don't know where to begin....

[Rebecca Petris]

is this futile?

Absolutely not futile - as regards educating eye doctors. [Not so sure about GPs... that might need to follow? but it sure would be nice....] That is, with some resistant doctors it will be a waste of time but with others there WILL be fruit. Here in the US I have witnessed significant shifts in attitudes just in the last 10 years... if it can happen here it can happen there.

Dry eye has historically been considered a 'nuisance' condition: dry eye patients are chronically happy, treatments for it are not lucrative (although that's changed here, sigh, with Lipiflow) and dry eye patients take up a lot of chair time. All those things add up to "bad for business". HOWEVER, the simple fact of demographics - aging population - and the great increase in dry eye as a side effect of various drugs and surgeries have resulted in an awful lot of US eye doctors at least paying lip service to the need to care better for dry eye patients. A lot of eye doctors are hanging out a 'dry eye center' shingle, so to speak. Almost unheard of 10 years ago. And I have no doubt that a lot of that is because of more and more feedback from individual patients about their needs.

I am just running out the door to something but I will come back and post some thoughts later on this weekend.

[lizlou29]

Thank you Rebecca. My eyes are sore today so can't look at screen too much but my brain is mulling things over. I just feel that if I have an opportunity to make even the smallest difference to others fighting this battle I don't want to waste it. I think a lot of ophths are aware of this forum and those that are open to patients doing their own research may want to direct them here

[littlemermaid]

Hi Lizlou, All good stuff! Just quickly, let's

- call it 'ocular surface disorder' http://www.brcophthalmology.org/Them...e/Default.aspx
- collaborate
- admit that underlying conditions are neglected or undiagnosed or untreated, and look at that together
- admit that patient groups do tremendous good work and give great advice on daily living
- push for disease recognition http://194.74.145.88/DOCS/NIHR_BRC/S...Report_WEB.pdf 'Sight Loss and Vision Priority Setting Partnership' p24
- get political http://www.rcophth.ac.uk/news.asp?it...tionTitle=News 'Royal College of Ophthalmologist's Response to NHS England's Call to Action' and http://www.rcophth.ac.uk/news.asp? section=24&sectionTitle=News&itemid=1706 with Lay Committee response
- educate our GPs http://www.rcgp.org.uk/eyehealth - Dr Waaqar Shah is supposed to be on this
- improve local eye service by talking to CCG, and Local Optical Committee, and local Healthwatch

Let's all work together, docs and patients. Nobody expects docs to have all the answers any more. The more we read, the more respect we have for people who do this wonderful work, especially those who teach it. It's OK to talk and and we'll all feel a lot better when that happens

[littlemermaid]

Having said that, Twitter is good.

Regarding how 'other ophthalmic surgeons' think time should be spent, there is legal revision underway in US and UK on responsibility for pre-op assessment and post-op treatment, already in US Preferred Practice Guidelines even for refractive surgery (which is a 'cosmetic procedure' in UK, but not for much longer). Managing the eye surface longer-term is an essential skill, and outcomes data that includes more than satisfactory vision correction will show this.

Best place to address eye surface treatment might be curriculum, practice guidelines, and professional standards.

[cathy8889]

A local ophthalmologist to me who I saw last said that he is working with some gp practices to raise awareness of dry eye disease and its symptoms so that less referrals go through to hospitals as he says that most of time GP can start treatment for the condition. I know for certain my gp practice are oblivious to treatment options for dry eye disease. When I went to the doctors in May to plead for another referral the doctor asked me what I hoped seeing another ophthalmologist would do/what other treatment could they provide apart from drops. When I started to reel off the various treatments which actually dealt with the cause and not just manage the symptoms she agreed to the referral right away. I think ophthalmologists working with gps more would be a good step. Saying this though many ophthalmologists do not have any understanding of the condition or how to diagnose it which makes me think that when people are training to be ophthalmologists dry eye disease should be considered. I am hoping to write a letter to send out to all universities which teach optometry or ophthalmology and highlight my case and the failure of various senior ophthalmologists to diagnose me. I will be sending copies of letters sent to me from ophthalmologists to support my case. I dont know what good it will do but it will make me feel like I'm doing something.

Cath x

[lizlou29]

Littlemermaid - Thank you, I will have a read through all that later. For me the issue with GPs is that they (quite rightly) will refer anyone with vision problems straight away and the RGCP link addresses this but in my experience and seemingly a lot of other people's here, they will prescribe drops for infection or advise/ prescribe lubricating drops and perhaps cleaning with baby shampoo and then you end up having to push for a referral to an Ophthalmologist. I went back to my GP so many times and told me to use Optrex eye bath, salt water to "clean the eye", told I was too young to have dry eyes. When I was eventually referred the first ophth I saw said I should have been seen there months earlier. My current GP readily admits I know a lot more than she does about my condition and she says she will read up about it.

Cathy - I think that's great what you are doing and I hope it is received well. please report back on the response you get. My trail of letters from the worsening of my condition (Nov 2012) to present is quite interesting. First letter was 'mild blepharitis, advise warm compresses and baby shampoo daily etc' to the latest one detailing TBUT, Schirmer's, medications, drops etc already tried, blood tests I've had and ones I should have, my understanding of the condition and possible future treatments. Egos come into play but I would love to go back to certain ophths I've seen and show them all the results of tests they didn't bother with before they prescribed more drops and shoved me out the door. I assume because there is no cure-all for dry eye there is no kudos in being a 'dry eye specialist'. I'm sure some are lured by the return on 'boutique treatments' such as Lipiflow.

[littlemermaid]

Cath - yes, we should certainly be on the curriculum.

I would like NHS Optometrists working in GP Walk-In centres, rather than a shop with sales targets and random fees. Also better access to Optometrist triage in hospitals.

I wouldn't want a GP prescribing for dry eye or red eye - what if they missed a virus or fungus and prescribed steroids and did terrible damage? Can they test IOP and vision? They are certainly supposed to test and refer for systemic, nutrition, or autoimmune issues, but ours says they do not want to coordinate, and 'haven't got time' to read the Consultant letters or diagnose difficult stuff. Also, that they can't accept liability for managing conditions or meds they are not familiar with. Our local Ophthalmology, and even NHS111, advised bypassing them. We use local Optometrists for fast referral to a professional - shocking that the NHS does not reimburse Optoms for eye emergencies.

Let's have a look at who writes the curriculum because that would save you some stamps! It would be great to have a 'thought you'd like to know' process available to let them know what's happened to patients.

Lizlou - courts and GMC have the same assumption we do, in our naivety, that if we see any doc, whatever their specialism, they treat, refer or recommend according to peer practice.

Plenty of opportunities now for patient input, eg http://www.raredisease.org.uk/rare-d...en-letter-.htm, particularly with Genetic Alliance UK, RNIB, and Fight for Sight. This works. It's a bit of a shock to see your own words in national policy documents but better than doing nothing.

Here is a member to be very proud of http://fightforsight.org.uk/appeal/i...to-their-child, doing great PR in many newspapers http://www.coventrytelegraph.net/new...lworth-8023945.

One maternal point. If you see an inexperienced young medic or Optometrist over the next few years, busting a gut for you but obviously knows less about your condition than you do, it may well be Littlemermaid junior... so have a heart, and let's work on this together. For sure, she will not be dismissive.

[lizlou29]

One maternal point. If you see an inexperienced young medic or Optometrist over the next few years, busting a gut for you but obviously knows less about your condition than you do, it may well be Littlemermaid junior... so have a heart, and let's work on this together. For sure, she will not be dismissive.

Oh goodness yes, I was referring to heads of clinic and supposedly the best of the best at Moorfield's who don't even attempt to act like they care. The last Optician I saw was keen to learn more about how the condition impacts my daily life and I think that's great. I'm one of the very few young-ish people she sees with dry eyes.

My issue is with the eye docs I've seen where I think "my goodness, you are actually paid to be this inept/ rude/ dismissive." Even if you don't have much time to spend with a patient at least be give them some hope.

[littlemermaid]

So true. We heal better and life can be great with kind support.

[littlemermaid]

Just to clarify for interested professionals:

good PR ORBIS James Bond - http://www.youtube.com/watch?v=6XVSvfOd-Mg #WSPOS

bad PR AAO2014 Improve-practice-by-making-dry-eye-patients-feel-well #salesnotscience

[Rebecca Petris]

Thanks for flagging the ebook promoting LM!

[LaDiva]

I think Darrell's necktie must be too tight.

[littlemermaid]

Ha ha, LaDiva

Lizlou, www.vision2020uk.org.uk/ukvisionstrategy/ Maybe the best place to improve things is in professional standards - see US Preferred Practice Guidelines - and, hate to say it, regulation, clinical governance, and outcomes data.

What has helped most with medics is published research, especially with the innovators and leaders. Grunt or actually taking it = thanks

Some docs have said 'thank you, how interesting' and asked more questions, and this is more the norm these days with senior people. That's how we know they are very good and trustworthy doctors.

Showing GPs NHS Choices pages, their own Clinical Guidelines, and www.patient.co.uk/patientplus has also been helpful. I pretend it's my file 'for info'. They can't know everything these days and it's good to see them looking things up and double-checking to make sure they don't make mistakes. With Medical Records on computer now, everyone will see.

[justbob]

He is quite honest with me and said that he is often told he spends too much time on patients with dry eye. He treats children with complex corneal dystrophies so I assume other ophths think this is where his time should be spent.

I think that's very shortsighted (no pun intended), with better awareness will come prevention (I know from experience that a tiny bit of info at several points would have made a big difference), and eventually better/cheaper/faster treatments. Which in long run will benefit society, leaving docs to focus on what hey consider the "gruesome" conditions.