Help. GP doesn't understand re corneal inflammation/abrasions & need for lubrication

[CharlieGreenEyes]

It just doesn't get better.....It's a bit of a long story so I'll start with a summary of my basic issue. I would be so grateful for any help with this - and apologise because I'm sure info is already on this site, but my eye is now so painful it hurts to keep it open for long. It's been a nightmare trying to use my eyes for anything including internet. Just to add I saw Rebecca has posted DEWS II - which I hope to be able to go through at some point. But right now it hurts just keeping my bad eye open. I need something brief to show my GP - they wont' have time for anything long.

Longer story below in case anyone wants more background. It's far too long....I'm sorry...I'm trying to type fast because of the pain in using my eyes....

So in short: I need to something short that NHS would recognise explaining why important to use eye lubricants/eyedrops when you have corneal inflammation, keratitis, corneal abrasions (repeated, multiple, possible RCE). GP won't have time to read anything longer (unsure if they have read through properly the clinic report from my private specialist). GP seems to think of it all as "just dry eyes".

GP doesn't seem to know anything about corneal inflammation or scarring. Which is fine but they also don't seem willing to believe the report from my corneal specialist. Saw him privately but he does work for the NHS as well albeit a different area from where I live. Last time I saw GP they tried to suggest it was mental health. They think it's just "dry eyes" and me asking for eyedrops, night ointments, ikervis, etc is because I am "fixated" with my eyes. They're ignoring the specialist who wrote it was essential to control my inflammation and lubricate my eyes. Not sure if they think he's lying....They said I would be better off with a psychological assessment than ongoing use of eyedrops. It's almost as if they're trying to drive me mad....My own GP has been quite nice but the head GP has told me before there "is not such thing as dry eye disease" so he clearly thinks it is "just dry eyes" and nothing serious. They don't seem to understand I'm at risk of corneal scarring if the damage isn't halted.

I saw consultant privately, and more recently went to NHS eye casaulty unit. I have punctuate (not sure I've spelt that correctly) keratitis, corneal inflammation that keeps flaring up and repeated corneal abrasions. MGD - clearly not getting under control. Ikervis seems to have helped (touch wood) the other eye but the worse eye just getting worse.

I have very little money as I can't work whilst things are so bad (right now I'm typing this with the bad eye closed as it hurts too much). I'm struggling with bills and certainly can't afford to buy all my eye stuff privately. I'm lucky family are paying for another private consulation so I'm trying to arrange another appt. with corneal specialist. Their availability isn't great so it's possibly better I see a different (also private) consultant. I've found a different one with good availability but I'm not sure. I'd rather be seen by the same person for continuity and also because he wants to compare my test results (inc meibography) from last time with my new appt. He's not free for ages though....feeling desperate as suspect GP will continue to be difficult until they have another clinic report.

My local NHS opthalmology is pretty bad. The emergency unit thinks ikervis is an "unusual" treatment. Didn't want to give me steroids to control a bad inflammation flare-up because of that. Apparently they might "mix badly" with the ikervis. This is despite me telling them I had been prescribed the two together when I first started the ikervis. Also that it has been licenced by NICE since 2015 and Moorfields use it. They tried to give me instead pupil dilatory drops. Didn't know what to say when I asked about those "mixing" with the ikveris. I didn't take them because they told me it was just for painkilling relief. I was more concerned with getting the inflammation under control to prevent further damage - especially corneal scarring.

I was told at the emergency appt I'd be seen by the corneal specialist in a few weeks. This was confirmed when I called a few weeks later having not heard anything. Was told that clinic wasn't busy. Then got letter with appt for 4 months time. With the same consultant I'd seen privately. I saw him before I saw my current private one. He was dreadful. Dismissed my symptoms, didn't do proper tests including TBUT, and told me my MGD was under control

This post is too long! I guess I'm sort of partly venting to myself.

[Guest]

This is so ironic - my GP surgery keeps throwing drops at me but refuse to offer any psychological support. When I asked for a months prescription they even suggested increasing it to three months just so I had enough.

My advice - your GP head sounds like a righteous idiot that will not listen to common medical sense. I changed surgery last week and it was super super easy. There are always a few in an area so maybe try that.

Good luck!

[Rebecca Petris]

CharlieGreenEyes
I am so sorry!

So in short: I need to something short that NHS would recognise explaining why important to use eye lubricants/eyedrops when you have corneal inflammation, keratitis, corneal abrasions (repeated, multiple, possible RCE). GP won't have time to read anything longer (unsure if they have read through properly the clinic report from my private specialist). GP seems to think of it all as "just dry eyes".

It seems to me that if you're dealing with someone that ignorant and predisposed to be uncooperative, pushing the recurrent erosion direction might be the simplest, because it's pretty simple to demonstrate that standard treatment has to involve lots of lubrication - Here's an example from Moorfields A&E that even your GP *might* understand?

https://www.moorfields.nhs.uk/sites/...20syndrome.pdf

The only way to avoid recurrent erosions is through the long term use of lubricating eye drops and ointment. Regular use of thick eye ointment at night, and artificial tear drops during the day provides a barrier between the lid and the cornea. This prevents the corneal blister from sticking to the underside of the eyelid. Patients are often advised to continue the lubrication treatment for several months to prevent recurrence even if they do not experience any symptoms.

littlemermaid might have more ideas?

[farmgirl]

I'm sorry Charlie that I can't offer any concrete advice but I just felt compelled to tell you that my heart breaks for you and your situation, this is beyond comprehension for me. Any chance you could change GP?

[TripleF]

Charlie - I'm so sorry. Sounds like you are at your wits end. So sorry! So many people just don't understand.

[Hokucat]

Charlie, it's upsetting how much you are suffering and cannot get the help you need. I'm in the U.S. so not familiar with how the NHS works, but I came across this link on filing feedback/complaints on any NHS care, treatment or service. Perhaps you're already familiar with this process, or if not, those in this forum from the U.K. may have some experience or input on it they can provide you with. I tend to wonder how attentive they will be to complaints, but at least looks like they have a process. I realize you have used both NHS and private doctors/services.

https://www.nhs.uk/nhsengland/compla...omplaints.aspx

[CharlieGreenEyes]

Just wanted to thank everyone for the replies. Your tips and support means a lot - this condition can make you feel so alone at times (battling the doctors for help is sometimes worse than the actual condition!).

Can't stay here long again. Back to that thing where it hurts just keeping the (bad) eye open. I'm typing this with that eye closed. This morning things seemed a bit better, but I nearly cried and it's all gone to pot again. Everytime I cry my (bad) eye is unbearable for up to a week.

Sort of update. I think (hope) the GP understands a bit now. I've had no problems for the past few weeks getting my eyedrops and ointments, but I'm not sure how long that will last. I saw the media reported NHS England's advice to end routine prescription of OTC medicines. Makes me so upset and angry that they have included dry eyes in their list of "minor" conditions. The press releases focus repeatedly on 30p packets of paracetomal to try to get the public to think its a reasonable decision.

[Hokucat]

Thanks for the update, Charlie. Glad at least for time being your GP seems to understand a little more and you are getting your drops and ointments for now. I read a blog where someone in the U.K. started audio recording his doctor appointments (letting the doctor know beforehand), and this seemed to help him make headway getting the treatments he needed, so wanted to mention it. Sometimes I think some of these doctors have such a thwarted view of being strict "gatekeepers" of NHS/insurance guidelines, no matter the detrimental impact to their patients. Wish they could experience our condition and see just how bad it can be!

Sounds like NHS's plan to end routine prescription of OTC meds is similar to how it already is in the U.S. Unfortunately, we might have been an example they referred to when revising their guidelines. And listing dry eyes as a minor condition is indeed frustrating, we all know there are so many levels and causes of dry eyes that could significantly vary the treatment. Hopefully the TFOS DEWS II report Rebecca shared with us will improve recognition and treatment in the nearer future.

[stackedcreative]

I'm hoping my story will help others.

I had RCE for 2.5 years. Went to corneal specialist, opthamologists, etc... besides getting prescribed Xiidra, buying an assortment of eye gel drops, lubricants, etc... they still persisted, about once a month.

I finally, earlier this year, ran across a white paper online about an infant with a corneal abrasion that wouldn't heal. Turns out the infant was zinc deficient. Once zinc levels were fixed, the abrasion healed. Here's one example FROM 1982... you'd think they'd have put 2+2 together with this already. https://www.researchgate.net/publica..._corneal_ulcer

I got my zinc checked, and I'm deficient! I started taking chelated zinc, 30mg once a day with food in the mornings and haven't had a single erosion in 6 months!! I did, however, at once point, have a severe eye twitch problem for weeks, and read that can be a sign of too many minerals, so I backed off the zinc to a couple times a week and still- no erosions! Turns out there are zinc deposits in the eye, and zinc is a necessary mineral to make the eyes function properly, so please, please, request your PCP check your essential minerals (calcium, zinc, etc..) because those could be underlying issues with eye health.

I'm be curious to know if this is the same issue with other people. Essential minerals aren't routinely tested. How many people may be suffering when it's a simple daily mineral pill to fix it?!