Ophthalmologist already taking me off list ... out of the loop and feeling so lost!

[britgirl]

Guys, just back from London, I'm feeling so angry, upset and frustrated right now, it's hard to put into words.

I had previously seen ophthalmologist privately and started on Doxycycline for my MGD. I was on an NHS waiting list to follow up with him.

I was literally counting down the days until my next appointment. Just waiting and waiting for weeks and weeks.

When it finally came to my appointment he was 'not available' so I saw a different ophthalmologist. He briefly looked at my eyes said my glands blocked and that I should take Flax Seed Oil and Omega 3 ( what did he think I'd been doing for the past 9 months!?). When I said the pain was so unbearable I'd applied for incapacity benefit, he said 'you do know this is chronic, don't you?' I replied 'Yes, but surely there is something else we can try?'. He said 'unfortunately, no'.

Now here's the thing, I've read about all the treatments online (different steroids, plugs etc. etc.) so I know there is more than doxy. He said these treatments are not for MGD and that the best thing is 'eyelid hygiene'. He said, I have to accept 'this will probably be forever' and that he is prescribing more celluvisc and referring me back to my GP and suggesting some form of pain management.

What am I supposed to do now. Just stay at home in pain for the rest of my life? Fork out more money for private doctors so I can try other treatments?

[y-gwair]

So sorry, this is the sort of consultation I dread. There's nothing worse than leaving the room after someone has told you there is no hope. I had a similar experience with rheumatology a few weeks back, so I know how devastating it can feel.

Without going into too many details in public, do you know if the person you saw has a particular expertise in inflammatory eye disease (try googling them), or were they just a general/junior ophthalmologist? It's not uncommon for consultants to fob you off with one of their registrars for your NHS appt, often they simply don't have the same expertise as the organ grinder (usually zero bedside manner too). I'd still push to see someone who has more relevant expertise, even if you have to pay for it as seeing the wrong person is worse than useless. Remember, this is only one person's opinion and in my experience they can sometimes be completely wrong or misleading. Do they think you may also have rosacea or seb derm? If so it might be worth looking into the dermatological aspects as well (though the derm I saw wasn't very helpful).

Re. blepharitis, I've read of a French optometrist (?) working privately in London who has a technique that other UK people have found very helpful re. unblocking meibomian glands. Not something I've looked into a I don't have blepharitis, but maybe another avenue to investigate while you are waiting.

[Colin P]

Have you tried asking your G.P to refer you to another N.H.S Hospital, or if you can possibly afford it look into going private with someone else of your choice, they will not fob you off, as a paying customer, maybe put an appeal on here for a reccomendation for the London area, and as one forum member on here has only this week passed me a site/link to an opthamolagist in my area Manchester who had in his credentials 'pain management'...

[littlemermaid]

he said 'you do know this is chronic, don't you?' I replied 'Yes, but surely there is something else we can try?'. He said 'unfortunately, no'

Britgirl: So sorry, how did I miss this? That is unacceptable, NHS or other - as we all know, this guy is not current, 0 out of 10 for bedside manner whatever his 'opinion'.

Do you want to PM me and talk about who you've seen and where, what region you're in? Plenty of other anterior segment/surface disease/inflammation/neuro ophthalmologists are seeing us through this hell professionally and with kindness. We all know it's not easy to diagnose and treat the causes - we all know there's ways to manage the eyes to improvement if not restore full function.

If you definitely want your guy back, consider a careful letter to Patient Liaison and/or him.

If you don't want that crew anyway, back to the GP to say it's worse - another Choose & Book referral to your main local teaching hospital, as Colin P says, maybe private with the surface inflammation consultant initially. GP's problem is usually fear of getting it wrong so private diagnosis letter is a big help.

NB optometrists are better qualified to refer eye symptoms. Their professional code of practice does not allow them not to refer if they have seen untreated disease. Recently trained optometrists are the best for this because their course disease modules were current.

NB you are entitled to copies of all your NHS notes through Patient Liaison, or, hey, Medico-Legal Dept, to take with you on your journey.

NHS Clinical Guidelines and referral criteria http://www.cks.nhs.uk/clinical_topic...specialty/eyes so you know what to say. They are trying to treat manageable dry eye 'in the community' to reduce referrals but when it's bad, hospital eye clinic. You are looking for your local PCT 'referral pathway'.

What am I supposed to do now. Just stay at home in pain for the rest of my life

Eye pain and inflammation is tertiary sector hospital eye clinic and this is where you need to be. You could even present as an emergency if you want, although it's tricky to get follow-up that way. Has to be the county hospital, not local clinic. No restriction on going out of PCT.

If GP is not working for you, an optometrist with guts could refer you straight into tertiary referral or private sector. High street chains, esp laser eye surgery branches, can advise better than GPs on referral pathways, maybe through ophth triage service. One problem is never using the words 'dry eye' to avoid the brush-off - say eg inflammation, untreated surface neuropathy, pain, unable to work.

Once we are under the wing of a specialist, seeing 'team' is usually fine if s/he's in the clinic. Y-gwair is right - not until sympathetic diagnosis letter from the boss and some kind words.

I am so sorry this is a mess. One day you find someone to trust and work with, and you look back and feel sick with shock at the disorganisation, lack of communication and unnecessary suffering. Then you start to sympathise with the NHS staff trying to hold it all together for us with terrible pressure and conditions of employment and bless their kind hearts. Even that guy who is taking your money in the private sector is mostly doing it so he can actually treat people the way he bust a gut in poverty working sleepless on-call years in training to do, without 'priority targets', so he doesn't have to turn away those who seek him out to ask for help.