Doctor writing irrelevant stuff on referral

[robster]

Unfortunately those of us who don't live in the States have to put up with some truly dreadful eye doctors. Saw an NHS Opthamologist last week who insisted that Lipiflow was a new kind of eye drop! He also said that MGD was exactly the same as Blepharitis! Sounds like Australia is as bad as the UK in that respect. Absolutely outrageous that you can't get a dilated pupil exam Poppy.

[littlemermaid]

Good grief, Robster It always makes me feel better to refer to this again in the next clinic. Maybe ask a different colleague on the team if it's true.

Poppy was in a regional teaching hospital eye clinic on 4/day Pred Forte with uncontrolled inflammation. How can they not do a dilated eye exam to look at retina? Poppy, what drops do they put in when they examine you? What happens when you ask about this? Maybe try something like phoning next day 'could you just tell me what dilating drop was used in clinic yesterday because my eyes are sore and red today?' They have to check the notes in case you've had an allergic reaction and they need to use another drop next time. If they say 'we didn't dilate your eyes', you'll know for sure. Then the question is 'oh - I thought they normally dilated the pupils to look at the retina when there's lots of new floaters?'

[poppy]

Absolutely outrageous that you can't get a dilated pupil exam Poppy.

This last one apparently did. It has taken about 8 or 9 opthalmologists to get one and they only did it because I was asking about the possibility of a surgery for my extreme floaters and because it was a retinal specialist (ie, the assistants dilate most patients anyway). At least, I guess they did examine inside my eyes as the assistant put in some drops and if my eyes were still dilated about an hour later when I saw the doc, I guess I did finally did get the full exam I wanted.

Lipiflow - a new eye drop! Some of them are so stupid you feel like charging them.

[poppy]

Poppy, Do you think the hallucinations are from awful stress or depression, pressure on brain, or meds? You know we care and people have some difficult issues and experience here. I think you had an MRI about 2y ago? Any useful doc advice? Have you tried beta-blockers to get you through, if it's hallucinations from anxiety? When did it start? When does it happen? Why do you think the hallucinations are happening? What makes you feel better?
...

This is helping us on the waste of some medical consultations:

. Fact still remains that after all the counselling on the sheer fury and despair of navigating the medical 'system', there's been only one relief. A supportive eye surface ophthalmologist who will work with us managing chronic blepharitis and eye surface inflammation. Worth doc-shopping, paying, travelling. Do you like your current bloke?

. Accepting thankfully whatever is on offer from friends, family, professionals, but being very honest about the limitations. And finding support groups, even if it's only knitting and natter, or a regular coffee. Poppy has one evil sense of humour to contribute in the ranks of the infirm yet kick-ass. I'm talking to eye charities about service problems and the patient groups are helping formulate national policy now. LM and I feel better in action. Strength in numbers.

. Do you have a friend who's eg in/been in nursing? I imagine some of those Aus nurses have quite a robust approach to docs.

. Underqualified staff giving opinion is medical negligence. Receptionists are not qualified to triage anything. I've got past with 'is there someone medical here I can speak to about this?' or the good old 'it's confidential, isn't it?' Good receptionists won't do this, they give information. Try a superior and condescending tone - they're used to that, the place runs on it, eg 'can't you just...' order the notes, whatever, 'I'd prefer to talk to the doctor about this', maybe keep it light. Orthoptists and optometrists are not qualified to diagnose or prescribe, they have to refer symptoms to an ophthalmologist, not pass any judgement.

. In the absence of professional regulation and minimum clinical standards, although it looks like this is about to change, LM and I give scores in the car/train back after consultations: medical knowledge, bedside manner, technique and skill and use of available equipment, collaborative and teaching skills, willingness to admit lack of knowledge and ask questions, referral and peer group relationship skills, signs of current reading and keeping up with the field. Extra points for: pulling the notes and reading them beforehand, bonus for requesting notes/specialist opinion from other hospital department, double bonus for requesting notes from outside hospital region and showing willingness/ability to collaborate with other specialisms. There are some high scorers out there.

Also, we have a list of questions and let them see us note down the answers: what's the eye pressure, which drops did you use, vision checks, and we ask them 'what can you see?' so they talk it through after they've examined her. Then, if you have a 'difficult' question, they have to call in senior staff.

An ego-ometer and successful delegation score may also be required - ophthalmologists are surgeons. Surgeons expect the team/everyone else to finish off and clear up. And that includes the emotional treatment and ongoing support for eye disorders that should take place through the eye clinic. Optometrists and nurses do not do this part so usefully because the patient needs to talk to a doctor about the prognosis and ongoing treatment options, and all the fears are from that. The best consultant's eye clinics are very tight on procedure and vigilant for error and checking people don't slip through the net (the most overloaded eye clinic we attend is the best at this).

. Complete file of home-made treatment diary + doc letters + test results + imaging with us at all times, some on iPhone. At the front I have current Clinical Guidelines and I let them see I've got that. This feels empowering, maps out patient experience, defines and contains the problem. It's very very important not to feel like a victim.

. Occasionally some diplomatic patient feedback to 'improve their services' and, depending on the public/private sector, meet their remit. Patient liaison service is worth a try. Best way to point up mistakes has been as a question 'could you clarify?' or 'I thought...' One doc binned his letter and had a rethink. There's only two docs who will argue with me to help me think through what I'm worried about. The ones who care enough to let us have that are rare.
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Dare I ask if you are doing OK with your dry eye and mgd management? What's the worst of this at the moment - eye treatment or worry?

But what else to do when the service is not good. Anyone got any more useful tips?

Thanks for caring LM. I might PM you sometime when I want to talk if that's OK. What I want to say is a touch too personal for an open forum. Thanks

[littlemermaid]

Hey, any time. LM and I are both nut jobs now, I guess. Sounds like stress to me. If we could access consistent and professional doc help, we could all deal with the stuff and get on with our lives x

[Jenn1]

As robster pointed out whilst I was in the midst of replying to his post, my visual hallucinations and other visual disturbances are not just "movement in the corner of my eye". That is why I became so annoyed by the orthoptist trying to say my spiders are "cobwebs" ie floaters. I can assure you that if any of you saw some of the stuff that I see you would probably wet your pants and go to the ER.

Poppy, I remember having my eyes dilated and seeing black cloud like outlines expanding and reducing over and over, that shook me and i was told its the drops, BUT i saw them again when looking at the sky or a plain white surface weeks later and they were not floaters at all. I panicked thinking maybe its macular degeneration or cataracts etc..., after weeks of trying to figure what could be causing these visual disturbances I realised having ruled out anything serious with the eye docs that it was likely coming from my inflamed cornea and its pain/soreness and reflecting somehow through my sight and i havent seen it again since. Also, it may have been migraine related as sometimes you can see such things before the onset of headaches or during or after. I hope you do see a neurologist just to be safe though as your description sounds more complicated. I know how scary these things can be too.