Doctor writing irrelevant stuff on referral

[poppy]

Have you got anti-depressants to help you cope with this?

How do your eyes feel at the moment? Would you say that they are under control? Have you ever seen an ophth you like long-term? Can the optometrist see all the floaters and check the retinas and IOP?

Not really anti-depressants, my GP keeps giving me anti-psychotics as he thinks I am nuts. Strangely I kind of prefer this to being totally dismissed as "everything is nothing", even though the drugs seem to not do very much.

Eyes definitely not under control at the moment, feels like my first episode of "dry eye" (when I hadn't learned about stuffing my eyes with gel to prevent ulceration), only now I am still stuffing them with gel and feel they are going to ulcerate again in the next couple of months. Optometrists generally can see my floaters (undilated - they've never done that), but I don't have a lot of respect for their opinions on whether there is a serious problem or not. eg Last optometrist I saw said the outside of my eyes looked good, and added something like "apart from the staining caused by the dryness you said you had". At that time I know for a fact I had keratitis, erosions/abrasions, and plenty of scarring of the surface of the eye. How can this be "good"?!!

Right now, I decided I would still like to see the retinal specialist I have the "this lady is crazy" referral for, but can't work up the courage to try to make an appointment. Is this normal? I know we all can get nervous with a doctor visit, especially a new doctor, but surely I should be able to have the courage to make an appointment with someone I have a referral to? I tried using their online form which is supposedly for patients to make enquiries/bookings, so I wouldn't have the confrontation of talking to the receptionist, but they never replied. I will not be asking them to try to get me in sooner than their normal waiting period, I can understand that most patients would find that quite confrontational, and I would never try to do that. I just want to make an appointment, and can only manage to endure the stress of calling when I am at home during business hours without anyone else around even my husband (hard to manage). I am very afraid, based somewhat on past experiences, that the receptionist will ask for great detail on why I want to see the doctor, humiliating me (yes most specialists I try to make appointments with expect you to tell the receptionist the reason - humiliating!) and then refusing to give me an appointment and being generally horrible and rude to me. It has happened to me before with eye docs that the receptionist has told me that this doc only accepts new patients if it is a surgery. I also hate the fact that the receptionist is going to read my referral. I had one other specialist's receptionist (not an eye doc), who wasn't satisfied with my brief description of the problem and made me read out my referral over the phone. Horrible! It's so awful that receptionists are allowed to query patients about the reasons for their visit, I can understand it if the patient is asking for an urgent appointment but in any other case it shouldn't be allowed. Even seeing my GP, if you want to book a long consultation the receptionist makes you tell them the reason. I don't understand why this is reasonable given that I am paying out of my own pocket and it should make no difference to the doctor the reason for my visit.

Thanks for everyones responses and support

[DCRdryeye]

Hey poppy - I've written a new blog for all dry eye sufferers to share their experience with rude doctors. I begin the blog by sharing my own experience, and poppy, I'd like you to share your experience on my blog about what your doctor wrote on your referral. Please go to: http://www.blockedtearductsurgeryadult.com/?p=91

Since I've written that blog, another incident happened that I thought was very strange. I saw another "local" ophthalmologist to have DuraPlugs inserted and he had never seen them before. Well, he thought the foam that held the plugs against the box was the plugs. So he cuts up the foam, and using plastic tweezers begins to approach my eye with a large piece of white packaging foam!!!!!!!!! I thought may-be the 'blue' DuraPlug' was stuck to the ends of the foam and that he was using the foam to insert the plug. But I was not that lucky!! he appologized and said the foam was too large to insert and went to find a scapel to "custom model" it to fit into my puncta. Oh dear, I had to explain to him that he is using "packaging" rather than the plugs.

Eventually, I got him to realize that "DuraPlugs" were very small 'blue' cylindrical plugs. If miracles exist, they do here, because he eventually got the "correct" plugs inserted into my puncta with much difficulty.

[poppy]

Hi DCRdryeye, I don't quite have the exact words to sum up my experience on your blog, just wanted to say that I feel for you with your horrible experiences. I have also had eye docs dismiss and "diagnose" me without even examining my eyes. It is terrible how a doctor can use swear words at a patient and get away with it, apparently as a patient there is nothing that can be done about this. I have also been shouted at by eye doctors who paced around and waved their arms in a very intimidating manner. Yes I guess I "provoked him" by pleading with him that I needed help. I think probably all of us need to take a fit young male along to our appointments so that the doctor thinks twice about becoming aggressive.

[LaDiva]

Sorry you had this experience poppy. The cool thing is that you have what he said on paper! If you decide to report him, there it is in writing. Who would give something like that directly to a patient? Gotta wonder about that one. I tend to think he may have some issues himself. Young docs are patient and they can still see, so maybe find an amiable young woman or man.

[Jenn1]

Hi poppy, I can fully understand your concerns. I have spent almost a year trying to figure out whats happened to my eyes and i too saw two very impolite opthalmologists that left me questioning the medical profession at present and along with the fact that due to my eyes burning and needing drops regularly, one gp removed me as their patient and another sat smirking when i was saying how my eyes hurt. My eyes look bad outside, yet they deny theres anything wrong and i went to see a surgeon about something different and he also commented on how he read my medical reports about concerns with my eyes and that they were fine and its stress and made me feel stupid in front of one of the nurses and sent me away.

I feel that as time goes on the medical profession is attracting people who are monetarily driven rather than humanitarianly driven and here in the UK since the gp surgeries and hospitals have been told to save tens of millions each year, they are refusing to even give people the tests they need and treatments and also sending people away and writing 'mad' etc... on their medical notes. Its disgusting to see and gps here have been handed over their own medical budgets each and they are holding tight to what medicines they are willing to give us patients and being rude and even removing patients who need more medicines or referrals as they know they will lose their precious 'bonuses!' Its sickening but i have seen this first hand and how these gps holiday at the expense of patient health and patients are lied to constantly.

As far as reporting these medical professionals goes, most of these regulating bodies are full of ex doctors or gps themselves, like the general medical council GMC here in the UK and they look after their own rather than the patients. The government also wont 'upset' doctors due to their shortage so they are left to roam free and treat people like dirt so people need to mass protest for any changes to occur or discipline them better. Changing gps may help but i have done that and its the same story and one even shouted me down at one appointment.

[DCRdryeye]

Hey Jen, thanks for the insight. Wow, if a doctor shouted me down I'd be inclined to throw his/her desk upside down or begin to take apart the office whilst they call the police on me. If we have no chance on reporting their rude behaviour, at least an outburst will make them think twice about abusing another "patient" they are supposed to assist in getting better, NOT make worse. Decades ago, the medical profession had more compassion, they listened to you and treated you like family. One of those doctors just had to touch you with a stethoscope and you immediately felt better just from the "touch". Kindness assists healing and nowadays doctors have become harsh, cold hearted, abrupt and time watchers...they want you in and out as quick as possible. In fact, a doctor friend of mine disclosed that some doctors boasted how many patients they can get in and out in one day!!...so we are nothing but a number, or a mechanical object with no feelings. The spirit, soul and emotion has unfortunately left the entire medical profession, including the regulating sector who are so draconian about listing new healing medications that they never see the light of day. Effective treatments for dry eye are available, but they have so many hurdles to get over to make it market that they never acheive it. Or, they may-be restricted to one country such as AMX drops, it's only available in Italy.

As I mention above, PLEASE participate in telling us about an experience you had with a rude ophthalmologist on my blog at http://www.blockedtearductsurgeryadult.com/?p=91 (Arrogant and Inappropriate Medical Professionals). The more feedback we get, I'll eventually show the medical board and hopefully stimulate some action. You'll notice the 'banner' on the website is about DCR surgery. It's a surgery I was bullied into and my feelings about wanting to avoid surgery was not taken into account, it's basically the same thing. Surgeons not "listening" to patients and not providing them with enough information and side effects.

[poppy]

Orthoptist thinks they are a doctor!

Well I went to see my eye doc with my crazy referral and it didn't really go that well.

The orthoptist was nice enough but questioned me about the "crazy" stuff and then tried to give me his opinion! Totally unacceptable in my view. Even the eye doc asked questions that were nothing to do with the problem, such as did I still continue to see a psychiatrist and how did I feel about having a psychiatric diagnosis and where did I get my medication from??!!

I guess I gave the staff the laugh of their month/week or whatever. The orthoptist was really the worst... he questioned me and I explained about some of my visual disturbances and visual hallucinations that my GP mentioned. This I can kind of understand, it's probably more interesting than asking an 80 year old about their cataracts and some of it could be remotely possible something to do with my eyes. But, the orthoptist basically tried to tell me my visual hallucinations were just due to my floaters (I already know I have obvious floaters, which is why I was there in the first place, to get the floaters checked out, and I know exactly what a floater looks and acts like!). Crazy or no, I am not stupid and can easily tell the difference between a floater and a visual hallucination or other visual disturbance that is NOT a floater?!! For example I explained that I can get hallucinations of spiders, orthoptist then tried to tell me this was "cobwebs" from floaters. Um, no, yes I have cobweb like substances from my floaters, but I am quite capable of telling the difference between a floater like problem and a giant spider hanging off my ceiling trying to eat me. And I have many more stories than that. I am so annoyed right now and yet again I am swearing off seeing eye doctors or any other doctor except to get routine prescriptions and basic stuff. OK, this might not stick but I'm going to try this again for a while and I think I will be much happier... Seriously when experienced doctors and other experienced medical professionals are so rubbish I wonder what kind of care we are getting in the public system treated mostly by interns and junior registrars.

[poppy]

Hi poppy, I can fully understand your concerns. I have spent almost a year trying to figure out whats happened to my eyes and i too saw two very impolite opthalmologists that left me questioning the medical profession at present and along with the fact that due to my eyes burning and needing drops regularly, one gp removed me as their patient and another sat smirking when i was saying how my eyes hurt. My eyes look bad outside, yet they deny theres anything wrong and i went to see a surgeon about something different and he also commented on how he read my medical reports about concerns with my eyes and that they were fine and its stress and made me feel stupid in front of one of the nurses and sent me away.

I find often they will tell you there is "nothing wrong" when in fact there is. The better eye docs have told me things like I have erosions, abrasions, keratitis, scarring of cornea and eye surface, potential to affect my vision in long term, etc, yet a week earlier or later another optometrist or eye doc has tried to tell me basically there is nothing wrong. They just tell you nothing is going wrong to get you OUT, ASAP, knowing that you aren't going to go blind tommorow so they can't be blamed.

[littlemermaid]

Poppy, love ~ Are we sure about these antipsychotics? giant spiders? is this new?

Tell us more about the hallucinations - do you see real objects? patterns of flashing lights etc? Do you eg test your blood pressure? or have you noticed optical migraine symptoms? how are your nerves, esp in neck and face? When did this start?

How are the eyes? anything making your eyes feel better? any docs you'd like to see again because they were helpful? have you got punctal plugs in?

LM and I are both in counselling, which is good. Are you still not on anti-depressants? Is the shrink helping? How's your husband bearing up? x

[robster]

Poppy I hope you don't take this the wrong way but your visual hallucinations are highly unlikely to be caused by your eye issues. Even though visual hallucinations could be called a visual problem(i.e - something you can see) they are caused by a disruption in brain chemistry which can be caused by a variety of issues. Medication as Littlemermaid said could be one cause but a variety of things could have disrupted your cortical centre(part of the brain which processes things visually) which in turn causes the hallucinations.

An opthamologist while qualified to deal with your eye issues simply isn't qualified to deal with issues such as visual hallucinations as this is an issue best dealt with by a neurologist. I would consider getting a CT scan if these hallucinations continue.

[spmcc]

Floaters can do weird things to us in our attempt to interpret what we're seeing. For example,

1) On a TV show called Mystery Diagnosis, there was a lady who always saw a flock of birds in the sky. Many times she'd ask her friends, "Why is that flock of birds following us?" or "Why is that flock of birds always up there?". Her friends would look at her like she was crazy. --- It was a floater. Her diagnosis turned out to be Behcet's.

2) A friend of mine said she had been trying for days to remove fuzz from her eyelashes. It was driving her crazy at work trying to see through it. She'd pick at her lashes all day. She had looked in the mirror over and over and couldn't see it. She asked me to find the fuzz. I couldn't see it. --- It turned out to be a floater. And when see started to see lights flashing/flickering, I took her by the ear to an ophthalmologist! No retina detachment but the doctor told her to return ASAP if the flashes came back.

It is completely possible that there is a floater "making" you think there is a spider above you. That is why getting a good eye exam is so important.

[robster]

Yes but poppy said she could clearly tell the difference between a floater and a spider hanging from her ceiling. Visual hallucinations can often be a sign of a chemical imbalance in the brain and i think it would be wise to consult a neurologist just to be on the safe side. Big difference between someone thinking their floaters is fuzz on their eyelashes and seeing giant spiders that are trying to eat them. My cousin had visual hallucinations and they were caused by pressure on the brain. In these situations i think it is better to be safe and cover all the bases.

[poppy]

Poppy I hope you don't take this the wrong way but your visual hallucinations are highly unlikely to be caused by your eye issues.

Not taking you the wrong way at all, I don't pretend that my visual hallucinations are anything to do with any of my eye issues, hence the title of my post - "doctor putting irrelevant stuff on my referral". I simply wanted to have my floaters checked out and was annoyed that my GP chose to write about my hallucinations on my referral when it was totally irrelevant.

[poppy]

Floaters can do weird things to us in our attempt to interpret what we're seeing. For example,

1) On a TV show called Mystery Diagnosis, there was a lady who always saw a flock of birds in the sky. Many times she'd ask her friends, "Why is that flock of birds following us?" or "Why is that flock of birds always up there?". Her friends would look at her like she was crazy. --- It was a floater. Her diagnosis turned out to be Behcet's.

2) A friend of mine said she had been trying for days to remove fuzz from her eyelashes. It was driving her crazy at work trying to see through it. She'd pick at her lashes all day. She had looked in the mirror over and over and couldn't see it. She asked me to find the fuzz. I couldn't see it. --- It turned out to be a floater. And when see started to see lights flashing/flickering, I took her by the ear to an ophthalmologist! No retina detachment but the doctor told her to return ASAP if the flashes came back.

It is completely possible that there is a floater "making" you think there is a spider above you. That is why getting a good eye exam is so important.

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.

[littlemermaid]

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 doctor, 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.
...

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?