Given evidence that ME/CFS patients report poor doctor-patient encounters, particularly with GPs, I thought it might be useful to look at ways of improving the situation for patients. For instance, if patients are fatigued - could GP practices be made aware in advance in order to shorten in clinic waiting for patients in ME/CFS; if patients have sensory overload, could GPs accommodate this by booking appointments at quiet times or reducing lighting and noise to a minimum. It may not be possible to ask GPs to do more home visits, as this may be a constraint - however are there ways for GPs to use email, skype and other technologies to communicate with ME/CFS patients?
Hi Keith, Im sure the ME/CFS community is very happy to have a research look at improving the doctor-patient encounters but as the others said, most of it comes down to very poor understanding of our illness from the doctors and often negative things expressed towards us due to the doctors not understanding.
Ive had many doctors refuse to see me as they just say they are uncomfortable having a patient with this illness, the last 2 doctors who took me on, would only do so if I was under the care of a ME/CFS specialist too. I know someone back in my home town who hasnt no doctor as she cant get in with a dr specialising in ME/CFS as they are booked out and without that, noone will take her on or dont know what to do with her (the more severe the ME/CFS the harder it is to find a doctor willing to take you on).
But the things you are thinking of are a start in the right direction if doctors could be trained on "how to treat us right' eg our care needs (not medically treat us but just appropriately treat those of us eg not leave us sitting a long time when we are about to fall off our seats in the waiting room etc). Our care needs are thou so complex we really all should only have specialists in this illness dealing with us as its way too much for an ordinary doctor to know.
Right now much of the care we get is completely inappropriate, this causes many of us not even to be able to get to a dr, I have to mostly now rely on ambulances when I need a dr just cause I cant get into a drs clinic. (sometimes ringing an ambulance as much as every week or 2 for emergency care as my state goes beyond normal clinic drs care as Im not getting any medical management cause of inability to get to clinic).
I've had doctors have to ring an ambulance (2-3 occassions) cause my state got so bad in the waiting room waiting that collapsed. Those with severe ME/CFS SHOULD NOT be having to sit in a chair and wait in a waiting room getting illner and illner by the moment, wondering if we are going to make it to our appointments then make it throu them.
This issue has been got around for me at times by clinics doing various things (usually thou only after I've collapsed there on a previous occassion due to their ignorance of how ill I am. Due to this I find it disturbing everytime I go to a new dr as I often have to go throu all this all over again, its like every new dr needs to see how ill I get before they believe it and be accomindating for this).
eg
- One doctors appointment we had to hold outside in the public walkway of a shopping complex with people walking by as I found I couldnt enter the clinic that day due to too much perfume throu the room from other patients (which would of caused me to collapse.. I have postural orthostatic tachycardia syndrome (POTS) with the ME/CFS, canadian ME/CFS criteria, and POTS can be also triggered by chemicals hence I can collapse on exposure). This is where appointment timing may be important for some of us. For me due to insomina I often dont wake up till 11am but if I didnt have this issue I could be put first at appointments before the rooms have filled with perfumes.
How many drs are aware that many of us can have severe issue with others deodourants/perfumes in the waiting room? How many doctors will cater for this?, it seems not many and this prevents me from being able to go to new drs.
Two of my doctors ended up leaving off their deodourants if they knew they had an appointment with me that day as they knew it would make me worst. So that's one point, doctors should be considering when seeing a ME/CFS patient... there own hygiene practices before they even see the patient. Some of us react and start to crash if the doctor has just shampooed hair etc, I try to have any meetings with people in afternoon due to this by then the doctors shampoo and soap has usually worn off (deodourants thou dont always wear off and can be there all day)
My ME/CFS dr used to actually have a full length cosy couch that his ME/CFS patients could lay on while waiting. This was great as at times I even slept then while waiting (usually I was the only person in that room too).
Other clinics Ive been to have provided me at times (usually only when Im about to collapse) a spare room with a bed to lay on while waiting. This thou has at times been an issue cause at times their spare room has been in use.
One time I was forced into laying on the hard cold cooridoor floor of a clinic with people walking by my head less then an arm length away (I was worried I was going to get kicked in the head) as one clinic didnt want me laying in the main room on the carpet where everyone could see me there. Ive been in that situation in hospitals too when I got told there was no spare bed while I was waiting to see a dr. (so its easier now that I just get taken in by ambulance).
My dr ended up going to phone visits with me but then freaked out after doing that for quite a while as she cant monitor me and I have a ton of severe health issues going on so in the end she told me she couldnt be my dr anymore as if something went wrong, she was worried she'd be liable.
I've been unable to get another dr since then cause im homebound and the local drs clinics wont come out to me unless I can get to them first. Ive been unable to get to my specialists for various issues I have for over 2 years, my medications have been just left all unsorted (specialists were trying to sort medication stuff eg doses and better drugs but I couldnt get back).
the lasted thing is I torn my shoulder tendon and hospital told me that Ineeded physio but couldnt get to a physio so this meant my arm has helped badly so I cant now raise an arm up and have it in a sling 90% of time.. the latest now is hospital has told me I will need surgery on it (all cause I was homebound and couldnt get a physio to come out to give me the care I needed). So now Im taking maximum doses (actually sometimes over) of pain killers to try to relieve my pain.
All my medical issues always complicate due to lack of medical care with being homebound (I can only leave my home with a carer to push my wheelchair).
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The ME/CFS patients who are that bad that they need very low noise and lightnning, you wont get them going to an ordinary clinic visit anyway as those ones usually cant leave their beds at all and no way should they even be attempting to leave their house for an appointment cause the act of doing that brings very severe consquences to them (you cant protect those ones enough.. just someone walking by and movement or the bumps in the road of the drive there can make them worst). Those ones should only be having home drs visits (very short ones).
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Another big issue there is which causes problems between doctors and patients is that there needs to be an good assessment thing for ME/CFS. Drs do not understand how badly this patient group is at home and doing, they think cause a patient has got in, they usually assume the patient can do that so think they are fine but rarely realise that that may be the only time in a week that patient has got out of bed. The ME/CFS person has usually preemptive rested up sometimes for days for the appointment and then may spend rest of week recovering.
Drs should be refering ME/CFS on to the help services they may need eg home help, carer support etc. This is so rarely happening cause there is a huge blank there in the drs understanding on what is going on in the patients home life and this is due to I believe lack of a good assessment for form ME/CFS on this (there needs to be one made up specifically for our illness to cover all the areas severe ones with this have issues with).
Simple things should be being assessed eg can you do your dishes? do you manage to get your groceries when you need to (I've often been left without food being too ill to shop or sort out shopping), what's your diet like? are you managing to cook? etc etc. Why isnt this routinely done by doctors with their ME/CFS patients? Why arent the severe issues this group is having in taking care of themselves being recognised? (Ive used my cat litter container at times for a toilet when I get too sick to be able to get myself to the loo (the cat used it too). I dont think Ive had a dr ever ask me "do you have trouble getting to the toilet?)
crazyily ME/CFS people are being left who cant do those things. (my dishes sometimes get done by another once a fortnight, my house is so discusting Ive been thinking of ringing the health dept).
If you want to find something to do to help ME/CFS patients, I really suggest to form some assessment form to assess ME/CFS which doctors can be encouraged to use (to make sure they then understand how their ME/CFS patients truely are). To try the bridge the lack of understanding doctors have (drs seem to understand the issues the elderly have, so why not us?)
(I have trouble doing things like getting my meds right due to ME/CFS brain fog, Ive ended up in hospital with an accidental overdose due to that but have been still left in this situation).
Another thing, Ive found social workers, counsellors generally shocking at dealing with ME/CFS patients due to this illness is too complex for them to understand. I've been given so many unsuitable suggestions by them including to get a sheep (when my backyard turned into a near jungle as I cant do my garden). How when Im so sick could I even take care of a sheep?
too often these ones have made me feel worst due to completely inpracticable advice eg another piece of advice I was actually given by a professional.. "go out and see friends or go for a walk if stressed" (said when I use a wheelchair and cant get around without being pushed! Im stuck at home). All the personal dealing with ME/CFS people should be trained in this illness before trying to counsel any of us on it (I once tried to commit suicide after a counselling session went wrong due to complete inappropriate things being said, I will no longer phone help lines if down due to this).