So after a recent set of discussions on the Migraine Australia chat facebook group and my Neurology appointment today I couldn’t shake the feeling of how strongly a lot of my experiences have been geared to uneven power divide between the medical profession and the patient.
For example I had super forms I needed my neurologist to sign which had had been sitting in his to do box since August. Between August and today I sent emails and called trying to prompt to get the the form filled in to no avail. So today I asked the receptionist for these forms so I could take them into the appointment and I would have him do them in person. When he saw them he immediately let out an exasperated “more paperwork, I am drowning in paperwork right now I really don’t have time”. But it took him a minute to write a summary of my condition and sign the form. So why should I feel like a burden or I asking for to much when I need this and have been requesting it for months?
Then the other point was raised about migraine diaries and how my specialist requested me to use one particular type because that is the type he requires his patients to use so he can read their diaries easily in his mind.
So why is it that asking for things in an appointment that we have waited months for is an inconvenience? Or because we decide to record things differently to your set diary doesn’t mean my pain is any less than what I say it is.
I remember really bad times where I have have waited months in pain, counting down the days for a 15 min appointment for a glimmer hope that my life would get better.
So what is the answer? I think it comes down to the fact that at least for migraine disorder it is not just a neurological disorder and to treat it as such is ignorant. It has vast social, psychological and co-morbid effects on peoples lives.
Neurologists need to injunction with their standard practice embrace that the disease is a holistic process that effects every part of a person’s life.
A way to transition to delivering better continuity of care would be to have neurology Nurse Practitioners at neurology outpatients. Patients could see the Nurse Practitioners to assist with disability support pension applications, super forms, centrelink forms etc. They could also run some medication titration clinics as well as pre neurologist check-in to see how everything is going and if there are any queries.
This would would help but I think fundamentally it comes down to re-building the doctor-patient relationship and that being one of a therapeutic alliance rather than continuing on old biomedical model of worship doctor.
So next time you are asking a question in your appointment or asking for a form to be signed and you get attitude politely remind your doctor that this your appointment (your time you have waited for) and you are meant to be working together on a plan.
Go get them warriors.