If you’ve read my previous posts you will know that it took getting a confidence boost from a pro Skateboarder for me to have the final showdown with my GP, that eventually led to him being proved wrong about what was happening inside my body. What that last consultation showed, though, was that I actually had a very well stocked arsenal but I was using it both incorrectly and inefficiently. With that in mind, here is a rundown of the tools you can use when dealing with an obstinate medical professional. Hopefully, these will eliminate the need to be struck by inspiration. Don’t get me wrong, inspiration is wonderful (and I will forever be grateful to Rodney Mullen….) but it’s not always as forthcoming or guaranteed.
1. Keep a symptoms diary.
It doesn’t have to be anything detailed, just a few notes on what you’re experiencing on a daily basis. Be sure to record anything out of the ordinary, but also remember to document anything that has become your ‘new normal’. It can be easy to forget, for example, that a persistent headache isn’t something that most people are living with; it may have become mundane to you, but it is also a sign that your body isn’t behaving correctly.
2. Acquire your medical notes and study them.
In the UK you can request any and all medical notes, held about you, under the Freedom Of Information act. This is called a Subject Access Request (SAR) and you do not need any special forms to fill out, or legal procedures to follow. You simply send a letter or email to the medical establishment in question stating your intent, and a reply has to be made within forty days of receipt. If you have a hospital ID number, or you know your NHS number, be sure this information is present within the SAR. There is usually a charge, and a GP surgery can set their own price within limits (usually under £50). When I requested my notes, I had to make a couple of follow-up enquiries before they finally released the information I had requested, so don’t feel as though you’re being a nuisance if you have to do a little nudging.
Once you have your notes, grab yourself a highlighter pen and some mini post-it notes, and flag anything that seems relevant. A GP is rarely going to have time to read through your medical history before a ten-minute consultation (mine was completely unaware of the fact that I’d had major kidney surgery in the previous year), but you will. Patterns can, and do get missed; plus you’ll get an insight into what you’ve been tested for, and any speculated diagnoses that were abandoned – I, myself discovered that one of the group doctors believed I had Chronic Fatigue Syndrome, but chose not to follow this up. Take all of these notes with you when you go to your appointment. Even if the doctor isn’t listening, you will still have proof of your pro-active attitude towards your own health. This should help to bolster your argument if you are accused of time-wasting or seeking attention.
3. Ask questions pertaining to your own health.
This may seem blatantly obvious, but it’s very easy to fall into a traditional ‘doctor knows best’ mindset, once you’re in the office with the door closed. If you have been flatly refused a referral, or a series of tests, ask why, and state that you want those stated reasons to be recorded in your notes. This ensures that this information can be accessed by other medical professionals in the future. Additionally, whatever battles you’re dealing with may be part of a larger problem, and it’s only by getting this information on record that any preponderant and, or, damaging attitudes will come to light. For example, in the United States, men are more likely to be diagnosed with heart disease but it’s women who make up over half of the condition’s fatalities.
“Other research supports this idea. One 2005 study, for example, found that women are less likely to get tests to diagnose heart-related illnesses. And in 1999, a survey of physicians published in the New England Journal of Medicine found that doctors are roughly half as likely to recommend cardiac catheterization, a test that determines the severity of heart disease, when the patient is female.” Vidhi Doshi
But the more these incidents are recorded, the better health care will become for future generations. I know it’s not necessarily our job to be trailblazers, but when it takes someone, on average 7 to 10 years to get diagnosed with Endometriosis, I think we owe it to those who are yet to come to at least try to clear away some of the thicket.
4. Be persistent.
This can be very difficult; particularly in the UK where politeness runs through our veins, and the prevalent theme in society is to ’not make a fuss’. While I was still trying to get somebody to actually listen to what I was going through, a colleague told me that I sounded like someone who was recovering from a horrific car accident. Oddly, that struck an interesting chord. Would it be okay to tell a victim of a car crash that the pain ‘couldn’t be all that bad’? In all truth and honesty, unless the accuser is residing in that person’s body, they have no idea what their pain feels like. Only you know what it’s like to live within your body: and it is you who has to live within it. If you know that what you’re suffering from has a physical root, keep pushing for answers, particularly if you’re being told that said root is psychological. If my GP had performed a simple Hawkins Test, (completely free with no special equipment needed) he would have seen for himself that the bursitis and AC joint arthritis, in my shoulder was real, and not a ‘general ache from an unspecified anxiety disorder’.
5. Don’t let your guard down.
Even after my doctor ‘conceded’ he chose not to tell me what he’d conceded to. If I had simply taken it on trust that things were moving forward, I would still be waiting for this mystery appointment seven months down the line. And, as you may have seen from this previous post, I was left playing an irritating game of ping pong between the doctor’s office and the hospital as I tried to get the doctor to honour his agreement. Now, this could merely have been a simple oversight on his part, but as he was so adamant that he was correct, it could have been a ploy to see if I would abandon my quest for an accurate diagnosis. Always stay vigilant. Remember that referrals are sent electronically – even if the hospital or specialist has not yet set a date to see you, they should still have received the request within seven days of your last meeting with your primary care specialist.
6. Stay strong!
Trying to get the right diagnosis can feel like banging your head against a medical brick wall; but all of that pain and stress can, and does, pay off. Back in December 2015, I contacted my doctor for further treatment of this rather persistent bursitis issue. I was expecting another battle, but because I now had an ‘official seal of approval’ from a specialist, the doctor had no further grounds to deny me treatment (I must admit that I nearly swallowed my face when my request was accepted, without query…) Additionally, I didn’t even have to make one phone call to check on who had been talking to whom – the date for my appointment was set for the 14th of January 2016. Use whatever positive support network you need to keep your head above water (I watched that TED talk a lot!) until the seriousness of your situation is truly understood.
I truly hope this list provides you with some armour if you’re still fighting for a diagnosis.
Until next time.
Don’t waste those spoons!
The Martian Princess Chronicles 