I am back again. Apologies to those of you that have missed these blogs, however I wasn’t sure that you would still be interested in the ramblings of a middle aged woman. It would appear though from the requests that I have received recently, that you are out there waiting with bated breath (not quite but hey it makes me feel better).
So my question for this blog, ‘Is it ever right to challenge your doctor?’ was prompted following a recent appointment that my daughter attended with our local GP. For those of you living with autism and/or anxiety I do not need to tell you about the difficulties that are faced in even making an appointment. The process of making the phone call, the wait for the doctor to return your call, I mean the wait is a horrendous cause of additional anxiety and then there are the logistics of the time of day of the appointment. Will I be too tired as it is near the end of the day ? Will I spend more time worrying about it because it is at the end of the day ? The receptionist has no idea that the end of the day versus the beginning of the day is even an issue.
So let’s start with the cause for the appointment and see what you think to this experience.
My daughter, Bonnie, is approaching 16 and has for sometime now had an issue with the top of her spine/the base of her neck. There is definitely some sort of curvature which has been causing her some back pain down the length of her spine and some physical appearance issues have also been playing heavily on her mind. So she had asked me to book an appointment with her GP.
The doctor initially spoke to me on the phone and agreed that it was important to offer Bonnie reassurance and check it out. This all sounded very promising and although I personally did not feel that there was an issue with her back, it is not my place to offer this diagnosis as I am not a medical professional and it is important for anyone to get a back problem checked out. The doctor arranged a face to face appointment, which once again was at the end of the day.
After having waited a week for the phone call appointment Bonnie then had to wait a further five days for the face to face.
Five days of uncertainty, anxiety and constant googling. Now google, like other search engines can be amazing but it can also be our downfall, especially when time is on your hands. It creates a huge ball of angst that grows bigger and bigger and is fuelled further by more searches. The outcome according to Bonnie was a buffalo hump.
The day of the appointment arrived and the covid protocols for our surgery meant that we had to ring a bell where a receptionist would come and greet us and take us to the, normally packed waiting room, to wait for the doctor to buzz through for us. You are also required to wear a mask. Bonnie wore her sunflower lanyard as although she had at times worn a mask she found it can be very difficult if she has raised anxiety and causes her issues with her breathing and to focus on what she wants to say.
We were actually met at the door by the receptionist who was already dealing with a patient who was clearly trying to complete one of those dreaded disability forms that the government feels we should keep completing. Those forms are not easy and are clearly difficult to complete without help and so this patient was needing assistance. Please do not start me on this topic today, in fact I may blog about it tomorrow. It’s a big area that needs addressing…
Sorry I digressed. Anyway so the receptionist waves us in and we take a seat. There are normally about 30 seats in the waiting room and they are normally all full. Not today, today we have 5 seats in the room and only one was occupied. I get it, it’s the covid world that we live in. The only other person to occupy a seat was an elderly lady who when she stood up for her appointment had clearly been sitting down for too long in a hot waiting room, with a mask on, and stumbled into the wall. I quickly asked if she was ok, she replied that she was fine. The bunch of receptionists however, did not even break up from their screens to assess the situation. Far too busy obviously.
The receptionists themselves were rude, and you could over hear them talking to patients on the phone with little compassion and clearly feeling incapable of addressing their patients needs. I am unsure if the reduced number of patients throughout lockdowns has almost given them an excuse to be rude and not be able to meet the demands.
Fifteen mins after when our appointment should have been Bonnie’s anxiety was rising. She was sat on a chair two metres away from me, as per protocol and starting to loose it. She was getting agitated and her hands kept moving, her breathing was changing and she needed to get on with this appointment.
I casually called out to the lady that let us in, asking her if she maybe forgot to book us in. It turns out she had. So great here we go. We are now fifteen mins late for our appointment, Bonnie is as anxious as can be and we are about to meet a new doctor.
“My apologies Doctor, it would appear that they forgot to check us in “ I sweetly sang as a way of trying to get the appointment back on track. I’m not sure that this was received as I hoped it would be as I still got the impression that the doctor held us accountable for the lateness.
She asked Bonnie why she was there and Bonnie explained. Bonnie was brilliant and I was super proud of her, she was articulate and concise, although she never made eye contact once.
So here sat in front of her is a 16 year old autistic girl. Even if she had not read Bonnie’s notes the sunflower lanyard was a huge give away along with the non existent eye contact. I kept thinking this is it, she can clearly see that Bonnie needs precise, factual information and also some time and understanding. Well, that went straight out the window. “Show me “ barks the doctor. So Bonnie, who was sat down showed her the lump. “Oh that’s fine, it’s just your spine, what that little bit there? That’s the same as mine and your mums”. (Which by the way, it is not the same as mine, Bonnie’s is definitely more of a lump). “No” said Bonnie, “It isn’t. Maybe if I stand up you can see it better”. So she stood up and showed her. “No, it’s definitely your spine its the C7, ” followed by “You don’t seem happy with my response “. “Well, no I am not happy” replied Bonnie. “I went to medical school for 6 years to know what I am talking about” came the reply.
I didn’t say anything and do you want to know why ? I didn’t say anything because it did not surprise me. Any help, understanding, support that Bonnie needs has only ever come from her family. All the media exposure to mental health, all the promises from people and the government that they will support others with mental health always falls flat on the floor. The biggest disgrace is that this was coming from a medical professional. I think she felt that she had redeemed herself when she say to Bonnie “I will write it down on a post it note and you can google it”. The post it not said C7, spine. I despair.
So I discussed with Bonnie how I felt that it should have been addressed, with the doctor taking the time to fully check the length of her spine, perhaps asking her to touch her toes, to ask her about her posture, to establish any history of back pain within the family, to ask her if her bra has been checked to see that it is the right size and to basically listen to Bonnie’s concerns, with compassion and empathy. It’s a joke really that people with High Functioning Autism are perceived as having no empathy because rarely are they shown empathy.
Bonnie’s reply was “Mum, it does not matter if I had that lanyard on, it doesn’t matter that I am autistic, that doctor should have addressed the needs of the patient correctly no matter who they were”.
Once again she is right. So to the doctor who studied 6 years to achieve her medical degree, congratulations but you cannot presume that a 16 year old girl who does not have a degree is lesser than you in any way. Bonnie has a very wise approach to life, she is smarter in ways that you can imagine and will continue to out shine you in ways that you cannot learn in any degree.
- Any spelling mistakes, punctuation and grammatical errors are all my own, they are not the purpose of this blog. The purpose is to raise awareness of autism.
- This photo does have a filter on it. In fact in the un-cropped version I have a pigeon on my head.