Is it ever ok to challenge your doctor ?

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.

Mental Health Awareness Week ! You are having a laugh.

Oh gosh, so where do I begin ? This has been one of those weeks ! Sometimes I can ease the stress of my harder weeks with a large bar of chocolate and a glass of wine. This is not one of them…

I have two teenage daughters, both of whom suffer from social anxiety but with varying levels. The eldest daughter is nearly 17 and I am fully aware that she experiences anxiety when dealing with certain situations, for example she recently had a job interview and she felt very anxious about it. That’s normal right? I think it is and she understands that it is too. She knows that if she has to attend several interviews that the anxiety will ease and she will know what is to come and what to expect. I am not down playing her anxiety, it’s not easy. When I was in a high powered role at work I often used to get very anxious about meetings. How would I get there? What if I got lost? What if I was late? Who would be there? However, for both of us we understand that these feelings of anxiety are normal and also that some level of anxiety is good for you. As a family we were recently able to have a tour of some African elephants and we were told that they too needed some level of anxiety or they became bored. So anxiety is not necessarily a bad thing, you just need to understand it.

I am also aware that I need to respect her boundaries, she is at that age when she is becoming an adult and she needs some privacy and so I only get involved when she asks for my advice or needs my help. I try to get the balance right but I am sure that at times she wants me to interject more often but sometimes I miss the signs. I know I don’t always get it right, I know because she tells me. Ultimately though I feel that she has enough people around her that she can turn to to ensure that she is safe.

The other teen in my life Bonnie is soon to be 14 and she is also experiencing anxiety but because she is home schooled and autistic we spend a lot of time talking about her anxieties. Some of them seem to be crazy (some drive me crazy), but they are real big issues to her. The things that I find hardest about her anxieties are that they seem to have really bad physical effects on her. For example if she is worried about something, even ever so tiny like the length of her hair, she obsesses and obsesses about the problem until she feels faint, her heart races, she sweats and has a headache. She also can experience psychological feelings and because I am not a professional, I really worry that I am not giving her enough.

So this week we visited the local GP. Bonnie explained how she was feeling and the doctor suggested that she be referred to CAMHS. As you may have discovered from reading previous blogs, Bonnie and I are not big fans of CAMHS. I still have yet to find anyone with a positive experience of CAMHS so for Bonnie this was not an option. We did ask for advice on private autistic counsellors but the doctor was unable to suggest anyone. In this day and age ? (big sigh). We talked about medication to help but due to the fact she is under 18 he could not prescribe this and that she would need medication from a consultant. As Bonnie’s intelligence levels are very high she is aware of the downsides of such medication, having researched this area thoroughly, and she is therefore very wary and would only use medication as a last resort but she feels that she is at that last train station and where does she go from here. It seems to her as though all avenues have been shut down and that she is left alone.

So we talked more about counselling to the GP and Bonnie explained her fears that she felt that counsellors would twist her words and not understand what she was trying to explain. The GP then asked her “Are you suicidal ?” “No” she replied. “But what if you were, would you know where to get help from?” “But I’m not ” she replied “Can you talk to mum? if you can’t, then you can text her from another room” Oh seriously this dude was pressing every button for me. Bonnie replied “I can talk to my mum and once again I am not suicidal”. We took his couple of cards with suggested online counselling, which by the way Bonnie tried the minute we got home, but that they were hopeless, with no understanding of autism and just left her feeling more isolated. What Bonnie found unbelievable though was that she had told this GP that counsellors would twist what she was saying and not really listen to her and here was a prime example of that. She was flabbergasted that he continually asked her about suicide. By the way GP top marks for putting the thought into her head, you did a great job there, really helpful (yes that is my sarcastic voice).

I know what he was trying to do was cover himself. He had no time to discuss these issues with her, he could not provide a clear path for her to follow to get help, he was clutching at straws and trying to cover himself by saying that he had discussed what she should do if she was suicidal. Oh that’s great for him if the sh@t hits the fan and she does try to kill herself but what about her ! To top it off we are in Mental Health Awareness Week in the UK, with programmes about the help you can get etc. Well where is that help ??? The programmes that have been shown highlight the long waits that people have to see the counsellors, they quoted 14 months in one programme for CBT counselling 14 months wait for a
mental health issue is disgusting, no wonder the GP is talking about suicide and no I am not being sarcastic now, I am angry that we are still failing those in society that need help.

So there we go, that’s my week. It’s been a pretty horrible one for me but an even more horrible for her. I would like to end on a positive note though so any suggestions that you have on coping strategies for her would be really appreciated. We have tried herbal remedies, writing in a diary, yoga, exercise, diet, talking etc and these all help slightly but not enough so I am open to any comments that you may have. As Einstein said ” Anyone who has never made a mistake has never tried anything new“.