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Best foot forward

Dylan went to the doctors today. Thankfully as a healthy child he doesn’t see the GP much. At all.
But recently I’ve noticed small bones protruding from just above the arches of his feet. The bumps are rubbing on his shoes resulting in him having small pressure sores developing. Dylan’s having to wear socks in the current stifling heat to avoid the skin there breaking down further. 

Although Dylan lets me look and check these lumps without complaining, his body language tells me it hurts. He flaps violently when he thinks they are going to be touched, his whole body stiffening with anxiety until he is reassured thst these sensitive areas won’t be meddled with.

We had no option but to visit the GP. We talked this through with Dylan who appeared to be okay and understand the basic process we were explaining to him. 

Appointment time came and went but Dylan was a superstar waiting patiently in the busy waiting room for his appointment. Finally we were called into the GP office Dylan kept his anxiety under control and allowed the doctor to look and feel the bony protrusions. I explained to the doctor they don’t look right and seem sore although Dylan’s communication difficulties make this really hard for him to relay to us.

‘Its all fine ‘

 doc said as if I was being a bit silly bringing my concerns. He went on…

‘We all have different feet, as long as he is exercising plenty he’ll be fine. 

Keep him moving”

That’s it. Consultation over. 4 minutes.

Dissatisfied with the advice from the GP we leave politely and get in the car so I can contact my default doctor for advice; 

Dr Google: search term “painful bump on side of foot”

First result of many all saying the same thing is this:

Seems Dylan is fitting the descriptor for a diagnosis of having Accessory Navicular Bone. 

Side effects of which are possible fractures, loss of stability of joints, development of ‘flat feet’, loss of mobility and pain which “gradually becomes worse, and… is aggravated by activity, walking, etc.” Resulting in Accessory Navucular Syndrome which can be debilitating and require a range of treatments.

Seems my inital discontent at the advice of ‘exercising plenty’ was not misplaced and indeed will not remedy this issue. 

I’m so mad! 

  1. Dylan has his diagnosis of autism in bold on his medical notes on the computer screen. 
  2. I told the doctor clearly that Dylan can’t tell us if he’s hurting. 
  3. We never go to the doctor but had presented for this ailment so it clearly is a concern and we were nothing short of fobbed off. 

First thing tomorrow; I’m self referring to a podiatrist for a proper examination for Dylan and some advice for me. Something I think I probably should have done in the first place. 

Grrr!

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John Doe

There once was a man called John.

John had a fall, in a public place but it was an unwitnessed fall and afterwards he was complaining of pain. When questioned it was deemed that his knee was the site of the injury and he was rushed off to be scanned and assessed. All assessments came back clear from injury so John was discharged to a rehabilitation unit to have therapy on the soft tissues damage he was deemed to have in his knee. 

John continued to exhibit signs of pain – he has limited communication which is acknowledged by the hospital staff. He continues to report the pain in his knee. His mother is with him all the time, deemed a bit of an interfering pain to the hospital staff she continues to pester the staff, unable to rest as she is adamant that her son never complains about pain, he has a high pain threshold, something isn’t right.  Her pleas are ignored. John is encouraged to commence a rehabilitation programme – he is advised to mobilise and cycle as part of his therapy. Often crying and reluctant to comply his mother becomes more and more vocal that something isn’t right. After days of no improvement he is sent for another knee scan, which continues to be normal, he also for some unknown reason has his ankle scanned too, both clear. The therapy continues, more tears, mum becoming more and more bothersome. Niggles about lack of care turn into complaints, an interfering mother, a reluctant complex man who won’t adhere to therapy advice. Reports of food being left out of his reach, unable to get to his drinks, not given his glasses or hearing aids.  Meals missed, therapy being pushed, more tears.

Three weeks later John has another scan. After repeated requests from his mother John has a body scan in light of the constant reports of uncontrollable pain it turns out that John has been cycling on the gym with a fractured pelvis. The break had which had been present since the unwitnessed fall been missed on numerous occasions, this is not acceptable but it happens, there is human error.

What is not acceptable is the disregard for the viewpoints and concerns of John’s mother, her repeated voicing of the fact that John was demonstrating signs of severe distress and in her exposing this sign of his condition the attitude that then developed towards both John and his mother is inexplicable. 

John is in his 50s, his mother in her 70s. John has a known learning difficulty and various disabilities. None of these were taken into consideration when his responses to pain were assessed. The person best to interpret his behaviours, his mother, was deemed a pest. Almost unacceptable that she would remain with him all day and was most likely repeatedly told 

‘Go home and get some rest, we’re looking after him’

Is it any wonder that as parents we don’t leave, we don’t stop watching, checking, researching. It’s exhausting but it’s all we can do to try and keep our loved ones safe. Even in a place of care with highly trained and very experienced professionals, no one listened to John or his mother. John was failed. Over and over again.

I do not know John, I’ve never met him but I know he exists and I know his story is true and it scares the life out of me and fills me with fear for Dylan.

One cruel lesson that I am being reminded of on a daily basis. 

Trust no one.

Image from sectioneduk.wordpress.com