Yesterday we met our Adult Neurologist in a hospital clinic, over 4 months after Joshua turned 18 and 3 months after we were discharged by his pediatric consultant. Joshua was in good form as we drove to hospital, with the windows down and his favourite loud music blasting out. His clinic was held in the Cardiology unit for some reason, but they explained that it was just where the consulting room could be booked. But it did mean that there was nobody like Joshua in the waiting room, where we were for over 30 minutes, but he sat waving at the elderly, heart patients.
Joshua is not a very patient waiter these days, so we had some kicking and running up and down corridors after 15 minutes of sitting nicely. He was weighed but resisted the contraption on his head to measure his height. He was not impressed by the blood pressure monitor either, so he wriggled too much for it to take a reading until I suggested that she swapped the cuff to his immobile arm. In the end I had to resort to a visit to the cafe to buy something to distract him and he sat beautifully drinking his orange juice and eating a satsuma. Thankfully soon afterwards, we were called in by a small doctor who did not introduce herself to either of us.
She told us to sit down next to her desk and I joked that Joshua loved to play with keyboards and telephones, so I would sit him furthest from her desk. She was not impressed by this declaration and launched into her questions, straight faced, about his seizure type and frequency and then checked that his medication was as she had on her screen. After a few minutes, as predicted, Joshua stood up and tried to get to her tempting equipment on her desk, but she told him to sit down again. Unimpressed, he made a bolt for her door and so I had to retrieve him. She had absolutely no empathy at all and made no attempt to engage with him, which got my back up – who would want to sit in an office being talked about? I would have kicked off too!
She told me that the hospital clinic environment did not suit Joshua – he is fine with it with no waiting times and friendly staff, but I had to agree that her clinic did not suit him! She therefore has referred him onto a community health professional who also has experience of learning difficulties – which clearly she lacked. I stood over her, holding Joshua’s hand, as she explained that Adult neurology did not work in the same way as Pediatrics and she avoided the question that I asked twice about how frequently he would be seen. In the end I asked her bluntly ” are we finished now then?” as she sat writing, while we both stood behind her, and she agreed that we were. It was with real relief for both of us that we got back out into the sunshine and the loud music in the car – we both needed that to be able to calm down again.