This time yesterday I was looking forward to Joshua’s Sports Day and the fitting of his EEG with optimism : Sports Day was postponed as it poured with rain at lunchtime and so would not be safe or pleasant and the EEG did not go to plan either:
I collected Joshua from school to get him to the hospital in time for his midday appointment. it was not long before we were called into a stark room where they fitted electrodes and Joshua was invited to sit down in the centre of the room..Then the conversation went like this
staff ” do you know why you are here today?
me ” yes I do”
staff ” can you tell me why you are here then?”
me ” we are having an EEG to investigate why Joshua does not sleep at all on a regular basis; I got one hour’s sleep last weekend because he was up all night after a seizure and then we got no sleep at all on Sunday and that is not sustainable!”
staff ” Oh.. well that’s not whats here on the referral sheet from Dr___…. this says that your seizures are increasing and she wants to capture as many as possible on the EEG.”
me ” oh, well that’s not what I understood..why don’t you ring Dr__ and ask her?”
staff ” we don’t want you to have unrealistic expectations.. I wonder if we should go ahead?”
me ” well we are here now, why dont you ring Dr… my expectations are really low already”
staff ” are they?”
me ” Yes, because he has already had the seizure and sleepless nights for this week, so I doubt that in the next 2 days you will see a seizure or a sleepless night, but we have to try don’t we?”
staff ” well then lets just try our best….”
With that, and me feeling wretched, the two staff start to place colourful electrodes on his head, without any real preparation! Understandably Joshua reacts badly with waving his arms around, kicking his legs and shaking his head wildly, shouting “no, no, no!” The staff stop, look at each other and mutter:
” oh, this is going to be impossible”
There was no attempt to calm Joshua down, they were only thinking of themselves. I suggested that we ‘assume my at the hairdresser’s pose’. So we re-group with Joshua on my knee and I pin his arms down to his body and they start again, with an equal lack of success, as he will not keep his shaking head still. I suggested that we needed another pair of hands and was told sharply:
” You’ve already got half our team as it is!”
At this stage I was close to walking out as my son was distressed and there was no empathy in the room at all. But they called a male colleague , who was the most personable and who actually spoke to Joshua as he clamped his head still. I swapped into an armchair, with 9 stone Joshua on top of me, holding his arms close into his body and work can re-start with the electrodes.
The male employee calmed Joshua down by talking reassuringly to him throughout, while his colleagues tangled us both up in wires. After 20 minutes like this, the 25 electrodes were attached and my legs were trembling and Joshua had relaxed, resigned to the activity that he could not prevent.
We stood up and immediately Joshua hugged the male employee to say thank you and I forgive you for holding my head and then I got the same treatment, but no such hug was proffered to the two ladies who had handled him so badly. I suggested that they could have had some music to relax/distract him in the stark, unfamiliar environment but met no response.
The wires were then gathered together into a pony tail and drawn together into a bag that he is to wear so that he can move freely. I was shown the button that is to be pressed to indicate any seizures and I was given a diary to be kept, monitoring what Joshua is doing at all times of day. They asked me if I would stay up most of the night watching and monitoring him. I replied:
” Are you serious? after the weekend of 1 hour’s sleep that I described to you??”
So, I apologise that this is my longest entry yet, but what could they have done to make this a better experience for all concerned?
– Been more welcoming when we arrived and explaining what they thought was going to happen and why, rather than suggesting that I did not know what was going on and that it was destined to fail.
– Talking to Joshua and reassuring him from the outset, instead of being more concerned about themselves, after all this was their job! They did not seem to appreciate that having 2 strangers pounce on your scalp, with no explanation, and a very smelly glue, might be an objectionable sensory experience to which he might react badly. I would have thought that a fair number of those patients who have epilepsy , might well also have a brain injury, so where was their training to handle that eventuality as it was not at all evident to me? I will be making a complaint to the Trust.
– By showing more empathy for what mine and Joshua’s life, living day in an out with epilepsy, might be like and suggesting that this ordeal might be worthwhile through the results that they can produce.
The really unfortunate thing is that, we have to go back there today at midday again to be checked over and have his batteries changed and I know that the man who received the hug, is on leave today. I will let you know if they have reflected on their behaviour at all and how Joshua responds to his return visit.