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"A poor process"

About: Guy's Hospital / Paediatric neurology

(as a parent/guardian),

My 7 year old waited 6 months for an appointment with a dystonia specialist. Our son has 2nd degree dystonia after a tragic accident that caused a catastrophic brain injury 4 years ago.

We were hoping to have a chance to ask our questions and find a way forward together as we are desperately trying to help our son's daily condition improve, The experience was terrible.

The doctor began to ask about our sons ENTIRE history, from the pregnancy through to the accident. This took up the entire consultation. 90% of which surely should have been in his handover notes. Each and every letter written by his neurologist has a summary of his medical condition and his current medications. Anything previous to this could have been requested in advance by an administrative team surely. The doctor proceeded to make us recall our sons first steps - steps he will never take again. Recall our sons first words - words he will never speak again!!!! On and on they went. We were floored. I did speak up and say how traumatic we are finding this. At the point of actually discussing our son's current issues of dystonia, they abruptly said that their next appointment was already waiting and proceeded to rush through a plan of increased medication. We didn't discuss any of his current medication doses that we'd hoped to modify. We had a list of questions that we just couldn't get to ask. 

Secondly, we, his parents, are having therapy and medication to deal with trauma of the accident and to be faced, without warning, the questions of our sons healthy past and tragic accident was extremely triggering and has set us back in our mental health healing by orders of magnitude!

There was no care given to our mental health around these questions and I made the point to make that very clear. 

We had a carer in the room with us, of which was introduced so the doctor was aware, who never knew about our son's accident and to hear about it in this way was tragic. It was a private matter we wanted to keep private.

Why doesn't the admin team request certain background information and provide it in advance for the consultants to read before the appointments? This would save the time of the expensive Drs and their time can better used discussing the current issues and talking through the plan of action carefully and answering any questions. Instead our experience was a consultation that lasted around an hour and all except the final few minutes was the traumatic history gathering exercise. We literally were traumatised at the end of it and tearful. 

The action plan sadly hasn't worked and because of the rush at the end we don't know if we will get a follow up consultation or when. A letter came through the post and it was as though that's done and dusted, back to your local neurologist. 

All that trauma for us as parents to give us such a brief plan of action and perhaps never to consult with us again. A simple question of "was your child developmentally typical until the accident?" would have been sufficient. Time and tears saved in buckets. 

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