A letter to SWAST.
Ben can not fathom how ventolin aggravates poor respiration in me. I cannot answer that. The medication for my breathing and that for my neurological disease are diametrically opposed.
While he cannot understand, I have to live as well as I can with no one anywhere knowing how to ease my physical symptoms. I am the one in the UK. My respiratory disease is an unintended and unforeseen consequence of experimental stereotaxic brain surgery that left me with akinetic mutism.
He could show some respect and compassion for that. He is the only paramedic to put my kettle on to boil and not produce a cup of tea as a consequence. Charlotte had the kindness and compassion to make a cold drink when I requested it, as a cup of tea had not been made.
Ben preferred to lecture me about the need for a nebulizer at home. I did not need or benefit from that lecture as I take responsibility for my health but cannot alter the NHS and its failings.
Ben said he is an educator. So am I. In many places and in many fields, including ethics and care of the dying. Ben failed me in my dying. It will be long and slow. He should read the symptoms of hypoxia and think about how he would want to be respected in such circumstances. He would not want to encounter the Ben I encountered yesterday.
If it were not for Charlotte, I would have asked him to leave. Charlotte gave some compensation to me and I appreciated it and still do.
My palliative team is in awe of my cheerfulness, compassion for others, and that I deliberately enjoy my life.I am grateful for some wonderful friends, HCPs, and other things and people, but Ben is not in that number. Bristol Ambulance, and other paramedics, except Mark Penwarden, are far more compassionate and kind.. He could learn from Mark Humby or Colin McCracken and others whose names I forget, Ross is based in Bournemouth. Ross could show Ben how to better conduct himself.