I arrived at Liverpool John Moores University after volunteering to talk to student paramedics about Addison's through the eyes of a parent or carer. Debbie and I have supported our son, Ben, for seven years since his Addison's diagnosis.
I received a warm welcome from the two senior lecturers for Paramedic Practice, Jason Comber and Denise Dixon. They offered use of their lecture facilities, but I preferred to just talk, with some notes Debbie and I had drawn up. We kept the medical side simple, but tried to add interest and value for the paramedics. Forty-nine bubbly student paramedics arrived, with a few qualified and experienced paramedics joining the class. As I chatted with Jason and Denise there was laughter around the room and I wondered how attentive they would be.
I began by saying how much admiration and respect I have for paramedics who go into many unknown challenging situations, are expected to have more knowledge than they could ever hope to have, against a backdrop of panic, fear, possibly aggression, and life-threatening situations, and I thanked them all for embarking on this vocation.
Describing our journey
I began by detailing ‘our journey’ with Ben through poor health, diagnosis, and crises; realising that not all medical practitioners are conversant with Addison's and the prompt attention needed for prevention of an Addison's crisis. I was honest in saying that we knew nothing about the condition at the beginning.
Detailing Ben's first crisis was emotionally harder than I expected. I was humbled at how intently they were listening: taking notes, but with sheer, silent attention and paramedic focus. That was the moment I knew I was privileged to speak to this audience. I took a deep breath, looked up, saw encouraging smiles and continued. The whole presentation lasted about 1 hour 40 minutes but I did intersperse the 'script' with anecdotes that came to mind as we reached new milestones.
When a paramedic attends an incident, I implored them to take control of the situation, show calm authority but listen to patient or carers, look for any signs facially, bodily and any medical alert jewellery, and to reassure the patient, thus reducing their anxiety.
Denise, the lecturer, later thanked me for having said this as she frequently reminds them to use sight, ears, touch and smell - this compliment humbled me.
I explained that patients and their family or friends may or may not have an emergency injection kit; if there is one, they may be experienced with it, or they may be reluctant, and therefore, the paramedics may need to inject.
I responded to the probing questions based on our experience as caring parents, although I reminded them I was not qualified to speak as a medical expert.
An inspiring student reaction
I was honoured to speak to such an inspiring group of keen students. I hope that if in future they encounter an Addison's crisis or a patient yet to be diagnosed, this will be of help. If just one paramedic in the room made a difference to one Addison's patient then my mission was worthwhile. I wished the paramedic trainees all the luck in the world. Their reception was wonderful, wow.
I believe this was the first time this university paramedic course has involved a patient group. Would I do it again? Yes. Would I recommend others doing it? If you can talk to a warm group of receptive students, even showing a touch of emotion, then like me you will get that warm reward that comes with helping good people to understand how to care for our Addison's patients.
Liverpool paramedic students with Ken
I have done a lot in my life and this was up there with my best experiences ever. It was not about me, it was about our Addison's experiences, our son Ben's health issues and about how we perceived best practice could be.
Thanks to Debbie for her writing, to Katherine for nominating me, to Denise and Jason but a special mention to Helen Dawson who guided us through Addison's social meetings at Mellor towards learning how to be better carers for our Ben.
This article was first published in the June 2018 edition of the ADSHG newsletter.