Living with a chronic illness/disease, the focus is placed on a number of things:
- The condition,
- The medications,
- The doctor or specialist
Often times, there are elements forgotten in the day-to-day struggles, the physical and emotional effects, and access to care. For me, personally, many of these areas were missing in the early days of my epilepsy diagnosis. The lack of resources, education, and experience provided by the medical system directly hindered patient care and the chances of successful treatment, proper diagnosis, and mental health support. The fault lies with the institution, not the individuals left to their own defences. Imagine trying to fix a car without the basic knowledge of how an engine works, without any practical experience and guidance.
I recall during those first years, the fear and anxiety of emergency rooms and hospital stays. Of the disparities between home and Calgary. Home was offered an inadequate system with little to no support for those living with uncontrolled seizures, depression, anxiety, misguided notions, and feelings of isolation. Restricted access to epilepsy centres, neurologists, optional therapies; surgeries, mental health professionals, testing, newer medications, were lacking. What was missing was the front line care no doctor could provide. The nurses. With my varied medical history, despite family members entrenched within the field of medicine, I had easy access to nurses and nurse practitioners to offer the immediate support, understanding, and calming presence most doctors hadn’t the time for. The care I received for the multitude of ailments such as, surgeries, medications, phone calls, etc. was far superior. Yet the value placed on these dedicated individuals has been insufficient, misguided, and unforgiveable. I hadn’t realized that, or more importantly acknowledged it, until my epilepsy diagnosis and most recently, when my psychogenic non-epileptic seizures announced themselves. But after listening to the International League Against Epilepsy’s podcast, Sharp Waves, Nursing in epilepsy care: Roles, Value, and the road ahead, today, I realized just how important the epilepsy nurses are.
All those hours. All those visits to the SMU [seizure monitoring unit] at Foothills Hospital, my interaction with the nurses and 24/7 support in a 4-bed unit, felt like I had my own personal nurse and a morning visit from the epileptologist during rounds. Don’t get me wrong, I’m not playing down the role of the team of doctors and surgeons. My goal is to raise the awareness, the importance of the epilepsy nurses.
Whether in hospital a seizure unit or epilepsy clinic, these professionals are within arms reach. A press of the button a telephone call and I have access to knowledgeable and caring angels there to guide, support, and answer question after question to ease a tortured mind.
It saddens me how the range of education, knowledge, and expertise is somehow missing for all nurses. That they are left to figure it out. Must rely upon the experiences of those who’ve been there done that and on-the-job training, trial and error, or moved elsewhere to areas considered more important.
So, the next time you need help. The next time you’re scared, have questions or just need to talk to someone who can relate, on the medical side at least, remember who answers the phone, who talks you down when anxiety spirals out of control. The front line support person, the key to opening doors to the other side of panic.
Don’t forget the nurses, they belong on top of that pedestal beside, not below the neurologist, epileptologist, psychiatrist, psychologist.
Enjoy your day and here’s to a seizure free month.
Linda [aka Anne]
**and as usual. These are my thoughts, my opinions, my experiences and are not meant to advise or offer a should or shouldn’t do.
PS. Here’s the link to the the International League Against Epilepsy website, with links to the Sharp Waves podcast and the episode transcript.
PPS I’m proud to say my own Epileptologist and Past President of the ILAE, Dr. Wiebe was one of the many instrumental in shining the spotlight on the awesomeness of these dedicated individuals.