Muscular Dystrophy UK | #AmbulanceAction campaign
Throughout my 28 years, I have on many occasions had to call on the Emergency Care services.
I live with the progressive condition, Ullrich congenital muscular dystrophy. Consequently, I have contractures of the joints, a severe ‘S’ shaped scoliosis, and respiratory decline. I lost the ability to weight-bear at the age of 10, and now use an electric wheelchair to get around. I live with my parents and employ a part-time carer as I require support with daily activities including personal care.
My primary medical concern is respiratory related. Ambulances, A&E and hospital wards are all too familiar to me, having endured several bouts of acute pneumonia, a collapsed lung and pleurisy.
Although general knowledge of my disability is limited within all areas of Emergency Care, on the whole my treatment has always been thorough and adequate, if a little clueless at times!
I have found that whenever muscular dystrophy is mentioned, medics immediately assume it is the Duchenne form. This can be incredibly frustrating as it clearly indicates a lack of education and awareness.
There are many different variations of MD, the effects of which are wide ranging. I do feel that comprehension of these various forms needs to be increased throughout the Emergency Care services.
Each time I have called for an ambulance or been admitted to hospital, I need to relay every detail of my disability and how it affects me. This becomes unnecessarily repetitive and extremely tiresome.
Worryingly, there does seem to be a large gap in the most basic knowledge of muscular dystrophy.
I cannot complain about the care and conscientiousness shown towards me by paramedics, nurses and doctors. However, I am concerned about being in a position where I’m unable to answer their questions regarding my condition.
For instance, it can be dangerous to give those with Ullrich congenital muscular dystrophy supplementary oxygen as we retain carbon dioxide. It is therefore preferable to support breathing with non-invasive ventilation such as a Bi-pap machine. Failure to communicate this vital information can be literally life threatening.
Furthermore, the fact that I require the presence of a carer whilst an inpatient can be problematic. This again, has to be explained again and again, thus demonstrating a complete lack of awareness.
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