Emergency Care: Carrie’s story

Published Date
Alexa Follen

Muscular Dystrophy UK’s ‘Ambulance Action’ campaign aims to encourage ambulance trusts across the UK to set up a flagging system that alerts paramedics and first responders that the person they are treating has a neuromuscular condition and allows them to access individualised care plans before they arrive on the scene.

Carrie Aimes (pictured) has Ullrich congenital muscular dystrophy and below shares her experiences of emergency care in the UK.

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, resulting in 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. Having endured several bouts of acute pneumonia, a collapsed lung and pleurisy; ambulances, A&E and hospital wards are all too familiar to me. 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 muscular dystrophy, 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. Every time I have called for an ambulance or been admitted to hospital, I have 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.

Muscular Dystrophy UK’s ‘Ambulance Action’ campaign has been created to address the issues highlighted by Carrie to ensure that all people with muscle-wasting conditions have access to high-quality emergency care. The campaign aims to:

  • Ensure clinicians are aware of Ambulance flagging systems where they are available, to support paramedics knowledge of muscle-wasting conditions, allowing them to give appropriate treatment
  • Work in partnership with paramedics to better support the emergency care of people with muscle-wasting conditions
  • Create and distribute condition-specific alert cards that advise health professionals on the key do’s and don’t’s when caring for someone
  • Work closely with ambulance services via our Services Development Committee, chaired by Baroness Celia Thomas of Winchester
  • Hold an All Party Parliamentary Group meeting alongside ambulance and NHS services on emergency care for people with neuromuscular conditions in early 2018

To find out more about our ‘Ambulance Action’ campaign and to get involved, get in touch with David Stephenson at d.stephenson@musculardystrophyuk.org  or on 020 7803 4826.


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