Self-Advocacy story: Frances Ford In May 2021 I received a diagnosis of Generalised Myasthenia Gravis. I had two crises in the following year. During the first crisis, the Neurologist refused to see me and when I presented in A&E, they told me I had to see my Neurologist. I then caught COVID and was admitted to hospital. A few months later, my condition deteriorated again. My family were growing increasingly worried as I was losing weight rapidly and could not swallow medication. I had a few hours in the morning when I felt well enough to work, but by the evening I could not even swallow my saliva. I cannot tell you how frightened I was. Again, I could not persuade my Neurologist to give me an appointment, so I went to A&E a few times as I was having speech, swallowing and breathing difficulties. They held the same line with me, that I must book in to see my Neurologist. However, when I called to make an appointment, I was told ‘to give it more time’. I turned to my GP, and they offered to examine me and called my Neurologist to ask for some guidance on what to look for. My Neurologist told my GP that I did not need an examination and that I was just anxious, my GP however kept the appointment to examine me anyway. I knew I was deteriorating, and I shared videos and all the information I had with my GP. By this stage, a family member had offered to pay for me to see a private consultant near me who specialises in MG. My GP supported this decision and provided me with information from my medical record to take with me. I showed the private Neurologist video footage of the previous evening, and he told me I could not be treated as an outpatient, and that I needed to be seen at an NHS hospital as an inpatient. He called my hospital and advocated for me, and I was admitted later that day through the A&E department that had previously turned me away several times. By advocating for myself and being seen by a Neurologist willing to listen to me, I was able to be treated and avoided having a third crisis. Advice My advice would be collect evidence in the form of medical letters, photographs and videos, this takes the pressure off having to articulate when we are struggling to speak. I asked to change Neurologist when I was finally admitted. I was told to put it in writing, so I wrote a letter on a hospital tissue. This was my final act of self-advocacy in that episode of mistreatment. I now have a fantastic Neurologist who is prepared to listen to me and to trust that when I ask for additional help, I must need it. I learned that we need to be able to stand up to medical professionals, to tell our story succinctly and clearly, to become specialists in our condition and to find allies with professional power and ensure we can access the resources we need. Self-advocacy can be lonely and exhausting. The irony that those with myasthenia must have to go through this when they have difficulty speaking will not be lost on those who understand. But it is worth it! Manage Cookie Preferences