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Barriers impacting access to NHS care for people with ME and Long Covid - we want to hear your experiences
Irum replied to Patient Safety Learning's topic in Health inequalities
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I have ME and fibromyalgia diagnoses. I had to change GP several times to get anyone to take me seriously and listen to me when I first approached with a wide range of symptoms and a hypothesis, having knowledge of the conditions due to a family member having it too. I experienced unnecessary suffering at the hands of GPs who were not interested in what I had to say, some who seemed to want to frame me as a depressed young perosn who just wanted an excuse to be signed off sick from work. I only got a GP to listen to me after a mental health charity's advocate helped me to make a complaint. It should not have come to this. That advocacy service has of course since being decommissioned so what would I do if this happened now, I don't know. The current culture does not value patients as experts in themselves or as potentially intelligent people. After many years I made it to a specialist ME + fibro service. I have had to contact PALS recently due to poor administrative processes giving patients additional unnecessary burden. I had to be the messenger between my Dr and his secretary, had to ask for specific times for appts so that we could do x and y test during the appt. I have to repeatedly call and email when clinics get cancelled and rescheduled. It is a waste of spoons. It is baffling that the Dr and his secretary don't have the channels to communicate between themselves and that I am brought into it all.- Posted
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