Answers for Bee!
Answers for Bee!
My friend Bee, has not ever been given a proper diagnosis by her healthcare team/doctors.
Instead she has been given an umbrella term known as 'Degenerative Neurological Disorder' (DND). Which some doctors even dispute, thinking perhaps she instead has some form of a muscular disorder, which some refer to as 'Bee's Disorder'. It has been said that an EEG did not come back with DND present, however some of her medical team dispute this (as DND is hard to diagnose) and the rest think it could be something else. Essentially she has never been given the answers she needs or deserves.
Bee has been requesting testing for a while, and has been ignored and failed by medical professionals. She does not want to get a scan, and initially decided she was okay with having only an umbrella term for a diagnosis. However, without knowing what condition she actually has, she cannot find the right treatment or help!
Bee herself has said she is scared to dig deeper than the term DND, because this is all she has really known. She doesn't have a diagnosis within this and even the DND itself is almost just speculation by doctors. She hasn't been given the chance and testing at proper diagnosis and the doctors are really failing her.
The doctors seem to be all 'say' and no 'action'!
Bee has been left fearful of what her actual diagnosis may be. She has no prognosis as a result, and is simply living life a day at a time. I am sure everyone can agree this is no life for a person to face! Doctors should really be settling her mind and giving her answers, not leaving her without a genuine diagnosis or support.
Because of not having this diagnosis, it is more difficult for her to access certain treatments via the NHS. Some doctors have even suggested all she needed was CBT. However Bee is now degenerating faster, and her sezuires have become worse and almost life threatening. She needs a helmet which she cannot afford, to protect her head! However the NHS will not provide this, probably because she has never been given a diagnosis within her umbrella term.
Bee is fearful of the scanners, so has requested (and been refused) blood and genetic testing. How is she supposed to get a diagnosis if doctors refuse to treat her?
With a genuine diagnosis, Bee could be given the support, treatment and help she needs. But without one she has been left in limbo. She does not know where to turn to. And she needs more support from the medical professionals who are supposed to be caring for her!
Overall, Bee has been horribly failed by the doctors who are there to diagnose and assist her. Instead she has been turned away from testing, been given conflicting answers and been branded with an umbrella term that does not even truly explain the condition she has.
Please do sign this petition, so we can get Bee the testing she NEEDS and DESERVES. Without these tests she cannot even access high level PIP, or certain treatments! The entire thing is ridiculous and shameful :(
Please share this! We need to get the word out there that people like Bee are being failed! Bee does not deserve this at all, and if it is happening to one person, I am sure others out there have experienced this too!
It is disgusting that the medical professionals feel they can leave a young woman in the dark about her future, or even what her disability is!
If you would also like to make a complaint (The more voices the better, to get this heard!) there is a dedicated ombusman which you can find here: https://www.ombudsman.org.uk/making-complaint
Bee deserves a true diagnosis, and cannot be expected to live her life without one. Thank you!
#Beesright #Beesdiagnosis #Beesdisorder #AnswersforBee