Amanda
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Amanda is in her 60s and has been diagnosed with chemical sensitivity, characterised by chronic symptoms as a result of low-level exposure to chemicals.
She told the Royal Commission she has difficulty accessing medical and other allied health services because of her disability.
For example, Amanda tried to make an appointment with an ophthalmologist in regional NSW, but practice managers at two clinics said they could not provide a fragrance-free environment, which would require staff to avoid fragranced personal and cleaning products on the day of the appointment.
Amanda also has difficulty accessing hospital care, and was treated badly when she did.
Prior to admission for surgery on a severed tendon, Amanda asked for a private room so she wouldn’t be impacted by fragranced products. She was given her own room, but when staff moved her onto a trolley she waited with other patients, one of whom smelled strongly of cigarettes and fragrance. When Amanda asked for somewhere else to wait, the nurse in charge made fun of her.
Amanda needed to stay at the hospital overnight for IV antibiotics. She is unable to eat wheat products and various other foods because of her disability, and cannot eat strawberries or oranges. She advised staff, but the next morning was given a breakfast of strawberry yoghurt, white rice bread with strawberry jam, and orange juice.
Amanda is often unable to access shops because of the air fragrances they use.
‘I am unable to access churches, public buildings, theatres and restaurants and public transport due to chemicals present,’ says Amanda. ‘I also struggle to get prescriptions from my local chemists due to fragrance in the buildings.’
It is also difficult for Amanda to access services offered by her worker's compensation insurer due to the staff not understanding her condition.
‘I was unable to see the doctor/specialist they had approached as I could not travel that distance ... I cannot be in traffic or in a car for more than an hour … Being in the city would also be an issue because of the pollution from fuel/exhausts and also the amount of people around wearing fragrance.’
Amanda believes it would be a good idea to keep all health related services fragrance and chemical free.
She would also like to see official recognition of chemical sensitivity as a physical condition in Australia and for medical staff to receive appropriate training.
‘The attitude of some medical staff makes life even more difficult due to their disbelief in regard to chemical sensitivity being a physical/physiological disease,’ says Amanda.
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.