Ashburton woman NikkiJo Tyrrell has written to local MP Jo Luxton and copied in the Prime Minister and Health Minister in a desperate attempt to get treatment and help for her chronic health problems.
She was diagnosed with ME (myalgic encephalomyelitis) and Lyme disease 23 years ago, but recent checks have identified ovarian cysts and widespread endometriosis as well.
NikkiJo has been battling the health system to get treatment for her new diagnosis since late July, but has been frustrated and dismayed by the slow, cumbersome process.
“Despite utter debilitation, multiple hospital visits and specialists saying I need surgery, I continue to be declined in the public health system.”
“Now, there is something absolutely treatable that would also help the ME and give me quality of life,” she said.
NikkiJo said she was trying to get the help she desperately needed and also raise awareness of her health and others like her who struggled to access treatment.
“We now know why I cannot break through the plateau of progress that I am stuck at, despite all my treatments.”
Her most recent referral through the public system went back to square one because a pain questionnaire was missed.
NikkiJo said it could be next year before she could access surgery, despite the fact that she was bedridden, in extreme pain and has constant ambulance call outs and hospitalisations.
She has just had her fourth PICC line inserted for IV access, which has cost her nearly $1000.
“I’ve had to pay for all four, despite trying every avenue for funding and despite the fact this would be fully funded for cancer patients.
“A longer term portacath was preferred but I could not fund the $7000 required – again, this would be funded for cancer patients.”
NikkiJo and her family have had to self fund much of her treatment for many years, including treatment overseas in 2018.
“I have been ignored for two decades by our health system and only self funded treatments have kept me alive or given me any chance at life.”
If no treatment is forthcoming NikkiJo is faced with the prospect of having to raise money for private surgery, which would cost up to $20,000.
“The more people I talk to, the more horror stories I hear from other women.”
-By Mick Jensen