Dialysis patients are spending thousands of dollars just to attend surgery, while many others have driven hundreds of kilometres while so sick from blood purification they constantly vomit on themselves, or face chemically-induced sudden-onset fatigue, a local advocate has said.
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Mrs Nicki Scholes-Robertson, who leads the Armidale-based Rural Kidney Association, lost the use of her kidneys in 2014.
She told an upper house inquiry into rural health there was "issues of safety" caused by patients being forced to drive themselves to and from treatment in different towns "even though at times they are too unwell to perform this safely".
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"I myself have driven home from Tamworth to Armidale whilst on dialysis with low blood pressure and feeling very unwell, but not having any other options to attend an appointment," she told the inquiry.
The treatment can leave patients suddenly very fatigued, and unwell. In Mrs Scholes-Robertson's case, she had undertaken blood purification at home on a day that she had a Tamworth check-up and the process was taking effect in her abdomen on the trip back
"I was very unwell and I had nobody [to drive me]," she said.
"You sort of feel well enough when you're leaving Tamworth. But [when] I got home I couldn't even remember driving, I was that unwell.
"I'd been vomiting on the way.
"The tricky thing on dialysis is you can feel well for a couple of hours, but then you can be sick. And it happens so quick and you can go downhill so fast that it changes rapidly. It's a really hard call to make. It's not about it being illegal, but is it safe? Is it the best thing? No it's not. I think most dialysis patients at some stage have driven home feeling very unwell."
It's not even a rare experience, she said.
"I talk to a lot of patients who drive home sick from dialysis and they're kind of like I probably shouldn't be, I'm probably not safe enough to be driving, but what other options do we have if we want to get to these appointments?"
Some have been involved in accidents or near-misses - which is a particularly severe risk when the region's roads are covered by black ice, or kangaroos.
Dialysis patients - people who need their blood to be chemically cleaned, either in hospital or at home - are at the pointy end of the rural NSW tyranny of distance.
For many, there is no hope of recovery. They may need to attend hospital three times a week until they die.
Armidale has six dialysis chairs, which is usually sufficient to service their population.
But patients often need to go to Tamworth, or even further away, for specialist surgery.
And it's even harder in small communities like Tenterfield or Glen Innes, which don't have dialysis options. They're forced to drive hundreds of kilometres for the basic blood purification procedure.
Mrs Scholes-Robertson told the inquiry an Armidale patient paid $600 for a single taxi ride to attend an urgent procedure in Tamworth.
The same patient spends around $4500 every three months to top up her in-home care package and for transport to and from appointments and dialysis three times a week at her local hospital.
But the government's Isolated Patients Travel and Accommodation Assistance Scheme has not been increased to meet rising travel and accommodation costs, offering just $40 a night for transport and accommodation.
Mrs Scholes-Robertson said the health system just is not designed for people in rural NSW.
"I think there's an attitude that more and more of the health system is becoming centralised because that's a cost saving for the government. But the thing is it's putting an additional burden on the patients and their families to get to these centralised services. I think there's not enough outreach where the specialist services come from Sydney and Newcastle to the outlying places," she said.
"It's quite tricky because we are becoming a centralised health service, where anything slightly tricky involves going to Newcastle or Sydney."
Nearly 400 patients from across rural NSW have shared their personal stories with the upper house inquiry into health outcomes and access to health and hospital services in rural, regional and remote NSW.
Andrew Messenger
Politics, environment and energy journalist at the Northern Daily Leader. I also write about health, bushfires and occasionally music. I'm a Brisbane boy by way of Charleville and Hobart who now lives in in beautiful New England. Get me at andrew.messenger@austcommunitymedia.com.au
Politics, environment and energy journalist at the Northern Daily Leader. I also write about health, bushfires and occasionally music. I'm a Brisbane boy by way of Charleville and Hobart who now lives in in beautiful New England. Get me at andrew.messenger@austcommunitymedia.com.au
