Auckland resident Wendy Matthews has the ill-fortune of not only having an illness that falls through the cracks in the health system, it isn’t even recognised.
She has Chronic Fatigue Syndrome (CFS), a condition recognised in the United States and Britain, but cuts little ice with funding bodies in this country.
Unable to get any assistance beyond her GP, she relies on a friend, Marie Dent, another with CFS who has moved into her home to help.
Matthews says New Zealand is no place to contract a rare disease such as CFS or Ehlers-Dalos Syndrome because not only is there no funding to provide targeted help, medical staff have no training in how to recognise it when they see it.
“I know this illness does not always make sense,” she says. “The symptoms don’t always show up on tests, but it is real.
“We need a system that offers empathy and believes patients, even if you don’t understand what is going on.”
Matthews says her condition means she can’t cope with a hospital environment. Her only option is to remain in bed which is creating additional health issues.
Hers is one of many stories related to the Yes We Care campaign over the past month.
A coalition of community groups, Yes We Care has travelled the country highlighting issues involving healthcare underfunding and not met medical needs.
It’s wanting to collect enough testimonies from patients, healthcare workers and community groups to force an independent inquiry into a study published recently in the New Zealand Medical Journal that found at least one in four adults can’t get the primary healthcare they require.
It also found 9 per cent of patients who do get primary care then fail to obtain secondary care, such as a referral to see a medical specialist.
Simon Oosterman, a PSA organiser who has helped run the campaign, was unsurprised by the study.
“We have hospitals refusing hip and knee patients a place on a waiting list because they are overweight,” he says.
“It’s ridiculous. They’ve only gained weight, or find it hard to lose weight because they can’t walk.”
* Refer online to www.yeswecare.nz to find out more about the campaign.