Volunteer firefighter who fought Tasman fire made to wait for disability funding after developing rare autoimmune disorder

A volunteer firefighter, who dropped everything to help fight the Tasman fires, says he has spent months waiting for disability funding after developing a rare and extremely painful autoimmune disorder.

Greg Barrett, who was diagnosed with Guillain–Barré syndrome shortly after the fires in February, has spent months waiting to hear whether he’s eligible for a grant from the Government-backed support agency Enable New Zealand. The grant would help convert his car to hand-control.

The extremely painful condition is where the immune system goes into overdrive and mistakenly starts attacking the body’s nervous system and presents in different ways in different patients.

Mr Barrett says he initially noticed a sore throat while out battling the fires and things escalated quickly on his return.

"It just progressed from a sore throat to a very, very sore back and it just travelled down my legs and within. I got home on a Thursday, and by Monday I was in hospital," he says.

His condition deteriorated quickly and his wife, Vanessa, initially thought she was losing him during the trip to the hospital. 

"This pain would just come in and his whole bed would just be shaking, and that was Greg just trying to control the pain, pulling his hair, trying to create pain somewhere else," she says.

"He couldn't speak because the pain was so intense, and the whole bed that he was sitting on or lying on was absolutely shaking and vibrating."

At one point, doctors prescribed ketamine, a drug usually reserved for palliative care patients.

The Christchurch businessman, who runs merino headwear company Forty Three Off, was forced to rely on the help of his wife to get by and spent several weeks in hospital before he could get home.

As it wasn't an accident, it can't be covered by ACC, but there is some limited disability funding available through the Government-funded support agency Enable New Zealand in certain situations.

Mr Barrett, who still can't feel his feet, says he applied for a small grant to put hand controls in his car in June but he's still waiting for the case to be resolved.

Occupational therapist Kevin O'Leary, who is handling the matter on his behalf, says the system is often slow.

"The system is creaking a little bit at times, I think the volume and the demand on the system is really, really high," he says.

Enable New Zealand wasn't available for comment today but the secretary of the NZ Guillain–Barré Syndrome Trust, Tony Pearson, says many patients with the condition fall into a grey area.

"Whether that's work and income, or whether that's the health and disability system, there needs to be a route that a patient in that condition can make a case for financial support for the duration of his disability," he says.

The three-month wait for the car modifications has been agonising for Greg as he says he just wants to get back to work and take some of the pressure off his wife.

The lack of independence has had a massive impact on his mental health.

"You go, oh man, I've got this opportunity here, it's sitting up the driveway and I can't get involved further in our business or my normal way of life and it just eats into your soul because it just goes day after day."

The volunteer, who dropped everything to help his community, is still waiting for help at his greatest time of need.

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Greg Barrett, who was diagnosed shortly after the fires, has spent months waiting for disability funding to help with his recovery. Source: 1 NEWS