HELPING HER HOME TOWN: Former Gisborne woman Nicola Kayes says she always wanted to bring her research and knowledge home to help those in Tairawhiti. Picture supplied
A traumatic brain injury when she was 58 wiped out Carolyn Pere's past.
“Apparently I was a midwife and registered nurse. For 40 years,” she said.
Now four years later, Carolyn is one of three mentors in Tairawhiti who will help others who have suffered a traumatic brain injury (TBI).
It is part of a peer-mentor pilot programme being trialled here, in Kaitaia and Auckland, to fill a gap for people with a brain injury after they have been discharged from hospital.
The programme will match mentors, who are further along in their recovery, to people who have recently suffered a TBI.
Anyone who would like to be mentored, up to a year post-injury, is being asked to come forward so they can be matched with a mentor.
The woman behind the pilot is former Gisborne woman Nicola Kayes, whose passion was always to bring her research and what she does back to help her home town.
Ms Kayes is the professor of Rehabilitation, and director for the Centre for Person Centred Research, at the Auckland University of Technology (AUT).
People with a TBI feel very isolated for years after they have been discharged back into the community, she said.
“That's the gap. How can we better support people once they've been discharged to enhance outcomes once back in the community.
“So they can live their lives again with a brain injury.”
Carolyn has lived it herself. She believes this programme will be the “best thing” to happen in the TBI arena.
“I hope ACC support it.
“The first year after a TBI it's like you're travelling blind, in a dark tunnel, there's no one to tell you if it's going to get better or when.
“If I'd had a peer mentor it would have been “If I'd had a peer mentor it would have been hugely beneficial,” said Carolyn.“If I can share what I know and how I recovered, it will offer experience, strength and hope from another person who understands, and just knows.”
A misdiagnosis in 2017 of a migraine and an earache meant Carolyn was sent home by the hospital only to return hours later in a critical condition. with bacterial meningitis and septicaemia.
Carolyn was transferred to Waikato Hospital where she stayed for nine months in ICU, and HDU. It was while in HDU Carolyn suffered a fall which led to her TBI.
Carolyn then suffered a stroke.
It was life-changing.
“I've been her, then there's me with the injury.”
What did flow through was her determination, courage and strength.
“It is quite miraculous and phenomenal what I can do now.”
In November, Carolyn will compete in the Iron Maori triathlon being held in Napier.
She runs two to three hours every day to train. The high level of fitness is not something she would recommend but exercise was crucial to her recovery.
“Just walking is a good start for anyone.”
Carolyn had to learn to walk again, and has been unable to live independently since her TBI.
“I had no perception of safety, I would walk in front of cars and left the gas on.”
She lives in her home with a caregiver, beside her friend Jenine who has been a huge part of her recovery.
Micaiah Baker, 23, from Tokomaru Bay is another mentor in the pilot programme.
At 17 she was in a car accident with her brother and sister, which left her with a TBI after a blood clot put pressure on her brain.
“Although grateful for the services I did receive, living in a rural town somewhat off the beaten track means the services available to us are very limited.
“As much as my whanau played a huge part in my recovery, I do believe it would have been great to have a mentor or role model who knew what I was going through and who was living proof that life doesn't just stop once you've had a brain injury.
“Quite early in to my rehabilitation at ABI (the intensive brain injury service in Auckland) I was fortunate enough to make friends with other patients —patients from all different walks of life, different ages and all.
“Having had a TBI in common meant so much more than I can explain.”
Micaiah said this pilot programme offered an opportunity to give back and help TBI survivors and their families better understand it from lived experiences.
It was also an opportunity to keep her mind moving and grow intellectually.
Ms Kayes said giving mentors a chance to contribute and do something positive, with what otherwise had been a really traumatic experience for them, had a positive impact.
It created paid employment for them, gave them back a sense of purpose and they were contributing to society.
Things were lost when people were out of work, or dependent on others, said Ms Kayes.
If this programme could provide the evidence that peer support worked in recovery, then they could present that to ACC, get the service funded and out there to the people who need it now.
“We already undertook some feasibility work and the findings were really positive. We now have a grant from the Health Research Council to undertake the full trial and so the Tairawhiti service is part of that bigger trial.”
Ms Kayes has seen how people get “wooshed out of their home and familiar structures after a brain injury, and into a world of hospitals.
However, even though TBI patients were dislocated from their home and families they did have the benefit of specialists, and high quality care.
But when they got discharged back into their community, there were no specialist brain injury services in New Zealand outside the large centres like Auckland, Wellington and Christchurch.
Which is why having this programme piloted in communities like Tairawhiti and Kaitaia reached those who felt most isolated.
“The key thing was to talk to someone who had the same experiences as you, learn from them and foster a sense of hope,” said Ms Kayes.
“These mentors have been where they were and were able to move beyond that to another space.”
The third mentor is a 69-year-old Gisborne man who did not want to be named.
He suffered a TBI when he and a mate were struck by a car in a hit and run by the Olympic Pool 18 months ago,
“I was run over at 67, woke up at 68, and I'm 69 now.”
“This brain injury has impacted everything.
“It's been a bit of a journey I'll tell you.
“We're fortunate to be breathing.“
All his life he had been heavily involved in sport as a player, coach and personal trainer.
“I don't travel anywhere now because I never know how the day is going to pan out.”
Describing what it was like to other people was “awkward”, he said.
“Whatever is going on between our ears is pretty hard to explain, It really is.
“Some days I feel OK. Then for the next so many days, for whatever reason, you just feel absolutely terrible.
“It's not a muscular injury where you can see a physio and a doctor and do this and it will come right in six weeks.”
He said he was never sure if the information he was passing on was what people wanted to hear.
“It's very confusing.
“I'm very interested if I can help somebody.
“I know I have improved. I haven't quite got there as such but I know I'm close.”
Exercise had helped hugely. He had to learn to walk again post-TBI and now walked 30-40 minutes a day.
Ms Kayes said it was important to get to know and understand what it was like for people after significant injury or illness.
Speaking to people with traumatic brain injuries, they've told her services are clustered at that early time post-injury.
But back in the community, especially in isolated places like Gisborne, TBI patients got a raw deal with far fewer, if any, services to help.
Ms Kayes studied health psychology in Auckland. In 2005 she was appointed as a researcher at AUT.
“My real passion is how to apply what I know from health psychology to a rehabilitation context following diagnosis.”
Ms Kayes was inspired to pursue her brain injury research after an aunt was diagnosed with multiple sclerosis.
■ If you would like to take part in this pilot programme please contact Gisborne service coordinator Kathy Gott on 021 205 1948, or e-mail her at
Anyone who has had a moderate to severe brain injury in the past year can apply.
■ This is a link to videos created for people who might be interested in taking part so they can get a sense of what it involves:
The death of the 26-year-old has been referred to the coroner.
