Chronic traumatic encephalopathy or CTE is a progressive disease that develops after repeated head injuries like concussions. Photo: NICK VEASEY/ SCIENCE PHOTO LIBRARY / AFP
The wife of former All Black and NZ Māori player, Tutekawa Wyllie, who is suffering from a brain disease caused by the game says it is hurtful that they have never heard from NZ Rugby, offering the organisation to "come and feed him off a teaspoon if they like."
Margaret Wyllie fought for years to get ACC to accept her husband had chronic traumatic encephalopathy or CTE, a progressive disease that develops after repeated head injuries like concussions.
All Black 823, Tutekawa Wyllie, known as Tu, suffered numerous head knocks playing top level rugby during the 1970s and 80s.
In 2022 ACC accepted a claim for cover after a consultant neurologist diagnosed "probable" CTE caused by his rugby career.
The Wyllies were grateful for the support they have had from the New Zealand Ruby Foundation, a charity that helped seriously injured players.
But Margaret Wyllie believed New Zealand Rugby itself had failed to acknowledge Tu's condition or accept rugby was the cause.
Tutekawa Wyllie pictured in 2013. Photo: Tanith Wirihana
She told Checkpoint it was hurtful to hear NZR saying they had care and concern for former players when her and her husband had never heard from them.
"It just really galled me last week to hear them come out and say they had basically, implied that they were right there with us, but [they're] not at all."
Margaret Wyllie said it had taken years to first get a diagnosis, and then acknowledgement and support from ACC that Tu Wyllie was suffering from CTE.
"At every turn, ACC tried to say it was this or that. Parkinson's, Alzheimer's... all sorts.
"There are various tests and scans you can have in most of those cases to show that it isn't those. So even though it was pretty hard going, we went and did everything they suggested and in the end I think we just proved that it wasn't any other thing and it was what it was."
She said having recognition of her husband's condition had made a huge difference.
"I felt he was just owed some proper answers, and it seemed more and more likely the more reading I did that it was CTE so I wanted somebody to acknowledge that that's what it was."
Currently Tu Wyllie is not able to do anything for himself, requiring care from his wife, who is his primary carer, 24/7.
"He can't feed himself, toilet himself, he can't talk, he can't walk... he's having trouble now with swallowing, which is part of the condition as well."
Health professionals have confirmed Margaret Wyllie's suspicions that her husband's CTE was caused by rugby and the repeated head knocks that came with it.
"He was never known for holding back, he always had a go. No matter what size the opposition was so, and you know, there were several recorded occasions of concussions and many that probably went unrecorded."
Margaret Wyllie said getting acknowledgement from NZ Rugby that her husband's health and CTE was linked to the sport would be another step forward.
"It would be a start, wouldn't it? It would be good to hear something like that, that they actually believe it. I mean... how much evidence do they need before they are willing to do that?
"We spent a lot of time and effort in the rugby world... the focus seems to be so much on the young ones and the professionals, and I feel there's this whole group of former players that have just going under the radar now really and struggling."
She said her husband's ongoing presence in the rugby world plays a large part in their hope for acknowledgement and support.
"They still have Tu in their advertising material and the rugby museum's got him right there and his rugby club's got him up on the wall. As for real life, day-to-day, it's a different matter altogether."
While she hoped for the organisation's support, she said their lack thereof didn't surprise her.
"It's only to be expected really, if they make any acknowledgement they're taking on some sort of liability and that's the last thing they want to do."
New Zealand Rugby told Checkpoint in a statement they sympathised with Margaret's position and apologised if their public statements had caused her any harm or confusion.
It went on to say it was deeply committed to the wellbeing of former players and their whānau.
It supported injured players and their families through the on-going funding of the New Zealand Rugby Foundation, which provided care and financial assistance to those who've sustained injuries.
New Zealand Rugby said it absolutely acknowledged the medical evidence that Tu was injured playing rugby, noting he was the first former rugby player to receive a public acknowledgement and ACC funding for the diagnosis.
They did not respond to Wyllie's invitation for a visit from them.
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