Dunedin woman and former mental health nurse Paula Stickings became well known in the 1990s.
She fought for the retention of neurosurgery services in Dunedin and played an instrumental role in campaigning nationally to get a better deal for seriously injured ACC patients and their families after her sister suffered a head injury.
On Mother's Day this year, the 20th anniversary of the day her then 32-year-old sister Jennifer Williams sustained a severe head injury in a motor vehicle accident, the family was planning a celebration of its survival.
On cooking duty, ready to produce a special seafood paella, was Ms Stickings' husband, Roger Tobin (51).
Such plans had to be abandoned when Mr Tobin woke up with an excruciating headache and later collapsed from a brain bleed.
Ms Stickings said there was no neurosurgeon rostered on at Dunedin Hospital that day but a locum neurosurgeon was still in town and available to give expert advice.
Mr Tobin, who is deputy principal of Logan Park High School, was kept in the Dunedin intensive care unit while discussions took place between the Christchurch neurosurgery team on the risks of surgical clipping versus coiling the aneurysm to seal the artery.
Coiling is a procedure, not available in Dunedin, which involves placing a long catheter in the body through the femoral artery in the groin up to the brain through which fine coils of platinum are placed to stop the bleeding.
Ms Stickings said while there was a higher risk of rebleeding with this than with clipping (where a metal clip is placed after opening the skull), it was less likely to result in damage to surrounding brain tissue.
It was also considered the safer option in her husband's case because of the location and characteristics of the aneurysm.
Fortunately, Mr Tobin remained stable overnight and was able to be transferred by light plane to Christchurch the next day with 19-year-old daughter Rosa in support.
Ms Stickings said she had an hour and a-half to return home, pack and organise her life, which included overseeing arrangements for the ongoing care of Ms Williams.
She travelled on a commercial flight and was keen to be in Christchurch as soon as possible to support her daughter.
Her fear was that Mr Tobin might die on the way and her daughter have to cope with that alone.
Transfer of neurologically compromised patients was not "magic and instant" or a matter of "snapping your fingers and you're there".
In this case, it was 25 hours of "life and death and full of uncertainty".
Mr Tobin's transfer to Christchurch involved four shifts in various modes of transport with risk each time, along with the risk of a trip at high altitude.
The family praised the standard of the medical care they received at Christchurch Hospital, but are highly critical about some of their experiences on the neurosurgical ward.
There, they felt "terribly isolated" in an "extraordinarily busy" ward where there was much pressure on beds.
"We felt like interlopers from outside of the area," Ms Stickings said.
Issues, including what the couple considered inadequate pastoral care and poorly planned transfer arrangements back to Dunedin, were still to be raised with the Canterbury board.
Mr Tobin described the transfer home as "harrowing".
Ms Stickings said the family's personal financial resources were stretched "beyond belief" during 10 days in Christchurch and many people could simply not afford to support their family member by travelling out of their own region.
Hidden social costs including finding cover for roles back home, whether that was child care, care for the elderly or looking after dependent relatives, were not covered in these situations.
Having to return to Christchurch for outpatient follow-up was also difficult and they have had to postpone it already because it necessitated at least a two-day road trip, something Mr Tobin would find tiringMs Stickings was concerned pressure on Canterbury services, should all neurosurgery be situated there, would be so great that out-of-town patients would be made to travel too soon, placing them at risk.
The couple had not publicly shared their story earlier because Mr Tobin, who had been making good progress, continued to be plagued by fatigue and had been in a vulnerable state.
Much of their energy had also been taken up with on ongoing debate with Mr Tobin's health insurer, who the couple feel was trying to push him back to work too quickly to avoid paying out.
Ms Stickings said the couple had taken out the health insurance for medical disability after her sister's accident because Mr Tobin was the main earner for the family.
They realised the impact of random events and Mr Tobin's accident had shown that "lightning strikes twice".
Mr Tobin said the difficulty with his situation was that he did not look impaired.
His biggest issue was fatigue, something common to head injury patients and which he said doctors had told him could take one or two years to abate.
He worried people would think he was "some sort of malingerer".
"All of a sudden, I just run out of brain energy. The brain starts shutting down and I can't cope the way I used to."
He said he knew his job and he knew he was not ready to go back to it. He did not want to sound like a "moaning teacher", but if people thought that teaching was "a lark, they should give it a go".
Among Mr Tobin's duties as a deputy principal was dealing with disciplinary issues, something he said was taxing even when he was not affected by fatigue.
Despite the ongoing battle, they have been following the neurosurgery debate closely and feel strongly that the service needs to be retained in Dunedin.
Ms Stickings said she worried that privatisation of part of the service was part of the agenda for the Christchurch-only model.
In the time since her sister's accident, there had been a significant reversal in the way the service was delivered, she said.
Inpatient neurosurgical services were now under threat but inpatient rehabilitation and community services were considerably improved, Ms Stickings said.
The family was concerned the Canterbury board was already under pressure to provide services and that the Southern area had a much better record of regional service than Canterbury.
Mr Tobin considered that in the long term coiling would become more commonplace and could be provided in Dunedin.
Ms Stickings said she felt it was time for people to devote attention to how a future service could be governed and she was working on a submission to the expert panel which would include a suggestion for a governance model to secure the service for the Southern area.
While she had not worked out the detail of her proposal, she envisaged the setting up of a special trust for the service, sitting outside of the district health boards, which would have its own set of objectives .
Its membership would include consumer, clinical and some political representation with attention to ensuring equal representation from the upper and lower parts of the South Island.
Part of its job would be providing an endowment to assist the University of Otago to appoint a professor who could provide professional and academic leadership for the service.
Such a person would ideally be in their 40s with "20 good years ahead of them" and not motivated by money but the desire to perform "very good work for the community and with a commitment to academic excellence".
The person would need to have the sort of standing that Prof Sam Bishara commanded and a dedication to public sector work.
The University of Otago was highly respected internationally and there was excellent brain research already occurring which could be enhanced by the right leader.
Ms Stickings said coming to Dunedin could be attractive to some suitable applicants for a variety of reasons.
Money to help fund the post could be raised across the region, building on the feeling in the community.
Given the support from local bodies, a levy across the region might be a possibility.
Ms Stickings said she would be keen to discuss her submission with the panel.
The date of the panel's next visit has not yet been set. Mr Tobin, who is a member of the University of Otago council, said he could not comment on his wife's governance idea.
