SNN_August 2020 Issue FA_low res

August 2020
Volume 23 / Issue 2
SNNSpinal Network News
THE POWER OF MUSIC TEINA BOYD DR RICHARD SMAILL
Nick Cornish gets
back on the oboe
Tells a story about
fighting for her life
On his life of many
ups and downs
Family Ties—The Glentworth
family on ‘hanging in there’

NEW ZEALAND SPINAL TRUST 2
Contents
3
“I Can’t Hold in my Cry”
Editorial
20
All in the family — Mark and Kathy Glentworth
talk about playing the support role
5
2020 Supporting Positive Futures
Hans Wouters — CEO NZ Spinal Trust
24
We pay a visit to the Attitude BNB
in Auckland
7
Nick Cornish
Remarkable recovery of a professional musician
26
Dr. Richard Smaill talks about
never giving up
11
The BAIL team evaluate the NZ Spinal Cord
Impairment Action Plan (NZSCIAP)
30
Resource Centre
15
Telling it like it is
Teina Boyd
32
Introducing our team
Su Marshall on fundraising for the NZST
18
A Young Man who is not looking back
Jayden Glentworth
35
Funders and Sponsors
EDITORIAL TEAM
Peter Thornton
Hi my name is Peter Thornton, I am so proud to be the
editor of this great magazine. I believe it is a publication
that has the power to change lives. It has been a tough
year for many people around New Zealand, hang in
there and support one another.
CONTRIBUTING WRITERS
Peter Thornton
Hans Wouters
Bernadette Cassidy
Teina Boyd
Rachelle Martin
Matt Aldridge
THANKS FOR THE IMAGES
Jo Nunnerley
Nick Cornish
Dr. Richard Smaill
The Glentworth family
Su Marshall
Thanks to: The Glentworth family, Teina Boyd, Dr. Richard
Smaill, Nick Cornish, Su Marshall and Attitude BnB
Bernadette Cassidy
Kia ora, my name is Bernadette Cassidy, it’s a
pleasure to be part of the SNN Editorial Team. In the
last few months our lives have changed dramatically.
Be kind to yourself and others. Kia Kaha.
Patrons of the New
Zealand Spinal Trust,
Sir Tim Wallis (left) and
Trevor Harrison (right).
SPINAL NETWORK NEWS is
published by the NZ Spinal Trust
Send your contributions to:
The Editor SPINAL NETWORK NEWS
c/- New Zealand Spinal Trust, Private
Bag 4708, Christchurch 8140
Tel: (03) 383 9484
Email:
peter.thornton@nzspinaltrust.org.nz
Web:
www.nzspinaltrust.org.nz
Copy Proofing: Jackie Grimshaw
Cover Photo: Mark and Kathy were
there every step of the journey when
their 15-year-old son Jayden sustained
an SCI.
Disclaimer: The views expressed
in SPINAL NETWORK NEWS are
those of its contributors. They do not
necessarily represent the opinion
of the members of the Editorial
Committee or the policies of the New
Zealand Spinal Trust.
Correction: In the SNN April issue
we ran a story with Lynn James –
this story had Lynn’s name as Lynn
Stephens – we apologise for this error.

SPINAL NETWORK NEWS 3
“I Can’t Hold in
my Cry”
Peter Thornton
Editorial
The lockdown was a pretty special family time
but also had some challenging moments.
“I can’t hold in my cry” – that was the
catchphrase of my four-year-old daughter,
Charlie, during lockdown. Now my wife and I
weren’t too sure what she meant, but I can
tell you that this saying, and the screaming
that would follow, definitely tested our
patience during that time.
Taking care of two kids under four years of age during the
lockdown was like a reality television show. There were
plenty of ups and genuine moments of connecting with
the most important people in my life. But there also were
many moments when we literally wondered if this
madness would ever end, and if we would make it. We did
and, once the frustration subsided along with the wailing
catchcry, there was a good chance to reflect.
Perhaps little Charlie was speaking for all of us.
She couldn’t put it into words but, even at four years of
age, Charlie knew something wasn’t quite right.
Mindful awareness is about
learning to pay attention,
in the present moment, and
without judgment.
It is normal to feel anxious right now. I certainly have
been and with good reason. There is real uncertainty
about the future. People all around us in our communities
are struggling. The fundamentals of earning a salary,
putting a roof over your family’s head and food on the
table are things we often take for granted. At the moment,
we can’t afford that luxury. Providing for our families is
the No 1 priority at all times. When that was thrown into
jeopardy, in what literally felt like an overnight
development, it caused a fair amount of stress.

NEW ZEALAND SPINAL TRUST 4
Many years from now when COVID-19 is a “back-in-myday
story” and we tell our grandchildren, about the
pandemic, it is going to be some story. What will our
take-aways be? I think my stand-out memory will be
running along the beach, or just going for a walk around
the block to get some sun on my face and get some
perspective.
There are a million things to worry about and, if you let
your mind run away on you, you could find yourself down
a deep, dark hole. Don’t go there. At the New Zealand
Spinal Trust, Hans and the management team have done
a great job encouraging our staff to adopt a mind-set
of being grateful for what we they have and to look at
this time as an opportunity. Of course, there are many
days when this is easier said than done, but we must
always try.
During the lockdown our kids weren’t sleeping well, so I
slept downstairs with our youngest daughter, Georgia, to
make sure we all had some rest. Like most people, I
worked from home. This meant that everything I did –
where I slept, ate, watched TV and worked – was all
within about 15 metres of each other. If I didn’t go outside,
I could feel the weight of it all, and it started to erode my
ability to cope. I needed some help.
I attended a session on mindfulness with psychologist
Maya Nova, which was like a breath of fresh air. Maya’s
session was called “CREATING ORDER IN CHAOS –
Mindful Habits and Daily Rituals”, and I highly
recommend checking out her website: www.mindbalance.
co.nz or booking a session.
Maya provided some practical and valuable advice for
right now, and there were a number of key learnings I
have adopted.
She says: “Mindful awareness is about learning to pay
attention, in the present moment, and without judgment.
This reduces our tendency to work on auto-pilot, allowing
us to choose how we respond and react. Mindfulness
teaches us to respond calmly to situations and stressors,
to recognise our unhealthy mental and emotional habits,
to become more patient and tolerant, less judgemental
and kinder to others and ourselves.”
The four tips I adopted from Maya’s session included:
1. Keeping a daily diary of what I had been doing and
reflecting on it: The diary has been good to look at each
night. I could ask myself what were my priorities for work/
family/life and how did I measure up? What was in the
way and how could I better align my priorities?
2. Meditating (or, in my case, as a Christian, praying and
being still): Being still right now is important. I have been
working on my breathing - calming everything down and
focusing on what I am grateful for and hopeful for. It has
been a good mind-shift. Each morning I read from the
book The Word For The Day which is sent out by Radio
Rhema, and these words of wisdom are a good guide to
my thinking.
Many years from now when
COVID-19 is a “back-in-myday
story” and we tell our
grandchildren, about the
pandemic, it is going to be
some story. What will our
take-aways be?
3. Starting each day with sunlight on my face: Every
morning I take my cup of tea out to the front yard, sit in
the sun and just have a few moments to myself. In the
session with Maya, we were taught that “Sunlight and
darkness trigger the release of hormones in our brains.
Exposure to sunlight is thought to increase the brain’s
release of a hormone called serotonin. Serotonin is
associated with boosting one’s mood and helping a person
to feel calm and focused.” Five minutes in the sun or
daylight – no matter how cold in the morning – makes a
world of difference.
4. Limiting the amount of screen-time I have each day: it
is so easy to spend so much of our lives looking at screens.
You wake up and go straight on the phone, catch up on the
world’s news on Breakfast TV, and then go straight to the
laptop for the whole day, with breaks on the phone, and
finish the day with a few hours watching telly. It is not
good for our brains. We have to change. I have loved
chipping golf balls in my front yard or taking a walk
around the block and reading books. All of this is a step in
the right direction of stress management.
Doing something practical about the stress and anxiety
has made a huge difference.
Aside from the mindfulness, it is also really important to
be honest. We may be doing it tough but so are many
others. We are all in this together and, if there is one thing
at which Kiwis are brilliant, it is helping others through
hard times. Tell people about what you are going through
and give them the opportunity to help. No one has it all
sorted and, if they say they do, they are pulling your leg.
There is always hope, always tomorrow. Never give up.
And you know what if you are like my little Charlie and
can’t hold in your cry right now, that is all right too. I am
right there with you.

SPINAL NETWORK NEWS 5
Supporting
Positive Futures
Hans Wouters
CEO’s Column
From L- R: Paul, Hans, Nancy and Bernadette at the new NZST Resource Centre.
So, What Do You Do?
I meet many new people and, if any conversation goes
beyond the initial meet and greet, this is one of the most
frequent questions I am asked: (So, What Do You Do?)
This is how I answer “I have one of the most amazing jobs.
I lead an extraordinary team of people who support folk
who break their necks or backs.” A very interesting and
fulfilling conversation always follows. I do have an
extraordinary team of whom I am very proud. The impact
we have supporting positive futures is profound, vital and
tremendously valued by those we work for and work with.
The effect of the Covid-19 restrictions did not dent our
determination to reach people, even though we could not
access the spinal units.
As I write, this edition of ‘Supporting Positive Futures’,
New Zealand has experienced one of the most
extraordinary weeks in its political history. The
Honourable Nikki Kaye, former Minister of ACC, whom I
had the pleasure of meeting at the Beehive and was
impressed with, announced her resignation. Like
National Party Leader Todd Muller’s resignation at the
beginning of that week, Nikki’s came out of the blue. Her
reason for departing is one that is all too familiar with our
team at NZ Spinal Trust and those we support; Nikki
acknowledged “Cancer has taught me that life can change
We have worked hard to
support positive futures
despite our location
limitations.
in a moment”. She took sick leave from her ministerial
duties in 2016 for breast cancer treatment and her life, as
she knew it, stopped in its tracks and was changed
forever.
How does one adjust to a life-changing moment? One day
at a time, with deep breaths. I have encountered so many
people whose world had been turned upside down by a
spinal cord impairment, and have had the privilege of
observing and, in some cases, supporting their journey. I
liken it to a fork in the road - a whole, new unexpected
path in life. What is the path like? It is rich; it is painful; it
is dark; it is bright; it is hopeless; it is hopeful; it is
uncertain; it is fear-filled; it is contented; it is lonely; it is
crowded; it is bleak; it is even joyful. Above all, it is real -

NEW ZEALAND SPINAL TRUST 6
very, very real. On this journey, one will encounter a
whole other side of life which will touch them in all facets
of their physical, emotional and spiritual life.
Our founder, Professor Alan Clarke, declared 25 years ago
that each person needs to be in charge of their own
rehabilitation and that learning is key to that. That is
why we have an enthusiastic team available to help.
Our SNN readers who were around before 2016 will
remember the beautiful Allan Bean Centre and Library
located just beyond the Burwood Spinal Unit. One of the
most difficult consequences of being ousted by the
earthquakes from this purpose-built space was the
separation of our services. The last time our three key
Burwood-based services operated side-by-side in an
easy-to-get-to, accessible space was July 2014. We have
worked hard to support positive futures despite our
location limitations.
We are so very excited because the Resource Centre Team
recently joined our Vocational Rehab and Peer and
Whānau Support teams in the main corridor which
connects the Spinal Unit to the Gym – side by side again!
Being able to see people as they roll past our office doors
again and welcome them as they ‘pop in’ is a huge benefit
to us. It allows us to do so much more for families, as they
negotiate one of the biggest life-shocks they will ever
have. Do call in and see Bernadette and her team.
Finally, in response to an unprecedented number of
concerns expressed recently by the SCI community about
their carer agency, and also the variable agency responses
How does one adjust to a
life-changing moment?
to the Covid-19 pandemic, we are conducting a
nationwide survey of Care Agencies and their services.
If you or someone you know needs a carer, we would be
very grateful if you could complete the survey to help
us, as we seek to improve the services. Visit our website
to view the survey nzspinaltrust.org.nz
If you are reading the SNN magazine for the first time
I hope you find it interesting, uplifting and
encouraging, especially if you are new to spinal cord
impairment or injury.
Noho ora mai - Hans
PS NZST’s Annual Appeal is coming up – August 29th to
September 5th. Keep an eye on your letter box for my Appeal
Letter with the theme “Winning at Life”. Only 20 per cent of
our funding comes from government sources (ACC, MoH,
MSD, etc) so we really do rely on the generosity of our
community to help support positive futures. If you can help
us out with a donation, that would be awesome!

SPINAL NETWORK NEWS 7
Back in Tune
The Spirited Recovery of Nick Cornish to Play the Oboe Again
Nick says after what he has been through “It is almost a miracle for me now to
be playing classical music with others, at a professional level”.
For Nick Cornish, being able to play music is an essential
part of his life. So, when that was suddenly taken away
from him in November 2015 in a mountain biking (MTB)
accident, he was “crushed”. The professional oboe player
from Dunedin was out riding with his two brothers-in-law
when things went awry. He sustained a C-6 and C-7
fracture and peripheral nerve damage, which affected the
extensor muscles in his fingers. He had an incomplete
spinal cord injury. The now 60-year-old rehabbed at the
Burwood Spinal Unit, and set the goal of being able to
play the oboe again. The initial prognosis was bleak, and
his days as a professional oboe player seemed to be over.
But he has never given up and, after almost five years of
hard work and dedication, Nick is back on track. “I’ve
been very fortunate, to get my oboe playing back close to
where it was before,” he said proudly. We caught up with
Nick on his emotional journey, and how his love of music
has played a huge role in his recovery.
Take me back to November 2015…what happened in
your MTB crash?
I was up early to attend the Giant Demo Day at “The
Redwoods” Mountain Bike Park at Wakari Road, Dunedin.
I was keen to trial a couple of full suspension MTBs, as I
was genuinely fascinated to know how it felt to ride one. I
enjoyed the smooth ride and found myself swishing
around corners faster than usual in no time! Just before I
left the bike park entry, my brother-in-law, Brent, turned
up with Mark, my other brother-in-law, and we filled in
the forms together which said “We understand that, in the
event of an accident, no responsibility falls on to the Giant
company”, so we had a good laugh at that point!
I biked to a high point in the Redwoods, where we had
It took a few days for me to
realise that my voice was not
the same. This was upsetting,
and the impact of this loss
took several days to sink in.
arranged to meet. Then, I made the fateful decision to
attempt an advanced track called the “Roller Coaster”,
which I had ridden only once before with Brent. As I
approached the double bump, which Brent had said was
gnarly, I had lots of zip in the wheels, but it was too much.
At which point I came clean off the first steep rise into the
air, and landed head first on to the hard-as-concrete track
below.
My neck took the full force of my bodyweight. I’m only 77
kg, but it was enough to do some serious internal damage.
It was a shattering blow to my body, and I remember
thinking “I’ve screwed up big this time!” My next thought
was “There go my chances of playing with the New
Zealand Symphony Orchestra next week”; as I was due to
fly to Wellington for a week of work to play oboe in
Stravinsky’s Rite of Spring. I lay prostrate on the ground,
hardly able to breathe, but knowing that I had injured my
neck, as an overwhelming tingling sensation was causing
great discomfort in my right arm.

NEW ZEALAND SPINAL TRUST 8
At the hospital, the news came through “Nick, we are
sorry to tell you that you have broken your neck”, at which
point Brent broke down in tears. It was a shattering blow
and a clear indication of how hard I had struck the ground
after flying for a few metres. I had shattered two discs
between C6 and C7 and dislocated my neck. There was
quite a mess in there, including damage to nerves, which
connected to my hands and fingers.
The next day I was flown to Christchurch and transferred
to Burwood, where I had an operation. I had a titanium H
plate screwed into my neck to secure the shattered bones,
and the surgeons inserted some thigh bone into my neck
in place of the discs which had been destroyed… all very
clever! It was the start of my new life.
How hard was the rehab at Burwood, and the
mental adjustment?
At first I struggled to compute the whole event of flying off
a bike and injuring myself so badly. It was the result of a
reasonable decision I’d made to test out a few new bike
models. I was excited to see how they felt to ride...nothing
bad happening entered my mind. So here I was lying in a
hospital bed, having had an operation to fix my neck…I
actually felt very grateful to the surgeon, who did a great
job of putting things back straight in my neck again.
At this stage, I clearly recall not being able to hold a phone
in my hand, but I wasn’t sure why. I guess the drugs were
keeping me comfortable. I was taking 19 tablets per day at
the start. All the Burwood staff were so kind, patient and
friendly. I had to be moved around in my bed every four
hours to stop getting bedsores.
It took a few days for me to realise that my voice was not
the same. One of the nerves controlling my vocal cords
was paralysed, and I couldn’t speak normally. This was
upsetting, and the impact of this loss took several days to
sink in. Within 24 hours I had started to write a blog of my
rehab time at Burwood, which I published on Facebook so
my friends could keep up with developments and news.
The blog turned into a great form of therapy, helping me
to express thoughts and feelings at the time. I had a lovely
view from the window by my bed of trees and shrubs.
It was spring time and the weather was warming up by
the day.
A pleasant routine developed over the next few days. My
wonderfully supportive wife, Megan, was staying at Ranui
House in town, so she was able to drop round every day.
She took leave from her job teaching at her Dunedin high
school for the duration of my stay at Burwood… her
school, Kaikorai Valley College, was totally supportive of
her taking time off.
I was blessed to have not just Megan with me, but also my
fabulous stepdaughter Hannah too. Mark, my
brother-in-law, was also there, he was an amazing nurse!
How hard was it physically?
After a few days in bed, it was time to get my body up and
moving around again…I had no idea what sort of struggle
lay ahead! I experienced severe abdominal cramps, as I
tried to push myself up in bed. I had apparently also
Nick says his family and friends have been a huge part of his recovery.
cracked T-11, but the doctors weren’t concerned about
that…I still don’t know what caused the very
uncomfortable cramps.
Just managing to straighten up in bed was an ordeal but
it was the first attempt at standing that was weird.
I didn’t feel connected to my feet at all! With lots of
encouragement, I took my first tentative steps, with the
physios checking my every move! I managed to walk over
to the wheelchair at the end of the bed, and carefully
lowered myself into it. It was a moment of triumph – I had
quite a few witnesses!
Now, I could be wheelchaired down the corridor to have
my first look around the place. I distinctly remember my
first sip of coffee after four days of pill-taking and liquids,
was mind blowing! The intensity of the flavour was like an
explosion in my brain. Then the sweetness of a piece of
caramel slice, which my friend Paul had given me, was
similarly off the Richter scale in taste terms! My first
mouthful of ice cream was also a powerful memory. We
should try to cleanse our palates more often in normal life.
I enjoyed the physical rehab and had lots of fantastic
physios to assist me. It was, however depressing to see how
weak the muscles were in my right hand with some of the
exercises I had to do. I was getting a picture of the impact

SPINAL NETWORK NEWS 9
Nick Cornish says playing music again was an emotional experience.
on my fingers, which I absolutely relied on in my capacity
as a professional woodwind player. I was devastated to see
how useless they seemed to be in the extensor muscle
building/testing exercises. I was only in a wheelchair for
a few days before they told me I had to start walking
around unaided.
In physio class, I was made to lift weights, walk in straight
lines and balance on wobbly things. The support from the
physio staff was so positive and encouraging, that it was
always a question of pushing the effort and achievement
to the next level, on every occasion. My physical condition
improved incrementally, but I still had a long way to go.
I remember my first go on the bike trainer and managing
to ride for 10km. I was impressed with that! And it was fun
to sit on a bike again.
When did you start trying to play music again?
After a few weeks at Burwood, I was interested in knowing
whether I had any chance of playing the oboe again.
Megan made a return trip to Dunedin and picked up a few
instruments. I had already played a few sessions on the
Burwood chapel piano, and realised then that my ability
was shattered into pieces. What chance did my oboe
playing have?
The next few days confirmed my worst fears – essentially,
that my right hand lacked sufficient strength to even hold
the oboe up, and the fingers were impossible to control.
My oboe playing days were over. This realisation was the
hardest moment I had experienced since the accident…I
had spent my life developing skills on a very specific
instrument which I would never be able to play again.
This was absolutely crushing.
I play other wind instruments, and the saxophone has
always been another very good friend. Unbelievably, I
discovered that my fingers managed to move around the
sax keys all right, mostly because there were not as many
problems with gravity.
I was thrilled when Hans
Wouters [NZ Spinal Trust
CEO] invited me to play
a duet with him at the
BSU Christmas Function
that year....it was to be
Greensleeves, and could I do
a short sax solo in the middle
section? I jumped at the
opportunity.
I was thrilled when Hans Wouters [NZ Spinal Trust CEO]
invited me to play a duet with him at the BSU Christmas
Function that year….it was to be Greensleeves, and could I
do a short sax solo in the middle section? I jumped at the
opportunity. Hans is a very talented chap, singing and
playing guitar with skill and conviction, and the duet was
well received. It was certainly a big moment for me in the
recovery process, inspiring confidence.
Rehabilitation is an emotional journey – were there
any staff at BSU who stood out for you?
I loved the professional team at Burwood, but a few people
stood out for me - one was Lincoln – he always encouraged
me to have aspirations. I asked him about my chances of
playing oboe again, and he reckoned I had a slim chance of

NEW ZEALAND SPINAL TRUST 10
getting back to professional-level playing. I am very happy
to say that I am playing again, and have been for the last
two years, with the Dunedin Symphony Orchestra and
with other professional music groups. It certainly has been
a tremendous struggle, but I tried not to give up hope of
ever playing again.
How did you refocus your musical ability and talent?
After two years of struggling to play oboe again, I set my
heart on playing bassoon to a pro-level. I practised hard
for hours, learning finger patterns and playing long notes.
I made great progress and auditioned for the Dunedin
Symphony Orchestra.
Clearly, I still had work to do, as they politely gave me a list
of things to work on! I took a trip to Sydney where my son,
Todd, helped me to find a bassoon to purchase. He played
principal bassoon for the Sydney Symphony Orchestra.
After the trip and choosing a bassoon, I returned to
Dunedin and had one final go at playing oboe. I scraped
reeds over a week-end (professional oboe players always
make their own reeds) and gave the oboe one more go. I
hadn’t tried it for months, as it was always such a difficult
experience. Unbelievably, my efforts paid off, and a
revelation occurred.
How important has playing music been for you during
your recovery, and what do you love about playing the
oboe?
Playing the oboe for me is a way of perceiving beauty in
the natural world, and representing it in the best way I
can, using the sound of the oboe. It is a way of expressing a
huge range of emotion from sadness through to complete
elation, and every nuance in between. The mystery of
music is in the unspoken word, in the inexpressible
emotion which is only communicated through musical
sound. In playing music, you can reach a connection with
the essence of feeling emotion and sharing that with
others. Playing music in a group is always a powerful way
to work, as you can connect with the emotion of master
composers from many years ago.
It must be incredibly rewarding to play music, after all
you have been through?
It is almost a miracle for me now to be playing classical
music with others, at a professional level. It is an
incredibly rewarding and joyful experience. I have such a
lot to be thankful for, as I am still employed to teach music
in schools, as an itinerant woodwind teacher in Dunedin.
Also, I have great family support, which was a key part of
my recovery too.

SPINAL NETWORK NEWS 11
NZ Spinal Cord
Impairment Action Plan
How well did it work?
- Rachelle Martin, Matt Aldridge and Jo Nunnerley
During 2019, the Burwood Academy of Independent
Living (BAIL) team conducted research to evaluate how
effectively the New Zealand Spinal Cord Impairment
Action Plan (NZSCIAP) had been implemented.
What was the NZSCIAP?
The NZSCIAP was developed by the Accident
Compensation Corporation (ACC) and the Ministry of
Health (MOH) in collaboration with a wide range of
stakeholders across the health system - including
consumer groups, professional bodies, expert clinicians,
district health boards (DHBs) and researchers. The Action
Plan was implemented between 2014 - 2019 and led by a
national governance group made up of service managers,
senior clinical leads and community representatives
across spinal cord injury (SCI) services
The NZSCIAP had eight objectives, focusing on different
aspects of service delivery. It was hoped the NZSCIAP
would improve health and wellbeing outcomes for those
with SCI (and their families/whānau), including
independence and community participation.
How did we evaluate NZSCIAP effectiveness?
Three main types of data were collected:
• 151 online surveys - completed by adults with SCI, their
families/whānau, carers, and health-care professionals
• 17 interviews - conducted with both adults with SCI and
children/adolescents with SCI (and their nominated
family/whānau member).
• Organisational process and outcome data requested
from funders, service providers, and the NZ Spinal Cord
Injury Registry (NZSCIR)
What did we find?
“There have been improvements with the service changes
implemented through the NZSCIAP. However, there was
still significant room for improvement in all areas of
delivery - from in-patient to community follow-up, to GP
management and community care, education, and
accessibility [for] people of varying socio-economic
status, cultures, location, and funding streams.”
[HCP working in specialist unit]
What worked well?
The NZSCIAP provided a positive platform for collective
action by funders, service providers and organisations.
Having agreed goals about what needed to happen across
the range of services within New Zealand was helpful, as
There is no transparency
around the decision-making
process (NZSCIAP Evaluation
PLEx Advisor).
was the opportunity for the governance group to meet
regularly to plan and work collaboratively on the next
steps. The NZSCIAP document was a good way to keep
everyone heading in the same direction, and also
helped secure funding for research and service
development improvement projects.
Some of the projects developed and implemented as
a result of the NZSCIAP:
• A destination policy was introduced across New
Zealand, so people who have a traumatic SCI are
transported straight to one of the two specialist
spinal services, unless life-saving intervention is
needed at a closer hospital. This means people can
get surgery earlier, and early treatment by people
with specialist SCI knowledge. Before the destination
policy was implemented, only 30% of people were
admitted directly to these specialist spinal centres.
This has now increased to 70%. The average time
from admission to the specialist spinal centres to
surgery has also reduced from 15 to 8 hours. Work is
still needed to make sure that people with
non-traumatic injuries or other health issues gain
timely access to the units.
• A specialist SCI service for children and
adolescents with SCI was set up at Starship
hospital, with rehabilitation at the Wilson Centre.
Most (83%) of the healthcare professionals surveyed
agreed that the implementation of the specialist
service has helped children/adolescents with SCI to
achieve optimal health and wellbeing. Interviews
with children/adolescents also suggest a high level of
satisfaction with services provided by Starship
Hospital and the Wilson Centre. It is unclear if all
children/adolescents with SCI are being offered
access to the service, particularly those with
non-traumatic or incomplete injuries. Next steps
need to focus on how best to support children/

NEW ZEALAND SPINAL TRUST 12
adolescents and their families/whānau, once they are
discharged. Parents describe a lack of information and
control over processes after they go home. They do not
know what to advocate for, what services are available,
and how to access them. Children are continually
growing, and their needs changing, but the system does
not seem to be able to keep up with this change.
• The NZ Spinal Cord Injury Registry (NZSCIR) now
routinely collects data that can be used for research
purposes to help understand the number of people
experiencing SCI, and to provide information to
improve services. Between August 2016 and December
2018, information on 480 people with a new SCI has
been collected. Of those, 326 people consented to have a
‘full-set’ of data collected. This data is already
providing valuable information about the number and
type of injuries in New Zealand, as well as how well
services are doing at providing care. Registry staff are
currently working to ensure that follow-up information
will be collected from people living in the community,
who consented. This community follow-up data will
provide information about everything from secondary
complications, pain management, people’s ability to do
the things they want to do, and return to work rates. All
very useful for making sure people’s health and
wellbeing needs are being met in the future!
• An attendant care in hospitals project has been
piloted. This project looked at how feasible it would be
to allow people with SCI to use their existing carers for
specific duties, if they are admitted to a non-specialist
SCI service hospital. An evaluation of this pilot is
currently being finalised. Overall people seem to think
it is a great option.
What could be improved?
As expected, there is still more work to do! We wanted to
summarise what we have learnt from the people who told
us of their experiences, so as to provide some practical
suggestions to people funding and providing SCI services:
• Equity of access to services. Overall, inequity of
access to SCI services was a key issue identified across
all objectives and by all stakeholders. Strong
self-advocacy following discharge from SCI services
appears to be important, creating inequity of outcome
for those who, for a multitude of reasons, are unable to
advocate for themselves. We recommended establishing
mechanisms to improve access to and navigation
through services for those most at risk of poor health
outcomes. We also recommended that resources and/or
tools be developed which facilitate communication and
increase transparency of decisions. We felt that these
would empower the person with SCI (and their family/
whānau) to more effectively advocate for themselves.
• Working together to find solutions. We found that
improvements, which contribute to meaningful
changes in health outcomes, were more likely to be
made, if providers and consumers worked together to
find solutions to complex problems. We thought that
more effort needs to be made to include a diverse range
of people in service design projects. These should
The NZSCIAP focused on different aspects of service delivery.
consist of Māori, health professionals and carers
working in both acute and community settings, and
people with SCI representing a range of different levels
of injuries, funding models, and other personal
characteristics.
• Innovative ways to provide services. We also
recommended that innovative outreach service delivery
options be explored. We particularly wanted to make
sure that everyone with SCI (including children/
adolescents) receive timely and responsive reviews of
their health and rehabilitation needs, once they are
discharged from specialist spinal services, and then
over the coming years. Current systems and processes
are not working as well as they could be – either for the
people with SCI or for the service providers.
After reading many survey comments and listening to
lots of interviews, we also have a few specific suggestions
about what service ‘sticking points’ should be prioritised
over the next few years:
• Pain management. Many people with SCI (and their
families/whānau) talked about the need for improved
pain services (i.e. including within supra-regional
units). Pain management plans and support also need
to be provided in a timely manner.
• Housing modification processes. Improved processes
(and transparency of processes) for housing
modifications are needed to (a) reduce the need for
temporary accommodation and (b) to increase the
speed of work completion. At the moment, issues with
housing modifications are contributing to secondary
complications, and restricting people with SCI taking
part in community activities.
• Transitioning from child to adult services.
Currently, the processes for transitioning to adult
services for children with SCI are inconsistent, and
these young adults are not receiving the level and type
of support they need to live well with SCI.
• Peer support. Ongoing work and funding are needed to
make sure that everyone (including families/whānau
and children with SCI) receive peer support as and
when they need it. Those who received peer support
found it very helpful. However, 26% of adults with SCI
and 43% of family members, who took part in the
research, were unaware of the service. Much work by
Spinal Support New Zealand and the New Zealand
Spinal Trust has been done to ensure that the peer

SPINAL NETWORK NEWS 13
support services are consistent across New Zealand,
with both charitable organizations employing peer
supporters to work within the units.
• Managing carers. Paid carers in the study generally
felt they have an appropriate level of knowledge and
experience, and think they have been adequately
trained for their role. The majority of adults with SCI
agreed that their carers have an appropriate level of
knowledge and are reliable. However, only 35% of adults
with SCI agreed they had received adequate training
and support on how to manage their carers. Therefore,
we recommended that people with SCI are provided
training on how to manage carers, not just how to direct
care. Family members reported that they were not
confident that their family member would be well cared
for, if they were sick or wished to take a holiday –
regardless of whether or not a care agency primarily
provides their support or not.
There were some objectives about which people with SCI
(adults and children) and their family/whānau had a lot of
say - what worked well, what didn’t work so well, and what
could be improved.
Objective 4 – Provide nationally-consistent SCI
rehabilitation services and extend community-based
rehabilitation
This was one of the broadest objectives. It was also the
one which received the most extensive range of responses
- from people having fantastic experiences to the
complete opposite. The inequity between MOH- and
ACC-funded clients was highlighted throughout the
feedback on this objective. Currently, there seems to be
little evidence of specific actions occurring to reduce the
impact of these funding differences.
A key issue identified was the absence of support in
navigating the system - people simply did not know what
they were entitled to or what was available. After
discharge from the spinal units, people described
fragmentation of services, which was amplified for those
with MOH funding. If people did not live close to one of
the spinal units (i.e. close to Christchurch or Auckland), it
was harder to access support and services. People with
SCI described many instances where they knew what
equipment/service they needed and what would work for
them but, often, the health care professional would not
provide this. People also identified pain management and
psychological services were not meeting their needs.
Some community health providers also described
difficulty getting information and advice from the
spinal units.
“In my experience, the issue centres on how well anyone
with an SCI or their support can advocate for themselves.
There is no transparency around the decision-making
process.” (NZSCIAP Evaluation PLEx advisor)
“Although some spinal unit therapists are good at
communicating with community therapists, many aren’t,
and it is really unhelpful for clients when they receive two
different lots of advice, i.e. at follow-up clinics. The unit
therapists are clinical experts in SCI, but those of us in
community have specialised skills too, and we need to work
together and respect each other’s viewpoints. I would love
the opportunity every couple of years to network with the
teams (e.g. Skype) and for each of us to ask questions and
make sure we’re on the same page with all our advice.”
[Community health care professional]
Objective 5 – Review and align MOH and ACC processes
for access to equipment, housing modifications
and transport
All the people that we surveyed or spoke with referred to
the inequity of access to equipment, housing and vehicle
modifications between those receiving ACC funding and
those receiving MOH funding, especially once they were
living in the community.
Most people thought they received appropriate
equipment in a timely way. However, housing and
housing modifications were identified as an issue, with
one-third of survey participants stating that they were in
temporary accommodation for too long. People described
a lengthy and frustrating housing modification processes.
Several people talked about injuries (including burns,
pressure areas and musculo-skeletal injuries) resulting
from a house not meeting their needs, while awaiting
permanent modification.
“After two years three months, housing modifications are
not done yet, vehicle modification done but still waiting
several bits of equipment to be assessed to return to social
things… So, in the meantime, my partner is waiting and
becoming more reclusive, more isolated, extremely
frustrated and dangerously depressed each week that goes
by! There is nothing I can do to make it better, so I’m now
stuck too.” [Family member]
It appears more effort needs to be made to include family
in decisions around equipment, housing and vehicles to
ensure that the needs of the entire whānau are considered
in the decision-making process.
This research was commissioned and funded by the
Accident Compensation Corporation (ACC). The content
and conclusions presented here do not necessarily represent
the official position of ACC or represent ACC policy
The average time from admission to the specialist spinal centres to surgery
has also reduced from 15 to 8 hours.
The full NZSCIAP report is now available https://www.acc.
co.nz/assets/research/sci-action-plan-2014-2019-
evaluation-report.pdf

NEW ZEALAND SPINAL TRUST 14
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SPINAL NETWORK NEWS 15
Telling It Like It Is
Teina Boyd’s Column
I cried last night.
Twice.
Once from overwhelming gratitude. Love.
The other from regret. This couldn’t be the end...
Rewind.
Volleyball nationals and its semi-final night. Two of my
best mates are out there playing hard, and I’m SO excited.
Great volley everywhere and I’m surrounded by beautiful
friends.
Literally surrounded.
Flopped over in my wheelchair beside a packed-out
bleacher, I was having a pressure relief.
Toots chatting away in one ear, keeping me updated on
the scores while my eyes were down in action. Leigh
snuggled up on my right armrest. Damo leaning on the
back of my chair - being patient with my little man as he
asks a million questions, Nick standing nearby... where
he’s been for the last two days.
I feel loved.
I can’t tell you how much this all means to me. My friends
treating my chair so mundanely. It’s not a huge white
elephant in the room, or something to avert your eyes
from. It’s just...my chair.
Leigh puts her hand on my back, and Toots asks if I’m
ready to come up. Their love and acceptance of my
disability - it floors me.
Heke ana nga roimata. The tears fall.
How happy can one person be? Is there a limit? If there is
- I’m stretching it.
Toots lifts me back up in my chair as I try to keep my face
down and hide the tears. She sees anyway. Damn it. I
explain. I’m just happy. And grateful. And I love them.
Cue hugs from the girls and one of the guys telling me to
“Shush Man”. It’s enough to make me laugh and get back
into the games.
Fast forward.
Both courts are on the fifth set.
Something’s wrong.
I thought I was just getting excited - short quick breaths.
Sadly, that wasn’t the case. I could feel my heart speeding
up, my lungs getting harder to use (weak things that they
are), my body starting to sweat and a headache creeping
in.
Shit. Autonomic Dysreflexia. My body is trying to warn
Teina Boyd is a regular columnist with the NZST helping others with an SCI.
me something’s seriously wrong.
I need to lower my blood pressure. Quick.
“Sharon, we need to leave, now please”.
This last week my volleyball family have done such an
amazing job at welcoming me back, I don’t want to pay
them back by having a heart attack in the middle of the
semi-finals.
Sharon and I get in the van and boost. The hospital is so
far away. Damn it.
“GO Sharon, get me home now, I’ll pay the tickets.”
(Silver lining: Sharon, my carer, is great at ignoring speed
limits)
Home has everything I need to fix this, and quick.
The headache becomes all consuming. There are
moments where I lose my vision, others when I just see
red. The pain is only just bearable. I have to stay ‘with it’, I
have to instruct my carers to tell them how to fix me.
Police lights. Shit. I’m declining fast.
“Sharon, pull over. Get out. Come to me”.
She does.
“Take my binder off please, we need to lower my blood
pressure. I’ll talk to him”.
She’s panicking, fumbling with my top. Shit, last thing I
need.
“Deep breaths Sharon, you’re doing awesome”. I try to
smile for her.
He’s there. Yellow neon police vest hurts my eyes. I don’t
let him talk.
“Sir. I need you to listen. I don’t have long. I am suffering

NEW ZEALAND SPINAL TRUST 16
autonomic dysreflexia and I am on my way to having a
heart attack. I need to get home to my emergency
medication. Now”.
He looks stunned. I go blind.
(Silver lining: He listened. He took us home)
Blurs, flashing lights, panicked voices. I’m lost in the dark
and can’t get enough of a mental foothold to come back.
Shit is this it?
It can’t be. I didn’t even kiss and hug Willie goodbye. Or
Brad. Or Anna. Or Nick, Toots or Leigh.
No way. This is NOT it.
I get enough of a foothold to focus on my breathing.
Deeper, slower. After a minute, I can talk again.
“Sharon. Pain killers. On fridge. GTN spray. On bedside
table. Get them. Quick”.
She runs. She’s crying. Leuila Is running up the
driveway… I’m so glad it’s changeover of shift time. Four
hands are better than two.
I’m gone again. No warning.
Then I’m back, confused. Trying to make sense of
everything through the headache.
“Get me on the bed, quick. Check my bladder and bowel.
Emergency catheter change. Now”.
Shit even I sound a bit panicked now. I can hear it
reflected in their voices. In the sound of them dropping
medical supplies and their hurried breaths.
“Guys. You’re doing great. Deep breaths K. We got this”.
They’re crying. But I feel their energy change. Refocus.
This time I do make a smile for them.
“Leuila. Emergency catheter change. Sharon. Call an
ambulance”.
I’m gone.
I’m back. This headache, I hate it. Why can’t I see? I’m
sweating. I hear Sharon panicking on the phone.
“Give me the phone Shaz, it’s ok”.
She holds the phone to my ear.
I’m blind. Talking hurts. But I can do it. I can’t hear the
operator. My heart is beating fast, and loud. I think it’s
ripped itself out of my chest and someone’s shoved it back
into my head. How is my heartbeat so loud?
“Ambulance please”.
I talk to the man on the other end of the line. He doesn’t
understand the urgency. I’m calm, I explain. Slowly.
Words are hard. My lungs. They want to rest.
My head is ready to explode. I see white....and the pain
stops for a second. The pain, its rallying its forces for the
next attack. I relax....I start planning for the worst.
“Sharon. I don’t have a will. It all goes to Brad for Willie
K?”.
“Yes T”.
I’m gone again... I slip
away quietly this time. One
loud, painful heartbeat
overwhelms me. A dam
bursts in my head...and I’m
carried away on the flood
as the light fades.
They’re crying again. I quietly join in. I know Brad will be
fair and give my family anything they need.
I’m gone again... I slip away quietly this time. One loud,
painful heartbeat overwhelms me. A dam bursts in my
head...and I’m carried away on the flood as the light fades.
I’m yanked back roughly. I’m in the ambulance. Beeping
machines. A kind face. Her lips are moving but I can’t
hear her. I smile. The headache is so much quieter. I can
breathe again. I fill my lungs.
YES!
I see the blood pressure monitor.
220/177. Shit.
(Silver lining: I’m still here)
I blink heavily...I’m gone again. I don’t think I’m coming
back this time guys. Sorry.
So many regrets. But they float away with me. We
disappear. I remember the sound of rushing water, and
everything fading to black… Including me.
It’s silent, and dark… I feel like I’m waiting, but I don’t
know what for.
Stubble on my cheek. I feel it.
I feel it?
I open my heavy eyelids.
Brad. Hugging me gently. Sammy behind him, smiling
with teary eyes. I’m in the hospital.
Wait...I’m waking up?
I feel.... I can actually focus my eyes.
My mind too. Headache’s smaller. It’s more like the
neighbour’s bass playing on a Friday night now, instead of
The Prodigy playing at the base of my skull.
Whoa that feels good. I feel lighter. Pain easing. Blood
pressure settling. Inhale...lungs filling.
YES!
Eyes close…exhale and smile.
I’m not going anywhere tonight.

SPINAL NETWORK NEWS 17
NZ Spinal Trust & Melrose Wheelchairs
Motor Racing Experience
AT HigHlANdS MoToRSpoRT pARk
Calling all adrenalin junkies! Here’s your chance to
experience the thrill of driving a Mustang at the
Highlands Motorsport Park in beautiful Cromwell.
On Saturday 10th October there will be an opportunity to
race a Mustang on the international racing track at Highlands
Motorsport Park. The Highlands Mustang has “Push-Pull”
hand controls, a racing seat with harness and a HANS neck
brace and helmet. Your time on the track will be spent with an
experienced racing car driver, who will take you around part of
the circuit and show you the ropes.
The team at Melrose Wheelchairs and Highlands Motorsport
Park are keen for everyone to experience this opportunity.
Contact Brett Ladbrook at the New Zealand Spinal Trust for
bookings and more information, please note there are limited
spaces available so get in quick. Phone: 03 387 1305 or email:
brett.ladbrook@nzspinaltrust.org.nz
Just like the racing Mustang, our Scorpion has gone on
a diet to remove weight resulting in a frame and
upholstery package that weighs less than 4.00 kg.
Contact Melrose Wheelchairs to trial the new Scorpion.

NEW ZEALAND SPINAL TRUST 18
A Wise Head on
Young Shoulders
The Positive Outlook of Teenager Jayden Glentworth
Jayden and his two sisters Jazz and Zoe have only grown
closer since his accident.
Jayden Glentworth returned to the spot where his life had
changed for ever. Six months ago, the 15-year-old from
Palmerston North was involved in a mountain-biking
accident on the Arapuke Forest Park trails, which saw him
sustain a T-12 burst fracture in his spine.
On this cool winter afternoon, Jayden paused for a
moment in his wheelchair to look at the River Gap jump to
reflect. It was just a moment. That was enough. It was
time to get on with his new life.
“It was a good feeling to be back,” said Jayden from his
family home. “It was a bit hard looking at the jump where
I had my crash but, then again, there is no point me
dwelling on the negative. I’d rather get back out there
instead of sitting on my ass at home thinking about it.
I’d rather just get on with life.”
Jayden loved to mountain bike like a duck loves water. His
long-term goal is to get back on his bike but, right now, he
has shifted his focus to another passion. He is up on the
trails taking photos and videos of his mates riding. There
is nowhere else he’d rather be.
“I’d obviously love to be on my bike and experiencing it
myself, but it’s still so awesome to be up there and with
the boys, and soaking it in. To be making a video in that
environment was cool. I love it up there.”
Talking to Jayden, it is clear he is a resilient young man.
He has been on a tough journey, where his resolve has
been tested every step of the way, but he is not giving up.
He is looking forward.
“One of my main drivers for my photography is hanging
out with my mates,” he said. “That is the main thing for
me. Video and photography are things I was interested in
before my accident, and could do quite competently so I
am looking forward to building on what I can do, and
doing some cool stuff. It was just nice to hang out with my
mates again.”
It was probably easier being back, as Jayden can’t really
remember what happened on that fateful day.
He was out mountain biking with two good mates from
Wellington in the Palmerston North MTB Park. They were
enjoying the trails, when they came across a big jump – a
5m clearing – which Jayden completed most weeks
without drama.
“I remember rolling into the jump and I remember curling
up on the ground in a ball,” he said. “I came to when I was
curled up in a ball, and it all just felt a bit wrong, so I lay
back on the ground and had a breather.
“I realised then my legs were feeling a bit tingly. I tried to
move them, and I couldn’t. My mates said ‘Are you all

SPINAL NETWORK NEWS 19
right?’… you had a really bad landing’. And I remember
saying ‘Boys, I can’t feel my legs’.”
His mates called an ambulance and he was flown by
helicopter to Christchurch Hospital for emergency
surgery on his spine. Jayden’s most vivid memory was an
overwhelming feeling of fear.
“I had a panic moment and then I tried to chill out with
the boys, and had a bit of a prayer time with them. I was
really scared.”
Jayden spent six days in Christchurch Hospital recovering
from his surgery and then three months in the Burwood
Spinal Unit (BSU), where his rehabilitation began.
He said he owes the team at BSU a huge amount for how
much they helped him.
“The first few weeks were really hard. It was a challenge
just getting up and out of bed, and my body was really
sore, but the help of the team there was huge. It was a
great experience.
“My OT [Occupational Therapist] and physio told me that
they had seen plenty of cases like mine and they just
wanted me to get me moving and rehabilitated as best
they could. They were so encouraging in my
development.”
The hardest part of the mental challenge was the
adjustment of returning home to Palmy.
“I did throw myself into a lot of the physical challenges,”
he said. “Getting out of bed and getting that confidence
up to be able to roll up and down the hallway to the gym.
Once I had that confidence, it was a really good
experience, it was a mental shift for me.”
His parents, Mark and Kathy, were omnipresent
throughout every moment of his stay at the BSU.
“It was pretty awesome having my parents there every
day of the journey. They have just kept me positive and, to
know they were there to chat about stuff, has been huge.
“If I was ever hungry, they would whip down to Burger
King and get me a burger and a sundae. They are awesome
supporters of me and there is no doubt that I couldn’t
have done it without them.”
When he was in Burwood, Jayden had plenty of time to
think. He wrote down the goal of walking out of the
hospital but, unfortunately, that became “a bit
unreachable”.
“It was good for me to think that way anyway for added
motivation. Another goal was to be nice and competent
getting around in my wheelchair. I wrote down the goal to
leave Burwood in a positive mental state and a good
physical state, and I felt like I achieved that.”
Aside from picking up his passion for photography again,
Jayden has also kept his love for music alive. Before his
accident, he played drums in a band at his church for nine
years. He has since turned his attention to learning the
bass guitar.
“With my accident, it makes it a real challenge to keep on
playing the drums,” he said.
Jayden said his accident was a really scary day – but the team at Burwood
were a “massive help in my rehab and keeping me positive”.
“So I thought ‘why don’t I start up a new instrument?’.
We needed a bassist in our band, and it isn’t too different
from the drums, in terms of the chords, and the beats and
stuff. It is going really well. It is a nice distraction from
life. Eventually, I will be coming back into the band that I
was in, so I am looking forward to that.”
Jayden said his faith has also been a key pillar in his
mental strength and getting through the hardest period
of his life.
“My faith has helped me heaps,” he said. “Having my
church friends around and just having people I can sit
down and pray with. We are still working through how
hard it has been for me but, having my faith it is
important. I know that God is looking out for me.”
Jayden has some simple advice for anyone who sustains a
spinal cord impairment and is at the start of their journey.
“There is always a light at the end of the tunnel,” he said.
“Especially at the start, it may feel like the world has
fallen in on you. But whatever situation you are in, there
are always going to be better days ahead. There will be
hard times throughout your journey, but you will get
through it, and the better days make it all worthwhile.”
The afternoon up on the Arapuke Forest Park trails was
one of the “better days” he is talking about. It is good to be
back. It is different but then, again, Jayden had prepared
for that.
Jayden has an old head on young shoulders. He has
experienced plenty in the past six months and he is not
looking back. He is over the toughest part of his journey
and he is ready for the next chapter, the next challenge.

NEW ZEALAND SPINAL TRUST 20
All In The Family
The Glentworth Family on Holding it Together in a Time of Crisis
ALL SMILES – Jayden’s friends and family are
happy to have him home in Palmerston North
“You can’t do it on your own” – the Glentworth family’s
advice for parents dealing with the shock of an SCI.
You get the feeling the Glentworth family could get
through anything together. The down-to-earth family of
five (Mark, Kathy, Jayden, Jazz and Zoe) from Palmerston
North are a tight unit. They received the news all parents
dread, when their 15-year-old son, Jayden, had suffered a
suspected broken neck in a mountain bike accident. It
was a moment of total shock, when time stood still.
The past six months has been a roller-coaster journey
with many ups and downs. Hope and despair. Laughter
and tears. Prayer and despondency. The one constant
through it all – they have stuck together.
We recently met with Jayden’s parents, Mark and Kathy,
to talk about the role parents play in helping a teenager
through spinal cord impairment. The impact of the
life-changing injury is still very raw, and hard to talk
about, but they wanted to share their story to help others.
Jayden was 15 when he had his accident what are your
memories from that day?
Mark: He was training for an event and he had been
dropped off at the mountain bike park during the day.
There would usually be a number of phone calls from him
about injuries or mechanicals. I was working when I
received a phone call from Jayden’s phone, and it was the
paramedic. He said there had been a crash; they had been
called up there and the helicopter was en route.
I have been in the NZ Police for 28 years, so I am used to
being involved in traumatic situations, and I knew it was
significant for him to be flown directly to Christchurch.
Fortunately, I was working in Palmerston North so I could
be with Jayden. We were flown directly to Christchurch
and straight into emergency surgery. It was full capacity
at Christchurch hospital, due to the White Island event.
His injury was a T-12 burst fracture, and he had surgery
within eight hours of the accident, which was pretty
remarkable really.
As his parents, what did you think when you received
that call?
Mark: Immediately, I thought how is the next day or next
week going to look? How will the next 10 years look? It was
that big unknown about Jayden’s future, and the impact
on him straight away. But, I realised I had to remain calm,
focused and make good, sound decisions for Jayden
immediately, and also for Kathy and the other family
members.
Kathy: I suppose there was a bit of denial for me, as I am
quite an optimist so, right from the start, I was thinking
that he would be fine. Even though he had been flown to
Christchurch. I suppose we are six months down the track
now, it has been really hard, but I’m still hopeful that
Jayden will recover some more. I suppose everyone deals
with it in different ways, but I am very much a full of hope
person, but it’s been a hard ride that’s for sure.
How was the rehab process for both Jayden and
yourselves, with the slow progress and keeping
up hope?

SPINAL NETWORK NEWS 21
Kathy: We had amazing support from friends. Lots of
people flew down from Palmerston North to be with
Jayden and to be with us. That was huge and the Spinal
Trust was amazing. I actually ran my design business
from their office. Mike Brown had just left, so I was able to
work at his desk, which was amazing, as Jayden’s quite
independent and he didn’t want Mark and I breathing
down his neck all the time. He wanted a bit of space. So,
when Mark was there, he was able to continue working for
the NZ Police in Christchurch, and I was able to run my
design business from the NZ Spinal Trust office, so that
gave us a bit of breathing space and allowed Jayden to
have some space as well.
I think realising that, no
matter how capable you
think you are as parents,
you cannot navigate this
by yourself.
Teenagers need space to process what had happened,
so it would have been quite important for you to reach
the right balance?
Mark: Well, your first instinct, as a parent, is that you
want to be there 24/7, but Jayden needed to gain his
confidence with the injury and to find his own approach
and attitude. He had to do that himself and I think it will
be a very long journey and one I think he’s still doing
that now.
But, having the Trust there to help navigate those first few
weeks or even the first few months was just incredible,
because it’s extremely overwhelming. When you first go
to the unit, it’s the place that is going to make or break
Jayden’s mobility future. But when you’re there, it’s
overwhelming, because there’s such a big rehab team and,
when you’ve got someone like members of the NZ Spinal
Trust just to help explain how everything works and
support you through it, and be here when you need
questions answered. It was a game-changer and made a
great difference to us.
It was incredible, actually, and I think realising that, no
matter how capable you think you are as parents, you
cannot navigate this by yourself, you actually, need to
allow yourself to get advice, help and support from
whoever is the right group/people to help you, it’s such an
unknown, and nothing prepares you for the practical
issues that arise, especially navigating the emotional
stress, as parents.
How did you deal with the stress during the process?
Kathy: I think our faith played a big part in that. As
Christians we leaned into our faith a lot, and we’ve have
friends in Christchurch, too, who were very supportive in
that regard. So, a lot of prayers and a lot of people praying
for us and Jayden played a big part in how we coped.
Mark: We would have been backward if we hadn’t leaned
into on our faith like we had, I don’t know where we would
be; I don’t know how we would be now. It’s been a
game-changer.
Every time I went into Jayden’s room over those three
months, I just thought whatever you say has got to be
encouraging and positive for him. And that was quite
difficult and tiring, but I think that it was really
important just to let him know he wasn’t on his own, just
as we weren’t on our own.
The day Jayden and his family will never forget.
And Burwood is such a special place. People have said ‘it’s
harder to leave there than to arrive’ and I believe that
now. You have this incredibly caring team around you
where their whole mission is to support and, since we’ve
returned to Palmerston North, that team of support has
changed, but the mission is the same. They are still
wrapping around us with practical help and care, and a
huge amount of support and it’s been great.
Kathy: It also made us think about all the other parents
and families who are going through hard times. It really
builds an amazing empathy to think about people around
us, because we might not even know what they are going
through. As a family, this has been our first big ordeal to
cope with, so it has made us think about those around us
who are going through similar or worse. It’s not just us
going through this; other people do too.
Has Jayden’s crash given you some perspective on
other parts of your life?
Kathy: It has made us focus on the positives because,
there are so many negatives, that you know you can get a
bit swallowed up by it, so you we have to make a daily
mental note to self to be grateful and thankful for what is
good, and to be hopeful because that, I think, keeps you
on the up.
Mark: We know we have got so much to be thankful for.
Although there is still uncertainty about Jayden’s
mobility future, we know we are fortunate to have him as
we do, as it could have been a lot worse and it’s not, and
we are fortunate. Jayden’s well aware of that too.

NEW ZEALAND SPINAL TRUST 22
Back in his happy place: Jayden is back up on the trails
– these days taking photos and creating videos of his mates.
Do you have any standout memories of people who
helped you at Burwood?
Kathy: Tom, the psychologist; what a cool dude, he was
so great. He would really listen and he has a world of
experience and he connected with all of us individually.
Our lovely social worker, Jeanette, she was amazing.
Such incredible professionals. Wayne, who runs the
accommodation, he was great. So amazing. Everyone was
so lovely, and supportive and sensitive. What a place!
Mark: We got to know and we have maintained good
contact with Matt, who broke his neck on Boxing Day,
when he was 42. He’s such a special person to us and
Jayden now. Matt and Jay, they share a lot. Jayden was
able to be with Matt in his journey, and he’s doing really
well physically. He came in with a broken neck and has
had made an amazing recovery. They have got a really
special friendship and we’ve maintained a lot of contact
with them since we left - he made things much easier
for Jayden in a situation where there was uncertainty
and sadness.
Also, Hans really helped us to navigate some really rocky
times. He will forever be a very special part of Jayden’s
journey but for me - Matt, and the other patients, made a
big difference. We were privileged to be part of their
injury journey, even just for a short period of time.
What are some of Jayden’s passions and interests, six
months on?
Mark: It is still early days, but he’s desperate to get out
on his bike again in whatever shape or form it takes. The
support of his friends - his youth group friends, his school
friends, his riding friends - has been incredible. He’s just
so happy to be out and about with them. He had a
sleep-over recently with a mate, one of his best friends
- that’s his first sleepover away from home, and it was
great, it worked really well.
Jayden’s passion is just being more independent around
his friends; that’s his drive at the moment. He just loves
getting out and about, in the mix with the friends he had
pre-accident. He’s starting to do quite a bit of mountain
bike photography now. We are lucky enough to have good
camera gear, so Jayden goes down and takes some shots
of the guys doing their biking but, in the same breath, it’s
quite hard for him to do, because he was the one riding.
However, he still wants to be heavily involved, and
photography is one way he can do that. He used to play
the drums at church, but he can’t do that now, so he’s
learning the bass guitar because he can do that. He’s
finding his confidence in different things.
Seeing his strength and determination, has that
inspired you?
Mark: He is at quite an interesting stage, because he
came back to lockdown. He was so hungry to get back
home, to get back into school, or just establishing his new
normal. Unfortunately, when he came back, we were in
lock down so the timing wasn’t ideal. It’s only been about
three weeks since he’s been back to school. He’s at a boys’
school with 1700 students and he’s the only one in a
wheelchair, he just wants to get back into the school
environment. I’ve found that it is really cool that he’s keen
to do that. I think that’s great. That’s the big thing that
I’ve noticed. He’s happy to be out and about and be seen
in his chair. This hasn’t been a big issue for him, which
is cool.
What are some of the ways you helped Jayden stay
positive and win the mental battle?
Kathy: The team here have been very helpful - my
children, the physio and his Occupational Therapist. I
think Jayden needs more than just us. I mean his sisters
have been amazing; Jazz and Zoe are so encouraging and
we have other close friends of the family, his friends
Connor and Josh It’s very much a team which is
encouraging him in his mental battle. Because, at the age
of 16, young people are breaking away from their parents,
and trying to be more independent and making their own
mind up, so having really good, positive input from other
family members and close friends has been key. And the
youth leader and his youth group friends - just those

SPINAL NETWORK NEWS 23
really good positive messages - that there is a good plan
for his life and it will be all right. His psychologist has
been telling him that and telling us that as well that he
will be okay. Because, sometimes, worry becomes too
much, it’s a huge thing and takes up your head space, so
we just trying to dispel that worry with good positivity.
Mark: Also giving Jayden a certain amount of control
over his decision making about what happens during the
day. Because, from what I can see, what he can actually
have control over has totally changed. There are a huge
amount of restrictions, so we’re just trying to stay positive
around some of that decision making. Jayden has a lot to
learn, about his confidence with the injury so, to give him
control over things which, in the past, as parents, we
might have said “This is what we’re going to do”, we are
giving him more options so he can decide.
What advice would you offer to parents at the start of
their journey with an SCI in the family?
Kathy: Look after yourself. Mark and I have both stuck to
our exercise routines – Mark with his biking, and I have
carried on running and going to boot-camp. Staying
healthy is important. It has also been vital to maintain
our good friendship network. The psychologist made the
point that the house should not just rotate around Jayden.
We have two girls as well, and the advice was to maintain
as much normalcy in our lives as we can. To be honest,
this is hard, but we are taking positive steps to manage
that. Even though we are at home, Jayden has two or
three appointments a day as well as school, so it can get a
bit too much, but we have tried to maintain the routines
from before the accident.
Mark: It’s a hard question to answer. My main advice is to
accept the help that is on offer. You can’t do this on your
own. It’s an injury that is so far-reaching, it affects
everything. It affects everything from your emotions to
practical things like house modifications. You just have to
accept the advice and the help that is available. When
there is so much happening, you can’t physically process
it all. Find people who you think will give sound advice,
and stay in touch with them. The psychologists said to me
early on don’t make any big changes. With my job, I travel
a lot, but the psychologist said if you make changes to
something that you really enjoy and value, then there
is guilt – “You are changing because of the injury.”
Just wait and see how things play out. You are not on
your own.

NEW ZEALAND SPINAL TRUST 24
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The recently opened Attitude BNB near Half Moon Bay in
Auckland is ideal for a weekend getaway.
Glenice Yeoman has a passion for helping
people and creating opportunities. In 2020
she started a resort-style Bed and Breakfast
– Attitude BNB - in Auckland which is fully
accessible and inclusive. It is the ideal place
to get away from it all for a relaxing weekend.
We recently caught up with her on what
makes her place special and what it’s like to
see her dream realised.
What makes Attitude BNB special?
Attitude BnB is a dream I have had to produce a facility
which is totally inclusive. It is for everyone, so people with
access needs are catered for. When my Mum was only 40
years old, she had a stroke, and as I was only 10 years old
at the time, I grew up being aware and sensitive to some of
the issues encountered on her journey. Although she is no
longer with us, I couldn’t alter my house to a BnB, and not
make it something that she would have enjoyed. As it is an
adaptation of my existing house, the maximum width of
wheelchair I can accommodate is 700mm.
It is a facility to enjoy, a Resort Style BnB which has a pool
and spa pool with a hoist to both. The whole site is fully
accessible with ramps, level entry, 900mm doors and all
the bathrooms are full disability bathrooms- but stylish,
guess what, they don’t look like hospital bathrooms!
There is a Function Room if there is a group who want to
hold a meeting, or enjoy some of the classes which the
room can accommodate - maybe you have a skill you
would like to pass on to others – art or music, etc.
What are some of the features of the property that
appeal to the spinal impaired community?
Everyone in our community deserves to be able to enjoy a
tranquil resort, think palm trees, pool, spa pool, alfresco
breakfast by the pool with water cascading down the
waterfall, a glass of New Zealand’s finest Villa Maria wine
and a cheese platter in the afternoon before you go out to
a local restaurant for dinner, home to relax into a massage
bed with memory foam that is at the height to transfer
from your wheelchair. Assistance dogs are very welcome.
The spa was completed at the end of June, and the pool in
time for summer. This is the only spa pool in the whole of
Auckland that is accessible to the public in a wheelchair

SPINAL NETWORK NEWS 25
The Attitude BNB has the only spa pool in Auckland that is accessible to wheelchair users.
(including all the Council Pools). The pools are available
for a swim or use the spa or both. The pool bathroom is
fully equipped like the others, so you can have a shower
and get changed if you like, even if you are not staying
overnight. People are very welcome to come and do
therapy in the privacy of the backyard and bring your
physiotherapist or trainer if you wish. If you need any
specialised equipment, please bring it and let me know
what it is, so I can arrange the room accordingly.
What are some of the highlights of the region, things
that people can see and do when they stay in
Bucklands Beach?
The BnB is in a quiet cul de sac, where there is off street
parking. We are five minutes’ drive from the beginning of
a picturesque peninsular, which includes Bucklands
Beach on one side and Eastern Beach on the other. The
boats moor at Half Moon Bay (HMB) which is also a
terminal for the ferries into the CBD, and across to
Waiheke Island (the ferries are wheelchair accessible).
These are both beautiful trips which take about 45
minutes and give a view of the Hauraki Gulf and some of
the islands. At HMB, there is a supermarket, chemist,
lovely cafes and restaurants looking over the marina.
COMPETITION TO WIN A WEEKEND FOR TWO AT Glenice’s BNB:
Glenice says: “I have a good sense of humour – you have to make me laugh, so tell me in
a paragraph why you deserve a weekend for two at Attitude BnB this summer.”
Enter on the NZ Spinal Trust Facebook page:
https://www.facebook.com/NZSpinalTrust/
To book at Attitude BnB in Bucklands Beach in Auckland visit: https://attitudebnb.co.nz

NEW ZEALAND SPINAL TRUST 26
The Remarkable Life
of Dr Richard Smaill
Dr Richard Smaill says “life is but a journey and you only
have one shot at it”.
Dr. Richard Smaill has lived an extraordinary
life against the odds.
The 61-year-old became a tetraplegic when he was 15 after
he broke his neck in a rugby tackle. That was 46 years ago
- back in 1974 New Zealand was a very different place for
Kiwis, living with a disability. Medical professionals were
only just gaining the knowledge on how to keep high level
tetraplegics alive. Still, Richard did not complain. He
never looked at what he couldn’t achieve, he always
focused on what was possible and set about living his life.
He went back to school to gain University Entrance, went
on to study Psychology at University of Otago becoming a
registered Psychologist in 1984. He completed his PhD at
the University of Canterbury.
Richard worked for many years in the health services in a
variety of positions in research, planning and senior
management. During this time, he completed a Diploma
in Health Service Management and was also awarded a
Winston Churchill Memorial Fellowship to study health
information systems in Great Britain. He left the health
services in 1993 to become self-employed establishing a
business in career counselling as well as a variety of
consultancy work. Further health issues set him back but
he was fortunate to be granted a Health Research Council
Disability Research Placement Award. His doctoral thesis
‘Ageing with SCI in New Zealand’ was completed in 2014
and was recognised by the Division of Health Sciences as
being of exceptional quality. He is proud to be happily
married with two adult children. We caught up with
Richard to talk about his experiences, his study and his
advice for those at the start of their journey with a spinal
cord impairment (SCI).
Tell me what it was like when you were 15 and your
memories of breaking your neck?
I was playing on the wing for the First XV in John
McGlashen College in Dunedin. I grew very quickly as a
young fella. I was tall and lanky. Fortunately, or

SPINAL NETWORK NEWS 27
University of Otago was a run of C+ grades – I think I saw
the inside of a library twice – we made sure we enjoyed
ourselves. It was only when I came to the University of
Canterbury which was much more wheelchair friendly. I
learned very quickly that if I went to a library and applied
myself, I could very quickly change my grades from a C+
to a B+. I did my study in organisational psychology and
came out looking for a job but quickly realised that no
bugger wanted to touch you in a wheelchair. No one
would employ you, particularly in the private sector. My
family background is farming in South Otago. I was one of
six children. I decided to stay here after my study. In the
end I got a job with the Area Health Board in research and
planning. I worked in orthopaedics for a few years.
Dr Richard Smaill admits he saw the inside of a
library only twice in his BA in Psychology.
unfortunately, I used to be a pretty good rugby player.
I was playing against some 17 and 18-year olds. We were
playing St Peter’s College from Gore. It was a head on
tackle and I slipped just as I was looking to tackle the
chap. He was one of those guys who lifted their knees very
high when they ran. I slipped and stuffed it up, and my
head hit his knee. I knew I was in trouble.
What was the rehabilitation like back in those days?
The first week I was in Dunedin Hospital. The surgeon
who was looking after me told my parents that he didn’t
expect me to live the week. I was on an old stryker bed
which they turned every four hours. They were an
absolutely horrible bed. I did last longer than a week and
that is when he thought he better get me to the Spinal
Unit at Christchurch Hospital – the Spinal Unit at
Burwood didn’t exist in those days. That is when I got
really sick. I went into paralytic shock. I couldn’t digest
any food and I was a really sick lad for quite a few months
really. Dr Angelo Anthony and Mr Allan Bean who have
been specialists for most of my time in a wheelchair
started working at the Spinal Unit around that time. I
remember Dr Anthony as a registrar so we go back a long
way. It was dealing with those guys that enabled me to
gain knowledge – enough knowledge to keep me alive.
Not just me but a whole bunch of us really.
What did it mean to be awarded the Winston Churchill
Memorial Fellowship?
It was a huge opportunity but it came at a terrible time. It
was back in the day when there weren’t emails or things
like that. I used a fax machine to work out and plan my
itinerary. The Health Reforms were starting to take place
and I had a conversation with my Area Health Board boss
who said if you want to go, you better go now as I can’t
guarantee you will have a job in six months. I remember
getting communication when I was over in Britain which
basically said all Third Tier Managers would be made
redundant. In a funny sort of way, they did me a favour as
I left and set up my own business doing career
counselling and strategic planning for different
organisations.
I was only home a week from the trip and I ended up in
hospital with a nasty urinary tract infection, which ended
up in my bloodstream. I was a very sick boy. Dr Angelo
Anthony read the riot act to me. He said you have to
realise that you are a tetraplegic and you can’t carry on
working full-time, raising a young family and doing the
hours that you are doing. You are going to kill yourself. He
wrote me a very strong letter which suggested I should
start working part-time. The funny thing is when you
have your own business you end up working just as hard.
So, I put in long hours on the computer and it caused neck
pain and shoulder pain.
What happened after your rehabilitation?
I went back to boarding school [at John McGlashen
College] after my injury. I had a nurse who would come
and get me up in the morning. Then I would be with the
boys for most of the day. The nurse would come back and
help me get into bed at night. I lived in the boarding
house for a couple of years and got University Entrance
and went on to the University of Otago. Back in those days
I was only the second person to go to the University of
Otago in a wheelchair. The first person was a guy called
Mark Thompson who did a law degree.
What appealed about Psychology?
Back in those days I was
only the second person
to go to the University
of Otago in a wheelchair
[after Mark Thompson].
Probably every weekend getting on the booze [laughs].
Nobody could tell you the future about your injury and
the focus at that time was to go out there and make sure
you enjoyed yourself. My BA in Psychology at the

NEW ZEALAND SPINAL TRUST 28
In 2000 you had another setback with your health,
what happened there?
Over Labour Weekend in 2000 I lost about 30 – 35 percent
of my movement. Bang just like that I lost it overnight. So
I went back to hospital and then into the Spinal Unit and
they couldn’t figure it out. They hadn’t experienced
anything like that before. It took them a long time to
figure out, but they worked out that where I had my
original injury was still quite unstable and it had moved
and caused more damage to my spinal cord. I was on and
off for neurosurgery for the first couple of years and they
were quite worried because back then they hadn’t done
the proposed neurosurgery that high up on a person with
SCI before. After two years the neurosurgeon said yes, he
can do it. They left it up to me and my wife to make the
choice. I chose to go ahead and it stabilised things but it
didn’t bring back all my movement. So I went from an
incomplete C5/C6 to a C4/C5. For example, I could not
drive anymore.
That setback inspired you to study again, what was the
experience like second time around?
When I went back to university in 2006 – 2007 I was
overwhelmed by the disability support services because
back in my day they just didn’t exist. When I went to
university first up there was nothing, absolutely nothing
– the registry office just didn’t want to know me. When I
went back in 2006 there was a whole support service that
was available to those with disabilities. It was
phenomenal. Today it is a totally different world and it is
wonderful.
What were you looking to achieve with your PhD?
The question is often asked at what point is someone with
a disability ageing or are they aged and disabled? When
does it switch over? Internationally there has been a
massive amount of research in this space. The majority of
the research indicates that someone with a spinal cord
injury, if they look after themselves, can live 90 – 95
percent lifespan of an able-bodied person. That was
certainly not well documented before. It is not saying that
you are not going to have a variety of complications along
the way.
One thing is clear if you don’t look after yourself and your
body then you are going to pay the price. There is no in
between there. In the end whether you are abled bodied
or disabled we all end up in the same place. We all end up
getting old and getting stuffed.
In the end whether you are
abled bodied or disabled
we all end up in the same
place. We all end up getting
old and getting stuffed.
before 1990 but the National Health Index (NHI) database
was really unreliable. It is meant to be cleared and
checked and deaths were meant to be removed but when I
went through it, I realised there were a number of people
who had passed away who were still on it. It has been a bit
of a journey but a number of people are working towards
fixing it, which is great.
What advice do you offer others with an SCI who are at
the start of their journey?
Life is but a journey and you only have one shot at it, so
you better make give it a pretty damn good shot. You need
to make the most of every day. It get’s harder as you get
older. I am coming up to 62 and I am finding that it’s not
my biological age, it is my age since the injury.
The research shows that time since your injury has more
of an impact than your biological age because you are
sitting down, your bones aren’t as strong, you are more
prone to arthritis, more prone to obesity which leads to
cardiovascular problems and respiratory problems. All
of that is a result of the fact you can’t physically exercise
in the same way. But you can live a full life – it is all up
to you.
Special mention:
Mark Thompson, named in Richard’s story as the first
person to attend the University of Otago in a wheelchair,
passed away recently at the age of 74. Mark was a great
survivor and he shared his story in the SNN. He enjoyed a
full and abundant life despite 51 years in a wheelchair
following his tragic accident at the age of 22. Our thoughts
and prayers go out to his friends and family at this time.
You are on the board for the New Zealand Spinal Cord
Injury Registry(NZSCIR), how important has that
work been?
Getting the registry up and running has been a huge
thing. When I started my research, it became clear that no
one in New Zealand actually knew how many SCI’s there
were in New Zealand. That is one of the things that the
PhD looks at. I was able to identify around 1500 injured

SPINAL NETWORK NEWS 29
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New Additions August 2020
NEW ZEALAND SPINAL TRUST 30
Sleep: Are You Getting Enough?
The science of sleep, and how
to get more
by George A. F. Seber, 2020
This is an essential
tool box for anyone
who has sleep
problems (which is
probably most of us!).
The book covers all
aspects of sleep,
including the science.
The book is a practical
resource for medical professionals
and counsellors.
Journals/magazines
New Mobility: Social Media
Influencers, Issue 319 Apr 2020
New Mobility: Life in the Time
of COVID-19, Issue 320 May 2020
New Mobility: Active Vent Life,
Issue 321 June 2020
With The End In Mind:
how to live and die well
by Kathyrn Mannix, 2018
Dr. Kathryn Mannix
has studied and
practiced palliative
care for thirty years.
In With the End in
Mind, she shares
beautifully crafted
stories from a
lifetime of caring for the
dying, and makes a compelling case
for the therapeutic power of
approaching death not with
trepidation, but with openness,
clarity, and understanding.
Spinal Network News: Jezza Williams
on Inclusive Tourism, vol 23 issue 1
May 2020
Dynamics for Human Health
(http://journalofhealth.co.nz/
vol. 7 issue 2 June 2020
The Accidental Tour Guide:
adventures in life and death
by Mary Moody, 2019
When Mary loses her
beloved husband,
her world is turned
upside down. Part
of her journey to
reignite her
passion for living
is to boldly go
where she has never
been before – in her travels and in
her everyday life.
For all enquiries about the
Resource Centre - Contact
Bernadette Cassidy
bernadette.cassidy@nzspinaltrust.org.nz
or phone: 99484
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SPINAL NETWORK NEWS 31
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NEW ZEALAND SPINAL TRUST 32
Introducing our team
Q and A with Su Marshall on the Fundraiser’s role
Su Marshall is not the sort of person who sits
down for long. She is always up and about
and looking for the next opportunity. The
born-and-bred Cantabrian, with her “glass
half-full” perspective, is the ideal person to
be looking for prospects in a time of crisis.
Su became the most recent addition to the
New Zealand Spinal Trust team. She began
working as the National Fund-raising
Manager in February but, just weeks later,
COVID-19 hit the world and New Zealand.
We spoke with Su about her background, her
passion for making a difference, and how she
plans to create a sustainable funding model
for the New Zealand Spinal Trust (NZST).
Tell me about your background in fund-raising/
sponsorship
I began fund-raising 15 years ago after a work colleague
suggested I should do it. I worked as a consultant for 12
years for various clients, including the Christchurch City
Mission, Hohepa Canterbury, Pillars and Seabrook
McKenzie. I also worked on capital campaigns for
Christchurch Cathedral, Clutha Rec Centre, Methven
Heritage Centre and Isaac Theatre Royal. So, I have built
up a broad range of fund-raising skills and experience and
I had phenomenal mentors in Joy Simpson and Graeme
Brady. I then went on to be National Grants Manager for
the SPCA for two years, when they moved to a single
organisation model. And now I’m at the NZST.
What was the appeal about coming to work at the NZST?
Initially, it was Hans… I’d met Hans through the Funding
Institute of New Zealand (FINZ) meetings, and he is such
a lovely, genuine guy that I knew the organisation would
likely be awesome. After reading the job advert, the role,
itself, sounded like a great challenge to sink my teeth into.
I kept thinking of ways to build the fund-raising. And
then, when I got the job and met the team, I absolutely
knew I was supposed to be here. Everyone is so passionate
about what they do, and they are all so kind, and
supportive and funny … they are my kind of people.
What have been some of your biggest learnings about
the organisation so far?
Coming to grips with SCI and what that entails for
day-to-day living has been a biggie. Everyone’s journey is
so unique and personal, that it’s important our team has
the freedom to respond to individual needs.
Su Marshall has set her sights on creating a sustainable
funding model for the NZST.
And I’ve been meeting and getting to know our donors
– the recent appeal and an upcoming database update
have seen me diving into the Donor records and
connecting with those who support the NZST. I keep
saying we have a passionate team, but that passion
extends beyond the office – we have some extraordinarily
passionate supporters as well.
What have been some of the standout moments so far?
The response to the COVID-19 lockdown and aftermath.
The whole team just went “Right – let’s do this” and
worked out a way to make it work. And the response from
our amazing supporters when we went out to ask for help.
People were so generous, even when they may have been
facing an uncertain time themselves … that kind of
support shows how much the NZST’s work is appreciated
by our community and that feels so good.
COVID-19 hit soon after you started and has obviously
created some big challenges?
We’ve had a few of our generous funders ‘shut up shop’
completely during the lockdown – gaming trusts were not
receiving any income, so they could not give out grants.
And this has caused a major speed bump in our
fundraising. We are heavily reliant on fundraising to
cover our operating costs … in the current budget
approximately 80 percent of the Trust’s income is
through fundraising initiatives.

SPINAL NETWORK NEWS 33
“Throwing myself out of an airplane at 13,000 feet to raise
money for SPCA … I really throw myself in to my job.”
What will be some of the key things the NZST must do
to overcome COVID-19 and the financial challenges?
We rely on grants for a large portion of our fundraising, so
the future is a little bumpy – will gaming trusts be able to
fund in the near future? Will the share market hold for
private trusts income? Will rental income hold for
commercial properties that fund trusts? How long will it
take for everything to settle down? I’m looking to
strengthen our relationships with individual donors and
business partners, so we can grow a more balanced
fundraising programme.
Why should companies/people support the NZST?
Because this team does an amazing job supporting a part
of our New Zealand community which have had some
major hurdles to overcome (and will have more in the
future) and who frequently are side-lined in an
‘able-bodied’ focused world.
Our team model real life with an SCI and show how
positive it can be. When the NZST says we ‘support
positive futures’, our team live that vision. The SCI
community is a sub-section of the broader community
and is just as diverse and capable – they are a force to be
reckoned with and should not be overlooked by the
business community. They have so much to offer in terms
of skill, talent, creativity and purchasing power. Any
business which supports the Trust’s work supports people
with an SCI to get back on track with their life -
participating in and contributing to New Zealand life
in general.
What type of partnerships could be achieved?
We do not have a lot of programme or activity costs – the
majority of our operating expenses is paying staff salaries.
And boy, are they worth it! We are interested in true
partnerships – where both sides are equal and have a
genuine desire to help each other. We find ways to
acknowledge a business’s support in a way that promotes
the business them, without compromising NZST’s
relationships with our clients or our ability to advocate.
But, if any business wanted to give generously just because
they felt good about that – we could work with that too.
Are you excited about New Zealand post COVID-19
and the opportunities for the NZST to grow and
further develop?
I’m excited that COVID-19 gave us an opportunity to reach
out to our community and start conversations around
NZST’s funding and how people can support us. This was
something which had been planned, but COVID-19 gave
us the opportunity to do it sooner. I wouldn’t want to
always reach out as a result of a national emergency, but it
was good to have a positive aspect to this situation. In the
past we have relied heavily on grant funders, and not
given individuals many direct opportunities to help us
keep doing what we do. So many people appreciate the
work this team does and it is lovely that they have had the
opportunity to show that in a really helpful and practical
way. I think many people might have thought we were
government-funded, and had not realised how much the
Trust relies on fundraising to keep going. Now that they
do, they have really stepped up to support us. Many have
even begun monthly donations, which is a huge help in
‘flattening’ our budget bumps.
What is the goal for your role at the NZST?
To develop a broad, even platform for fundraising – not
too reliant on any one particular area. Also, it would be
good to reach a point where the Trust could launch a
capital campaign to raise funds for a new building.
Perhaps even reach the point where people would consider
leaving a gift in their Will to support the Trust’s work
beyond their lifetime. All long-term plans – first, we have
to make sure we can always pay our bills and be here to
support people with SCIs, and their whānau and friends,
as they get on with life. My contact with donors so far
has been nothing but positive – the NZST has such
awesome community support. On a more personal level,
I am looking forward to really getting to know our
community more.
For Fundraising and Partnership
opportunities contact:
Su Marshall - National Fundraising Manager
+64 21 288 3011 | su.marshall@nzspinaltrust.org.nz

NEW ZEALAND SPINAL TRUST 34
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SPINAL NETWORK NEWS 35
Thank you to our
Funders & Sponsors
The New Zealand Spinal Trust appreciates the generous support of the following
funders. Without their kind support, the Trust would not be able to deliver the
variety of services to assist clients to live independent lives right now.
Permobil is a global leader with over 50 years experience
in providing advanced medical technology and
state-of-the-art healthcare solutions. Today, those
solutions include the sale and rental of power wheel
chairs, manual wheelchairs, power assist and seating &
positioning products.
Rehabilitation Welfare Trust
The Elizabeth Ball
Charitable Trust
Air Rescue Services Ltd
Deluxe Box
Crusaders
Canterbury Masonic
Charitable Trust
FreshChoice Parklands
Healthvision NZ
Are you a subscriber?
It’s easy to subscribe to the NZST and it only costs $30 a year.
Your subscription helps with the printing of the Spinal
Network News magazine and helps us support the positive
futures of people with spinal cord impairment.
Go to our website and click on
the red ‘membership’ button
www.nzst.org.nz

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