SNN_August 2020 Issue FA_low res

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