SNN_August 2020 Issue FA_low res

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