December 17, 2019 | Advocacy, Education, Funding, Research
“Is it reasonable to wait four months for my neurology referral or MRI?” It’s a surprisingly common question, and that worries us.
We regularly receive calls from distressed people experiencing multiple sclerosis (MS) symptoms for the first time or in the throes of relapse. These people often feel helpless to speed up the medical attention and treatments they so badly need. It’s a scary scenario when timely appointments and treatments can make the difference between lifelong disability or not.
We do not believe this is right. New Zealanders with MS must receive faster services and greater access to treatments. Our health system must match international standards if we are to achieve the best long-term health outcomes.
That’s why we are advocating for change. But we need your support to make it possible.
To advocate well, we need to set a benchmark. MSNZ’s Good Service Project will review and benchmark New Zealand’s services for people with MS.
As a result of this study, we will be able to call for change in the New Zealand health system. It will also give people with MS the information they need to advocate for better service.
But we need your help to make it possible. Your support takes us a step closer to improving the level of service received by people with MS in New Zealand.
Please donate to the Good Service Project today.
New Zealand’s neurology services are under-resourced. As a result, these services fall below international standards in timeliness and accessibility.
The 2012-14 NZ MS Incidence Study, funded by MSNZ, showed that on average, it takes 4.4 years to receive a diagnosis of MS in New Zealand. People often wait for months more to receive critical drug treatments. However, this is much longer than international guidelines recommend.
By comparison to countries like Australia, we believe that New Zealanders:
Reports show that quick diagnosis and easy access to treatments can significantly improve a person’s health outcomes. It also reduces the overall cost to the health system. Long wait times and restricted access to DMTs can harm a person’s long-term brain health and increase healthcare costs.
Unfortunately, most people can’t identify the service they need for optimal outcomes. We find that many New Zealanders don’t know how to advocate for themselves within the health system, and that’s a problem. Research shows that an informed, well-engaged patient is more likely to achieve better health outcomes. We are concerned some people with MS accept the status-quo without speaking up.
We are here to advocate for better MS health outcomes in New Zealand. To achieve this, we must first map the discrepancy between the services received and international best-practice. And that’s why we need the Good Service Project.
Our goal for the Good Service Project is that it serves as a call for change and a tool to enable people with MS.
Beginning in 2020, the Good Service Project, or ‘MS New Zealand: Guidelines to delivering and receiving a good MS service in New Zealand,’ will evaluate the timeliness and accessibility of New Zealand’s services and treatments. We will do this in comparison to international best-practice, set by the experts at MS Brain Health. Benchmarking ourselves against these standards, we can quantify and precisely measure those areas where improvement is needed.
Armed with this evidence, we will advocate for change among the relevant stakeholders. We believe our calls for improvement will maximise life-long brain health for people with MS and prevent irreversible disability in New Zealand.
We do not intend for this project to criticise or find fault in the excellent work that neurologists and MS nurses provide within New Zealand. Instead, we want to highlight the enormous need for proper resourcing, enabling medical professionals to offer faster services and better treatments.
As a tool for people with MS and those going through a diagnosis, this study will communicate the standard of service they need. Fully informed, these people can confidently advocate for better service. We believe this will ensure the best long-term health outcomes.
This project has already received partial funding from Roche and Sanofi, two pharmaceutical companies, but there’s a shortfall – and that’s where we need your help.
All funds raised will go toward our advocacy programmes. These programmes aim to improve the quality of life for people diagnosed with MS, reducing the burden of the condition on all those impacted, including carers and families. Please support the Good Service Project today.