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A tireless advocate for better MS treatment

As a Nurse Practitioner, Jodi Haartsen remembers the many stories she heard of people experiencing MS symptoms and them being dismissed.

The symptoms may have resolved, or delays were experienced in accessing specialist care. However, while people were waiting, their brain health was worsening, and damage was occurring.

There was also often the surplus emotional suffering of feeling like they weren’t being heard and struggling to get what they needed.

“We now have a greater understanding in MS care of the importance of timely access to care and treatment, of keeping a healthy lifestyle for brain health and the need to ensure we have standards that support all health care providers to be aware of these,” Jodi said.

Jodi has worked for many years as a passionate advocate for the MS community, pushing to ensure everyone with MS has fast access to the best possible treatments.

For the past 20 years, Jodi has worked as a nurse in the neurology field, in various roles, including surgery, stroke research, as an educator (teacher) and nurse practitioner, before joining the MS Plus team as Executive Manager, Client Engagement and Wellbeing, where she supports education and wellbeing initiatives for the MS community.

Jodi’s top 3 tips for brain health

  • When you’re worried, speak up
  • Keep active physically and mentally
  • Get the right people around you – not just health services but family and friends

Her recent role with MS Brain Health, which creates policies and guidelines to empower healthcare providers and people with MS to live their best lives, has also given Jodi a prime opportunity to change how people receive MS treatment.

“I became involved with MS Brain Health seven years ago because it was apparent to me that some people were receiving high standards of care in MS, while others were not afforded the same opportunity due to their location and resources.  There was a gap in a globally recognised set of standards that guided services delivery and helped people understand what to expect,” Jodi said.

“Overall, Australia has a wonderful health system for people with MS, although there’s still struggles within it. What happens in one state can be vastly different to what happens in another, and individual experiences are varied.”

The policy report the International MS Brain Health group created put forward a key strategy to support brain health in people with MS. The report included recommendations for leading a healthy lifestyle, monitoring MS disease activity, acting on changes, supporting shared decision-making, and ensuring access to treatment early in the diagnosis.

When Jodi first joined the organisation, MS Brain Health had just published these recommendations for best practice MS care. Jodi joined their steering committee to find the best way to share the information and make sure the policy was put into practice.

“One thing we focused on was, how do we encourage people to act quickly? For instance, in other areas of neurology, there is an awareness of time sensitivity, but in MS, it is still lacking. We had to ask ourselves, how do we communicate this urgency of referrals to the GP community? To have doctors say, “This is a new diagnosis. You need to see someone within one month, six months is too long, and damage is occurring.”

Jodi worked to communicate the brain health message nationally, as well as in her work in the MS clinic.  Using the Brain Heath Standards that were developed as part of the policy, she was able to make changes in clinical practice that included developing better practices for people to achieve a brain-healthy lifestyle and improve access to services.

“Through auditing our clinical activities against globally recognised standards, we were able to reduce our urgent clinic wait times from four weeks to two days.  As a nurse practitioner, I was constantly asking myself the question of how we can do things better and improve our care.”

“We all have a role to play to create change and action for people with MS to improve brain health, no matter how you are involved with MS.

“Brain health is all about acting now. It matters.”

Jodi recently received a global MS Brain Health Leader Award in the Independent Healthcare Professionals category.

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A tireless advocate for better MS treatment