MS: Busting the Myths
December 18, 2024 | News
As we close out the year, the team at Multiple Sclerosis NZ (MSNZ) are looking back at what has been a year of both growth as an organisation, but also frustration for the health and disability community due to changes and lack of progress in areas which impact quality of life.
Leading Service Excellence
At MSNZ, we welcomed two new additions to our team this year, bringing our small but dedicated team to 5. Vereana Wheatley has been our star Administration and Finance Lead, keeping everything moving behind the scenes.
We also welcomed Rachael Hofmann RN in August into the new role of Clinical Services Lead. Alongside her 2 days a week at MSNZ, Rachael also works part-time as a Clinical Nurse Specialist in Neurology at Te Whatu Ora Lakes in Rotorua where she routinely sees MS patients. The recruitment of Rachael into this role marked a significant leap forward for us as an organisation, progressing our strategy to achieve our vision of excellence in MS Services.
MSNZ’s Mission is to coordinate and lead the advances in best practice Multiple Sclerosis care to improve the outcomes of those affected by MS.
We are one of 20 MS organisations in New Zealand. Alongside us is the New Zealand MS Research Trust focussed on investing and encouraging opportunities for MS research, as well as our 18 member organisations, MS regional societies, providing a range of support services to those affected by MS in their local communities.
Many MS organisations have existed for 40 – 60 years which is an incredible achievement. This is due to the passion and energy that exists and the value of having a locally driven service. With that in mind, we have seen the needs of people with MS changing, no more so than over the last decade. The success of disease modifying therapies (DMTs), which we have advocated for very successfully, is changing the impact MS has on the day to day lives of those affected. Ever-advancing research is also telling us even more about the importance of practical lifestyle modifications to improve health outcomes. As a result, we are seeing people continuing to work, stay active and experience less interruptions to daily life.
However, treatments are unfortunately still not available for all people with MS. Changes within government systems are adding additional stressors, causing increased rates of financial worries, loneliness and mental health concerns.
For some time, we have identified the need for a Clinical Services Lead at MSNZ to further our strategy towards service excellence in MS care. We are focussed on delivering information and advocacy as well as supporting regional societies to deliver services that have a strong clinical and evidence-base.
Regionally employed Community Advisors are critical to the delivery of care for people, families and communities. Rachael is connecting with our member organisations, to understand how we can best support and strengthen the regional Community Advisor workforce nationally. Through enhanced career training and development, Community Advisors will be supported to improve outcomes for people affected by MS in their local communities.
As regionally based organisations, it is critical for us to understand the unique strengths and pressure points that our members work within. Access to specialist neurology or allied health services varies throughout New Zealand which creates inequity for the workforce and the people they care for. We are focussed on working with our member organisations to meet their individual needs to retain caring, people-centred and evidence-based models of service.
New Resources Supporting People to Live Well With MS
In January we published our new Living Well with MS (LWWMS) resource pack. Designed to provide people impacted by MS with a review of MS, the causes, how it’s diagnosed, symptoms, treatment options and most importantly insights on how to live well with MS. The packs have been exceptionally well received, and we have in the last year sent over 1000 packs into the community.
Supporting New Zealanders to continue working
In March this year we funded two Dorothy L Newman Scholarships to Emma Lord and Ashley West. Ashley was supported to continue her dreams to become a teacher with a scholarship to support her Bachelor of Arts (Education). Investing in the future of our Tamariki is so important and we were pleased to support her passion and tenacity.
We also were pleased to support Emma Lord with her Bachelor of Counselling. As a country in desperate need of more counsellors Emma’s commitment to harnessing her skills and own experience to support others shone. We are pleased to also be supporting Emma for her upcoming final year.
As well as our ongoing support for Emma, we have just confirmed the awarding of 4 other scholarships for people with MS who will be studying in 2025. These hard-working and committed recipients are looking to either further their career or having to make changes due to their MS. We are proud to be supporting them on their journey. We look forward to sharing more about their stories in the new year.
Advocating for Change
MSNZs advocacy work continues to have impact on the MS community, those diagnosed and their whānau:
Standing together for change: In November we were invited by the Board of Pharmac to be part of a select group of patient advocacy groups to share our experiences with Pharmac. MSNZ has a long history advocating to Pharmac, and compared to many of the other organisations present, significant success with a range of treatment options funded. We were pleased to have the opportunity to share our experiences, and the hurdles we battled to fight hard for our community’s needs. Many of our campaigns have taken 5-8 years to achieve success. After voicing our concerns and struggles, we were then able to provide input and solutions into changes the Board are looking to make within Pharmac, expediting its processes, becoming more transparent, improving its communications and engagement with stakeholders. We hope the changes will lead to a more patient-centred approach to treatment decisions.
First Treatment for People with Primary Progressive MS Funded: As of 1st October 2023, Pharmac began funding Ocrevus (Ocrelizumab) for Primary Progressive MS (PPMS), the first treatment option for the most disabling form of the condition, affecting 10-15% of people with MS in NZ. Trials show Ocrelizumab can delay time to wheelchair by 7 years, allowing people to continue working, supporting their families and whānau, and living well. This was an extraordinary milestone emphasising the importance of preserving long-term brain health. We understand that since then, approximately 130 people with PPMS have begun receiving funded treatment.
If you have PPMS and are on Ocrevus, we would be interested to hear how the treatment is impacting your life. You can either contact us via our website or through your local Community Advisor.
However, in May 2024, MSNZ raised publicly that people with PPMS in Canterbury were on an indefinite hold to start treatment, if they had been assessed and approved, or left not knowing if and when they would have an assessment for eligibility. This was due to the lack of resourcing at multiple department levels impacting capacity levels. Some of these people were on the verge of being ineligible due to the access criteria. MSNZ launched a targeted media campaign to raise the issue, which had been at a stalemate for 5 months, as clinical staff waited to learn if more resourcing was available. As a result of our successful advocacy and media engagement, which included front page coverage in The Press, prime segments on 1News at 6pm and Radio NZ, it was announced within 48 hours that people with PPMS would begin treatment as soon as possible if already approved, or be assessed within 4 months.
We wouldn’t of had such success without our brave advocate Bruce standing up for himself, and others like him. Thank you, Bruce.
Ensuring New Zealanders with All Types of MS Have Equal Access to The Best Available Treatments: We are currently advocating for 4 new treatments (Cladribine, Kesimpta and subcutaneous Ocrelizumab and Tysabri) which would have a positive impact on the overburdened infusion clinics across the country, and reduce barriers to access for people with MS. We are also advocating for what would be the first funded treatment for secondary progressive MS (SPMS), Siponimod, and funded access to Shingrix, the shingles vaccine for people under 65 with MS on immunocompromising therapies.
Highlighting The Economic Impact of MS and Advocate for Changes to Improve the Financial and Mental Health and Wellbeing of Those Diagnosed and Their Families in The Long-Term: Our major project reviewing how including societal costs in the cost evaluations for treatments could change Pharmac’s approach to funding medicines was released in October. Health Economist, Dr Richard Milne’s report clearly demonstrated that for Pharmac to make quicker and smarter funding decisions it needs to include whole of society costs. These include loss of income, loss of tax and superannuation contributions for both the person with MS and their partner and whānau, as well as the costs of hospitalisations, equipment, comorbidities, and the cost of caring for those with a disability.
In November we presented the report to Todd Stephenson MP, representing the Associate Minister of Health (Pharmac), and have had initial discussions with Pharmac. We understand Pharmac are taking this under review alongside other work they are undertaking to assess societal cost approaches to treatment funding decisions. Our aim is to see treatments which would improve the lives of people with MS and chronic conditions, supported with earlier access to the best therapies, ensuring they can continue working and contributing for longer, protecting their brain health and preventing premature disability.
Supporting Selfless and Dedicated, Unpaid Family Carers that Are Burning Out and Lack the Mental, Financial and Health Support They Need and Deserve: The changes with disability funding have taken a significant toll on many organisations, including ourselves. We have worked with allied organisations, particularly the Carers Alliance, to ensure the needs of people affected by MS are raised. Please continue to sign the petition we have spearheaded with the Carers Alliance: WeCare – A campaign for carers. We’re calling for a home in government for family carers, and for action to protect their mental, physical, and financial wellbeing. Add your voice to the campaign and help us make a difference in the lives of more than a million New Zealanders care for family members and whānau.
Navigating the changes to disability services: The changes to disability funding was an unexpected change for the whole community and one that caused significant upset and distress to many. We worked with our alliance partners to ensure the voices of the disability and caring communities were heard. Alongside members of the Carers Alliance Executive, we met with the Minister for the Community and Voluntary Sector, Louise Upston, to highlight the devastating impacts the changes brought for many. In 2025 we will be engaging with the Disability Support Services consultations to highlight the issues we have heard in our community. Please do continue to feed through to us how the changes have impacted you, and how Disability Support Services could be improved so we can best advocate on your behalf. You can either contact us via our website or through your local Community Advisor.
Educating GPs: We listened and heard strongly from many of you that while Time Matters in MS, so does the importance of gaining an early diagnosis and access to treatment. Many have struggled with being heard and referred to Neurology. With limited time during appointments, GPs needing a vast range of knowledge. With a hugely under-resourced GP workforce and significant wait times in many regions to see a Neurologist, we’ve been looking at how we can help to overcome some of the barriers. Between September and November, we ran a three-part education series for GPs in their specialist magazine GP Pulse, highlighting early signs of MS, identifying a relapse, and the importance of managing comorbidities. We’ll be continuing more of this work in 2025, looking at how we can reduce the delay in diagnosis many have experienced.
New Project
In October we advised in our webinar, that new research from the Compass Campus at the University of Auckland, had used the Integrated Data Infrastructure (IDI) to identify almost 5000 people with MS in New Zealand. We are looking forward to working with researcher Natalia Boven as she progresses this work in 2025 to compare the data extractable from the IDI, and compare to the 2006 Prevalence Study. We hope to be able to report later in 2025 on the epidemiological changes across almost 20 years of MS in NZ. We thank the NZ MS Research Trust for providing funding to support us to progress this critical work and provide data to inform our knowledge and advocacy.
Thank you
Just like for many of you, this year for us has been one of highs and lows, with a few curveballs to keep us on our toes. We’re excited to see the direction we’re progressing on our pathway to leading service excellence in MS Care and already looking forward to 2025.
We appreciate for many it has been a difficult year for many reasons, and we want to say how much we appreciate the support of each and every one of our donors, sponsors, volunteers and supporters who have donated their money, time or skills. We couldn’t keep striving for excellence without you on this journey with us.
A special thank you to our volunteer National Executive Committee who dedicate countless hours to MSNZ. While many organisations struggle to attract and retain Committee Members, we count ourselves as fortunate to have such a dedicated and support governance team who provide their skills and knowledge to guide our small operational team to make big steps.
While many of our MS organisations closed down for the holiday period, we appreciate MS doesn’t. Please look after yourselves and your loved ones these holidays. Be mindful of managing the heat and if you need medical advice or attention, please contact Healthline on 0800 611 116 for advice. If you are experiencing symptoms this handy ‘Recognising a Relapse’ card will help you to identify what steps to take.