MS: Busting the Myths
October 31, 2023 | Education, Event, Training
On the 25th and 26th of October, MSNZ held our 56th AGM and our annual conference, attended by 38 representatives from Regional MS Societies, our members, National Executive Committee Members and MSNZ staff.
By all accounts, the conference is being reported as our most successful to date. This is thanks to a combination of excellent speakers, relevant and interesting topics and a positive atmosphere among the attendees to learn, connect and move forward together.
At MSNZ we are inspired at both, governance and operational levels, by our new strategy and the pathway we are heading. In 10 years’ time we envision MSNZ as the national leader for service excellence for people impacted by multiple sclerosis. Over the next three years we look forward to achieving our mission of coordinating and leading the advances in best practice multiple sclerosis care.
During the conference, we were able to celebrate many achievements throughout the last year. The international recognition for our work widening access to disease modifying therapies with the MS Brain Health 2023 Team Award, the progress made with making aHSCT an available treatment option for MS in New Zealand, and the work to secure funded access to Ocrelizumab for people with primary progressive MS.
Alongside the positives, we also discussed and acknowledged the state of the nation and how this is impacting MS communities across Aotearoa. We are regularly hearing reports of how the under resourced health system is having negative impacts on access to specialist services, delaying diagnosis and timely access to treatment. Te Whatu Ora desperately needs to address the workforce crisis and MSNZ is working with our colleagues in the Neurological Alliance to address this.
The economic burden of MS is being felt by many across the country. While it has always been an issue, it is worse now than ever before. MSNZ has already begun exploring areas where we may look to make a difference, in particular advocating for a review of the Community Service Card thresholds. Also noted was the value of Individualised Funding and ensuring that all those who can access do. Significant concerns were also raised regarding the inordinate delays for home modifications through enable with some waiting upwards of 18 months for ramps to be able to access or leave their home, or adaptations to make bathrooms safe for use. These barriers for access are having detrimental impacts on the quality of life of those with MS, and we expect other conditions nationally. MSNZ has already identified that dedicated family whānau carers are burning out at rapid rates. Lack of protections for their mental, physical and financial health and the dire state of respite services is meaning many are struggling. MSNZ heard the concerns raised and will be looking to address them. We encourage people with MS and their support networks to report any concerns in these areas to MSNZ so we can build our case for change.
Positively, MSNZ was able to provide updates on several other projects which have been underway during the year, including providing a preview of our new information resources, our Living Well with MS brochure, newly diagnosed pack and information leaflets which are near completion. We are excited to launch these new resources in the next few months which we have sought significant feedback from a range of stakeholders from people with MS, Community Advisors, MS Nurses, Neurologist and Allied Health Specialists. We were also able to share with our members our key learnings in fundraising, grants and bequests, in the hope that this will help to add value to their local activities.
MSNZ is the grateful recipient of a pro bono grant by Allen + Clarke, policy and regulatory specialists based in Wellington who are providing their expertise to develop a nationally standardised client satisfaction survey. Time was spent doing some initial exploration into what we would like to achieve from this project and how it might be delivered. Further work will take place over the next few months under the guidance of Allen + Clarke’s team.
We were fortunate to have several high-class speakers attend our conference this year starting with Dr Deborah Mason, MS Specialist Neurologist at Canterbury Te Whatu Ora. Dr Mason has recently returned from a sabbatical in the US, UK and Europe and shared with us her learnings and where she feels NZ services for MS may head in the future. It is interesting to hear how the UK takes a more cautious approach with their funding of treatments. With the recent changes to the special authority criteria for DMTs people in NZ have easier access to therapies than our British counterparts. However, the wrap around access to services at Queens Square, where Dr Mason spent much of her time, looks to provide exceptional services to patients. Interestingly, the numbers of specialist MS Nurses is double the number of Neurologist, highlighting the value and importance that MS Nurses provide to patient care.
On the Wednesday evening we were delighted to be joined for dinner by MS Auckland’s Ambassador, funny man Sam Smith and his wonderful family. Having trained and practised as a dentist in Wellington, Sam’s MS diagnosis upturned his world, for the better, being able to pursue his dreams of being a comedy writer. Sam hilariously taught us all “how to win a murder mystery television game show hosted by Paul Henry” following his successful win of Traitors NZ recently. While we may not all have the winning combination of requirements that Sam advised us that we need to win next time, we all certainly took something away from his “lesson”, how a positive attitude can go a long way in changing the course of your future.
On the second day we were honoured to hear from distinguished Professor Sir Richard Faull. Sir Richard began his career making ground-breaking discoveries about Huntington’s Disease and has since founded the world class Centre for Brain Research in Auckland. A passionate advocate for brain research, Sir Richard is an inspiration to all those either impacted by neurological conditions, or those who want to make a positive change in people’s lives. Sir Richard was joined by Sue Giddens the CBRs Research Engagement Manager, who together inspire change makers, funders, researchers and patients to join them on their journey of exploration and progress. We look forward to working closer with Sir Richard and Sue as we head on our own journey towards establishing standards of excellence.
Our conference rounded out by hearing from three of our regions who are all achieving excellence in their local communities. MS Auckland’s General Manager Nicola Bitossi shared with attendees more about their successful Ambassador Programme that has generated significant value for the organisation and MS Community in Auckland. Liz Hogan, MS Waikato Trust’s Client Services Manager, explained how their unique service with embedded links to the hospital based staff has had positive outcomes for those delivering and receiving MS services. This system has been developed over many years and the result of the people involved and willingness to work together. Finally, but by no means least, Amelia Davis and Lina Stroud, MS and Parkinson’s Canterbury Manager and Communication and Fundraising Manager respectively, shared how their Street Appeal still achieves huge success in the region. An enormous task supported by over 200 volunteers across 3 days, MS and Parkinson’s Canterbury have continued to maximise on the opportunity to not only raise vital funds, but also generate positive community awareness across the region through their presence.
Overall, the conference was a great success. We look forward to continuing to work with our member organisations as we move into this new era. We have many challenges ahead of us but will look to bring together and harness the strengths across the network for the benefit of people with MS across Aotearoa. Our grateful thanks to the Lottery National Committee for their funding support of our conference.
