At the end of July we hosted our annual Community Advisors Meeting in Christchurch where we had two full days of education and collaboration.
Annually, Multiple Sclerosis NZ organises our Community Advisor Meeting to support the ongoing education of regional staff who support people with multiple sclerosis (MS), carers and whānau in their local communities. The training provides an environment where Community Advisors and other service delivery staff collaborate, share ideas and support each other, most of who work in isolation. It is important for Community Advisors to keep up the education about MS, treatments, symptoms and optimal evidence-based management strategies to best advise their clients.
The theme for this year was MS Across the Lifespan. With sessions ranging from supporting clients following diagnosis right through to supporting people later in life with MS.
Our event kicked off with Dr Debbie Mason, Te Whatu Ora Christchurch Neurologist, discussing related demyelinating conditions Neuromyelitis Optica Spectrum Disorder (NMOSD) and Myelin Oligodendrocyte Glycoprotein Antibody-associated Disease (MOGAD). Many of our Regional Societies provide support for people in their communities with these conditions. Dr Mason also shared an update on Autologous Hematopoietic Stem Cell Transplantation (aHSCT) for MS. We were pleased to hear that three more patients have received aHSCT in Christchurch, and by all accounts, whilst still early days, they are doing well. aHSCT is available in NZ under strict criteria. If you are interested in exploring whether you would qualify for access, we recommend speaking to your neurologist.
We were also fortunate to hear from Kim Churton (speech language therapist) and Jessie Snowdon (physiotherapist) from On-the-Go Physio who shared their knowledge about communication, swallowing, and fatigue management for people with MS. As well as being a speech language therapist, Kim also teaches a range of pilates classes in Christchurch and online. With a particular interest in what she calls “neuro-lates”, she focusses on strength, balance, and range of movement for people with neurological conditions. Kim has kindly shared access to a 30-minute recording of her neuro-lates class, free for our MS Community. The class is mostly seated or in standing with support of a chair and focuses on strength, balance, and range of movement. You can access the recording here.
If you are struggling with fatigue, speak to your Community Advisor who will be able to share some useful learnings.
We also enjoyed an uplifting afternoon with Sharon Bennett from the Mental Health Education & Resource Centre who spoke to us about resilience building and self-care. This important session helped to remind our dedicated and caring group of Community Advisors to ensure they look after their own mental wellbeing, navigating their own lives while supporting others.
Ken Chou from Roche gave us initial information about subcutaneous Ocrelizumab which is currently under review for funding by Pharmac. While we have IV Ocrelizumab currently funded, MSNZ is working hard to advocate for subcut treatments of Ocrelizumab and Tysabri which would significantly reduce administration time and overcome many of the hurdles patients face accessing treatment.
Our meeting was rounded out with Tony Lawson, neurology Nurse Practitioner, from the sunny Bay of Plenty Te Whatu Ora, who spoke about ageing in the context of MS. It can often be difficult to differentiate between symptoms experienced by our older communities that are age or MS related, and he highlighted the complexities of this when identifying management strategies.
One of the biggest highlights over the two days was getting to hear from 6 of our MS Community Advisors themselves, presenting about services they are proud to deliver in their own communities. This is a valuable part of the meeting providing opportunities to learn from each other, celebrate achievements and share ideas.
We are very grateful to all our speakers for sharing their time and expertise with us.
On behalf of Multiple Sclerosis NZ, our regional societies and Community Advisors, a huge thank you to Roche Products NZ, Novartis NZ and Merck Healthcare who provided educational grant funding. Events like this would not be possible without their support and we thank them for seeing the value in ensuring MS Community Advisors received opportunities for professional development so that they can best service their members.