MS: Busting the Myths
June 8, 2021 | Advocacy, Media
Multiple Sclerosis NZ is thrilled to announce our President, Neil Woodhams, has received an honour in the Queen’s Birthday List for recognition of his services to people with Multiple Sclerosis.
Neil is a leading advocate for New Zealanders with MS, so we were proud to support the application made by MS Auckland of this well-deserved title. All of the work Neil does is on a voluntary basis and he is instrumental in leading the organisation to the strong and positive position it is in today.
Neil is a passionate advocate and Multiple Sclerosis NZ has been fortunate to have his skills, knowledge and drive on our advocacy team. Despite being a small organisation, it is with those skills that we can achieve big things.
Yesterday he received his Officer of New Zealand Merit (ONZM) – a most well deserved honour. https://dpmc.govt.nz/honours/lists/qb2021-onzm#woodhamsne
Neil was elected as President of Multiple Sclerosis New Zealand’s National Executive Committee in October 2020, following 6 years as Vice President from 2014 and Committee Member since 2010. Neil held a previous term on the Executive Committee between 2003 to 2006, sitting again as Vice President in 2005 to 2006.
In his time with MSNZ, Neil has been instrumental in leading the organisation to the strong and positive position it is in today.
All the work that Neil does for MSNZ is on a voluntary basis. Neil dedicates over 30 hours a week to MS whether through Multiple Sclerosis New Zealand, the Multiple Sclerosis Auckland Regional Trust or the New Zealand Multiple Sclerosis Research Trust. He also has an extensive list of other volunteer commitments and for many years was President of MS Auckland, who nominated him for the award.
Multiple Sclerosis has played a pivotal part in Neil’s life for the last 25 years since his wife Erin’s diagnosis in the 1990s. Neil and Erin have four boys, one of whom is also diagnosed with MS. Seeing the impact that MS has had on the lives of his family has been instrumental in solidifying his commitment to the cause.
Neil’s passion for MS comes from wanting to improve the lives of those diagnosed in the future and who would benefit now from systemic changes. Neil is a passionate advocate and Multiple Sclerosis NZ has been fortunate to have his skills, knowledge and drive on our advocacy team. Despite being a small organisation, it is with those skills that we can achieve big things.
Neil was a key figure in seeing the initial high efficacy treatments, Tysabri and Gilenya, be funded in 2014. Despite advancements in treatments, and access to these having been available in Australia seven years prior, New Zealand had lagged behind with approving funding. This meant that New Zealanders with MS were falling well behind their Australian counterparts in quality of life, employment status, reducing the impact of the condition and greatly increasing disability.
Driven by this injustice, Neil led MSNZs call for these treatments to become available. With Neil’s involvement MSNZ has been able to successfully advocate for 8 treatments to now be funded. We are now seeing people staying in employment for longer, having more positive outlooks about their long-term futures and health outcomes, and improving overall quality of life.
The passion for improving health and quality of life outcomes for New Zealanders impacted by MS does not stop there. Since 2014 MSNZ has been continuing to advocate to widen the access to funded treatments which evidence strongly shows is too restrictive. Determined to see fair and equitable access Neil has at no stage been discouraged from continuing the course. There have been many points where others would have stepped back from the fight but encouraged by the strong evidence, determined to overcome the injustice, and spurred on by the people with MS that we hope to benefit from widened access, Neil has been a crucial member of the advocacy team, keeping up the momentum. In March 2020 we finally saw many of these changes be approved which will keep people on treatment for longer.
Under his leadership MSNZ also continues to lobby for funding for treatments for Secondary and Primary Progressive MS, increasing resourcing for neurology services and the availability of Autologous Haematopoietic Stem Cell Transplant (aHSCT) as a treatment option for MS.
As Erin’s carer Neil is also passionate about improving the lives of families and carers supporting those in New Zealand. Neil strongly advocates for equitable access to carers supports. He has personally seen the variances nationwide and the difficult process people needing help must go through to access this. Neil has represented MSNZ in the Carers Alliance for several years ensuring the voice of the MS Community is heard.
Collaboration and networking is vital for the future of our organisations and adding power to our voice. As such, Neil has sat as our representative on networking committees such as Patients Voice Aotearoa and the Neurological Alliance.
In 2015, MSNZ nominated Neil to Pharmac’s Consumer Advisory Committee. Neil’s application was accepted, and he took up the role on the proviso that he would still be permitted to advocate for Multiple Sclerosis, which was agreed. However, in 2019 following a key submission from MSNZ being mishandled, Neil stepped down from the Committee as it was ethically untenable to remain on the Committee and represent the interests of people with Multiple Sclerosis, their carers and families with any integrity in the public arena. Neil is a man of principles and we applauded his decision.
Neil is one of MSNZs primary media spokespeople and regularly offering to speak to people with MS and our Regional Societies across the country to spread our message and ensure equitable access to information.
Strong Regional Societies (our members) underpin a strong Multiple Sclerosis New Zealand and Neil has spent countless voluntary hours and thousands of kilometres travelled supporting many of our Regions with governance advice in times of need.
MSNZ was proud to support the nomination by MS Auckland for a Queens Honours award for Neil to recognise his incredible dedication and commitment to the MS Community. We are delighted his nomination has been recognised and on Monday 7th June he received his Officer of New Zealand Merit (ONZM) – a most well deserved honour.