Last September, we held the first-ever MND Hui at Parliament. The hui offered the chance for people working in various disciplines across healthcare throughout the country to come together and discuss the clinical needs of people living with Motor Neurone Disease in New Zealand.
What became apparent throughout the day was that there are regional differences in the care available to people with MND in New Zealand.
An outcome of the hui was that several clinicians volunteered to form a working group to develop standardised national guidelines to improve care for people living with Motor Neurone Disease and their families.
The MND Clinical Working Group is made up of 14 members from all around the country including neurologists, respiratory and palliative care physicians, nursing and allied health professionals, as well as MND New Zealand team members.
Expected to span two years, the vision of this collaborative project is ’improving care, improving lives’’. The key focus areas are developing national guidelines for the management of MND, working with the Ministry of Health to improve access to practical support and reviewing resources available for health care professionals.
Group members have had the opportunity to meet four times so far, including one face to face meeting in Wellington at the Ministry of Health. Because group members are based all over New Zealand, monthly video calls help them keep in touch and work together on objectives.
Right now, the group is working on drafting guidelines for both GPs and specialists around the recognition and diagnosis of MND. The draft guidelines will then be shared with various stakeholders, including GPs for feedback and review over the next few months.
The next focus area for the group is drafting guidelines for the ongoing management of MND including but not limited to, nutrition and swallowing, communication and respiratory care.
MND New Zealand Community and Research Advisor, Claire Reilly who is chairing the group, says: “This is a big project and there is a lot of work to do but we have made a great start, and we feel very fortunate to have such an amazing team of clinicians volunteering their time because they feel as passionate about improving care for people and families living with MND as we do’’.
The Motor Neurone Disease Clinical Working Group has made an excellent start on their objectives, and we look forward to sharing more about their progress in the future.