Have your say and take our survey

June 28, 2018 | Advocacy, Support, Treatments, Uncategorised

In 2017 MSNZ officially endorsed ‘Brain Health: time matters in MS’ , an international consensus report providing recommendations on diagnosis, therapeutic strategies and improving access to treatment in MS. Since then we have used the principles to direct and provide international support for our advocacy work into improving the access to treatments and services for people with MS in New Zealand.

MS Brain Health is currently consulting with supporting organisations, including MSNZ, to understand barriers to achieving optimal outcomes for people with MS across the globe.

We ask that you take this short survey to help us provide an consensus response from New Zealand. We have been provided with a short deadline for this survey and ask for your support in achieving this. Please complete this survey by Wednesday 4th July.

Take the survey here: www.surveymonkey.com/r/BrainHealth2018NZSurvey

We are looking for responses and appreciate your feedback. The information provided will also help guide MSNZs Advocacy Programme and ensure we understand what people diagnosed with, caring for or working to support people with MS see as the barriers impacting achieving optimal outcomes.

What Questions can I expect to answer?

MSNZ and Brain Health want to understand the order of importance that you or your team consider to be the biggest barriers to achieving optimal outcomes for people with MS in NZ. You will be asked to rank from 1-17 which you see as being the barriers with 1 being the biggest and 17 being the least. You will also be asked to comment further as to why you see the top 5 as being the biggest barriers to achieving optimal outcomes for people with MS in NZ and if there are any not included that you see as important.

The barriers you are asked to rank are:

• Low awareness of MS among the general public
• Slow referral by general practitioners / primary care physicians to neurologists
• Low rate of referral by general neurologists to MS specialist neurologists
• Limited access to specialist MS care
• Limited access to MS diagnostic procedures (e.g. MRI scan)
• Lack of healthcare professionals who specialize in MS management
• Poor use of the most up-to-date diagnostic criteria
• Lack of appropriate prescribing guidelines
• Lack of awareness about the role of lifestyle factors in the MS disease course
• Limited access to the full range of disease-modifying therapies
• Limited access to regular clinical evaluations
• Limited access to regular MRI scans
• Lack of standardized data collection
• Unreliable maintenance of treatment with a disease-modifying therapy
• Lack of regulatory and health technology assessment approvals
• Lack of economic evaluations of therapies and other healthcare interventions
• Limited use of multiple sclerosis registries and databases

You will also be asked what your relation to MS is, whether you are diagnosed with MS, caring for someone with it or working for an MS organisation or support service. This will help us understand what each group sees as the barriers to achieving optimal outcomes.

About ‘Brain health: time matters in MS’

MS Brain Health is an international group of MS experts calling for a radical change in the management of multiple sclerosis because time matters at every stage of the disease.

Brain health: time matters in multiple sclerosis presents consensus recommendations on diagnosis, therapeutic strategies and improving access to treatment in MS. Its core recommendation is that the goal of treating MS should be to preserve tissue in the central nervous system and maximize lifelong brain health by reducing disease activity. The report calls for major policy changes aimed at achieving the best possible outcomes for people with MS and those who care for them. Read more about Brain health: time matters in MS and the official report here.