Have you missed Global Dystonia Updates and Information?
Awareness Events
⇒ National Pain Week
Championing the needs of Australians living with some form of chronic pain (including those with Dystonia). Check out the results of the National Pain Survey 2019! It explains the needs of people living with chronic pain.
⇒ Exercise Right Week
Encouraging Australians to be more active, but to help people understand where to find the right advice when it comes to exercise.
⇒ National Volunteer Week – Volunteers are “Making a world of difference”
ADSG would like to acknowledge and thank our members and the community in helping to raise awareness of Dystonia as well as other volunteers who work tirelessly to make a difference in people’s lives.
Special Announcement! Happy 8th Birthday to ADSG! 2 July 2019
The group has grown over the years and an appreciation to all for their support. If you would like to view a brief history of ADSG view our slide here → ADSG SLIDE
Upcoming Events and Meet ups!
⇒ Jeans for Genes Day: 2 August 2019
Supporting children with genetic diseases
⇒ Be Medicinewise Week: 19–25 August 2019
Understanding and communicating about medicines
⇒ Speech Pathology Week: 25-31 August 2019
Communicating with confidence!
⇒ CPEC Healthy Mothers Healthy Families: 31 August 2019
Free workshop to learn how to create a healthy lifestyle that fosters your own health and wellbeing alongside a happy and healthy family life.
For more upcoming events please visit our ‘Events’ page.
⇒ Get ready for Dystonia Awareness Month all through September
Do not forget to share our awareness posts!
Presentations and Videos
⇒ Dystonia Europe
26th Annual Conference & D(ystonia)-DAYS 2019
Information and Articles
⇒ NSDA – Understanding Spasmodic Dysphonia Handout
⇒ NSDA – Voice Therapy Exercises
⇒ DMRF – What is Lower Limb Dystonia?
⇒ A Surprising Use for Botox: Helping People Regain Their Voices
⇒ Dystonia Europe – DBS Patient Case Study
⇒ Mass. Eye and Ear Communications – Fact or Fiction? 4 Things To Know About Spasmodic Dysphonia
⇒ Brain & Life Magazine – How to Fight Fatigue: Fatigue is a troubling symptom of many neurologic conditions
⇒ Brain & Life Magazine – Questions to Ask About Depression
⇒ NPS MedicineWise – When should I take my medicines? A common question posed by patients, especially when starting a new drug
⇒ DMRF Canada – Focus On: Childhood Dystonias
⇒ DMRF – What is Myoclonus Dystonia (M-D)?
⇒ DMRF – Dystonia (Frequently Asked Questions)
Research News
⇒ Uni of Sydney – Complete this Survey! How Do Individuals with Chronic Dysphonia Cope?
⇒ Dystonia Europe – Complete this Survey! Dystonia – Rare or not?
⇒ Deakin University – Brain mapping study could pave way to treat neurological disorder
⇒ Taylor & Francis – Visual compensation in cervical dystonia
⇒ Springer – Consensus Paper: Experimental Neurostimulation of the Cerebellum
⇒ PhD student Meredith Moore – What I Learned from Surveying 471 People with Voice Disorders
⇒ Dystonia Medical Research Foundation – Promise & Progress
⇒ Tremor and Other Hyperkinetic Movements – Neuropathology of Dystonia
Updates for Noting
Medicare Benefits Schedule (MBS) Review Taskforce – Report by the Neurosurgery and Neurology Clinical Committee
The MBS review Taskforce has made recommendations to the Government and was endorsed. The report included a new item proposed – Botulinum toxin for focal dystonia. However in order for the new item Botulinum toxin for focal dystonia to be listed on the MBS, assessment by the Medical Services Advisory Committee (MSAC) is still required. This sounds promising and ADSG will monitor the progress of this. The Implementation Liaison Group (ILG) for Neurology and Neurosurgery will hopefully also have a consumer representative to support the implementation process.
The final report or recommendations will be added to the MBS review webpage. The revised report has the ‘non-spasmodic’ term removed after ADSG contacted the MBS review team. This will ensure that some patients are not being excluded from reimbursement for effective and appropriate treatment, especially patients with Focal Dystonia.
Links to further details
⇒ Draft Report from the Neurosurgery and Neurology Clinical Committee
⇒ Government response to recommendations of the MBS Review Taskforce
Centre for Community – Driven Research (CCDR) Database
The Centre for Community-Driven Research (CCDR) is a non-profit organisation bringing much needed change to the way we think about community engagement in health and research. Their vision is to facilitate meaningful connection between service providers, research organisations, the non-profit sector, practitioners, industry, government and the communities for which they provide a service or aim to benefit. This includes developing solutions to issues faced through community engagement.
One of the goals of the CCDR is for a more person-centric health sector globally through their core programs such as the PEEK. The aim is to conduct patient experience studies across several disease areas using a protocol that will allow for comparisons over time (both quantitative and qualitative components). CCDR also convened the Australian Patient Organisation Standing Committee (APOSC) which was developed out of a need for leadership and to support the delivery of best-practice community engagement in health, while continuing to develop evidence in this field of practice. The purpose of the program is to provide a platform for community-based organisations to consider and make recommendations on matters of strategic importance, relevant to national health systems, that relate to patient engagement in health policy, research, health services, Health Technology Assessment and program development.
The CDDR database is a list of community organisations or groups that exist in Australia. You can search the database to find these networks. CCDR is in the process of adding groups that are listed on the ACNC, but as a second step they will identify other groups as well and include them to the database. They already have our details and we are grateful that they will include us to this list.
More information ⇒ https://www.cc-dr.org/au/
Financial Services Council – Genetic testing and Life Insurance
It was announced that Australians will be allowed to get up to $500,000 of life cover without disclosing an adverse genetic test result and came into effect on July 1.
Following extensive consultation with the life insurance industry and genomics community the Financial Services Council (FSC) approved Standard No. 11: Moratorium on Genetic Tests in Life Insurance. This means if you want to get a genetic test or take part in genomic research you do not have to share the results with your life insurer.
Further details ⇒ Genetic tests no longer a barrier to getting life insurance
Medicare rebate increases – Patient rebates for 176 General Practitioners
These changes were applied in July 2019 and include services such as health assessments, chronic disease management plans, and mental health services provided by GPs.
Further details ⇒ https://beta.health.gov.au/ministers/the-hon-greg-hunt-mp/media/1st-of-july-medicare-rebate-increases
Visit and like our social media pages!
ADSG Community Facebook Page
https://www.facebook.com/AustralianDystoniaSupportGroup/
ADSG Twitter Page
https://twitter.com/ausdystoniasg
