The Neuromuscular Alliance Queensland (NMAQ) was formed on January 29th, 2010 and is comprised of a diverse group of specialist physicians and allied health professionals as well as representatives from various neuromuscular organisations, such as Montrose Access (MA), Muscular Dystrophy Queensland (MD Queensland), Duchenne Foundation (DF), SMA Association of Australia (SMAAA) and other individuals.
The NMAQ was formed for the purpose of spearheading the drive for a coordinated multidisciplinary neuromuscular clinic for the people of Queensland. Since its inception in January, the NMAQ has been involved in the development of a business proposal to the Queensland Government for the establishment and funding of a neuromuscular clinic at the Royal Children’s and Mater Children’s Hospitals in Brisbane for annual clinical reviews, as well as an additional business proposal for the funding of regular allied community clinics through Montrose Access’ Corinda and Strathpine Centres.
What would a neuromuscular clinic offer?
This proposal would provide the people of Queensland with a neuromuscular clinic staffed with a variety of specialists needed to provide all aspects of care along with a paid coordinator. This would enable families with children who have neuromuscular disorders to minimise the number of hospital visits required each year, with many only needing one annual visit. In addition to the annual hospital clinical visit, NMAQ have proposed that there should be regular community clinics for follow up support and care as required.
The hospital based clinic would specialise in the diagnosis and treatment of all neuromuscular conditions and would be able to provide the most current, comprehensive, specialist care available, as well as timely testing and evaluations.
In addition the clinic would foster the education of the broader Paediatric and GP network across Queensland enabling all children to receive the same level of care, regardless of where in the state they live. It would encourage care locally, with visits to the hospitals in Brisbane only when necessary. It would also pave the way for patients to choose to be part of a state neuromuscular registry and database linked with national and international registries, ensuring that Queenslanders would be able to participate in clinical trials within Australia and overseas without leaving the state.
What about the needs of adults?
While the proposed clinic will primarily serve the needs of children living with neuromuscular conditions it is the intention of the NMAQ to immediately begin work on the establishment of an adult clinic as soon as the Royal Children’s and Mater Children’s clinics and the Montrose Access community clinics are established in Brisbane. The proposed paediatric clinic would facilitate a seamless transition to ongoing adult clinical care.
What can I do to help?
You can have a vital role in helping establish a neuromuscular clinic in Brisbane by writing a letter to your State Member of Parliament in support of the proposed hospital based clinic and community based follow-up clinics, requesting them to put their support behind these proposals as well. You can also enlist friends and relatives to write as well, to show the depth of support for this initiative.
It is our belief that the stories of individuals, carers and family members living with neuromuscular conditions will be the secret weapon that will turn the tide in this struggle. Your stories are real and carry the strength of purpose and determination that can make this campaign successful.
How do I go about writing a letter to my MP?
The information provided on this website has been designed to assist you in writing your letter. You will find a letter template, and a letter writing help sheet which you may find useful.
These materials are offered as suggestions only. We believe that it is most important that you tell your story and show how a clinic in Queensland would have made things easier for you in your situation.
We have also included a link to assist you in locating your local State MP’s name and address, but if you have any difficulty, please feel free to call reception at MD Queensland on 3607-1800 from 9am to 5pm Monday to Friday for assistance.
How long do I have to write a letter of support?
Unfortunately, due to the upcoming Queensland budget deadlines, the time we have to promote the clinic is short. We ask, if possible, that you make this letter a matter of urgency so that the maximum impact and benefit from your story may be made upon the politicians who will ultimately make the decisions regarding the allocation of funding.
Let us know that you’ve written a letter
We realise that you will be contacting your MP by mail, but we would appreciate it if would let us know that you have written a letter by contacting MD Queensland on 3607-1800 or by sending the NMAQ an email at info@nmaq.org.au. This will help us show the level of support for the clinic in our discussions with politicians and the media.
