November will be an exciting month for MND Associations around Australia.
Launch of MND Aware
On 15 November the NSW Minister for Ageing and Disability Services, the Hon Andrew Constance MP will attend the MND NSW Centre at Gladesville to launch the MND Aware online training for front line staff working with people living with motor neurone disease. This exciting new educational resource is currently being uploaded onto the MNDcare website.
There will also be a presentation on MND Aware at the Allied Professionals Forum to be held in conjunction with the International ALS/MND Symposium, Sydney on November 29.
Register for the Allied Professionals Forum (APF)
Time is running out to register for the main program of the 22nd International Symposium on ALS/MND (Sydney – November 30 – December 2, 2011) and the associated Allied Health Professionals Forum (APF), November 29.
At current exchange rates registration for the APF remains very reasonable for an international forum (approx. $140.00 - full day). Take advantage of this wonderful opportunity and register online now!
Registration cost will increase after November 11.
Update on National Disability Insurance Scheme (NDIS)
Advocacy for the NDIS has already achieved significant results. Recently, State and Territory governments agreed to deliver the foundational work for the National Disability Insurance Scheme by mid 2013 - a year earlier than the Productivity Commission recommended. In the lead up to Spread the Word Week – 27 November to 3 December -the Every Australian Counts campaign has organised an address at the National Press Club in Canberra on the 23rd of November 2011. Speakers include Peter Darch, Dr Rhonda Galbally & Dr Paul Brock AM.
Help spread the word and make a difference! If support grows and momentum builds the NDIS will be secured for all Australians.
MND Models of Care
As we know, according to best practice guidelines and the MNDcare philosophy; the varied, complex and unpredictable needs of people with MND are best managed by highly coordinated, responsive, multidisciplinary care. The number of potential agencies involved are many. Unfortunately, individual health areas may vary considerably in the resources/services available.
A priority for MND Australia is to lobby for a universal protocol for managing MND throughout Australia. In the meantime it can be of great benefit to formalise how MND is managed within your health area by establishing MND Models of Care or MND Care Pathways.
An example of a comprehensive MND Model of Care has recently been formalised by the members of the MND Clinic in South Australia. This Neuropalliative Rehabilitation Model demonstrates how an optimal range of services can work together in managing MND. The model is based on the Cochrane Review by Ng and Mathers.
Even if there is a limited range of local services within a particular area health service, a point of contact for people with MND and designated managing professionals can be formalised into a simplified model of care. If all facets of a multidisciplinary team are not available locally, appropriate professionals in other regions who have MND expertise, including established MND Clinics, can act as consultants to the core team.
Networks of MND Multidisciplinary Clinics and Services have the potential to enhance the clinical care and management of people living with MND – helping to to raise the profile of MND care and to influence change in practice within the health and community care sector.
An overview MND Multi/Inter Disciplinary Clinics and Services compiled by Carol Birks for MND Australia provides further information on the role of MND models of care as well as listing established services.
Examples of regional MND Models of Care in the UK can be viewed on the MND UK web site: http://www.mndassociation.org/go.rm?id=1775.
A Carer’s perspective
In his article A Patient’s Journey – Motor Neurone Disease published in the British Medical Journal (May 2011), Brian Sackett gives a perceptive insight into the emotional impact of caring for his wife Diane during their journey with MND. He also describes the importance of support from a mutidisciplinary team.
“The entire team became more than specialists in their own fields; they became great friends, making regular visits that we could rely upon. When members of the team linked up and made joint visits, these were of great benefit to Diane, as she could save her breath and energy by not having to repeat herself to each individual.”
In the same article consultant Mohammed Sakel also offers his thoughts about the role and responsibilities of the health professional team.
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