I had the pleasure of coordinating the May edition of the CareSearch Allied Health Hub (AHH) newsletter in which we chose to highlight Motor Neurone Disease (MND) for three reasons:

1. Allied health practitioners play a very important role in a multidisciplinary approach which improves quality of life, for both patient and family.
2. Palliative Care week and MND week both occur in May and it was an opportune time to highlight MND.
3. MND is entering the sphere of practice for more allied health practitioners and it has been brought to the public’s attention recently with fundraisers like “Freeze MND”.

The following Australian statistics taken from MND Australia shows the need for further education of all health practitioners in the management and treatment of MND. The AHH MND newsletter was just one part of the role CareSearch plays in this vital education.

• Each day two people die from, and 2 people are diagnosed with MND
• People with MND progressively lose the use of their limbs, ability to speak, swallow and breathe, whilst their mind and senses usually remain intact
• Average life expectancy is 2.5 years*
• More than 2,000 people live with MND (60% male and 40% female*)
• Mean time from onset to confirmation of diagnosis is 10 to 18 months*
• Approximately 58% of people with MND are under the age of 65*
• The total cost of MND was $2.37 billion in 2015 ($1.1 million per person)*
• For every person diagnosed with MND it is estimated that a further 14 members of their family and their friends will live with the effect of MND forever
  *Source: Deloitte Access Economics report Economic Analysis of MND in Australia

Although MND is a progressive neurological condition and is incurable, patients and families will benefit from treatment and education by a multidisciplinary allied health team.

The CareSearch AHH MND newsletter (264kb pdf) gives a very clear indication of the important role physiotherapists, occupational therapists, speech pathologists, dietitians, social workers, psychologists and music therapists play in assisting MND patients and families live with this disease. With more than 2000 people living with MND in Australia there is an increased need for the availability of allied health practitioners trained in MND management.

Those living with any life limiting disease, and in this instance MND, are very keen to remain independent, achieve their goals, live life to the full and are therefore very motivated to participate in rehabilitation. In many instances they request assistance, however in some cases, patients and families do not know of these benefits and struggle by themselves with little or no support. There is also a lack of understanding about the role of each allied health professional, both by medical / nursing professionals and in the general public. I believe this requires addressing on a political, educational and funding basis.

Often there are problems with either accessing allied health services, especially in the community, or once connected into a service, of obtaining the right equipment and/or funding to assist. In a report on MND services for Western Australia these difficulties are defined and discussed. Although written in 2008 it would be interesting to see if there has been any improvement.

As MND is a rapidly progressive disease it can be very challenging in many areas for the patient, family and the treating practitioner. Thus the availability of treatment for the psycho-social burden, is essential in assisting patients and families live with MND. These multiple and rapidly progressing losses and an increased dependency on others due to loss of physical function needs to be addressed by appropriately trained allied health.

Communication difficulties, additional costs to the family budget and financial strain of living with MND require assistance to bring some control and normality to the family.

One major concern regarding MND which requires correction, especially in the media, but also in medical and social interactions is the use of the expression “suffering from MND”. MND, as with other degenerative neurological conditions, does not condemn people to a life of “suffering”. Yes, they experience pain and distress and a decrease in physical capabilities but the overwhelming majority “live with MND”. It would be scary to be newly diagnosed and hear that you were going to “suffer with MND”. The dictionary (Dictionary.com) defines ‘suffering’ as “agony, torment, torture, pain and distress”. Is this what we want for people with MND? No I don’t think so, therefore we must all be very vigilant in our choice of words.

It is the role of the allied health practitioner to assist people with MND, to live life to the fullest and help decrease the pain and distress that might occur.

Pauline Cerdor, CareSearch Allied Health Advisor and Co-ordinator CareSearch AHH newsletter