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Delivering the diagnosis of MND never gets easier

Posted 2/05/2016 9:00:00AM by William Huynh

Dr William Huynh describes his experience with motor neurone disease and hopes that, with increased research funding and public awareness, MND will become a National Health Priority.


I am a consultant neurologist, clinical neurophysiologist and member of the ForeFront Clinic health professional team at the Brain and Mind Centre. This clinic provides multidisciplinary assessment, care plans and ongoing support for people diagnosed with frontotemporal dementia and motor neurodegeneration syndromes that primarily includes motor neurone disease (MND). MND is a rare disease with a world-wide prevalence of approximately 4-6 per 100,000 people, and yet at this specialised quaternary referral centre, we see on average 6-10 patients with MND per clinic.  


Working as part of the Forefront MND Clinic team usually involves delivering the diagnosis of MND to patients and their family and loved ones fairly frequently. The process never gets easier although you learn to get better at doing it. There are almost always tears in the consulting room.

The dreaded questions that are frequently asked by patients and their family are “how did I get it?”, “is there treatment?”, “how long do I have?” and “will I pass it on to my children?”.  There are no good answers to these questions and this really reflects the poor understanding we currently have for this devastating disease which carries a grave prognosis with a median survival of around 2-3 years.

I feel that the best approach for delivering a diagnosis of MND is honesty, empathy and opportunity for patients and their family to ask questions. This will usually mean that ample time is allowed for, such that there will be no “rushed encounters”.


Working with people living with MND has reinforced to me the concept of quality of life, and the need to assist patients with MND to achieve an appreciable level of this, especially when there is no cure and effective treatment. It also emphasises the critical role of a multidisciplinary approach in their management when living and dying with the condition necessitates a reasonable degree of comfort and dignity. In addition, working with patients with MND that carries such a poor prognosis and no effective treatment also raises alarm bells that we desperately need more research efforts directed to this tragic disease.


When managing motor neurone disease, regular reviews and follow-ups with sufficient time allocated to these are of paramount importance. At the Forefront Clinic, each patient will usually spend a minimum of 2 hours during each follow-up where they will be assessed not only for ongoing medical issues but there is a strong focus on a  multidisciplinary model of management that will involve assessment of their social and financial situation, and enlisting the services from a range of medical and allied health professionals such as respiratory and rehabilitation physicians, dietitians, speech pathologists, physiotherapists, occupational therapists and social workers and importantly the palliative care team.

Referral to social/support groups or organisations such as MND Australia will allow patients a forum where they will be able to obtain more education and information from credible sources about MND as well as to meet other patients and their carers to share their experiences. More often, this will empower patients to take a more active role and help them feel more involved and in control of their condition.

Currently, there is a desperate need for effective therapies in the management of MND. In order to achieve this, more research is required to further understand the exact mechanisms involved in the pathogenesis of this condition before disease-modifying treatment can be developed and subsequently translated into the clinical setting. There will need to be an increase in public awareness for this devastating disease and to make MND a National Health Priority.


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Dr William Huynh
Consultant Neurologist and Clinical Neurophysiologist
Forefront Clinic, Brain and Mind Centre, University of Sydney, Camperdown
Prince of Wales Hospital, Randwick
Southern Neurology, Kogarah  
Conjoint Senior Lecturer, University of NSW








 


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