Motor Neurone Disease Week Focusses on Quality of Life

By Petrina Smith
Thursday, 08 May, 2014

Motor Neurone Disease Australia is raising awareness of the rights of patients to dignity in life and death as part of Motor Neurone Disease Week (May 4 to 10).

People living with MND or Multiple Systems Atrophy (MSA) live with the uncertainty that today might be the day their motor skills fail, leaving them unable to use their hands, walk, or speak effectively. Accessing the right care, in the right place, at the right time should not be another hurdle.

During Motor Neurone Disease Week the association is promoting the five rights petition as a powerful advocacy tool to defend the rights of all Australians living with MND.

The five rights are:

1. People with MND have the right to an early diagnosis and information

2. People with MND have the right to access quality care and treatments

3. People with MND have the right to be treated as individuals and with dignity and respect

4. People with MND have the right to maximise their quality of life

5. Carers of people with MND have the right to be valued, respected, listened to and well-supported.

In a bid to provide patients and carers with the knowledge that will prepare them for different phases of the disease James Cook University researcher, Dr Robin Ray and community speech pathologist, Anne Kavanagh are conducting research with MND and MSA patients.

Dr Ray said patients and carers are invited to be interviewed and complete a questionnaire, which will take approximately 45 minutes in total.
“This research is going to tell us what carers and the people they look after want from healthcare practitioners when preparing for the different stages of these diseases,” Dr Ray said.
“Sometimes it can be overwhelming for the patient and carers to think about the next stage or planning for end of life. They may feel uncomfortable broaching the subject with their healthcare team.
“This study aims to find out what patients and carers think is essential for them to know, increasing their confidence when they’re in the doctor’s surgery, with the community nurse, or any other healthcare practitioner.”
Dr Ray said the findings would be shared with healthcare practitioners so they can ensure their statements and advice are relevant for patients with these particular diseases.
Participation in the study is entirely voluntary and responses will be anonymous in any research publications.
“It’s particularly timely for us to be recruiting for this study during MND Week as it’s a way for patients and carers to add their voices to strengthen policy development around healthcare for neurological diseases,” Dr Ray said.
“All people living with MND or MSA are entitled to the same rights to quality of life as anyone else, and by doing this research we hope we will contribute to positive healthcare outcomes for current and future patients and carers.”
For further information about the study or to participate, please contact Dr Robin Ray on (07) 4781 4474 or robin.ray@jcu.edu.au or Anne Kavanagh at anne.kavanagh@health.qld.gov.au