Shining a light on caring for those with a neurological disease
Motor Neurone Disease Australia aims to raise awareness of the disease and the rights of patients to quality of life, and dignity in life and death as part of this week’s MND 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.
These neurological diseases progressively leave patients unable to use muscles in various parts of the body and in some cases, can lead to dementia.
There is no cure for MDN or MSA, but patients are assisted to live better for longer by teams of carers and health practitioners using disease management plans.
James Cook University researcher, Dr Robin Ray and community speech pathologist, Anne Kavanagh are currently conducting research with MND and MSA patients and their carers about what knowledge will prepare them for different phases of the disease and making arrangements for end of life.
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.”
JCU Media Liaison: Caroline Kaurila, tel: (07) 4781 4586 or 0437 028 175
Issued May 8, 2014