Wednesday, January 25, 2023

Aunt of man who died from MND calls for better care for people with the disease

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Christopher Armstrong, 31, died just before Christmas after receiving his devastating diagnosis at the age of just 29.

Christopher was a vivacious young man living and teaching in Dubai with his then-fiancée Laura when he first developed symptoms.

His GP in Northern Ireland told him he was facing a three to five year waiting list for a neurologist appointment, so he traveled to Glasgow for the diagnosis.

His aunt Deborah McFarlane spoke to UTV about his experience with the disease to highlight what she thinks are gaps in care here.

“The neurologist basically did the test and then told him you have MND … it usually kills people within two to five years, it will kill you.”

It comes as a new report is released by the Motor Neurone Disease Association.

It aims to raise awareness of what the charity describes as a “lack of care and other available services for people with MND in Northern Ireland”.

Around 140 people in Northern Ireland are living with MND.

It is a fatal, rapidly progressive disease that affects the brain and spinal cord.

It can affect a person’s ability to walk, talk, eat, and eventually breathe.

A third of people die within a year of diagnosis and half within two years.

There is no effective treatment and no cure.

Patrick Malone, Senior Policy and Public Affairs Adviser NI to the MND Association said: “This report is a very stark reminder of the multitude of challenges and difficulties that sadly people with MND in Northern Ireland face every day.

“We look forward to working with all of our representatives to implement the recommendations in this report to seek to improve the quality of life for people with MND in NI.”

Deborah described the symptoms her nephew experienced when he became ill very quickly.

“It was like a monster taking over his body because he wakes up every day and doesn’t know what’s going to get worse. It started with not being able to clap their hands.”

Christopher eventually became paralyzed and struggled to breathe, he died on December 13th and is survived by his fiancé and unborn child, his mother Angela and all his family and friends.

In a statement, the Department of Health said: “The Department recognizes that neurological services in NI are under significant pressure, including those available to people diagnosed with MND.

“In this context, the department is conducting a regional review of neurological services, which has the task of identifying the optimal configuration of neurological services for the next 10 to 15 years.

“A final report is expected to be completed in March 2023, which will include an assessment of staffing pressures.

“The ability to push additional services or reconfigurations in this area depends on both the decision-making ability of the department and the availability of resources.”

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