Belfast Telegraph

Speedier testing for killer MND hailed by family of man who waited two years for diagnosis

By Victoria O'Hara

The daughter of a man who died from motor neurone disease (MND) has welcomed steps taken to speed up the diagnosis for patients who may have the "cruel and devastating" condition in Northern Ireland.

Arnold Doherty from the Waterside area of Co Londonderry had to wait almost two years to be finally told he had the debilitating condition in 2012.

Sadly, within a year-and-a-half Mr Doherty lost his battle with the disease aged 69 in April this year.

MND is hard to detect and half of people diagnosed die within 14 months of being told they have the disease, so a quick and accurate diagnosis is vital. It is a muscle-wasting condition that robs people of the ability to walk, talk, eat and finally breathe – and there is no known cause or cure.

Jennifer Maloney says her father's experience in a delay in diagnosis has led to a positive change in the Belfast Trust.

A new fast-track system has now been introduced by the trust to provide better diagnostic care for people who might have the condition.

The trust, which provides the tests, has agreed to reserve two neurophysiology appointments every week for people suspected of having MND. There are 120 people living with MND at any time in Northern Ireland.

The Motor Neurone Disease Association (MNDA), which met with the trust to raise concerns over delays, said it was a "significant step".

Jennifer, a volunteer with the association, explained: "I lost my daddy to motor neurone disease on April 18 this year – he was only officially diagnosed with this brutal and cruel disease on August 18, 2012.

"There's nothing as horrific as being told that your daddy is going to die of a rare and incurable disease, particularly as it took almost two years for diagnosis.

"And the mental anguish for anyone waiting on a diagnosis of a disease is bad enough – but when that disease is terminal and life-prolonging drugs are the only option, that is torturous."

Jennifer said the family became concerned four years ago.

"He started having what my family now realise were classic MND symptoms in June 2010 – he was dragging his foot as he walked," she said.

"During this time he was given everything from acupuncture to bone density scans, and it was only in March 2012 that he was referred to see a neurologist.

"I will never forget the stress and strain my family, and particularly my parents, were under as my daddy was passed from hospital to hospital, all the time not knowing what was wrong."

Jennifer said it was vital a quick diagnosis process was in place and hoped other health trusts followed suit.

Alice Fuller, campaigns and development manager at the MNDA, said the fast-track approach will make a "significant difference" to people with the killer disease.

"A diagnosis of MND is devastating, but this process unlocks access to vital palliative care and occupational therapy and advice – crucial services," Ms Fuller explained.

Dr John Craig, consultant neurologist and clinical director for neurosciences in the Belfast Trust, said: "This positive move will permit more rapid access to available treatments and support services."

For more information on the condition, visit www.mndani.com.

Factfile

  • MND is a muscle-wasting condition that robs people of the ability to walk, talk, eat and finally breathe. There is no known cause or cure.
  • MND is hard to detect and half of people diagnosed die within 14 months of being told they have the disease.
  • Because of the rapid progression of the disease, a quick and accurate diagnosis is vital.
  • There are 120 people living with MND at any time in Northern Ireland and 5,000 in total throughout the UK.

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