HEROES OF THE HEALTH SERVICE:Consultant neurologist Prof Orla Hardiman has dedicated her working life to seeking answers and caring for Irish patients with Motor Neurone Disease (MND), a hugely debilitating, incurable illness. She has received many awards for her exceptional work, writes JUNE SHANNON
DESPITE HUGE advances in medicine, the cures for many diseases continue to elude the profession. But some doctors are unstinting in their search for answers for those suffering from devastating conditions.
Prof Orla Hardiman, consultant neurologist at Beaumont Hospital in Dublin, clinical professor of neurology at TCD, and Health Research Board (HRB) clinician scientist, is one such doctor. She has dedicated her career to seeking answers and caring for Irish patients with Motor Neurone Disease (MND).
MND is a hugely debilitating, incurable, neurological disease, which attacks the brain and spinal cord. The condition results in a progressive loss of voluntary action, which robs the sufferer of their body. Most people die of respiratory failure.
There are about 210 people living with MND in Ireland. One person is diagnosed every three days and 70 per cent will die within 1,000 days of their first symptom. The remaining 30 per cent can live much longer – up to eight, 10, or even more than 20 years in some cases. The peak age of onset is the mid-60s, however it has been diagnosed in people as young as 15.
“It is a horrible disease. There are no redeeming features to it at all,” Prof Hardiman says.
Asked what it is like to deliver such a devastating diagnosis she says: “It is horrible. If you don’t think it’s horrible you shouldn’t be in the business.”
“You are completely destroying the person’s life so it takes a lot of experience and a lot of support to be able to do it right, and I don’t always do it right . . . but we try and do it in a way that is compassionate and that engenders realistic hope.”
That “realistic hope” is the driving force behind Prof Hardiman’s research into MND.
“We understand a lot more about the disease than we used to, so there are loads of things that are positive about it and that is very important to impart as well.
“It is really important to be honest and straight with people in a compassionate way. Because if you are not honest, people can’t trust you, and if people can’t trust you, you are no good to them.
“I think helping is as much of a healing process as making the condition go away completely. Obviously that is an objective that we would have in the greater, longer scheme of things. If you focus on that as your primary raison d’être, that is not a very achievable position to have, nor does it make you a particularly good doctor. Recognising both the limitations of our ability to influence the course of the disease and recognising what we can do . . . is really important.”
Ireland is a world leader in MND research in areas including epidemiology, imaging, genetics and neuropsychology.
Prof Hardiman says she has been “very lucky” to have access to a wide range of experts in different fields here, which has facilitated the development of a broadly based multidisciplinary, clinical and research MND programme at Beaumont.
In 1994, together with the Irish Motor Neurone Disease Association (IMNDA), Prof Hardiman and colleagues established the Irish Register for MND at Beaumont Hospital. Today, it is is the longest continuously running register in the world.
With Irish and international colleagues, Prof Hardiman has been responsible for a number of genetic breakthroughs in the understanding of MND. Furthermore, the Department of Neurology at Beaumont in conjunction with the IMNDA was the first in the world to show that multidisciplinary care improves survival and life expectancy in MND.
A true patient champion, Prof Hardiman was instrumental in establishing the Neurological Alliance of Ireland (NAI) in 1998.
The NAI is a national umbrella organisation of voluntary groups and has been a pivotal force for improving neurological services in Ireland.
In 2004, Prof Hardiman received the first Palatucci Advocacy Leader of the Year Award from the American Academy of Neurology for her “tireless advocacy efforts on behalf of the neurology profession and patients” in Ireland. In 2009, the Academy awarded her the Sheila Essy Award for research.
In 2011, Prof Hardiman received the Forbes Norris Award from the International Alliance of ALS/MND, which recognises people who have shown exceptional care and compassion in the study and management of MND.
When Prof Hardiman was first appointed as a consultant neurologist in 1996, she was the 11th neurologist and second female consultant in the specialty to be appointed in Ireland.
At that time, a lack of any protected research time meant that she was forced to trade her academic career for a fulltime clinical post.
Now, thanks to the HRB clinician scientist programme, she can divide her time evenly between her two passions: research and patient care.
It took me 11 years to actually achieve that and that meant working really hard evenings and weekends to try to keep the academic programme going while at the same time doing a full clinical job. That has costs. There are things that you trade for that – you can’t do everything.”
She has therefore made it her mission to find a way to develop a career trajectory that will allow clinicians with an academic flair to do both.
If such a system is not developed, Prof Hardiman warns, Ireland risks losing its talented academic clinicians to other countries, such as the UK, which have these dual career structures in place.
“One of the goals I have set myself for the last part of my career is to try and change that. To try and . . . scope out a mechanism whereby we can make a career track for people that is suitable for the Irish need and that allows us to retain the best and the brightest here.And not have them emigrate out of the country which is what is happening here at the moment.”
