Malta is still lacking a multiple sclerosis nurse – an important bridge between patient and neurologist that would improve the lives of people suffering from the life-changing chronic disease, according to their society.
MS sufferer Christine Montague underscored the importance of the role as a liaison between doctor and patient, saying that, ironically, the MS nurse programme had been launched at a conference in Malta but was never picked up on the island.
Such a nurse would be specialised in all problems related to MS patients and would be their first port of call. They would be able to discuss any issues and these would be referred to a neurologist, if necessary.
While one trained nurse would not be enough to cater for around 500 people registered as living with MS in Malta and Gozo – and the true number is likely higher as some cases are still undiagnosed – Montague believed it would be a “good start”.
Now the vice-president of the Multiple Sclerosis Society of Malta, she is focused on a patient-centred approach to the disease and the need to work “hand in hand”.
Neurologists are also keen on having a specialised nurse, she said, adding that they were busy people and could not be seen ad hoc, leaving patients in “a bit of a limbo” that could be stemmed by this role.
Patients need to keep in touch with their doctors about their medication and this is where the nurse would step in. “Simple Googling is not enough!”
Around 500 people [are] registered as living with MS in Malta and Gozo – and the true number is likely higher
MS occurs when the body’s immune system mistakenly attacks the protective covering that surrounds nerve fibres, affecting the brain and spinal cord. This damage disrupts the normal flow of electrical signals between the brain and the rest of the body, leading to various symptoms, such as fatigue, numbness, difficulty walking, vision and balance problems and muscle weakness.
With more than 2.9 million people worldwide affected, two-thirds being women, MS is the most common acquired chronic neurological disease in young adults, with an average age of diagnosis being around 32.
But Montague, 62, was diagnosed late in life, just 14 years ago. She is among the approximately 85 per cent of people with MS who have the relapsing-remitting form, where symptoms flare up for a while and then partially or completely disappear.
For years, Montague was undiagnosed and told she had depression. So, when she could put a name to her ailments, she was “one of the few people to say I was relieved”.
She did not tackle her condition immediately following her initial paralysis. But when she was hit by a second round, she realised this was “here to stay” and decided to take the bull by the horns, going on to even becoming a patient advocate.
MS is a life-changing disease – and, in Montague’s case, it meant not only slowing down but also stop working as an LSE.
“It was my choice. The school wanted to keep me on, and work around me, but I decided that, if I was going to have a good day, I was going to enjoy it!”
Nonetheless, she has kept up her hobby of antique restoration and has even “upgraded” to restoring a 15th century wooden house.
Montague’s positive approach means she continues to try and live life to the full – including planning a tandem jump out of a plane after ill health prevented her from doing this to celebrate her 60th birthday.
Such is her determination that she refused a permanent walking stick when she needed one, believing that she would “beat this”.
Now, through working together with the neurologist, she is on medication that suits her and she does not use the stick. “But, if I did, it would be bright pink and in your face!”
She is not saying life is perfect. But she is saying: “I am here!”
“It was emotional for me at around 48, let alone for a 19-year-old – sufferers are as young as that. Imagine the trauma of wanting to play football but finding no strength in your legs, especially if it is progressive MS, which happens fast and means ending up in a wheelchair.”
She is “trying to make some sense of this condition” and attends European Multiple Sclerosis Platform conferences and courses to keep abreast.
At her first meeting in Norway some 10 years ago, she was left impressed with the contrast between the “European attitude that faces and deals with the disease” and that of Maltese patients, who tend to “hide it”.
Montague recalls a patient turning up at that conference in a wheelchair, with a bright walking stick and balloons attached to it, while, in Malta, people tend to suffer in silence.
“They sweep it under the carpet, pretend it does not exist and do not tell their colleagues because they do not want pity.”
Montague has heard parents tell their daughters not to say they have MS for fear they would not find a boyfriend and get married, or blame their child’s chronic disease on unrelated drug use.
Not just about medication
As a fellow of EUPATI (the European Patients’ Academy on Therapeutic Innovation), Montague is widening her knowledge of medicine research development and legislation in bringing new drugs to the market.
From this year, the National Health Service provides access to the full range of disease-modifying therapies for MS, including those for highly active forms, enabling neurologists to tailor treatment plans to individual patients and helping to reduce disease activity.
“Having such comprehensive access marks a significant step forward in aligning local care with international best practice,” the Malta Association for Neurologists and Neurosurgeons said.
But MS is not just about medication, it underlined. “It can affect how people move, speak, work and go about their daily lives. That is why we rely on a strong multidisciplinary team, consisting of physiotherapists, occupational therapists, speech and language therapists and other specialists, who work together to support patients with everyday challenges.
“Community support also plays a vital role, and it is essential that care is well-coordinated and easy to access. This holistic approach truly makes a difference.
“We know there is still more to be done. Services need to expand, become better coordinated and reach more patients, especially those whose MS has significantly affected their daily lives,” the association acknowledged.
World MS Day aims to draw attention to the challenges faced by people living with MS, with the 2025 campaign, My MS Diagnosis, advocating for early, faster and more accurate diagnosis.
The exact cause of MS is still unknown but it is believed to involve a combination of genetic and environmental factors. While there is no cure as yet, medical treatments can help manage its symptoms, reduce the frequency of flare-ups and slow the progression of the disease.