An astounding one in four Queenslanders are living with one or more neurological conditions, profoundly impacting their lives.
Recently separated, Belinda’s life changed in an instant when she found herself experiencing a seizure in front of her two teenage children.
“I can’t remember a lot of what happened, but the left side of my face dropped, and I couldn’t talk,” Belinda said of the terrifying experience.
“I just shook, and I wasn’t there.”
Four years later Belinda was finally diagnosed with front lobe epilepsy which is often triggered by high levels of stress, lack of sleep and heightened emotions.
The former schoolteacher was diagnosed with multiple sclerosis seven years earlier and now had to face living with two neurological conditions.
It’s an all-too-common story.
Neurological conditions are on the increase – both their early onset and prevalence.
They are one of top five causes of death and cost of disease in Australia, increasing a startling 86% over the past 20 years.
According to MS Qld, that means everyone will be affected by neuro in some way – whether it’s in the workplace, the family, the community or personally – now or in the future.
Belinda Sealey is living with two neurological conditions.
Multiple sclerosis (MS) is one of a wide range of neurological conditions, which include epilepsy, Parkinson’s disease, dementia, motor neurone disease (MND), stroke and acquired brain injury.
These conditions are often lifelong and affect mobility, speech, behaviour, mental health, cognition, chronic pain and greatly impact on quality of life, relationships and financial health.
“Everyone is quite aware of the individual conditions, but it is not until you group them that you realise how significant and alarmingly pervasive neuro is,” MS Queensland Chief Executive Officer David Curd said.
“It’s well over a million Queenslanders living with neuro – and that comes with an eye-watering price tag of $24 billion to the State every year.”
MS Queensland has been quietly supporting broader neuro conditions for more than 20 years, having identified that many of the support needs are very similar
“But with the number of Queenslanders we’re now talking about, we believe it’s time to get loud,” Mr Curd said.
“The baton we carry now is a leading support provider and advocate for people with neurological conditions in Queensland.
“A better understanding of neuro also benefits the MS community and we are much stronger together.”
While MS remains at the heart of their work, MS Queensland is on a mission to drive neuro-wellness in Queensland, collectively with partners and supporters so that people like Belinda get the support they need.
The opening of the first Neuro Wellness Hub in Brisbane earlier this year, takes that mission to a new level.
The Hub offers multi-disciplinary, holistic services including allied health, employment assistance, NDIS services and wellness initiatives to Queensland’s neuro community.
The Neuro Wellness Hub offers multi-disciplinary, holistic services.
Plans are underway to establish seven additional hubs across Queensland within the next two years including Brisbane’s northside, Gold Coast, Sunshine Coast, Springfield, Toowoomba, Rockhampton and Townsville.
MS Queensland Executive General Manager Customer Impact Sophie Graham said the hub was also providing a welcoming space for people to connect.
“Neurological conditions can really disconnect a person from their community, so human connection is what this hub is all about – connection with one another, connection with the right support and connection with our wider community,” Ms Graham said.
After being diagnosed, Belinda was overwhelmed and in denial. She was also very worried about what the impacts would be on her family’s future.
Over time, as she came to accept her diagnoses, she approached MS Queensland for help and was able to access employment support, NDIS access and assistance from specialist MS nurses.
“I felt so scared and alone. But then I wasn’t,” Belinda said.
“It’s really important to have people who believe in you and people who are understanding, that are not going to give up on you.”
Mr Curd said that was why ensuring there was adequate support in place was critical.
“Currently neuro is chronically underfunded and inadequately serviced,” he said
“With one in four Queenslanders already impacted, with that projected to increase, we know neuro is a ticking time bomb in Queensland.
“We can’t afford to ignore it any longer – the human and financial cost is too great. We urgently need Neuro Wellness Hubs across Queensland so we can stop neuro conditions from stealing the very best of people’s lives.”
Learn more at msqld.org.au
The human cost
- Neuro conditions break connection between the brain and body, and from the people and activities individuals love and enjoy.
- They impact individuals but also their family and friends. Caregivers often also experience poor health and mental health.
- The financial impact on families is significant, with direct medical expenses, loss of income and long-term caregiving needs.
- Neuro conditions lead to high levels of psychological distress, mental health and secondary health issues, as well as other neuro conditions, resulting in increased care needs and poorer outcomes.
How MS Qld’s Neuro Wellness Hubs help
- Neuro conditions share common symptoms and care needs, requiring integrated, responsive, multi-disciplinary treatment rather than disjointed, independent specialists.
- A safe and welcoming place that people and families can attend and meet others with similar conditions.
- Immediate access to information, services and support.
- Access to a skilled allied health team, the latest cutting-edge technology and emotional support.
- Provide connection, support and sense of community.
Source: Neuro Matters report, MS Queensland, Epilepsy Qld (October 2024)