Do neurological conditions have a care pathway or is it a road to nowhere, asks Neurological Council of WA CEO Etta Palumbo.
If you had to choose between a neurological disorder or cancer, which would you choose?
Both are increasing prevalent and burdensome, though one is much easier to navigate through the health system than the other. Cancer often comes with a clear-cut diagnosis, encouraging research and statistics offering hope for recovery, a well-worn and effective care pathway and well-funded wraparound physical and mental health services.
The neurological journey is typically stagnated, frustrating, lonely and sometimes terrifying. With over 600 – mostly rare – disorders of the brain, spinal cord and nervous system, each affecting sufferers in widely varying ways, neurological conditions are comparatively complex, far less understood and more difficult to diagnose, traverse and treat.
Conditions can be:
- Episodic or recurrent, such as migraine and epilepsy
- Stable with changing needs, such as cerebral palsy, fibromyalgia and Tourette syndrome
- Progressive and incurable, such as dementia, brain or spinal tumour, Parkinson’s and motor neurone disease
- Sudden onset stemming from an isolated neurological incident, such as meningitis, stroke or other brain or spinal cord traumatic injury.
Neurological conditions carry a significant burden. In 2017, 10.9 million Australians were living with a neurological disorder, causing 33,000 deaths and 608,000 Disability Adjusted Life Years per annum, at a cost of $30.5 billion a year. The numbers are staggering, yet neurology continues to be a neglected specialty and poor investment in neurological health is failing to meet the needs of this growing patient group.
New to my role as CEO of the Neurological Council, the service gaps and health care navigation difficulties are clearly visible. Our Neurocare community neurological nurses navigate these challenges, roadblocks and dead ends when supporting patients to find:
- Lack of neurological specialists resulting in long appointment wait times
- Lack of local accessibility requiring most patients to travel to metro hospitals and clinics
- Lack of ‘one stop shop’ hub or online information, education or service directory
- Debilitating neurological symptoms not treated because of ‘unrecognised conditions’ such as functional neurological disorder, Lyme disease and post-COVID neurological syndrome
- Availability and affordability of basic home care services due to worker shortages, lack of regional providers and inflated NDIS and My Aged Care (MAC) pricing
- Affordability of necessary allied health therapies including neuro-nursing, neuropsychology, exercise physiology, physiotherapy, occupational therapy, speech pathology and social work, with inflated NDIS and MAC pricing and ‘token’ interventions
- NDIS decision makers routinely rejecting neurologist and functional capacity reports
- No NDIS for over 65s, MAC means tested and capped at $56,000, and those in residential aged care deemed not “living in the community”
or “double dipping” if they need specialised
disability care - WA neurological not-for-profits struggling to deliver sustainable services, supplemented by patchy, disease specific support groups that rely on donations and volunteers, who are themselves often carers or sufferers of a condition.
With limited options, patients and carers shoulder most of the burden, typically spending only a few hours each year in contact with clinicians and trying to self-manage their symptoms or decline the rest of the time, until a health crisis.
With pressure on our hospital system, we must invest in a co-designed, sector-wide approach to effectively manage neurological conditions. Patients need funded or affordable services at varying levels of intensity, which they can access according to their needs and disease progression.
Pathways need to range from self-care, community interventions with specialist input, through to complex and rapid access emergency care.
To improve the neurological patient’s experience and outcomes and liberate scarce health resources, we need a model of care that is:
- Person-centred with a written care plan built around the individual’s needs, priorities and wishes for managing their symptoms or condition
- Cognisant of psychological and cognitive impacts and concurrently supporting mental well-being
- Proactive with educational, preventive, maintenance, and restorative components
- Community-based delivered near to the patient, in the community or at home
- Multi-agency and multi-sector with a unified, integrated, and well-coordinated approach, and timely and effective interagency, GP and patient communication and movement through care pathways
- Utilising and training GPs and community neuro-nurses to support patient pre-screening, assessment administration, care plan implementation and support, and health monitoring and maintenance between appointments
- Practical and accessible including a clinically trained general neurological helpline, community neurological nursing and allied health non-emergency response team and respite options for all ages
- Embracing new technology to digitise information, support, assessments, and data collection; connect a multidisciplinary care team and use smart devices to monitor and drive timely care according to needs
- Facilitating access to disability funding for people with neurological disabilities, regardless of age with ringfenced packages for rapidly progressing and sudden onset conditions to prevent default premature entry into residential care.
In an ageing society where neurological conditions dramatically increase with age, if not now, when?