Practical strategies to support function and help navigate uncertainty before and after specialist assessment…

It often takes several appointments, tests and specialist opinions to get a neurological diagnosis, and the wait can be an anxious and exhausting time for patients and families. During this period, GPs can support the clinical work-up, provide regular monitoring and coordinate referrals, helping people feel better informed as the picture gets clearer.

The first priorities are to recognise emergencies, understand the pattern and pace of symptoms, document examination findings and establish how the person is managing day to day.

Investigations should be staged and focused on likely diagnoses and reversible causes. Depending on the presentation, these may include:

• targeted pathology
• CT or MRI
• EEG
• nerve conduction studies or electromyography
• cardiac assessment for transient loss of consciousness
• early swallowing, respiratory or nutritional assessment

Emergency care is required for stroke-like symptoms, prolonged seizure, rapidly progressive weakness, respiratory or bulbar compromise, acute spinal cord or cauda equina features, sudden altered consciousness or other rapid deterioration.

When and who to refer patients to

Referral can—and often should—begin before the diagnosis is confirmed. Neurology referral is appropriate for progressive loss of function, suspected neuromuscular disease, a first seizure or uncontrolled epilepsy, movement disorder, unexplained focal deficit, complex headache or significant diagnostic uncertainty.

Support from allied health and rehabilitation services should be based on what the person needs right now. Physiotherapy, occupational therapy, speech pathology, dietetics, neuropsychology, continence, respiratory, falls, driving and vocational services can help maintain safety and independence while providing a clearer picture of changing function.

Support while patients wait

For someone facing a long wait for specialist review, the right support can offer reassurance, answer questions and help prevent crises or gaps in care. The Neurological Alliance Australia is a collective of not-for-profit peak bodies and national organisations that provide support or advocacy for people with neurological or neuro-muscular conditions.

In Western Australia, the Neurological Council of WA (NCWA) can provide support state-wide: NeuroCare for adults, and NeuroKids for children and adolescents. Community neurological nurses offer in-home or telehealth assessment, education and practical help with symptoms before, during and after diagnosis.

Neurological nurses can inform the patient’s GP about changes in mobility, falls, swallowing, communication, breathing, weight, medicines or day-to-day independence, so investigations or referrals can be reprioritised when needed. They can reinforce education, help patients prepare for specialist appointments, liaise with services and guide families through health, aged care and disability systems.

After diagnosis, NCWA nurses can help patients and families implement specialist recommendations by revisiting education, monitoring symptoms and function, supporting safe medicine use, identifying complications and connecting families with rehabilitation, equipment, communication, nutrition and community services.

Telehealth makes support more accessible for rural and remote patients, while a home visit may reveal needs or risks that are difficult to see in a clinic.

Condition-specific not-for-profit organisations (e.g. for people with motor neurone disease, epilepsy, multiple sclerosis, Parkinson’s disease etc) can be a helpful source of information, advocacy, practical resources, service links and peer connection—particularly after diagnosis. Hearing from others with lived experience can ease isolation and help families know what to ask. Some may accept earlier referrals when a condition is strongly suspected.

Across Australia, the government’s Disability Gateway helps people with disability and their families and carers find appropriate information, support and services.

Support for carers

Carers need care and recognition too. Record the primary carer, ask about their health, sleep, stress, work and financial pressures, and make a backup plan in case they become unwell or suddenly unavailable. Carer Gateway and Carers WA can offer counselling, coaching, practical assistance, respite and peer support.

With the patient’s consent, carers should receive clear guidance on responding to seizures, choking, falls, medicine problems and other likely events. They should also have a private opportunity to talk honestly about how they are coping.

Plan early for changing needs

Palliative care can be introduced whenever it may improve comfort, quality of life or decision-making. It can sit alongside investigation, disease-modifying treatment and rehabilitation. Early referral can support people living with progressive, life-limiting neurological disease who have complex symptoms, repeated crises, difficult choices or significant emotional, social or spiritual concerns.

Gentle, timely conversations about goals and future care allow patients to have a voice before communication or cognition changes. These discussions may include preferred place of care, substitute decision-making, and views about respiratory, nutrition and communication interventions.

A helpful referral describes when symptoms began and how they have changed, examination findings, functional changes, completed and pending investigations, medicines, risks while waiting, and communication or carer needs. Driving, workplace hazards, mental health, safeguarding, cultural/language needs, and access to NDIS or My Aged Care should also be considered.