Motor Neurone Disease Clinical Pathways and Referral Network

Presentation of Symptoms
Assessment of Symptoms
MND Positive
MND Clinic
Palliative Care
Palliative Care Locations
Bereavement Support

Positive diagnosis of Motor Neurone Disease.

Sometimes, when people are told there is no effective curative treatment for MND, they interpret this as meaning that nothing can be done. Some will struggle on without asking for advice and treatment for symptoms, which could alleviate discomfort. They should be encouraged to talk about the symptoms they have and the potential treatments and therapies available.

It is important they have suitable support at this stage, including a point of contact to return to with questions and access to appropriate information. This could be you (their GP) or another provider.

When someone is diagnosed with MND they may take time to adjust and come back with questions some time after.

John Smith

MND Clinic and other providers of care and social support

Following the diagnosis of MND, the client will likely continue to receive support, advice, and care from the MND Clinic Specialist Nurse. The nurse provides support in the following ways:

  • Offers advice and information about MND
  • Review symptoms on a regular basis
  • Advise on symptom management
  • Liaise with you (GP) and the consultant regarding treatments and medications
  • Liaise with other healthcare professionals who may be able to help you
  • Coordinate the patient’s health care

Along with the MND Clinic, support is also available from other health professionals, specialists, and providers including:

  • Motor Neurone Disease Association of South Australia
  • Physiotherapists
  • Occupational therapists
  • Speech and language therapists
  • Dieticians
  • Specialist care clinics including sleep, speech, gastroenterology, and respiratory
  • Palliative care

Key Actions for GP's

Prompt referral for diagnosis – use the Diagnostic Tool to recognise early signs of MND in order to refer to neurology in a timely manner.

Using a person-centred approach ascertain the physical, social, emotional and spiritual needs of the person with MND and their carers at each appointment.  Refer to the appropriate specialist teams as necessary.

Monitor and assess symptoms, including signs of: - 

  • Respiratory involvement (early signs should trigger referral to the specialist respiratory therapist)
  • Cognitive change (this has implications for decision making and future management) 
  • In collaboration with consultants in neurology and palliative care, initiate appropriate management and treatment, including anticipatory symptomatic interventions. 
  • Issue repeat prescriptions if the person with MND is prescribed Riluzole by their neurologist: a shared-care protocol should be agreed. 
  • Promote early referral for the person with MND to the local palliative care service 
  • Encourage the person with MND to consider making an Advance Care Directive.