Paediatric Hypertonicity and movement disorders

PAEDIATRIC

  • If any of the following are present or suspected, please refer the patient to the emergency department (via ambulance if necessary) or follow local emergency care protocols or seek emergent medical advice if in a remote region.

    • Status dystonicus
    • New or increased hypertonicity associated with acute neurological decline
    • Suspected adverse event associated with intrathecal baclofen or deep brain stimulation use
    • Refer to HealthPathways for assessment and management recommendations.
    • Adolescents and Young Adults (AYA) Considerations (16–18 years):
      • Given the diversity within this age group, inclusion in adult rehabilitation services should be based on functional context rather than age alone. AYAs aged 16–18 who are engaged in adult lifestyles or activities (e.g. employment, apprenticeships) are best suited to adult rehabilitation pathways.
      • Eighteen-year-olds in their final year of school should not be automatically excluded from adult rehabilitation services, as input from paediatric rehabilitation (e.g. QPRS) would likely be short-term due to limited time remaining at school. In exceptional cases, QPRS may assist with outpatient rehabilitation for 18-year-olds with brain or spinal cord injuries where goals are specifically related to return-to-school outcomes. This is only done via direct referral from adult rehabilitation specialists, who retain primary responsibility for ongoing rehabilitation.

    Request for advice

    • GPs may use the Request for Advice (RFA) pathway when patients present with, stable conditions that does not meet criteria for urgent referral. This allows specialist input while supporting ongoing management in primary care and avoiding unnecessary waitlisting.
Minimum Referral Criteria
Category 1
(appointment within 30 calendar days)
  • Patient at risk of imminent hospital presentation.
  • Hypertonicity causing pain that interrupts sleep and / or daily activities.
  • Hypertonicity affecting positioning, hygiene, or skin integrity with imminent risk of skin break down or infection
  • Patient referred from other centre with intrathecal baclofen (ITB) of deep brain stimulation (DBS) where refill of ITB pump or programming changes to DBS are anticipated within 30 days.

    • NB: For adolescents aged 16–18 who are engaged in adult roles (e.g. apprenticeships or employment), referral to adult rehabilitation services may be more appropriate, and referral pathways should be considered accordingly.
Category 2
(appointment within 90 calendar days)
  • Hypertonicity impacting functioning, comfort or ease of care giving where delay in diagnosis, MDT review or treatment beyond 90 days may impact child’s developmental trajectory or care needs
  • Babies and young children where diagnostic clarification is required to seek appropriate early intervention
  • Decline in mobility or performance of activities of daily living due to hypertonicity or movement disorder
  • Transitioning patients from other HHSD currently being treated with intrathecal baclofen or deep brain stimulation
  • Transitioning patients from other HHSD where hypertonicity treatment has been recommended by a rehabilitation specialist for within 3 months
Category 3
(appointment within 365 calendar days)
  • Stable chronic hypertonicity with minimal intervention requirements likely within 3 months
  • Transitioning patients from other HHSD where treatment within 3 months is not required.

Please insert the below information and minimum referral criteria into referral

1. Reason for request Indicate on the referral

  • To establish a diagnosis
  • For treatment or intervention
  • For advice and management
  • For specialist to take over management
  • Reassurance for GP/second opinion
  • For a specified test/investigation the GP can't order, or the patient can't afford or access
  • Reassurance for the patient/family
  • For other reason (e.g. rapidly accelerating disease progression)
  • Clinical judgement indicates a referral for specialist review is necessary

2. Essential referral information Referral will be returned without this

  • Diagnosis, MRI brain findings and results of other investigations (where available)
  • Out of home care / Department of Child Safety involvement (Triage Cat 1)

3. Additional referral information Useful for processing the referral

  • Goals for treatment
  • Relevant medical history: Include any past or ongoing conditions
  • Current medications: List of patient’s medications with doses
  • Current social situation: Detail the patient’s living arrangements, functional status, and any support services in place (e.g. NDIS participation)
  • Allied Health Services: Note any current Allied Health involvement and services provided
  • Hypertonicity-related issues: Describe affected limbs, pain levels, hygiene concerns, skin breakdown, and passive care needs. Include previous management of hypertonicity (e.g., treatments, interventions)

4. Request

    • Patient's demographic details

    • Full name (including aliases)
    • Date of birth
    • Residential and postal address
    • Telephone contact number/s – home, mobile and alternative
    • Medicare number (where eligible)
    • Name of the parent or caregiver (if appropriate)
    • Preferred language and interpreter requirements
    • Identifies as Aboriginal and/or Torres Strait Islander

      • Referring practitioner details

    • Full name
    • Full address
    • Contact details – telephone, fax, email
    • Provider number
    • Date of referral
    • Signature

      • Relevant clinical information about the condition

    • Presenting symptoms (evolution and duration)
    • Physical findings
    • Details of previous treatment (including systemic and topical medications prescribed) including the course and outcome of the treatment
    • Body mass index (BMI)
    • Details of any associated medical conditions which may affect the condition or its treatment (e.g. diabetes), noting these must be stable and controlled prior to referral
    • Current medications and dosages
    • Drug allergies
    • Alcohol, tobacco and other drugs use

      • Reason for request

    • To establish a diagnosis
    • For treatment or intervention
    • For advice and management
    • For specialist to take over management
    • Reassurance for GP/second opinion
    • For a specified test/investigation the GP can't order, or the patient can't afford or access
    • Reassurance for the patient/family
    • For other reason (e.g. rapidly accelerating disease progression)
    • Clinical judgement indicates a referral for specialist review is necessary

      • Clinical modifiers

    • Impact on employment
    • Impact on education
    • Impact on home
    • Impact on activities of daily living
    • Impact on ability to care for others
    • Impact on personal frailty or safety
    • Identifies as Aboriginal and/or Torres Strait Islander

      • Other relevant information

    • Willingness to have surgery (where surgery is a likely intervention)
    • Choice to be treated as a public or private patient
    • Compensable status (e.g. DVA, Work Cover, Motor Vehicle Insurance, etc.)

  • If any of the following are present or suspected, please refer the patient to the emergency department (via ambulance if necessary) or follow local emergency care protocols or seek emergent medical advice if in a remote region.

    • Please note that where appropriate and where available, the referral may be streamed to an associated public allied health and/or nursing service.  Access to some specific services may include initial assessment and management by associated public allied health and/or nursing, which may either facilitate or negate the need to see the public medical specialist.
    • A change in patient circumstance (such as condition deteriorating or becoming pregnant) may affect the urgency categorisation and should be communicated as soon as possible.
    • Please indicate in the referral if the patient is unable to access mandatory tests or investigations as they incur a cost or are unavailable locally.

Last updated: 5 May 2026

© State of Queensland (Queensland Health) 2023

Except as permitted under the Copyright Act 1968, no part of this work may be reproduced, communicated or adapted without permission from Queensland Health. To request permission email ip_officer@health.qld.gov.au1.