Child rehabilitation services in Hunter New England

A brain injury can be devastating, for the person affected, their family and their friends. Brain injuries can affect how a child moves, speaks, thinks, and acts. An acquired brain injury can impact one area, multiple areas or all areas of the brain. Some changes may be temporary. Some may be permanent.

The Paediatric Brain Injury Rehabilitation Team (PBIRT) aims to provide assessment, therapy, education and support for children and families throughout their childhood until they leave school.

There are many different areas of the brain and each part is responsible for a specific role:

• frontal lobe - planning, self-control, initiation, attention, and emotion
• parietal lobe - touch, pain, temperature, reading and writing, attention to detail
• temporal lobe - hearing, memory, learning, mood, and vision
• occipital lobe - vision, interpreting shapes, colours
• cerebellum - balance, speech
• brain stem - basic life functions, control of movement.

Accidents, illnesses and infections can cause damage to the brain and lead to an Acquired Brain Injury. A brain injury occurs after birth and is not related to developmental disability, degenerative disease or congenital disorder.

An Acquired Brain Injury can occur from either a Non-Traumatic Brain Injury or Traumatic Brain Injury.

Traumatic Brain Injury (TBI)

A traumatic head injury most often occurs when there has been an unexpected force on the head or body which causes the brain to move quickly inside the skull. These forces cause the brain to be hit, bruised, stretched, torn, penetrated, bruised or become swollen. These injuries cause bleeding and result in disruption of blood flow or blood oxygen getting to certain areas of the brain.

Children with a brain injury can also have secondary injuries from further bleeding, increased pressure in the skull and prolonged lack of oxygen to the cells.

Typically, Traumatic Brain Injuries occur from:

• car accidents
• motorbike accidents
• boat and bike accidents
• assault
• falls
• sporting accidents
• domestic violence.

Non-Traumatic Brain Injury

There are a range of different causes of non-traumatic illnesses or injuries that can lead to an Acquired Brain Injury:

• infections and diseases
• meningitis
• encephalitis
• brain abscess
• hydrocephalus
• brain tumours and brain cancer
• stoke.

Hypoxic Brain Injury

• near drowning
• poisoning
• aneurysm
• anoxia (any event where the brain does not receive oxygen)
• hypoxia (any event where there is decreased oxygen to the brain).

Computed Tomography

A Computed Tomography (CT) scan is a machine which uses a series of x-rays of the head. CTs are useful for seeing fresh blood after an injury and are often the first scan a doctor will order.

MRI

Magnetic Resonance Imaging (MRI) scans use magnetic fields and have a higher degree of resolution than a CT. MRI’s are better at detecting the remnants of old blood, or damaged but intact nerve tissue. They are often ordered well after the injury has occurred.

Sedation for CT or MRI

For medical scans to be successful they require a patient to be very still. An MRI can take up to 30 min for some images. Younger children and patients who are not able to stay still will need to have their medical imaging done whilst they are sedated.

MRI under sedation requires coordination between the radiology department, anesthetics and your treatment team. Your child or young person will often receive gas via a mask whilst you are cuddling them and will then be looked after by the team until the scan is complete and your child returns to the recovery unit. Once your child begins to wake, you will be called and will be able to be at their bedside.

Intracranial Pressure Monitoring

After a severe traumatic head injury, the pressure inside the skull can increase from increased bleeding or swelling. If swelling or bleeding happens in the skull, the skull can't increase in size and the pressure inside rises. Intracranial pressure (ICP) monitoring can be used in the PICU. Medical teams can measure ICP by placing a small tube through the skull into the fluid-filled part of the brain called the ventricle. This gives the PICU team and Neurosurgical team an exact measurement of ICP and helps them care for your child or young person.

After a traumatic brain injury, it is common to suffer from Post Traumatic Amnesia (PTA).

PTA is the amount of time after a head injury when temporary changes to the level of consciousness occur. The child or young person can become temporarily confused, disorientated and have difficulty remembering new information.

How we measure it

In children 7 years and older, in the first 24 hours after injury, PTA can be measured using the Abbreviated Western Post Traumatic Amnesia assessment (AWPTAS).

If the AWPTAS test is passed, the patient is cleared of any further testing. Passing this test means the patient has likely experienced a mild Traumatic Brain Injury (mTBI) or concussion. If the patient does not pass their AWPTAS, then formal PTA testing should happen. Formal PTA testing is once a day and requires the patient to recall 12 names or objects. A patient must score 12 out of 12 for 3 days in a row to pass this assessment. The test is administered by an Occupational Therapist or Registered Nurse.

Why we measure it

The PBIRT team use PTA scores, imaging results, and recovery factors to help understand how serious the injury is.

The PTA assessment is needed to apply for motor vehicle insurance schemes. These includes CTP insurance or Lifetime Care and Support through iCare. The Lifetime Care and Support Scheme pays for treatment, rehabilitation and care for people who have been severely injured in a motor vehicle accident in NSW. PTA duration is an indicator of how severe the brain injury is.

Children under 7 years

For children 6 years of age and younger, it is difficult to test PTA. The team will use informal functional assessments and clinical judgement to assess PTA length and the severity of the injury.

GCS

The Glasgow Coma Scale (GCS) is the most common scale used to measure the depth and duration of coma and level of consciousness. GCS measures the eye, verbal and motor responses of a patient. Each of these areas are scored (out of 5) and when combined measures the patient’s severity of coma. From deep coma (score of 3) up to fully awake and responsive (score of 15). You can find out more at Synapse - Australia's Brain Injury Organisation.

John Hunter Children's Hospital cares for children and young people who are unwell following their injury or illness. This may be in the Paediatric Intensive Care Unit if they are very unwell. Once your child is ready, they will be transferred to one of the children’s wards and will likely be referred to the Paediatric Brain Injury Rehabilitation Team (PBIRT).

Paediatric Intensive Care Unit (PICU)

The PICU provides intensive care services to critically ill, children and young people across Northern NSW. The PICU is a dedicated 8-bed unit, with 6 intensive care rooms and 2 isolation rooms.

This highly specialised unit is staffed by paediatric intensivists and nursing staff trained in paediatric intensive care, who deliver services to children and young people with a wide range of medical and surgical conditions and to those who have sustained a major trauma, including brain injury.

Doctors from across the Children’s Hospital, along with Allied Health staff will also contribute to the care of children and young people admitted to the PICU.

Ward J1: Paediatric Surgery or Oncology

Ward J1 cares for up to 19 children and young people aged 0 to 18 years. Ward J1 cares for children receiving surgical care including: 

• Ear Nose and Throat (ENT)
• general surgery
• gastrointestinal surgery
• urology
• orthopaedics. 

Ward J1 also provides specialist treatment for children and young people with all forms of childhood cancer, including solid tumours and blood cancers. The ward has 2 rooms each with 4 beds and 11 single rooms.

Ward H1: Paediatric Medical

Ward H1 is a 24 bed General Medical unit caring for patients aged from birth to 18 years old who need care from many different specialties. Specialties include: 

• general medicine
• respiratory
• neurology
• endocrine
• gastroenterology
• infectious diseases
• Paediatric Brain Injury Rehabilitation (PBIR).

Ward J2: Adolescent Unit or Day Stay Unit

Ward J2A is a 12-bed ward for young people over the age of 12 years. Patients receive care from a wide range of surgical and medical conditions. Ward J2A provides a safe and friendly environment for adolescent patients and their families, which is focused on meeting their specialised needs.

If you are a medical professional and want to make a referral to the Paediatric Brain Injury Team, you will need to confirm your patient’s eligibility, does your patient:

• have a diagnosis of an Acquired Brain Injury which happened after birth
• have an identified need for a multidisciplinary assessment of function
• live within the northern child health network
• need a multidisciplinary assessment, medical and therapeutic interventions (not a referral for a specific discipline or maintenance therapy)
• is aged 0 to 16 years.

New referrals for children aged 16 to 18 years will be reviewed on an individual case to decide allocation to paediatric or adult services.

To make a referral healthcare providers can complete a referral and fax to: (02) 4923 6517.

For discussion of a specific patient call John Hunter Children’s Hospital (02) 4921 3000 and ask to speak with the PBIRT Clinical Nurse Consultant.

When your child is admitted to the hospital they will be cared for by our medical or surgical team. When your child is ready for rehabilitation the team will then refer your child to the Paediatric Brain Injury Rehabilitation Team (PBIRT).

Depending on the level and type of injury, your child may remain with their treating team. These teams may be from the:

• trauma service
• Intensive Care Unit
• surgical team
• respiratory team
• orthopaedic team
• oncology teams.

The PBIRT team meets with you to discuss progress, set goals for the week and provide discharge planning support. 

Our inpatient team includes health professionals from several disciplines. These include:

• rehabilitation doctors
• speech therapy
• occupational therapy
• clinical nurse consultants
• social work
• physiotherapists
• child life therapy
• school teachers
• clinical psychology
• art therapy
• music therapy
• neuropsychology
• dietician.

Following a brain injury, your team will make sure your child is medically stable and ready for rehabilitation. Some of the common issues include:

Pain

After a head injury, it is common for children to experience some degree of pain. Pain will be managed throughout their stay.

Medications can be very helpful for people who have had a brain injury. The amount and type of medication your child is given will depend on the stage of their brain injury, age and pre-existing medical history. While in the intensive care unit, children are often given many medications. These medications are gradually reduced or stopped as soon as it is safe.

Agitation

During the first stages of a severe brain injury, children may need to be sedated using medications including anesthetics. Sedation helps to protect the brain from agitation and restlessness. It promotes time for the brain to rest and heal.

During a traumatic brain injury, agitation can raise the pressure inside the skull. Some children require medications and monitoring equipment to control their blood pressure.

Seizures

During the first stages of a brain injury, seizures can be common. If a child has seizures soon after their brain injury, they may be given anticonvulsants, these medications may be continued for several months. The child may be weaned off the medication after a period of time but only if they have not had any further seizures and have been assessed properly.

It is important for nursing and medical staff to balance pain relief and level of sedation following a brain injury. If a patient needs sedation, this sedation can affect Post Traumatic Amnesia (PTA) testing. The level of sedation from the medication is considered when measuring PTA.

How to help a child or young person experiencing Post Traumatic Amnesia (PTA)

Children who are in PTA should be cared for in a safe, quiet and calm environment, this will involve:

• Where possible a single room will be provided
• familiar items such as photos, toys and comfort items
• blinds can be shut to allow for rest (if sensitive to light)
• blinds can be open and closed to help establish normal sleep/wake cycles (if not sensitive to light). 

Sleep

Following a brain injury, a child or young person can have a disturbed sleep and wake cycle. Where possible all care for your child will be clustered together to encourage undisturbed sleep. This will prevent frequent waking and poor sleep quality. An example of this would be your bedside nurse would take neurological observations, nursing observations including, temperature, blood pressure, pulse and other nursing assessments in one block.

Technology and devices

Screen time is over-stimulating for children in PTA and those recovering from a brain injury. If your child is showing signs they are still recovering from an injury then screen time should be limited. Signs can include irritability, moodiness, headache, photophobia (not liking being in bright places) or not being able to concentrate.

Safety

Children who have had a brain injury and are in PTA can be very impulsive and become agitated. So we can keep them safe, 24 hour supervision from family, and at times one-on-one nursing staff may be needed.

Our team of staff are trained to identify patients who need extra strategies to keep them safe. Strategies may include: 

• lowering the bed
• providing extra padding
• extra mattresses
• extra supervision
• more rest time
• darkening the room
• reducing visitors. 

These changes can be upsetting for families, and our staff aim to provide you with education and support during this time.

Visitors

Whilst in PTA, visitors should be limited to stop your child becoming overwhelmed and tired. We suggest only close relatives to visit your child as noise, people chatting and extra movement in the room will be over-stimulating and will cause fatigue.

As your child/young person is emerging from PTA, your team can speak with you about having other visitors.

The PBIRT team can give you advice on ways to help your visit be more successful for your child.

Meeting with the team

The rehabilitation team meets once a week as a team to discuss your child’s progress and to set goals for the next week of therapy. This is an opportunity to bring questions to the team and to provide the team with information important to your child and family.

Meetings will discuss current progress as well as discharge planning in preparation for your child going home.

Weekly routine and timetable

Structure and routine are important for recovery following a brain injury.

Each week you will receive a timetable of the planned therapy sessions. It will also include time for meals and periods of rest.

When ready, the team will begin rehabilitation therapy, working with you and your child to set functional goals which may include:

• moving around
• eating and drinking, including nutrition
• dressing, toileting and showering
• psychosocial support for the family around grief and loss
• playing and age appropriate leisure activities
• fine motor skills (using hands for activities)
• assessing and managing muscle and bone complication, including prevention of secondary complications
• talking and listening
• assessing and recommending suitable equipment

Child Life Therapy, music therapy and art therapy can also engage with children/young people while recovering, these activities will also form part of your child’s timetable for the week.

Where does therapy happen?

Therapy sessions can happen at the bedside, in the hallways, in the fairy garden or predominately in the Allied Health Department. Your therapy sessions will be tailored by our team based on your child’s goals and current medical condition.

Accommodation and visiting

Bedside accommodation and options

For Paedeatric Intensive Care Unit (PICU), Wards J2A, H1 and J2, one adult can stay overnight next to your child’s bed.

For families who live more than 100 km from the hospital, our team can help find accommodation close to John Hunter Children’s Hospital. This may include Ronald McDonald House or the John Hunter Hospital Cottages.

Visiting hours

Parents are welcome 24 hours per day. Rest time is 1pm to 3pm and 8pm to 10am.

Family and visitors are an important part of recovery following a brain injury. Fatigue from seeing too many people is common so we encourage parents and carers to monitor their child for signs they need rest.

We also recommend Sunday to be filled with rest breaks as we notice if patients have had lots of visitors over the weekend, they often are too exhausted for therapy sessions on Monday.

School

The John Hunter Hospital School is an educational facility for students from Kindergarten to Year 12 who are admitted to John Hunter Children's Hospital.

The school operates as part of a multidisciplinary team which may include parents and other family members, medical staff including social workers, physiotherapists, occupational therapists and/or play, music and therapists.

Discharge planning begins early in your child’s hospital stay. Our team will work with you and your child to assess what you will need prior to discharge, including: 

• home assessments 
• equipment
• home modifications
• funding applications (NDIS, CTP or iCare).

National Disability Insurance Scheme

An application to the National Disability Insurance Scheme (NDIS) may be completed during your stay, if your child is expected to have ongoing support needs. Your therapy team can support you with this application. This will involve meeting with someone from the NDIS to talk about what has happened, what your child is currently able to do, and what equipment and supports your child might need because of their injury or illness. Learn more about the NDIS.

iCare

The Lifetime Care and Support Scheme pays for treatment, rehabilitation and care for people who have been severely injured in a motor accident in NSW. Your child will need to have some specific assessments completed while they are in hospital to qualify for this scheme. Your therapy team will support you with this process. For more information, visit Caring for people severely injured on the road - iCare.

What happens if home modifications are needed?

Our occupational therapists can advise on minor modification and refer you to home modification services when major modifications are needed. Occupational therapists can discuss with external services to make sure the modifications meet your child’s functional longer-term needs.

Discharge and beyond

Once your child is discharged from hospital the team will arrange follow-up in the community. PBIRT has a team of community therapists, nurses and rehabilitation specialist who care for children who have experienced an acquired brain injury.

This team are based at 621 Hunter St, Newcastle West. They will arrange follow-up, goal directed therapy, support for re-entering community or school activities and medical care. Visit Beyond hospital for more information.

If your child has any of these signs or symptoms they should be assessed by a doctor. It is important to note when, for how long, and how bad the symptoms are so you can tell the doctor.

Red Flag Symptoms

If you child is experiencing any of the following, go to your closest Hospital Emergency Department:

• headache or pressure in the head, seizure, unconscious
• eye problems - blurred or double vision
• appearing dazed or stunned
• repeated questions
• abnormal behaviour change
• dizziness or persistent vomiting
• balance dysfunction with weakness or numbness in the legs/arms
• unsteady on the feet or slurred speech
• memory loss, confusion, disorientation
• poor concentration, drowsy or sleepy
• trouble sleeping
• sensitive to light and noise
• something's not right - concerned about your child.

Fatigue

Fatigue is extreme tiredness; it is common and needs to be managed differently depending on the stage of recovery. In the first stage fatigue is managed by rest. Once your child starts to increase their activity, you will need to manage this return to activity gradually. During this graded return to activity, symptoms may increase briefly. This can be expected if their heart rate and general activity is increased. This should gradually settle over time.

Read about concussion and fatigue aftercare and learn more about concussion and fatigue. 

Headache

Headache is the most common symptom patients experience after a concussion/mTBI. These headaches can sometimes be ongoing and need to be managed by the Rehab Doctor and Clinical Nurse Consultant.

Read about concussion and headache aftercare and learn more about concussion and headaches. 

Sleep

After a concussion/mild Brain Injury the sleep wake cycle can become disrupted. Initial napping during the day is important for recovery. When increased sleep in the day leads to later bedtimes, our team can recommend ideas to help sleep to go back to normal.

Read about concussion and sleep aftercare and learn more about concussion and sleep. 

If a concussion occurs during sport or activity your child should stop playing immediately and not return until seen and cleared to do so by a doctor.

The most important treatment for a head injury is complete rest, this includes both physical and mental rest for 24 to 48 hours. After this your child or young person should have a gradual return to their normal activities.

We recommend the following treatment:

• 2 days of complete rest
• no screens, video games or study 
• attempt to create a calm and quiet environment
• reduce noise, light, lots of conversations
• naps are ok for this rest period.

Our team will phone you (from a private number) to discuss your child’s recovery and provide help where needed. We recommend a return to a normal sleep schedule as soon as possible.

Recovery

Recovering from a head injury is a gradual process we recommend returning to regular activities including school and sport be managed in stages.

Return to gentle activity

After a rest period, it's important to encourage your child to gradually return to activity to help them to recover.

Return to school

It is important to let the school know about your child’s head injury. Children may find it hard to concentrate in school and may have a return of symptoms such as headache, nausea and fatigue.

Return to sport

It is important to inform your child’s school and sporting coach that they have had a head injury. Children and adolescents should not take part in school or club sports or exercise until they are completely symptom-free and cleared by a doctor. After a concussion, your child’s reaction times and thinking maybe slower putting them at risk of further injury. You can talk to our team to make sure a graded return to sport has been completed prior to returning to sporting activities.

Concussion Action Plan

A concussion action plan is used to clearly understand your child’s symptoms, when to access emergency care, and gives a clear plan for rest and gradual return to normal activity.

Symptoms persisting

Most patients will recover within days to weeks after an injury, some patients may have ongoing symptoms including: 

• headache
• dizziness
• fatigue
• depression
• anxiety
• sleep disturbance
• light disturbance
• forgetfulness
• concentration difficulties.

Our team will continue to provide support and if Persistent Concussion Syndrome is suspected, a referral to the PBIRT Concussion clinic may be recommended.

Concussion symptoms can persist and will need a medical review from other team members. The PBIRT concussion clinic helps children and young people with ongoing or persistant symptoms who need further assessment and management.

The Concussion Clinic is a monthly service run by the paediatric rehabilitation specialist, rehabilitation registrar and the clinical nurse consultant (CNC). Specialists in the PBIRT team are consulted depending on the needs of the patient.

Location

621 Hunter St Newcastle West NSW 2302

Referrals

For a current patient of PBIRT a referral can be made by the CNC, team leader or medical lead.

External Referrals

If you are a GP or paediatrician and you can refer your patient to the Concussion Clinic.

First meeting – what to expect

Understanding your child’s needs is essential when you start rehabilitation with our PBIRT. We will need to talk about your child’s goals and complete some assessments. We can then decide which type of therapy is needed. The Canadian Occupational Performance measure (COPM) is one of the tools used to guide your care. It helps us to understand what issues are important to you and your child and then a Rehabilitation Care plan will be created.      

Post-Acute Rehabilitation

We will then work with you and your child to arrange rehabilitation. This will vary depending on your child's goals, needs and preferences. Immediately after your child's stay in hospital, there may be an intensive block of rehabilitation at your home or our centre. This will include support for transitioning back into school, preschool or other activities. If your child has significant long-term rehabilitation needs, the PBIRT team will also support the transition process to NDIS therapy providers. We will continue to monitor your child’s recovery through our clinics and will provide consultation and collaboration with your local therapy team.

The service with the Paediatric Brain Injury Rehabilitation Team (PBIRT) team may include help with:

• services available in hospital, at home, at school and in the community
• movement and balance
• everyday living skills
• learning, thinking, speech and communication
• managing behaviour
• reviewing medical needs
• providing information to your family and other support people
• taking part in recreation and social activities
• arranging other support services needed for you and your family
• starting or leaving school.

Getting back to previous activities and the NDIS

Our aim is to help your child get back to their activities. The PBIRT team can provide a flexible service across a range of environments. The team can visit your school or preschool to make sure that your child’s teachers understand how your child’s injury or illness affects their learning, language, physical skills, social skills and mood. The PBIRT team can provide therapy in the home, school or community depending on the rehabilitation goals.

If your child has significant long-term rehabilitation needs, the National Disability Insurance Scheme (NDIS) provides funding for therapy, equipment and community participation. You may have completed an application during your stay in hospital. If more information is needed or if there are new concerns, you may need to complete a new NDIS application. Our PBIRT can help with any assessments and reports to support your NDIS application, as well as help with completing the forms and the application process. For more information, visit National Disability Insurance Scheme (NDIS).

A Paediatric Brain Injury Rehabilitation Team (PBIRT) clinic appointment is a chance for you and your child to meet with our rehabilitation specialist, who can answer any questions you have about your child’s neurological recovery. Even several years after a serious brain injury, clinics are an important way for our team to monitor your child’s recovery and wellbeing and to make sure you and your child have access to support.

Before the clinic

You will receive an appointment letter around 6 weeks before the scheduled appointment time. A PBIRT team member will call you between 2 and 4 weeks before your appointment and will ask some questions about your child’s wellbeing and recovery, medications, local therapist goals (if applicable), and your goals. If you have local therapists, recent reports and progress information is very helpful for the PBIRT team, we can send an email to get this information with your consent.

PBIRT clinic appointments are bulk billed through Medicare you will need a referral to be made to the treating doctor (this information will be in your letter). It can be helpful to ask your GP for an ‘indefinite’ or ‘ongoing’ referral.

On clinic day

Clinics run on Mondays or Fridays at 621 Hunter St, Newcastle. When you arrive, you will need to complete some forms. You should allow about 90 minutes for your appointment. 

During your appointment our PBIRT team will vary depending on what goals and concerns were raised in the pre-clinic phone call. It will usually include our rehabilitation specialist, clinical nurse consultant, and at least 1 member of our therapy team. After your medical review, your child may participate in further discussion or assessments. 

Dress your child in shorts or exercise wear as assessment can include movement and physical skills. Make sure to bring any adaptive aids to your appointment including: 

• glasses
• hearing aids
• ankle-foot orthoses (AFOs).

Following clinic

Our PBIRT team will often have follow up actions. These may include: 

• scripts for medication
• ongoing referrals
• coordination with school, preschool, therapy providers
• coordination with funding providers including NDIS or iCare
• completing assessments and reports
• providing a short-term therapy block.

We will send you a letter outlining our discussion and recommendations from the clinic appointment. With your permission, we like to send our reports to the team working with your child, including therapists, other medical specialties, and schools as required.

If your child has no ongoing complications relating to their illness or injury, we will discharge them from PBIRT. If any issues re-occur, our Clinical Nurse Consultant (CNC) is a good first point of contact. 

Children with a significant illness or injury will receive long term follow-up by the PBIRT team. Our team can support your child with starting school, moving from primary school to high school or leaving high school. When your child leaves formal schooling, their PBIRT involvement will end. If your child needs continued support relating to their injury, we will refer them to the Hunter Brain Injury Service (HBIS).

Moving to adult care

The NSW Agency for Clinical Innovation (ACI) Transition Program helps young people with chronic and complex health conditions as they move from children to adult health services.

Transition should be well planned and begin early to coordinate a smooth transition from child centred to adult centred health care. 

For more information visit Moving to adult care.

Referrals

General practitioners (GP), medical specialists, and allied health clinicians can make a referral for the High Risk Hip Surveillance Service.

Clinic contact information

Our clinic is a multidisciplinary virtual service. If your child needs a physical review, we can see them at one of our other rehabilitation clinics.

Address: 621 Hunter Street, Newcastle NSW

Phone: (02) 4925 7868

Email: HNELHD-HNEkidsRehab@health.nsw.gov.au

Our services include:

• multidisciplinary rehabilitation assessment and review
• rehabilitation care planning
• goal-focussed, multidisciplinary rehabilitation programs
• endurance reconditioning
• psychosocial support
• bladder and bowel management
• wound management
• speech and language assessment
• support independence in daily activities
• co-ordination with education and school support staff
• home school programs
• referral to and ongoing coordination with local community services.

Our team includes:

• paediatric rehabilitation specialist
• nursing staff
• allied health staff including:
  • physiotherapist
  • occupational therapist
  • speech pathologist
  • social work
• psychologist
• art therapist
• music therapist.

Cerebral Palsy (CP) is a physical disability that affects movement and posture. It is a permanent condition that can affect many aspects of a person’s life.

CP is caused by a problem affecting the developing brain either during pregnancy or in the first few years of life. While the condition of the brain does not get worse over time, the way CP affects the rest of the body (particularly the bones, joints and muscles) can change as a person grows and develops. Stroke is the most common cause in babies who acquire CP after 1 month of age. The stroke may occur spontaneously or because of surgical or heart complications. In about 5% of cases, no risk factors or MRI changes are found, and the possible causes of CP are unknown.

Cerebral means ‘of the brain’ and palsy refers to ‘a lack of muscle control’ it affects: 

• body movement
• muscle control - including swallowing and breathing
• muscle coordination
• muscle tone
• bladder and bowel control
• dental and digestion
• sleeping
• reflex
• posture
• balance. 

People who have CP may also have impairments including:

• visual
• learning
• hearing
• speech
• epilepsy
• intellectual impairments.

Diagnosing CP should happen at the earliest possible age. This is important for early assessment and to aim for the best functional outcome.

Diagnosis will include an examination for the signs of CP and an assessment of risk factors for CP which may include:

• premature birth (less than 37 weeks)
• low birth weight
• blood clotting problems
• not enough oxygen and nutrients to the foetus from the placenta
• RH or A-B-O blood type incompatibility between mother and baby
• infection of the mother with German measles or other viral diseases in early pregnancy
• bacterial infection of the mother or baby that directly or indirectly attacks the infant’s central nervous system
• prolonged loss of oxygen during the pregnancy or birthing process, or severe jaundice shortly after birth.

Depending on the age of the child, different assessments can be completed this includes, the General Movements Assessment and the Hammersmith Infant Neurological Assessment (HINE).

If your child is older than 20 weeks of age, Allied Health - physiotherapy, occupational therapy and speech pathology will assess your child. A medical specialist review by either a paediatrician, paediatric neurologist or paediatric rehabilitation specialist will also be completed. They specialist may refer for further testing which may include imaging such as an MRI or genetic testing.

The main types of cerebral palsy are:

• quadriplegia - where both arms and legs are affected, the muscles of the trunk, face and mouth can also be affected
• diplegia - where both legs are more affected, the arms may be less affected
• hemiplegia - where one side of the body (one arm and one leg) are more affected, the other side is sometimes less affected.

We classify CP based on the type of movement disorder:

• Spastic CP - Which is the most common type, affecting 70-80% of people with CP. This is where muscles feel stiff and tight. It is caused by damage to the motor cortex in the brain.
• Dyskinetic CP -  Affects around 6% of people with CP. It causes involuntary movements that are out of a person’s control. It is usually caused by damage to the Basal Ganglia in the brain.
• Ataxic CP - Affects around 6% of with CP. This causes shaky movements and affects balance as well as a sense of positioning in space. It is caused by damage to the cerebellum in the brain
• Mixed type CP - Where a person with CP has more than 1 type of movement disorder. It is quite common to have more than 1 movement type.

We use classification scales to demonstrate how much a person with CP can do these include: 

• Gross Motor Functional Classification Score (GMFCS)
• Manual Ability Classification Score (MACS) for arm and hand use
• Communication Functional Classification Score (CFCS) for communication
• Eating and Drinking Ability Classification system (EDACS).

The clinic includes a:

• paediatric rehabilitation medicine physician
• physiotherapist
• occupational therapist
• speech pathologist
• social worker
• clinical nurse consultant
• clinical psychologist
• dietician.

We offer children a complete functional review including assessment of:

• standing and walking
• arm and hand use
• self-help skills
• speech and language skills
• eating and nutrition
• saliva management.

We provide treatment recommendations and support for children’s community therapy team.

We also complete an assessment of a child’s spasticity and tone and provide treatment options including therapy, medications and Botox.

Referrals

The CPMD clinic accepts referrals for children with a diagnosis or suspected diagnosis of CP or high risk of CP, as well as children with other diagnosed movement disorders. 

Clinicians can make a referral by completing our referral form.

Clinic contact information

Clinics are held every Thursday and alternate Monday mornings. Let our staff know as soon as you arrive for your appointment.

There will be 3 to 5 health professionals attending your child’s appointment. You may want to prepare your child for this ahead of time. For some appointments, a member of our team will contact you before the appointment to answer any questions you may have before you meet the team.

We welcome feedback from children’s community therapists, any reports or feedback can also be sent to our team at: HNELHD-hnekidsrehab@health.nsw.gov.au

Address: 621 Hunter Street, Newcastle NSW

Phone: (02) 4925 7868

Email: HNELHD-HNEkidsRehab@health.nsw.gov.au

Our spinal services include:

• multidisciplinary rehabilitation assessment and review
• initial rehabilitation care planning
• time-limited, goal-focused, multidisciplinary rehabilitation programs
• endurance reconditioning
• psychosocial support
• bladder and bowel management
• wound management
• support independence in daily activities
• coordination with education and school support staff
• home and school programs
• referral to and ongoing coordination with local community services
• support for health professionals caring for children living in regional and remote locations including via virtual care.

Our service team includes:

• paediatric rehabilitation specialist
• nursing staff
• Allied Health staff including: 
  • physiotherapist
  • occupational therapist
  • social work.

Referrals

To access the Botulinum Toxin Clinic, a referral must be made from the Cerebral Palsy Movement Disorder Clinic, Paediatric Brain Injury Clinic or Spinal Clinic after a comprehensive review of tone and function.

Direct referral to this clinic is not available.

Clinic contact information

Our clinics are held on a Tuesday and appointments for this clinic are sent to you from the Paediatric Outpatients Department.

We welcome feedback from children’s community therapists. Any reports or feedback can be sent to the team at: HNELHD-hnekidsrehab@health.nsw.gov.au.

Address: John Hunter Children's Hospital, Lookout Rd, New Lambton Heights.

Mailing Address: 621 Hunter St, Newcastle West 2302, NSW Australia

Phone: (02) 4925 7868

Email: HNELHD-HNEkidsRehab@health.nsw.gov.au.