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Beyond Hospital

The Paediatric Brain Injury Rehabilitation Team (PBIRT) also cares for patients after they leave hospital and can provide support for children and their families up to the age of 18 years.

The PBIRT clinic caters for children and young people who have sustained a moderate to severe Acquired Brain Injury, have ongoing difficulties with functioning and require the assistance of a multidisciplinary rehabilitation team. Examples include problems with walking or posture, cognitive skills, communication, self-care and manual (hand) skills.

Each patient is initially seen by a Rehabilitation specialist and by allied health clinicians. Clinicians from the community who work with the child and family are invited to attend this clinic. The rehabilitation team and the family identify what are the child’s/young person’s functional limitations and then devise or modify the rehabilitation plan.

Who can be referred to the Paediatric Brain Injury Rehabilitation Team in the community?

Any child or young person who has sustained an acquired brain injury and who has ongoing difficulties with functional skills.

Referrals

If you are a medical professional and wish to make a referral to the Paediatric Brain Injury Team, please confirm your patient’s eligibility below.

Does the child or young person:

  • Have a diagnosis of an Acquired Brain Injury which occurred after birth
  • Have an identified need for a multidisciplinary assessment of function.
  • Be aged 0-16 years.
  • New referrals for children aged 16 to <18 years will be reviewed on an individual basis to decide allocation to paediatric or adult services.
  • Reside within the Northern Child Health Network
  • Require a multidisciplinary assessment, medical and therapeutic interventions (i.e. not a referral for a specific discipline or maintenance therapy)

For health care providers wanting to complete a referral, please click here.

For discussion of a specific patient please call John Hunter Children’s Hospital (02) 49213000 and ask to speak with the PBIRT Clinical Nurse Consultant.

Paediatric Brain Injury Rehabilitation Team

Rehabilitation Doctors

Rehab doctors work in a team with nurses and therapists to achieve functional, meaningful changes that allow the person to get the most out of life.

Clinical Nurse Consultant (CNC)

The PBIRT Clinical Nurse Consultant (CNC) helps the team and coordinates the care of children and young people while in the hospital and those being cared for in the community.
The CNC provides care to children and young people who have suffered a mild brain injury/concussion. The CNC provides phone call support and helps your child manage their injury and ensure their symptoms get better quickly. The CNC will assess if your child needs to be referred to the Concussion Clinic for review by our rehab doctors or other therapists within the team.

Occupational Therapy

Occupational therapists use a child and family focused approach to support children and young people to engage in daily activities. Occupational therapists on the team can help your child to achieve goals in a variety of areas including play and social skills, self-care skills, fine motor skills, access to daily activities, and organisation and planning skills.  Occupational therapists on our team can complete standardised and non- standardised assessments, funding applications for equipment to support children to achieve functional goals.

Social Work

Social Workers in HNEKidsRehab support children and their families as they adjust to a new diagnosis, a disability or an acquired injury and all that this can entail. They work therapeutically with families to address issues such as grief and loss, chronic pain, crisis situations and other stressors. Social Workers help families to navigate the complex systems of Health, Education, National Disability Insurance Scheme (NDIS) and Department of Communities and Justice (DCJ) to best meet the Rehab needs of your child.

Physiotherapy

Physiotherapists work across all areas of the HNEkidsRehab service helping to achieve the young person and their family’s goals around movement and physical function. Physiotherapists assess, diagnose and manage problems with children’s physical development, walking, moving, playing games, sports and other physical activities. We assist in the prescription of orthotics, splints and other equipment to help with transfers, standing and walking and participating in activities.

Physiotherapists on our team can complete standardised assessments to evaluate development, assess muscle tone and changes in bone and joint position and movement. Our goal is to provide rehabilitation that optimises function and well-being and to help children and families achieve their chosen physical and movement goals.

Speech Therapy

A Speech Pathologist can help if you have goals around speech sounds, understanding and expression of language (including Alternative and Augmentative Communication), improving your reading and written work, and developing social skills. A Speech Pathologist can also assess eating and drinking to make sure that mealtimes are safe. The Speech Pathologists on our team also can complete standardised assessments to track progress, support funding applications and inform the goal setting and rehabilitation process.

Clinical Psychologist

The Clinical Psychologist works part time across HNEkidsRehab services including the Paediatric Brain Injury Team. The Clinical Psychologist aims to improve the emotional, behavioural and mental health wellbeing of children and their families/carers referred to the service through psychological assessment, therapeutic intervention, consultation and recommendations.

Dietitian

The dietitian works part time across HNEkidsRehab services, including the Paediatric Brain Injury Team. Dietitians aim to improve the growth and nutritional status of children through assessment and education. Reasons for referral may include poor growth, underweight/overweight, nutrient deficiency, requirement of oral nutrition supplements, poor wound healing, constipation or texture modified diet (provided in conjunction with speech pathologist).

(Note: Due to the limited availability of services, patients who are reliant on enteral feeding, such as nasogastric or PEG tubes, are not managed by the HNEkidsRehab dietitian)

Case Manager

If your child has been injured in a motor vehicle accident, they may be able to access compensation through Compulsory Third Party (CTP) or Lifetime Care and Support (iCare). An internal case manager can be allocated through the PBIRT team to support you with this. The role of a case manager is to gather information on the impact of your child’s injury, both for your child and family. The case manager then builds a plan called ‘My Plan’, which tells iCare about your rehabilitation needs and goals and the amount of funding required to meet these. The case manager can also assist you with finding therapists close to where you live, coordinating specialist appointments and assisting with access to community activities.

Paediatric Neuropsychologist

Neuropsychology involves working out how brain injuries or illness affect cognitive functions (thinking skills like attention, learning, memory, planning, etc.) and behaviour. This is usually done through an assessment involving an interview (asking and answering questions about history, strengths, and weaknesses) and some assessments (questionnaires, puzzles, questions, memory tests, etc.). Neuropsychologists then write a report including information about cognitive strengths and weaknesses and targeted strategies to allow children to build on their strengths and compensate for their weaknesses. The report can be used to clarify diagnoses, inform goals, provide support at school, and for funding applications.

Child Life Therapy

Child Life Therapists are healthcare professionals who specialise in child development. They work with children and families to normalise the hospital environment as much as possible. Child Life Therapists use various guided play experiences to promote coping and mastery, as well as assist children in maintaining developmental, social and emotional wellbeing including ways to minimise stress and anxiety

Art Therapy

Art therapy provides stimulating and creative experiences that promote the release of serotonin or endorphins. These natural chemicals improve mood, dampen pain and regulate sleep. High levels of stress and inactivity due to illness and hospitalisation can reduce overall levels of these chemicals.

Art creates a distraction that allows patients to think of something positive. It also gives them something they can control. Creative projects are designed to have a successful outcome for the patients and consequently boost their self-esteem and confidence as well as help them to relax.

It can also be utilised as a means for them to express how they feel about their illness or to visualise their level of recovery or discomfort. Patients often find it easier to communicate visually many concepts that they would be struggling to explain with words.

Music Therapy

Music Therapy is delivered by a Registered Music Therapist.

Music Therapy programs involve a range of musical applications including instrument playing, singing/vocalizing, composition, song/lyric writing, music and movement, listening, improvisation and performance.

Music provides a diversion from the hospital environment and can help with stress, anxiety and pain relief. Music is also a form of communication and expression which can be helpful when exploring thoughts and feelings about being sick.

For seriously ill children, soothing guitar music and simple relaxation techniques help reduce discomfort and pain.

New Patient Information

Initial meeting – what to expect

Getting an idea of your child’s needs is essential when you start rehabilitation with PBIRT. Your first contact with the PBIRT team may be with our staff specialist, or our therapy team, or both. We will need to talk about your child’s goals and complete some assessments before we can start therapy with your child. Following this first meeting, we will decide which therapy disciplines will be needed and work with you and your child to arrange a block of rehabilitation.

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/young person. It is a way to measure changes in your child’s performance problem areas. This will usually be completed with you (and your child, if appropriate) in the first few sessions, and then a Rehabilitation Care plan will be created. Your child’s care plan will outline these goals and what steps will be taken to work towards achieving these

Post-Acute Rehabilitation

After the initial meeting and goal setting, we will work with you and your child to arrange rehabilitation. What this looks like will vary significantly according to your goals, needs and preferences. Immediately following your stay in hospital, this may be an intensive block of rehabilitation at your home or our centre. Post-acute rehabilitation is likely to 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 (see NDIS). In this case, we continue to monitor your child’s recovery through our clinics, and are able to provide consultation and collaboration with your local therapy team.

The service with the PBIRT team may include helping your child and your family

  • In hospital, at home, at school and in the community
  • With movement and balance
  • With everyday living skills
  • With learning and thinking
  • With speech and communication
  • By helping with managing behaviour
  • By reviewing medical needs
  • By providing information to your family and other support people
  • With taking part in recreation and social activities
  • With developing creative thinking and life enriching skills
  • By arranging other support services needed for you and your family
  • By providing or arranging counselling for you or your family
  • With starting or leaving school
  • With co-ordination of the above services·
Getting back to previous activities

Every child has a different rehabilitation pathway following a significant brain injury. From the initial meeting, PBIRT will know about your previous activities and goals and priorities for rehabilitation. Your previous activities may have included

  • Attending school, preschool or day-care
  • Sporting activities
  • Part time employment
  • After school activities
  • Social activities with friends
  • Hobbies such as reading, bike riding, playing an instrument

The PBIRT team are able to provide a flexible service across a range of environments. The team can visit school or preschool to ensure that your child’s educators 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. An application may have been completed during your stay in hospital. When additional information is needed or if new concerns arise, a new NDIS application may need to be completed. Assessments and reports to support your NDIS application, as well as assistance with filling out the forms and navigating the application process can be provided by the PBIRT team. For more information on the NDIS, visit National Disability Insurance Scheme (NDIS)

Clinics

A 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, ensure you and your child have access to appropriate supports and to answer any questions you might have.

Prior to 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 prior to 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, and require 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, as PBIRT clinic reviews often continue until your child leaves school.

On clinic day:

Clinics are held on Mondays or Fridays at 621 Hunter St, Newcastle. When you arrive, you will be given some forms to fill out while you wait for your appointment. Your child will have their height, weight and blood pressure taken before their medical appointment.

The PBIRT team present for your child’s appointment will vary depending on what goals and concerns were raised in the pre-clinic phone call. Usually, a clinic appointment will involve our rehabilitation specialist, our clinical nurse consultant, and at least 1 member of our therapy team. After your medical review, your child may participate in further discussion or assessment if particular concerns were raised in the medical appointment or pre clinic phone call.

You should allow about 90 minutes for your appointment. Encourage your child to dress in shorts or appropriate exercise wear as assessment of movement and physical skills are commonly completed. If your child uses any adaptive aids such as glasses, hearing aids, ankle-foot orthoses (AFOs), please ensure these are also brought to your appointment.

Following clinic:

After your clinic appointment, the PBIRT team will often have follow up actions. These may include scripts for medication, ongoing referrals, liaison with school/preschool/therapy providers, liaison with funding providers such as NDIS or iCare, completing standardised assessments and reports, or providing a short-term therapy block.

You will receive a letter summarising the discussion and recommendations from the clinic appointment. If you have any questions about this report, you are very welcome to be in touch. 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.

What happens next?

If your child is not experiencing ongoing complications relating to their illness or injury, they will be discharged from PBIRT. If any issues arise in the future, our Clinical Nurse Consultant (CNC) is a good first point of contact. The CNC can provide information, liaise with the Rehab Specialist if required, and can let you know whether a new referral is needed.

Children who have had a significant illness or injury tend to receive long term follow up by the PBIRT team, as needs often change at times of transition (for example, starting school, moving from primary school to high school, leaving high school). When your child leaves formal schooling, their PBIRT involvement will end. If your child continues to have significant rehabilitation goals relating to their injury, they will be referred to the Hunter Brain Injury Service (HBIS).

Transition

The NSW Agency for Clinical Innovation (ACI) Transition Program assists young people with chronic and complex health conditions as they move from children's to adult health services, there are three area coordinators for NSW.

Transition should be well planned and begin early to ensure an uninterrupted, coordinated, and smooth transition from child centred to adult oriented health care.

Our team works in collaboration with Transition Care to provide an individualised smooth transition of care. For more information please visit: Transition Care | HNE Kids (nsw.gov.au)

Helpful links

Refrences

Silverberg ND, Iverson GL, McCrea M, Apps JN, Hammeke TA, Thomas DG. Activity-Related Symptom Exacerbations After Pediatric Concussion. JAMA Pediatr. 2016;170(10):946–953. doi:10.1001/jamapediatrics.2016.1187

Sydney Children's Hospital Network. (2022). Concussion and mild head injury. Sydney Children's Hospitals Network | care, advocacy, research, education. https://www.schn.health.nsw.gov.au/fact-sheets/concussion-and-mild-head-injury