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Colorectal and Pelvic Reconstruction Service (CPRS)

Well-being team

  • CPRS Well-being team 

    The CPRS team is very aware of the impact of having a colorectal condition. The CPRS Well-being team, comprised of Psychology, Social Work and Child Life Therapy, provides specialised support for patients and families. In addition to the CPRS Well-being team, the CPRS Clinical and Stomal Therapy Nurse Consultants will provide a high level of support to families. 

    Please click on the below links to find out more:

    Psychology

    The CPRS Clinical Psychologist can provide support to children and their families. *** Please note appointments are currently not available ***

    • Talking about how you feel about your child’s diagnosis and treatment
    • Managing procedures, such as bowel washouts and anal dilatations
    • Ongoing anxiety in your child about medical procedures and surgery
    • Sibling support, such as how to explain procedures and hospitalisation
    • Stool withholding and toileting issues
    • Challenges, such as feeling different at school and with friends
    • Body image and self-esteem in adolescence

    Social Work

    What is social work?

    The Australian Association of Social Workers defines Social Work as 'a profession committed to helping people achieve the best possible levels of personal and social well-being'.

    Social Workers complete post-graduate education that enables professional membership to the Australian Association of Social Workers. Social Workers are bound by a code of professional conduct and ethics.

    More information about the profession of Social Work can be found at www.aasw.asn.au.

    The CPRS Social Worker works with children and their families to help them cope with, and adjust to, their health condition. The range of support and services provided by the social worker includes:

    • Counselling
    • Supporting families through times of crisis and distress
    • Providing education and information
    • Advocacy
    • Planning for returning home
    • Referral to community agencies and supports
    • Liaising with interstate, regional and other metropolitan hospitals
    • Delivering group and support programs
    • Facilitating access to the hospital

    The Royal Children's Hospital (RCH) Social Work Department provides a service via referral to all inpatient wards, medical and surgical units of the hospital, and continues to work with some patients and families after leaving the hospital.

    There are a number of Social Workers in the department with specialist knowledge and skills in a range of areas, such as children's genetic conditions, transplant, critical injury, terminal illness and rehabilitation. There are also a range of bereavement programs and services for families when a child has died while a patient of this hospital. 

    Child Life Therapy

    The CPRS Child Life Therapist (CLT) provides individualised support to children and young people to promote effective coping during procedures and hospital visits. If you have concerns around your child’s ability to cope effectively during these procedures you may consider asking the team to place a referral with Child Life Therapy.

    The Child Life Therapy team provide support in the following ways:

    • Medical play

    Medical play allows children the opportunity to become familiar with some of the medical equipment that they may encounter in a safe, non-threatening manner using a range of real and pretend items.  Children have the opportunity to see, feel and manipulate equipment promoting a sense of mastery and control.

    • Preparation for procedures

    Children will often cope better with procedures when they know what to expect and there are no surprises.  Child Life Therapists use a range of developmentally appropriate resources to help explain procedures to children.  Resources include the use of peer modelling videos, visual schedules and targeted medical play around the particular procedure.  Most children cope best with a simple explanation about what a piece of equipment is for, where it goes on the body, how it might feel and how long it may need to be used for.   The information shared with the child is carefully targeted taking into account the child’s individual needs including age, developmental stage, cognitive ability and previous medical experiences.

    • Development of coping strategies

    During preparation sessions, the Child Life Therapist may introduce, discuss and rehearse with the child some coping strategies that could be incorporated into the procedural plan.  Strategies can include promoting the use of comfort positioning, breathing techniques and cognitive distraction.  The Child Life Therapist can also assess suitable opportunities to offer the child appropriate choices to promote a sense of control and involvement in their treatment to enhance coping.

    • Procedural support

    Child Life Therapists can provide support to children during procedures, offering them an alternate focus to what the medical team are doing.  When a child has had some preparation and knows what to expect they can divert their focus to other activities.  Child Life Therapists often use iPads or other novelty items, to engage a child before, during and after procedures to promote a positive experience. 

    Resources for parents

    • Adjustment to diagnosis 

    Adjusting to your child’s diagnosis may be quite overwhelming and challenging at times. The team have written a brief resource on what you may expect at this time.

    Colorectal and Pelvic Reconstruction Service - Adjustment to diagnosis

    • Anxiety in primary school aged children

    RCH Kids Health Info- Anxiety in primary school aged children

    Resources for children

    This program is run for young people aged from 12-25 years. The focus is to connect with other young people who understand what it’s like to live with a chronic illness.

    Please see the link for further information and, if you would like to be part of this program, please talk to the CPRS Coordinator.

    Coming into hospital

    RCH has a number of supports available to assist children in coming in to hospital.

    • Child Life Therapy - Child Life Therapists can provide a pre-admission visit to help children better understand their stay and what may happen to them while in hospital: https://www.rch.org.au/child-life-therapy/
    • Comfort Kids - These coordinate pre-operative medications to decrease anxiety, and work with the Child Life Therapy Team. They have a list of coping resources on their website: https://www.rch.org.au/comfortkids/

    There are also kids health information fact sheets to help parents and carers provide support to their child:

    https://www.rch.org.au/kidsinfo/fact_sheets/Your_childs_hospital_stay/

    https://www.rch.org.au/kidsinfo/fact_sheets/Reduce_childrens_discomfort_during_tests_and_procedures/

    Siblings

    The CPRS team understands that having a baby or child with a colorectal condition may be hard for older siblings, especially when there is a lot of medical appointments and time spent in hospital. The Well-being Team may provide brief care sessions to siblings who are finding it hard to adjust to their brother or sister’s care needs. 

    Siblings Australia (https://siblingsaustralia.org.au/) also provide support for siblings of children living with a chronic health condition. 

    External emotional support for children and their families

    Private psychology support may be accessed through the GP, by completing a Mental Health Care Plan. This provides up to 20 sessions per year – often there is a gap fee that varies from practice to practice. Although many have long waitlists, there are some that do have current availability and offer bulk-billing. Please click here to learn more about accessing private psychology support.

    Private psychology support

    A number of online and phone emotional supports are also available to children and young people:

    • CAREinMIND is is a free well-being support service offering online and phone counselling phone: 1300 096 269
    • Kids Helpline - This offers a free, confidential 24/7 online and phone counselling service for children and young people 5 to 2 phone:1800 55 1800
    • Livewire - Livewire is a free online community connecting teens living with illness/disability and their siblings
    • eHeadspace - eHeadspace provides free online and telephone support and counselling to young people 12 – 25 and their families and friends 
    • MindShift (app) - Free app designed to help adolescences and young adults cope with anxiety and shift their thinking. Offers a range of strategies to manage excessive worries, stress, anxiety and panic. Also offers mindfulness and relaxation techniques
    • SmilingMind (app) - Free app that offers mindfulness and meditation exercises for young people 7 years and older. Australian designed app to help de-stress and stay calm, a range of different programs for different age groups

    Wadja Aboriginal Family Place

    Wadja Aboriginal Family Place is located on the ground floor in the North Building, follow the corridor from the green lifts past the coffee shop and turn right.

    A culturally sensitive service for Aboriginal and Torres Strait Islander children and their families. Aboriginal liaison officers are employed in hospitals to ensure Aboriginal and Torres Strait Islander People have equitable access to mainstream health care services, and to increase the cultural awareness and sensitivity of health care services to the distinct needs of Aboriginal and Torres Strait Islander Families.  

    To contact Wadja please call (03) 9345 6742 or see https://www.rch.org.au/afsu/ for more detail.

    Other helpful information

    If you require assistance with any of the below, please speak with one the of CPRS coordinators via email colorectal.coordinator@rch.org.au or phone: 03 9345 6979

    Centrelink

    Families may be eligible for Centrelink payments including:

    • Carers Allowance - This is an additional benefit to the Health Care Card provided by the Commonwealth Government.  ‘A fortnightly supplement if you give additional daily care to someone who has a disability, serious illness, or is frail aged.’ For Carers allowance the medical condition must meet the criteria of being chronic (lifelong) or for a prolonged period of time. A submission may be made to obtain the Carers Allowance from Centrelink. It is means tested and families who meet residency requirements are eligible if the family household income in lesser then $250, 000. It is only available for children up to age 16 year of age.
      Eligibility for the Carers Allowance is determined on criteria based on the medical report that can be signed by the Treating Doctor or your local GP. https://www.servicesaustralia.gov.au/individuals/services/centrelink/carer-allowance

    • Carers Payment - This is ‘An income support payment if you give constant care to someone who has a severe disability, illness, or an adult who is frail aged.’ https://www.servicesaustralia.gov.au/individuals/services/centrelink/carer-payment

    • Health Care Card (HCC) - This is ‘A concession card to get cheaper medicines and some discounts if you get a payment from us.’ https://www.servicesaustralia.gov.au/individuals/services/centrelink/health-care-card
      You will automatically get a HCC if you receive either carer allowance or payment. Further information about the Health Care Card can be obtained from any Centrelink office, by accessing www.centrelink.gov.au or by calling 13 27 17.  

    Parking

    Refer to RCH Car parking procedure for details https://www.rch.org.au/info/az_guide/Car_parking/

    Families are eligible for a discount parking card if:

    • Their child receives a disability allowance (e.g., Child Disability 'CD' on the patient's Health Care Card or Disability Support Pension 'DSP' on the Pension Card).
    • Parent/carer is in possession of a Federal Government Concession – i.e. pension health care card.
    • Child has been an inpatient for 48 hours or more.
    • Families experiencing undue financial hardship can request discount parking fees by contacting their Ward Clerk, Specialist Clinic desk staff or the Social Work Administration Coordinator via Allied Health Reception B on Level 1, East Building or tel. 93459300.

    Transport Assistance Schemes

    Families can access relevant transport schemes if they are travelling more than 100km from the RCH. Ward clerks/ Specialist Clinic admin staff can supply printed copies and assist with Medicare provider details.

    If you live more than 100km away from the hospital, you may be eligible for travel and accommodation assistance from the Victorian Patient Transport Assistance Scheme (VPTAS).

    Claim forms are available from the RCH’s Family Hub, clinic desks and Main Street Reception, or you can download the form https://www.health.vic.gov.au/rural-health/victorian-patient-transport-assistance-scheme-vptas

    The medical specialist will need to complete some sections of the form before you can claim. Please speak with one of the CPRS Coordinators if you require assistance. Equivalent schemes are available in each state for interstate residents.

    Financial counselling

    The Australian Government provides a free financial counselling service which you can access to receive information, advice and advocacy if you are experiencing financial difficulty. Phone 1800 007 007 (9:30am-4:30am, Monday to Friday), or visit the National Debt Helpline website to find a local face-to-face office near you at http://www.ndh.org.au

    Accommodation

    Families are encouraged to contact accommodation options themselves or speak with a CPRS Coordinator. 

    • Ronald McDonald House is located a short walk from RCH in Parkville, tel.  (03) 9966 8400 or nearby in North Fitzroy, tel. (03) 9966 8440
    • Medistays is a useful web resource that can assist with locating accommodation close to the hospital. https://www.medistays.com.au

    My RCH Portal

    My RCH Portal is a way for the RCH to put you at the center of your care. It is a website and mobile app that gives you and your parents or legal guardians access to information in the RCH medical record, when and where it suits you. All information on the RCH portal can be accessed here https://www.rch.org.au/my-rch-portal/ . The CPRS coordinators are happy to assist you with this.