The Complex Care Coordination Service is a short-term program dedicated to supporting children with multiple complex medical conditions.
We understand that navigating various healthcare services can be overwhelming and often fragmented. This service aims to help streamline this journey for children and their families by improving their journey through the healthcare system and to ensure they receive better healthcare.
The program is run by the Complex Care Coordinator, who supports families with:
Connecting families with a member of the Complex Care Coordination Network (a group of paediatric staff from across Hunter New England LHD) for ongoing support after the program.
We really value your help in planning your child's care. With your input, we can make a plan that fits what your family wants and child needs. We know families are busy and the healthcare system can be complex.
Here's how you can help the care process work best:
The Complex Care Coordination Service caters to the most medically complex children in the Hunter New England region.
To be eligible for the service, children must:
Early referral allows the Complex Care Coordinator time to create a care coordination plan and begin supporting the family before any coordination challenges arise - potentially avoiding these challenges all together.
To access the service, a referral from a healthcare professional is required.
For more information or to request a referral form, contact the Complex Care Coordinator on 0477 688 299 or email hnelhd-hnekidscomplexcare@health.nsw.gov.au
If you are currently using the service or have used the service in the past, we’d love to hear from you and how we can improve services to better support you.
Please reach out to the Complex Care Coordinator on 0477 688 299 or email hnelhd-hnekidscomplexcare@health.nsw.gov.au if you would like to provide feedback on the service.
The Complex Care Coordinator will work closely with you during appointments to set goals and plans for your child's care.
By working closely with your care coordinator, you can expect a thorough approach to managing your child's healthcare needs.
Families will typically spend six months enrolled in the program. Towards the end of the program, your family will be connected with a member of the Complex Care Coordination Network, who will become your main contact person for care coordination after you have finished the program.
Here is the usual process that most families can expect as they move through the program:
First appointment and assessment of child needs.
Your care coordinator will meet with you in-person or on a video call. In this first appointment, your care coordinator will get to know you and your family better and complete an assessment of needs.
Goal setting session.
Your care coordinator will meet with you to work out your care coordination goals. This goal setting session will help them to understand what is most important to you and your family.
Break to plan out care.
Care coordination check-in 1.
Your care coordinator will take the time to gather necessary information and work out a plan of action to achieve your goals. This includes speaking with teams and services involved in your child's care, reviewing your appointment schedule and identifying any gaps.
Care coordination check-in 2.
Your care coordinator will check-in with you regularly to review the plan. We will discuss progress, answer questions and provide coaching or education.
Team meeting.
Your care coordinator will arrange a team meeting with you and your key staff members to provide updates and communicate progress and plans. The final handover team meeting is where your care coordinator and ongoing key point of contact come together to transition you from the service and transfer your ongoing care coordination to key point of contact.
Care coordination check-in 3.
Care coordination check-in 4.
Handover team meeting.
These resources are here to help families with children who have chronic and complex medical needs and are part of our Complex Care Coordination Service. However, other families receiving care in Hunter New England can also use them.
Managing appointments with your child can be a stressful time. Here we have gathered some useful tips to help you.
Here are some numbers that may assist you with your child's care.
Complex Care Coordinator | |
John Hunter Paediatric Outpatient Department | |
John Hunter Children’s Allied Health Service | |
Hunter New England Children’s Rehab Service | |
Royal Newcastle Centre Outpatient Department |
Managing your child’s prescriptions and medications can be confusing and overwhelming. Here are some helpful tips to help you manage and navigate this with more ease.
Prescriptions are notes written by a doctor/GP or specialist that tell you which medicine to take and at what dosage and when to take the medication.
You can be prescribed prescription by your private GP, a doctor or specialist in the hospital setting
Some prescriptions are covered by the Pharmaceutical Benefits Scheme (PBS) meaning that the government (Medicare) will help subsidise certain medications. You can ask your treating health professional or local chemist whether these medications are covered.
If you spend a lot on PBS prescriptions each year, you may be able to apply for a PBS Safety Net Care to help keep your costs down.
It’s important to keep an up-to-date list of your child’s medications. NPS MedicineWise App or a printable Emergency Care Plan can help with medication lists.
If you need help to create your child’s medication list or learn how to use the MedicineWise App, you can ask your child’s doctor/GP for a Home Medicines Review or reach out to a support service like Carer Gateway.
If you need to pick up medication, there are pharmacies located in hospital settings and make sure you have enough medicine and prescriptions to last until your next appointment.
Talk to your healthcare team if you have any worries or questions about getting medicine for your child. Your doctor/GP or pharmacist can help also give you advice. They want to make sure your child gets the right medicine at the right time.
Regular medication reviews are a good idea, especially when your child:
Or if:
Caring for a child with complex medical needs can place a significant responsibility on the whole family. It’s important to have support from family and friends.
Here are some tips to help your family navigate these challenges.
Being a sibling to a child with complex needs can be tough but also rewarding. Be honest and spend quality time with all your children to help them feel supported and to help them understand their sibling’s condition.
For siblings involved in active care for their brother or sister with complex medical needs, Little Dreamers offer support for young people aged 4 to 25 who care for a family member affected by complex conditions or disabilities.
Connecting with friends and other siblings in similar situations can help your children feel less alone. Here are some ideas to keep them connected:
It’s a good idea to look out for mental health struggles in siblings. It is important to seek professional support if you start to notice that they are struggling. Seek support if you notice any of these signs:
The below links provide helpful information and support for siblings of children with complex needs.
Taking care of a child with complex medical needs can be rewarding but also very challenging. Parents can easily get overwhelmed and not have enough time for themselves. This is true for both single-parent and two-parent families.
To avoid burnout and take care of yourself, seek support from friends, family, your GP, a counsellor, or support agencies.
Learn about parent and carer advocacy, how to build skills and get support to self-advocate with our carer support program.
Find out why support is important and where to find it on the Raising Children Network website.
Grandparents may face unique challenges when they have a grandchild with complex needs. They can be a great source of support if the relationship is positive. Try and ask them for practical ways to help like cooking, cleaning, or providing emotional support.
Friendships can be a great source of support during tough times. Ask friends for specific ways of help such as:
The below links provide helpful information and support for parents of children with complex needs.
Psychosocial supports help people feel better emotionally and socially, especially during difficult times.
This can include talking to someone, joining support groups, or getting help with work or housing. The aim is to help people feel happier and stronger.
You don’t have to face challenges alone. Psychosocial supports can help you and your family cope and improve your life by offering:
These supports are here to help you feel connected and supported.
Many organisations offer psychosocial support to families. They can help with:
You can learn more about our carer support program in Hunter New England LHD.
When families, schools, and health services work together, children get the best support.
Support your child in keeping in touch with friends during long absences, like hospital stays, to maintain connections and make returning to school easier.
If your child is at John Hunter Children’s Hospital, they can enrol in the hospital's school. This program supports children from kindergarten to Year 12. Parents can apply by seeking approval from the medical team.
