Hunter New England LHD Complex Care Coordination Service

The program is run by the Complex Care Coordinator, who supports families with:

• Goal setting: working with families to set goals for their child's care and develop a plan to achieve them
• Team communication: supporting communication within the child's healthcare team
• Appointment bookings: helping to book medical appointments
• Transport bookings: assisting with arranging transport for medical appointments or procedures
• Paperwork: helping families to find and complete paperwork related to their child's medical needs
• Understanding the system: Helping families to learn more about the health system and their role within it and keeping you connected.

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.

• Replace communication between you and your child's health team.
• Help with non-medical appointments or transport.
• Provide support that is not related to your child's medical care.
• Control the decisions of organisations that operate outside of NSW Health (e.g. NDIS plans/funding, non-government organisation support, transport, appointments etc).
• Provide medical advice.

Your important role

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:

• Come to / join online for all appointments - they help us all stay on the same page.
• When we send messages, try to reply as soon as possible.
• Join in with the planning, your input is important.

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:

• Have accessed a Hunter New England children and health service.
• Have a diagnosis expected to last longer than 12 months.
• Need specialty medical support under three or more specialty teams dealing with different organ systems (this can be predicted for infants).
• No existing key person already coordinating care within a multidisciplinary team and there is a need for a more coordinated approach.

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. 

Managing appointments with your child can be a stressful time. Here we have gathered some useful tips to help you.  

Location

• Find out where the location is and where you need to go.
• Please contact the facility directly and give yourself time. 

Before your appointment

• Clarify what the appointment is for and whether you require these face-to-face or whether you can have these via virtually – check with your facility.  
• Some children feel anxious visiting the doctor, be aware of this and let your child’s care team know ahead of your visit.  
• Is there a support person you can bring with you. Can you bring a soft toy, book or game for your child.  
• Think about questions beforehand you might have for your healthcare provider.  
• Think about how much your child will want to be involved in the conversation.  
• If you have multiple appointments, let your teams know so they can move them appropriately to allow you to comfortably make each appointment.  

During your appointment

• Ask everyone to introduce themselves.  
• Have your questions ready.  
• Let the therapist know how your child likes to communicate.  
• If you are unsure about something like test results, ask the health professional to explain.  
• Ask for a contact number if you have questions after the appointment.  
• Ask for written notes.  
• Find out when the doctor or therapist would like to see you again and whether this needs to be in person or through virtual care (telehealth).  

Appointment changes

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

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

Prescription costs

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.

Medications

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.

Medication reviews

Regular medication reviews are a good idea, especially when your child:

• Has 5 or more different medicines prescribed.
• Takes more than 12 doses of medicines per day.
• There has been a recent mix up of, or missing medication.
• Is taking medications that have been described to you as ‘high risk’.
• Has recently had big changes to medicines or their treatment plan.
• Won’t take the medication.
• Has impaired kidney or liver function.
• Has been in hospital very recently or is often admitted to hospital.

Or if:

• You find it hard to understand the different prescriptions.
• You get your child’s medication from different chemists at different times.
• You use tab timers or webster packs and there are issues with using these.
• You don’t think your child’s medication is working. 

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.

Tips to help support siblings

• Listen to your child’s feelings about their sibling’s medical situation. It’s normal for them to feel happy, proud, sad, embarrassed, annoyed, or confused.
• Let your children know it’s okay to ask questions and share their feelings. Be truthful and use words they can understand.
• Encourage your children to spend time together. If one child is in the hospital or away for treatment, they can connect through drawings, cards, messages, or phone calls.
• Teach your children different ways to communicate with their siblings to help them understand one another better.
• Involve your other children in hospital visits or appointments when appropriate. For younger children, read books about going to the hospital and play hospital or doctor games to help them understand the process.
• Spend quality time with each of your children, whether planned (like drawing together or going for a walk) or unplanned (like singing along in the car). This will look different for every family.

Support for siblings who are carers

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.

Social support for siblings

Connecting with friends and other siblings in similar situations can help your children feel less alone. Here are some ideas to keep them connected:

• Peer support groups: online or in-person groups for siblings of children with disabilities are great for connecting with others. These are often run by disability organisations, local councils, or young carer support services.
• Livewire Online is a community support initiative run by the Starlight Foundation for children aged 12 and older living with illnesses or disabilities, this online community also welcomes siblings to join and be part of the conversation.  
• Community activities: encourage your children to join local activities or groups like sports teams, music groups, or volunteer organisations. This helps them feel they belong and are important.
• School support: inform your children’s teachers about your family’s situation so they can provide extra support in the school setting if required. A lot of schools have very good counselling and support services for children.  

Mental health of siblings and signs to look out for

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:

• changes in sleep or eating
• Acting out, feelings of frustration or being annoyed
• losing interest in activities
• avoiding their sibling
• struggling with school
• pretending to have medical needs
• trying hard to make others happy. 

Helpful resources

The below links provide helpful information and support for siblings of children with complex needs.  

• Siblings Australia – support for siblings
• Kindred – 8 tips for supporting siblings
• Kindred – how to harness the strength of a sibling  
• The Sydney Children’s Hospital Network – support for siblings
• Raising Children Network – siblings of children with disability

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.

Practical and emotional support

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. 

Peer support options

• MyTime: free online support discussions for parents of children with disabilities.  
• Carer Gateway: virtual and in-person peer support and counselling for carers.  
• Local support: talk to your child’s healthcare team or existing service providers to find local peer support options. 

Relationships with grandparents

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.

Grandparents may be concerned with:

• wanting to help but not wanting to be overbearing.
• wanting to know what’s happening but not wanting to bother the family with questions.
• needing support but not knowing where to get it.
• having their own health problems.
• feeling less connected to the family if they live far away.

Relationships with friends

Friendships can be a great source of support during tough times. Ask friends for specific ways of help such as:

• give them ideas on how they can help, this can include making dinner or taking your child’s sibling to soccer practice.

What are psychosocial supports?

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:

• counseling and therapy
• support groups
• caregiver breaks (respite care)
• local services
• groups that help with specific health issues
• school and community programs
• Faith-based groups
• peer support or online chat groups
• fun activities and sports in your community.

These supports are here to help you feel connected and supported.

Support for families: who can help?

Many organisations offer psychosocial support to families. They can help with:

• listening and giving free advice
• connecting you with local services
• help with transport or finding a place to stay
• tips on managing money
• supporting your health, happiness, and relationships
• balancing life as a carer or person with a disability
• linking you with others who understand your situation
• providing information and resources.

You can learn more about our carer support program in Hunter New England LHD. 

Helpful links

• Ask Izzy: helps you to find support and services quickly and anonymously, closest to you and by postcode, including:
  • food
  • housing
  • counselling
  • health services
  • everyday needs (clothes, showers)
  • money or financial assistance
  • advice and advocacy
  • domestic and family violence help
  • working and learning support.
• Carer Gateway – free service providing support to carers in Australia.
• Family Connect and Support – local support services, practical advice and information.
• Rare Voices – online directory to support groups for rare diseases.
• Disability Gateway – service directory and support information for people with disability, their families, carers and friends.
• Friendly Faces Helping Hands – support services for people living in rural or remote areas, travelling to or staying at metropolitan hospitals.
• Raising Children Network – information for families with children with disabilities.
• Kindred - online support organisation by and for families of children with complex care, disability or medical needs. 

When families, schools, and health services work together, children get the best support.

Top tips

• Tell the school about any changes in your child’s health.
• Let them know about appointments that may cause absences.
• Arrange a meeting to plan your child’s care at school
• Stay in regular contact and share updates.

How to keep the school involved

• Choose a key contact person at the school. 
• Decide how to share updates (meetings, calls, emails).
• Plan for special events like excursions or camps and consider any medications or equipment that may be needed.
• Share helpful documents such as medical plans or specialist reports with the school.
• Help your child explain their health condition to teachers and classmates.
• Respect your child’s privacy when deciding what information to share.

Staying connected with school friends

Support your child in keeping in touch with friends during long absences, like hospital stays, to maintain connections and make returning to school easier.

John Hunter Children’s Hospital School

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.

More resources for support

• Kindred: school resources for children with chronic health needs.
• Better Health Channel: tips for managing chronic illness at school.
• Raising Children Network: school, play, and work support for children with disabilities.