Family resources

In this section you will find helpful links to epilepsy management documents that can be used with your health care professional.

Links to websites and phone numbers of organisations that may be useful for families with a child with Epilepsy are also provided.

Documenting events

Use the Event Record document to provide your health practitioner with the important details surrounding the event.

Documenting event frequency

Use the Event Diary to keep a reliable record of the frequency and type of events you have been experiencing.

Use the Event Diary to keep a reliable record of the frequency and type of events you have been experiencing.

Epilepsy Medical Record

This can be completed by your Health Pracitioner once a diagnosis of Epilepsy has been made.

Undertaking Cardio-Pulmonary Resuscitation course, known as CPR, is recommended.

Here's a list of courses available in NSW

Kids Health provides free online CPR Training for Parents.

Epilepsy Action

  • Community support organisation for families and children living with epilepsy. 
  • Includes information on services such as individual service plans, individual client education, seizure management planning, and camps for young people.
  • Provides information regarding epilepsy for families, children and young people.

Visit the website

Epilepsy Australia

  • A national coalition of Australian epilepsy organisations working together to keep communities informed on the latest medical breakthroughs, social research, publications, news and policy about epilepsy.
  • Their vision is for inclusive communities where people with epilepsy can live and participate free of stigma and discrimination.

Visit the website

Neuroscience for Kids

Visit the website


If a child, adolescent, or parent is having difficulties with depression, anxiety or behaviour, visiting the local GP is a good first place to start.

  • Your GP can provide initial assessment and medical treatment, and refer to a mental health professional if necessary.
  • GP’s can create a Mental Health Plan which will enable the patient to access services and receive Medicare rebates under the Medicare Better Access intiative.
  • Alternatively, the GP can refer the patient to a Psychiatrist or Paeditrician for assessment and diagnosis.
  • The Psychiatrist or Paediatrician can then refer directly to allied health and mental health services without a Mental Health Plan once a diagnosis has been made.

The below document provides contact details for a range of mental health services available in Greater Sydney and regional NSW. It also provides links to electronic resources and e-mental health programs as well as phone numbers for agencies that provide support via telephone.

The list is not exhaustive but should serve as a guide on resources available:

Raising Children Network

  • A web-based resource for parenting newborns to adolescents, including a section on children with special needs.
  • Information on your child’s disability and your feelings, dealing with the reactions of others, sibling issues, services and supports, working with professionals, and disability rights and the law.
  • Discussion forum for parents to share ideas and connect with other parents of children with disabilities.

Visit the website

Association of Children with Disabilities NSW

  • A parent-run association which provides information and support to parents and families who have a child with a disability or developmental delay.
  • Produces “Through the Maze” (referral, information and support handbook) and “Helping You and Your Family” (focuses on the emotional and relationship considerations that impact on the family).
  • Provides advocacy and telephone-based support and networking with parents and families.

Visit the website

Carers Australia

  • National body representing carers in Australia. Works with carer associations in each state.
  • Aims to improve the health, wellbeing and resilience of carers.
  • Provides telephone support.
  • Register for “Better Start” initiative which provides funding for early intervention for children with certain conditions.

Visit the website

Carers NSW

  • NSW carer organisation.
  • Aims to improve the health, wellbeing and resilience of carers.
  • Phone: 1800 242 636

Visit the website

Young Carers NSW

  • Provides information for young people (under 25 years) who are carers.
  • Provides a forum for young people to have a say and share ideas which is moderated by a trained counsellor.

Visit the website

Commonwealth Respite and Carelink Centre

  • Information centres that provide information about support services available locally for people with disabilities, including information about respite and carer counselling programs.
  • Phone: 1800 052 052

Visit the website

Siblings Australia

  • Provides support for brothers and sisters of people with special needs, including people with disabilities. Provides information for parents on issues for siblings.
  • Print and web-based resources and networking opportunities for siblings.
  • A web forum for siblings only (young, teen and adult siblings).

Visit the website


  • Provides a free and safe online community for children and young people (10-21 years) with a serious illness, chronic health condition or disability. Also provides separate online communities for the siblings and parents.
  • Children, young people, siblings, and parents can connect with others in a supportive environment.

Visit the website

Reach Out

  • Web-based service that provides young people with information, support, advice and connections to help them manage a range of health issues to improve their mental health and wellbeing.
  • Aims to build the skills of young people, provide information, support and referral.
  • Moderated by trained staff.

Visit the website

Epilepsy Action – 1300 37 45 37

  • Information, support and referral for families and children affected by epilepsy.

Carers Australia – 1800 242 636

  • Telephone support and referral for carers.

Lifeline – 13 11 14

  • 24 hour crisis line.
  • Provides telephone counselling and advice – free, private and confidential.

Kids Helpline – 1800 551 800

  • 24 hour crisis line.
  • Free, private, confidential, telephone counselling for children and young people aged 5-25.