I need support for chronic or ongoing illnesses or health conditions
Understanding chronic or ongoing health conditions
What is a chronic or ongoing health condition?
A chronic condition is a health condition that affects someone for a long time. Common chronic conditions include asthma, diabetes, heart disease, chronic fatigue, chronic anxiety, and epilepsy, as well as many others.
If you’re living with a chronic condition, you likely have a regular General Practitioner (family doctor) who might be the primary doctor involved in your care.
You may also see Specialists, Paediatricians, and other health professionals that can help you manage your condition.
They will work with you over time, regularly checking in with how you are managing your illness, any changes to your symptoms, and the impact on other aspects of your life.
Having a good relationship with your doctor is important.
Having a health team that you trust and who you can communicate clearly with you helps you to feel confident in being supported to manage your illness.
Your doctor and health team are a great source of information to help you understand your condition and treatment better.
When seeing health professionals, it is important that you feel heard and health professionals communicate information in a way that is easy for you to understand.
This partnership allows you to build trust and have your concerns and needs addressed. You are the expert in how your illness impacts you and your life.
If you have a chronic health condition, your condition might change over time through different stages of your life – particularly through your teenage years.
Keep track of any changes and speak to your doctor about how the treatment can be managed or adjusted due to these changes.
Learning about your treatment is a good step towards feeling confident and achieving independence.
For more information about managing chronic illness visit Health Direct.
Transition is the time when you leave children’s health services (paediatricians or children’s hospitals) and start seeing adult health care services (specialists that focus on care for those above 18 years old).
It is a gradual process starting from diagnosis and during your teenage years you are encouraged to start taking on more of your own health responsibilities and self-management.
This can include seeing your doctor alone for part of the consultation, providing you with the knowledge to be more independent in managing your chronic condition, arranging referrals to see adult health providers, and making sure that you see them for regular appointments.
Health transition often happens at the same time as many other changes in areas of your life, such as leaving high school and becoming an adult so coordination of care is very important.
Transitioning to the adult health care system helps you to be in charge of your health and feel confident about manage your condition.
You will have the opportunity to be at the centre of all the conversations with doctors and health care workers and you will be able to make the decisions in discussion with your team about your health and treatment.
By beginning the transition process early, you will develop the knowledge and skills necessary to manage your own health care and be ready for your new adult team.
If you have any questions or concerns about transition planning, talk to your doctor about these concerns so that they can be addressed.
For more information and support with transition planning:
When you visit a doctor, consider your support and accessibility needs. These might include:
Physical support needs.
Including access to the service and aids used for mobility. Check that the health service is accessible when you phone them to make an appointment. For more information on making an appointment see Visiting the doctor.
Communication support needs.
Using a public health service also provides you with the right to use the NSW Health Care Interpreting Service. They can provide interpreting services 24 hours a day, 7 days a week onsite and over the phone interpreting in over 120 languages, including Auslan (sign language of the Australian deaf community). The health service is responsible for organising this for you, but if possible, let them know beforehand that you might need to access this support.
Emotional support needs.
Frequently support is needed for anxiety or mental health distress when approaching or planning an appointment. A support person is always welcome to provide support for you at the doctor or health appointment. You can also see Headspace or Beyond Blue for online, over the phone or face to face mental health support.
NDIS is the National Disability Insurance Scheme that funds people with chronic conditions or disabilities to plan and provide the support they need to participate in the community. These supports help to maintain health improve quality of life and wellbeing.
Transport and mobility needs.
EnableNSW is a government-funded business unit that provides programs (such as aids and equipment) and support services to people in NSW with chronic health conditions or disability to help with mobility, communication and self-care. You might be able to get financial assistance towards your travel and accommodation costs from their Travel Assistance (IPTAAS) support service if you live in a regional area and need to see a specialist doctor in another area or city that is not available locally.
Support organisations for specific chronic and ongoing illness:
- Canteen– Young people living with cancer
- Asthma Australia – Young people living with Asthma
- Cystic Fibrosis Australia – Young people living with Cystic Fibrosis
- Butterfly Foundation – Young people living with an eating disorder
- SCHN Trapeze– Transitioning to the adult health system
- Livewire– Teens living with serious or chronic conditions
- My Diabetes– Young people living with diabetes
- PainBytes– Young People living with chronic pain
- Chronic Illness Peer Support (CHIPS)– SCHN, Westmead and Randwick
- First Peoples Disability Network– Nation Human Rights Organisation of and for Australia’s First Peoples with disability, their families and communities
- Allergy and Anaphylaxis Australia – Young people living with allergies or anaphylaxis
- Chron’s and Colitis Australia – Young people living with Chron’s disease or colitis
- Ehler Danlos Support Australia – Young people living with Ehlers-Danlos Syndrome