A handy resource for young people with a chronic health condition/disability

This brochure contains great information to help you including useful websites and tips to optimise your physical, emotional and sexual health. There is information about your rights and laws, alcohol and drugs and educational/vocational resources. As many of these websites offer general information, you should always talk to your healthcare team and your parents/carers to be clear about any information that is specific to you.

Health and wellbeing

Resilience

Resilience is the ability to cope with life’s ups and downs and being able to cope with and move on from an event that has a negative effect on your life. Resilience is an important area to develop, so you can deal with other setbacks in your life, whether it is about dealing with a relationship breakup, or not getting into the course you want.

Becoming resilient and building resilience

Many things can help you to become more resilient over time. These include:

• Caring and supportive family and friends
• Trying out new things. Get connected to people, teams, clubs and organisations
• Setting realistic goals and achieving them
• Being confident in yourself and your abilities
• Using your problem-solving skills such as breaking the problem down and talking it through
• Learning from your experiences and using this knowledge for future problems
• Managing your feelings. Be nice to yourself and practice positive thoughts
• Accepting that change is part of life and is often good. Use change as an opportunity to learn about doing things differently in your life
• Facing your problems. Think about overcoming them and how you can go about it
• Not giving up. Work your way through it and slowly it will get easier

Bullying

Bullying occurs when an individual or group of people deliberately upset or hurt another person and this action is repeated over a period of time.

Bullying can be a very upsetting and frightening experience for any young person. It is common and can happen to anyone.

Bullying is never okay and should never be accepted as part of life. Do speak up as there are always people who care and can help you.

Types of bullying

• Direct physical bullying – physical actions such as hitting or pushing to provoke
• Direct verbal bullying – negative language is used repeatedly to intentionally upset someone
• Indirect bullying – usually occurs behind someone’s back with the intent to humiliate or damage a person’s reputation
• Psychological/emotional bullying – intentional use of words or actions that cause psychological harm e.g. intimidation, manipulation or stalking behaviours
• Cyber bullying –when a form of technology is used to verbally, socially or psychologically bully. This may happen in chat rooms, on social networking sites or through the use of mobile phones

Getting help

There are lots of actions you can take. Most people try and deal with it themselves to start with. Even if you plan to do this, it is still a good idea to tell someone who you trust.

If it doesn’t stop, it is time to allow other people to help. Don’t let this behaviour continue.

What you can do

• Tell the person to stop
• Speak up for yourself (be assertive)  http://teenshealth.org/teen/school_jobs/bullying/assertive.html#cat20181
• Be confident and use neutral language to respond to bullying
• Walk away and ignore the behaviour
• Try to visualise the bullying looking silly so you don’t feel intimidated
• Stay calm and positive. Don’t believe what the bully is telling you
• Make new friends
• Try and keep out of the bully’s way
• Tell someone about it if it has been going on for a while
• Tell your friends, parent/carer or a teacher

If you are cyber bullied

• Don’t respond to the message or image
• Save the evidence
• Block and delete the sender
• Report the situation to the service provider
• Tell trusted people like your friends or parents/carers
• If the messages are threatening or serious, ring the police

Bullying No Way

www.bullyingnoway.gov.au

National Centre Against Bullying

www.ncab.org.au

The Alannah and Madeline Foundation

www.amf.org.au

Cybersafety Help

www.esafety.gov.au/complaints-and-reporting

https://esafety.gov.au/esafety-information/esafety-issues/cyberbullying

http://keepittame.youngandwellcrc.org.au

Other resources on health and wellbeing

Somazone

www.somazone.com.au

Health information developed by young people for young people, including help for physical, emotional and social health needs.

Reach Out

http://au.reachout.com

Information on alcohol and drugs, family and relationships, independence, school and university, sexuality and more. You can get involved in the online community through forums, blogs and special projects.

Centre for Adolescent Health

www.rch.org.au/cah

Useful information, resources and links on the Centre’s website for young people, their parents/carers and health professionals.

Better Health Channel

www.betterhealthchannel.vic.gov.au

This website offers a variety of health information on specific conditions and treatments and tips for healthy living. You can get general information on topics like relationships and sexual health. You can also search for health services near you.

Kids Health

http://kidshealth.org

A safe and private place to get accurate information and advice from medical experts about health, emotions and life

Helpful phone apps

ReachOut Worry Time

Aimed at helping young people manage stress levels, feel in control of anxiety or stress and help to develop effective methods of dealing with daily worries

Recharge

A sleep app aimed to improve mood, energy levels and overall wellbeing through a 6 week program

1 Giant Mind

A meditation app aimed at helping improve mood, energy levels and overall wellbeing through teaching meditation

Smiling Mind

An app that teaches mindfulness and meditation to help manage stress, build resilience, reduce mental health risks and manage symptoms of depression and anxiety

Headspace

A mindfulness and meditation application for stress relief

Health Engine

Helps you find and book online available GPs, dentists, physiotherapists, chiropractors and psychologists near you.

Mental health

Body image

Body image is about:

• How you see yourself
• How you think you should look
• How you present and are feeling about yourself
• A lot of people try to live up to the unrealistic images of people that are portrayed in the media. Keep in mind that how you look is affected by:
• Your genes
• How you look after your body; for example, exercise and nutrition
• Maximising your potential

We shouldn’t let other people influence how we feel about our body, but unfortunately this can happen no matter how much we tell ourselves it won’t. Living with a medical condition or disability can affect how you view your body. No matter how hard you try, (like everyone else) you can’t change certain things about how you look.

Why is positive body image important?

• Positive body image affects self-esteem: The higher your self-esteem, the easier you will find it to socialise and stay on top of daily life
• Self-acceptance: The more positive you feel about how you look, the less likely you’ll be influenced by unrealistic pressures and media images
• Healthy behaviours: Leads to a balanced lifestyle and healthier practices with food and exercise

Boosting your body image

• Don’t compare the way you look to anyone else
• Avoid negative self-talk
• Focus on your positive qualities and skills
• Say positive things to yourself every day
• Treat your body well with nutrition foods, moderate exercise and never going on dangerous diets
• Reach out for support
• You are so much more than the way you look!

For more information about body image head to:  www.completelygorgeous.com.au and  http://au.reachout.com/what-is-body-image

Self esteem

Self-esteem is about how valuable and worthwhile you feel as a person. Sometimes when you don’t feel comfortable in your skin, your self-esteem can be negatively affected. Think positive thoughts and believe in yourself and what you as a person can do.

Some useful things to consider:

• Promote feelings of calm and relaxation
• Prioritise looking after yourself
• Have a positive attitude and a good sense of well being
• Be open and communicative
• Be independent to the best of your ability and work towards better self-management skills
• Be sociable
• Develop your interests and hobbies
• Chat to your friends, healthcare team, parents/carers or support groups

For more information about self-esteem head to:  http://au.reachout.com/all-about-confidence and  www.healthdirect.gov.au/self-esteem

Tips for looking after your mental health

• Eat and sleep well
• Get physically active
• Set realistic goals
• Build coping strategies and seek help
• Reduce harmful effects of alcohol and drug use
• Change your self-talk
• Relax
• Connect with friends
• Help others
• Develop assertiveness  http://teenshealth.org/teen/school_jobs/bullying/assertive.html#cat20181
• Do something fun for yourself  www.cci.health.wa.gov.au/docs/Fun%20Activities%20Catalogue.pdf

How to access mental health help with a professional

Before you see a psychologist, you are required to see your GP and get a Mental Health Care Plan (MHCP). A MHCP entitles you to get up to 10 (6 sessions, then a review, then another 4) sessions per year covered fully or partly by Medicare depending on who you see. If you ee a psychologist privately, Medicare will only cover part of the costs depending on how much he/she charges e.g. if they charge $120 per hour, Medicare might only cover $85.

To learn more about Medicare and a MHCP, here are some helpful websites:

• www.psychology.org.au/medicare/fact_sheet/
• www.psychology.org.au/medicare/faqs/#s2

The APS Find a Psychologist service provides help in finding a psychologist that best suits your needs. This website provides a database of more than 2,400 APS registered psychologists around Australia, covering every state and territory.

www.psychology.org.au/findapsychologist/Default.aspx?mode=Issue

Other resources for mental health

Headspace

www.headspace.org.au

Headspace provides mental health and wellbeing support, information and services to young people in Australia.

Beyondblue

www.youthbeyondblue.com

Youth beyondblue specifically deals with depression and anxiety. Here you will find useful information about these conditions and how you can get help for yourself or a friend.

The Butterfly Foundation

www.thebutterflyfoundation.org.au

The Butterfly Foundation provides support to Australians suffering from eating disorders and negative body image issues. You can find information on specific eating disorders, body image, self-esteem, services and programs.

Mind Australia

www.mindaustralia.org.au

Mind is a community mental health organisation that helps people access support. Mind offers information, guidance, referrals and helps individuals gain the necessary skills, in relation to mental health and wellbeing.

Helpful phone apps and online interactive programs

The Check-in app

An app that helps with tough conversations and to know how to take the fear out of having a conversation with a friend who might be struggling.

Music eScape

Helps young people identify, express and modify their mood using music. A great tool to help improve the mental health and wellbeing of young people.

e-couch

https://ecouch.anu.edu.au

Self-help program for depression, anxiety and worry, relationship breakdown and grief and loss.

Mood Gym

https://moodgym.anu.edu.au

Interactive program that teaches skills and coping strategies for people with depression.

Brave

www.brave-online.com

An online program to help manage worry and anxiety.

Sexual health

Sexual health is about having good sexual health practices to prevent unwanted pregnancies and sexually transmitted infections (STIs). STIs are passed on through unprotected sexual activity.

If you’re thinking about becoming sexually active, it is always good to practice safe sex. This means more than preventing an unwanted pregnancy. It is also about protecting yourself from STIs. Have a chat with you GP about contraception and STIs, particularly in relation to your health condition. You might find that some contraceptives may not be appropriate for individuals with certain conditions.

For more information about contraception and STIs head to:

Youth Central

www.youthcentral.vic.gov.au/health-relationships/sexuality-relationships/relationships-sexual-health

Your Sex Health

www.yoursexhealth.org.au

Melbourne Sexual Health Centre

www.mshc.org.au

Kids Health

http://kidshealth.org/teen/sexual_health/

Family Planning Victoria

www.fpv.org.au/portals/young-people

Sexuality

Sexuality represents many different issues including sex, sexual feelings, and feelings of themselves as sexual beings, sexual orientation and sexual behaviour. Talk to your doctor or other medical professionals about how your medical condition or disability may affect you and your sense of wellbeing.

Fertility, genetic testing and counselling

If you are considering starting your own family in the future and have a chronic health condition/disability, you may want to look into genetic testing and see a genetic counsellor/geneticist. These individuals will help you learn more about whether your condition will be affected by having a child and the chances of having a child who might have a genetic condition.

If this is something you’re considering, have a chat to your health care team about a referral to a genetics service.

Some things to expect during an appointment are:

• Questions about your family and your own medical history
• Information about the chances of a genetic condition being passed on and how this happens
• Discussion about how pregnancy may affect your health
• Discussion about some treatment options for a genetic condition and reproductive options

For more information, check out www.gsnv.org.au

Helpful phone apps

Clue

Clue is a period tracker that helps track your cycle, mood, medications and other information

Sexual Health Guide

Provides information on a number of topics such as positive sexual health, protection and contraception, information on STIs and FAQs.

Alcohol and drugs

Tips for staying safe around alcohol

• Know what your limitations with alcohol are, particularly with your particular health condition/disability and discuss this with your health care team
• Don’t drink alone
• Eat before and while you’re drinking
• Drink water in between alcoholic drinks
• Sip instead of scull
• Avoid rounds/shots
• Look out for your mates
• Have enough money for a cab
• Try having days and weekends without drinking
• Avoid drinking if you have university or work the next day

National Drugs Campaign

www.drugs.health.gov.au

Here you will find information on specific drugs, their side effects, consequences of use as well as how to get help for yourself or a friend.

Youth Support and Advocacy Service (YSAS)

www.ysas.org.au

YSAS offers information about drugs and alcohol, day programs, outreach services and residential services and community programs.

Youth Drugs and Alcohol Advice (YoDAA)

http://yodaa.org.au

YoDAA provides information about drugs and alcohol, screening and assessment and a free 24hour line to chat with professionals.

Working It Out

www.workingitoutwithyodaa.org.au/

A digital drug and alcohol tool for young people providing help and support.

Laws and rights

It’s important to know and understand your rights when it comes to your healthcare, particularly as you start to become more independent. If there is something you are not sure of or don’t understand, ask your doctor or member of your health care team for more information.

There are also different laws and issues that you may come across. We have included some good websites to check out for more information about different laws and where you can access help.

When it comes to your rights in regards to your healthcare, you can expect health professionals to:

• Treat you in a respectful manner
• Clearly explain information so that you understand
• Involve you in any decisions about your care
• Consult with you alone as you get older
• Include your friend or family member during your appointments (if you want)
• Let you ask questions
• Respect your privacy and confidentiality (there are legal limits to this depending on your safety or the safety of others)
• Let you look at your medical record and make sure you understand it
• Let you know how to make a complaint

Confidentiality

Confidentiality is part of the law and is one of your rights. Confidentiality is defined as ‘the right of an individual to not have personally identifiable information disclosed to others without that individual’s expressed informed consent’ according to the RCH Confidentiality Policy. his means that your health information will only stay between you and your healthcare team, unless you give them permission to pass on any information.

One exception is the transfer of your care. You and your parent/carer will be involved in discussions prior to transfer with your doctor regarding your adult health service options and once a decision is mutually reached, your medical information will be provided to your receiving adult health service/s.

Health professionals can also break confidentiality if your safety or another person’s is at risk or in danger. For more information about confidentiality, head to http://au.reachout.com/confidentiality.

Consent

Consent means giving permission, agreeing to do something or letting something happen, such as staff performing treatment or a procedure on you. There are different types of consent:

• Formal: For example, signing a form if you are about to have surgery, which will outline what the surgery will involve and any risks
• Informal (implied): For example, if your doctor wants to examine your throat and you open your mouth, this is ‘implied’ consent

Some things to know:

• Young people over 18 years old are legally allowed to make their own decisions regarding their healthcare. It is a good idea to keep your support people informed such as your parents/carers and/or your partner.
• Young people under 18 years old are still legally under the care of their parents/carer. This means that sometimes decisions or permission needs to be given by your parents/carer. There are some situations where you can make your own decisions but this may depend on your level of maturity in regards to the specific decision.

Participating in research projects

There are lots of different research projects out there and some can be about specific health conditions or disease, or general health. Research projects need to go through an Ethics Committee for approval before they can be undertaken. This is to make sure that what they are doing is ethical and that the benefits of the research outweigh any harm.

If you are thinking about taking part in a research project, you should always be given information about why the research is being undertaken, your involvement, any possible risks or benefits, informing you that participation is voluntary and that you can stop your involvement at any time. Do ask questions as this will help you make an informed decision.

If you are over 18, you can consent to participate in the research project. However if you are under 18, your parents/carers will need to give consent as well.

Complaints

If you are unhappy about any aspect of your care, you have the right to bring it up with your healthcare team. You can also make a formal complaint if you are unhappy with your care. At the RCH, you may want o contact the Consumer Liaison Officer ( www.rch.org.au/quality/consumer_liaison/). As you transfer to an adult hospital, there are people you can discuss concerns with who hold equivalent roles to the RCH Consumer Liaison Officer.

Other resources for laws and rights

www.legalaid.vic.gov.au

Law Stuff

www.lawstuff.org.au

Law Stuff is a youth friendly website that provides information about laws and rights related to young people. The site covers: alcohol and cigarettes, bullying, discrimination, medical advice, privacy, sex, tattoos and voting.

Youth Law

http://youthlaw.asn.au/

Youth law is a free legal centre for young people under 25. They help with advocacy, providing legal services and address legal issues facing young people by providing a drop in service, outreach support and online skype support.

Support groups

RCH support groups directory

www.rch.org.au/supportgroups/directory

The RCH Support Groups Directory provides details of relevant support groups related to child and youth health. You can find a service that is condition specific including diabetes, arthritis or cancer, or more general such as homelessness, chronic illness or alcohol support.

ChIPS

www.rch.org.au/chips

ChIPS is a peer support program for young people aged 12–24 living with a chronic health condition. Young people start with an 8–week discussion group program with other young people. Following this, a young person becomes a ChIPPER and can attend social activities including two annual camps.

Livewire

www.livewire.org.au

Livewire is an online community for young people living with a health condition, their parents/carers or siblings. It links you with other young people who are of a similar age into a forum where discussions, activities, competitions and games take place.

Chronic Illness Support Network Database

www.chronicillness.org.au

The Peer Support Network database provides a list of organisations for different chronic conditions. These links provide information on peer support programs offered for individuals specific to their condition.

Educational and vocational resources

For more detailed information and resources about education, going to university or TAFE, undertaking an apprenticeship, or finding a job, check out the ‘Studying with a chronic health condition/disability for young people’ fact sheet on our transition website  www.rch.org.au/transition/factsheets_and_tools/Transition_Factsheets/

Australian Universities

www.australianuniversities.com.au

Australian Universities is an informative website for young people who are looking to undertake further studies when they finish Year 12.

Youth Central

www.youthcentral.vic.gov.au

Youth Central provides information on study, finding a job, moving out of home, travel, money management and rights as a Victorian.