Caring for someone with IBD

Making treatment decisions

As a parent of a child with IBD, the role of treatment decisions will fall on you and your doctor. So how to make the right decisions? 

Treatment options

See the treatment options from initial to maintenance therapy from the specialist’s point of view at the Gastroenterological Society of Australia’s website.

The Crohn’s & Colitis Foundation of America has a page on understanding medications and side effects. Please note, some medications may not be available in Australia and there are differences in eligibility for medications between Australia and the USA.

Find specific information about Crohn’s disease medications at the National Prescribing Service.

Facing treatment with multiple medications? The National Prescribing Service has case studies on two people with Crohn’s disease and their experience with multiple medications. Read Mia’s story or Micaela’s story.

Find specific information about ulcerative colitis medications at the National Prescribing Service.

Treatment eligibility

Some treatments have specific criteria you need to meet to be eligible for subsidised (Pharmaceutical Benefits Scheme) use. Medicare outlines the criteria for these.

As part of assessment for some therapies, the Crohn’s Disease Activity Index (CDAI) is a tool used to quantify the symptoms of Crohn’s disease. It may be used to assess a person’s eligibility for particular treatments. An online version of this tool is available at IBD Support Australia.

Risk/benefit analysis tools

You may play an important role in helping to decide your loved one’s treatment options, so it is important to learn how to weigh up the risks and benefits of medications. 

The National Prescribing Service has put together a good page on how to understand the risks and benefits of medicines. Although it is written for the ageing population, the information is still very relevant to anyone who wants to know more about this.

The USA FDA website has a page on generally managing the risks and benefits of medicines. Please note, some medications may not be available in Australia and there are differences in treatments between Australia and the USA.

Shared decision making

Shared decision making means the patient becomes an active partner in their treatment decisions. Together with their doctor they consider their values, goals and concerns along with benefits and risks as perceived by them. Find out more about shared decision making from the Australian Commission on Safety and Quality in Health.

What is the best way to discuss treatment options with their doctor? The National Prescribing Service has put together a quick how-to list from the point of view of older people. It’s still a good resource for anyone with a chronic condition like IBD.

Put together a list of questions for your loved-one's doctor after visiting the National Prescribing Service’s site.

Getting a second opinion 

Even if a person has full faith in their doctor, sometimes they may want a second opinion. So is it time? What should you do? How do you go about it? How does it help? There can be many questions when you are considering a second medical opinion for your child or loved one with IBD. 

What are your rights in Australia? This webpage from the Mental Health Coordinating Council outlines some of the general principles in regards to patients rights with respect to medical treatment.

Medicare

What does Medicare cover? Visit the following links to see what services may be covered and speak with your loved one’s doctor for more specific information. Click here for information from the Australian Government Private Health Ombudsman.

PBS

The Pharmaceutical Benefits Scheme (PBS) provides timely, reliable and affordable access to necessary medicines for Australians. Under the PBS, the government subsidises the cost of medicine for most medical conditions. Only those eligible for the PBS will receive subsidised medication and every time you present a script to the pharmacist, you will need to provide your Medicare card and any health care concession or pension cards you have. It is important to take medication as prescribed by the doctor to remain eligible for treatment. Not picking up medications or missing treatments may impact a person’s eligibility for treatment on the Pharmaceutical Benefits Scheme (PBS).

For more information about the PBS, visit the website.