Advocacy can take many different forms and isn’t limited to broad systemic or policy changes. There can also be advocacy at the local, community or even individual level. Advocacy at the individual level is often referred to as “self advocacy.”
Self advocacy is the process of speaking up for yourself and your needs, and, if the situation calls for it, also doing what you need to, to make sure your needs are met. This can include self-advocacy with your friends, family and even your health care provider by speaking up for what you want and need.
It is important for people living with cancer and their networks to be able to speak for themselves and gain their rights as patients to bring positive change to their lives. Self-advocacy may help individuals to gain access to needed services and treatments. At a minimum, self advocacy will help you know as much as possible about your disease, its treatments, and its potential effects on your body. This can empower you to take charge of your health and help you make the most of your survivorship experience.
Advocating for the needs of other people is often easier than advocating or standing up for your own wants and needs. Key to any advocacy is having a plan with specific goals and remaining persistent and focused in that plan. Whether advocating for access to health care, workplace accommodation, or another issue of importance to you, understanding your issue and goals and developing a plan to self-advocate can help you better know and communicate what it is that you want or need.
Understand the Diagnosis: Arming yourself with information is key! It is very important that anyone who is advocating for themselves or someone else understand their diagnosis and how it affects them. With this understanding you can best communicate your or your loved one’s needs.
The treatment options: Just like understanding the diagnosis is important, so is understanding the treatment recommendations, potential side effects and any other impacts on the individual and family to help you decide and communicate what will work for you and in your own circumstances. Every individual’s wants, needs and circumstances are different. It is important that you understand yours so you can create a care plan that works best for you. To do this, make sure that you are seeking information from reputable and current sources. It may also be helpful to talk to family, friends or others who have gone through a similar experience as you. In some cases, it may mean asking for a second opinion. This can be difficult and even uncomfortable, but it’s important for you to speak up when needed so that you may feel that you have exhausted all options and resources before making such a big decision as deciding on the best course of treatment for you.
Understanding your personal preferences and needs: Once you understand the diagnosis and treatment recommendations, the next step is to understand what you, or your loved one, requires – what are your goals? Is it quality of life? Is it access to a specific treatment? Is involvement in clinical trials a consideration? These are some things to consider in your survivorship experience. Knowing what your personal wishes for care and treatment are can help you better communicate and advocate for these wishes with your cancer care team, your family and your friends.
Identifying gaps: What is standing in the way of your/your loved one’s goals? Think about what you will need to achieve your treatment and care needs. If change is needed, think about who can make those changes. Is it your physician or cancer care team? Is it your employer? Is it within your own family unit? Or is policy change required either at the hospital or government level
Tools, resources and information to help you be an effective self advocate
Good Self Advocacy Mindset
You are entitled to have the information and records about your treatment, which can help you make the best decisions about your life and your care. It can often feel uncomfortable or rude to ask your doctor or cancer care team for what you need or to push back on what your doctor has told you, but standing up for what you want and need to make informed decisions is an important part of taking control of your own survivorship experience.
Some things to ask for, and to be firm about getting from your doctor:
- A picture of your whole treatment plan upfront
- Access to your own information (pathology reports, tests results, scans)
- Timelines for receiving your diagnosis, test results, surgery (if needed), etc.
Ask your doctor for your treatment plan upfront. The kind of treatment you are offered will depend on several factors, including the type of lung cancer you have; its location, spread, and genetic changes; and the health of your lungs, as well as your overall health. This plan will be unique to you and specifically designed to achieve the best possible outcomes for your particular diagnosis. Regardless of the above factors, knowing what to expect and how to prepare for your cancer treatment will help you make decisions about what you want and need out of your treatment and help you take control of your life and care.
Ask your doctor for records. Ask your doctor to provide you with copies of any information about your diagnosis, test results, treatment plan or any other information that would be helpful for you to keep on-hand and have a record of. This can help you to be organized, informed and help you to make critical care decisions. Some people find it helpful to create a “Care Binder” where they keep all relevant information about their diagnosis, treatment, questions and answers, a record of symptoms and side effects, and any other tools or information they think will be helpful to them in their survivorship experience. This can be a helpful reference to keep at home but is also something that you can bring to each of your appointments.
Ask for speedy access to diagnosis and treatment. Getting a speedy diagnosis, quick test results and access to surgery is important to everyone’s survivorship experience. It’s important to feel comfortable in being firm in your request to have these things done as quickly as possible. The COVID-19 situation has created a backlog in healthcare services for many Canadians, including those going through diagnosis, tests or treatment for cancer. Things may not happen as quickly as you want them to. This can have a significant impact on your/your loved one’s sense of control over your survivorship experience. It will be important to take note of how you/your loved one will feel if things are delayed and to communicate that with your cancer care team and your friends and family. However, it is just as important to ask questions about the process, what to expect, and to make sure your needs are known. Some questions to ask are:
- How will backlog and delays impact your care or outcomes?
- What can you/your loved one do in the meantime to ensure your health is as optimal as possible?