Epilepsy affects everyone in different ways. Your needs, challenges and interests as a patient will not be the same as someone else’s.
You may have challenges such as:
• Managing your medication routine and living with side effects
• Living with epilepsy and other long-term health conditions
• Trying to manage epilepsy and pregnancy or family life
• Trying to manage epilepsy and work at the same time
You will speak to lots of healthcare professionals about your life with epilepsy. And it will be important that they understand the challenges you face and how they can help.
What is self-advocacy?
Self-advocacy is about standing up for what is important to you and telling people what you want.
In short, it’s about being your own best spokesperson.
This is an important skill if you want to feel more in control. It might take time to develop. But it’s never too soon to start practising your self-advocacy skills.
What are the benefits of self-advocacy?
There are lots of benefits to learning self-advocacy skills when you have epilepsy.
Improved healthcare. You can help make sure your care and treatment plan suits your needs and priorities
- Independence and empowerment. Making informed choices can help build confidence and autonomy
- Better communication. Healthcare professionals are more likely to understand and respect your needs
- Making sure your rights are protected. Knowing your rights will help prevent against unfair treatment and discrimination
- Reduced stress. Knowing that you are asserting yourself may help you feel more in control of your circumstances, which can reduce stress.
For example:
Sarah has epilepsy and takes medication to manage her seizures. At her GP appointment, she tells her doctor:
“Since starting my new medication, I feel extremely tired and have difficulty concentrating at work. I’d like to know if there are alternative treatments with fewer side effects.”
Sarah spoke clearly about the impact her medicines had on her daily life. So her GP agreed to adjust her treatment and referred her to a specialist.
This is self-advocacy in action. Sarah recognised her needs, communicated them confidently and got the outcome she wanted.
What are the principles of self-advocacy?
There are some core principles of self-advocacy that can help you make sure your voice is heard and your needs are met.
Self-awareness
Understanding your epilepsy and things like your symptoms, medication routine and seizure patterns will help you think about your care and treatment needs.
Knowing yourself is also about knowing what your personal preferences are and what is important to you. Think about what matters to you so you can communicate this to the people that can help.
What’s important to you may include things like:
- Starting a family
- How to care for someone with epilepsy and a learning disability
- Managing epilepsy and the menopause
- Alternative treatment options, such as Vagus Nerve Stimulation (VNS), ketogenic diet or surgery for children or adults
Empowerment
This involves gaining the confidence, knowledge, and support you need to recognise your own strengths, speak up for your rights, and actively participate in decisions that shapes your life.
Find out more about what to expect from healthcare services in your area:
Rights Awareness
Knowledge is power. Knowing your rights can help make sure you are treated fairly and without discrimination. There are different types of rights.
Human rights
Every person has basic, fundamental rights and freedoms. These include the right to life, freedom from torture and the right to a fair trial.
Human rights belong to us equally regardless of our age, disability, race, religion, sex, sexuality, or other status. In the UK all public authorities, including NHS organisations, have a duty to respect and promote peoples’ human rights.
Civil and political rights
A civil or political right protects people’s freedom from unfair treatment by the government or others. These rights make sure everyone can take part in public and political life. This includes things like protection from discrimination.
Socio-economic rights
Socio-economic rights include protections for the things needed to live a dignified life. This includes things like healthcare, education, housing and employment rights.
Find out more about your rights at work.
Find out more about your rights in education.
Communication
Learning key communication strategies can help you become more assertive and help you to express yourself more clearly and confidently. This can build productive, respectful relationships and help you get what you need in any given scenario. For example, using “I” statements to focus on expressing your feelings without sounding aggressive.
For example, say “I want to try a different epilepsy medicine because this one makes me feel sick and I can’t sleep well. This is making it difficult for me to work,” rather than “You’re giving me the wrong epilepsy medicine”
Read more about communication techniques you can use to advocate for yourself.
Respect
This means respecting yourself by valuing your own voice, needs and rights, while also respecting the other person. In healthcare, it includes recognising the knowledge and expertise of the professionals caring for you.
Mutual respect can lead to can lead to shared decision making. This means working with your healthcare professionals to make joint decisions about care.
The NICE guidelines highlight the positives of shared decision making. It means that you:
- Can decide how much you want to share in decisions about your health
- Feel you have been listened to and your needs put first
- Feel happier with your care, leading to better outcomes for your health
Responsibility
Being responsible and prepared can help you focus on what your goals are and how you can achieve those goals.
For example, you may prepare for an appointment by writing down the questions you need to ask. This can help you stay focused during the appointment or meeting and help you achieve your goal.
Find out more about questions to ask your healthcare professional after being diagnosed with epilepsy.
Find out more about 10 ways to prepare for healthcare appointments.