Self-advocacy is the ability to speak up for your own needs, rights, and well-being. For carers, those who provide unpaid care and support to a family member or friend, self-advocacy is essential but often overlooked. It also includes advocating on behalf of the person you care for, ensuring their voice is heard and their needs are met, especially when they may not be able to speak up for themselves.

Caring for someone else can be physically, emotionally, and financially demanding. Without strong advocacy skills, carers may struggle to access the support, resources, and recognition needed to maintain both their own well-being and that of the person they support. By speaking up, carers can:

• Prioritising self-care: Ensure their own needs are met, including rest, time off, and mental health support.
• Navigating support systems: Access services and financial support that may be available but not always clearly communicated.
• Maintaining balance: Set healthy boundaries to avoid burnout and maintain a sustainable care relationship.
• Participating in decisions: Be a voice in decision-making processes, ensuring both their own and the care recipient’s needs are balanced and respected.
• Speaking up for others: Advocate for the rights and best interests of the person they care for, especially in healthcare, education, or social service settings where that person’s voice might otherwise be unheard.
• Educating others: Raise awareness of carers’ roles and the needs of the person they support within healthcare systems, workplaces, and communities.

Ultimately, advocacy empowers carers to provide the best possible care without sacrificing their own well-being. It helps create a more inclusive, supportive environment where both carers and the people they care for can live with dignity, respect, and proper support.

Downloadable resources

Advocating for someone with myasthenia in health-related appointments

Guidance for advocating for someone with myasthenia in welfare rights situations

Caring for yourself while caring for others