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An introduction to self advocacy.

As you are the expert in your own health and wellbeing, you should be fully involved in making choices about your treatment and care. It is also very important that the people involved in making decisions about you really hear what matters to you.

There will times in your life when you will particularly want to be listened to - but you should be able to get your voice heard and say what you think all of the time. Negotiating for what you want, so that you have more control over your life, is called self advocacy.

Self advocacy means that you will get your chance to:

  • say what you think and feel
  • make choices and decisions that affect you
  • be heard so you can speak out for your rights
  • work together to plan the best outcomes

However, self- advocating is not always an easy thing to do. People don’t always feel confident telling health professionals what they would really like, and they can be worried about speaking out.

This toolkit has been designed by people living with IBD to help you communicate confidently with those involved in your care to get the best results for you. It can
support you to think about, and build, the skills you need to selfadvocate.

What do I need to be able to advocate for myself?


If you don’t have the information to help develop your views or don’t know where to find it, it will be very difficult to explain them to others. This toolkit will help you find the information you need.

Communication and listening skills

These are essential to making sure your voice is heard.

Communication is more than just an exchange of information. Take time to check your understanding by asking the questions in a different way, so you can be sure that you’ve understood.

Assertiveness skills

Assertiveness is about saying what you want, but in a way which also respects the rights and feelings of others. Being able to assert your voice and ask questions or talk confidently about your concerns will help others to know how to support you. Remaining respectful of each other allows you to hold clear and concise conversations.

Working together with your IBD Team

At times, there may need to be some negotiation to reach an agreement on your care. It’s important to explain what matters to you and find ways to achieve that, or to get as close as possible to it.

You know how your condition impacts your life. Your IBD team are experts in treating the condition in a wide range of individuals. It’s really important to work together. By discussing what is possible, you’ll be able to agree a plan that you are both happy with.