Self-advocacy for adults

Appointments can often feel rushed, particularly if there is a lot to discuss. Spending a few minutes preparing beforehand can help you feel more confident and ensure your concerns are addressed.

Before your appointment think about:

• What do I want the team to know?
• What questions do I have?
• What would I like to happen after today’s appointment?

There is no such thing as a silly question. Healthcare professionals expect people to ask questions and want patients to feel involved in decisions.

Many adults find it helpful to keep all information about their cleft journey together. This might include clinic letters, treatment plans, surgical information, speech or hearing reports, dental information and questions for future appointments.

Having information organised can help you feel more prepared and makes it easier to refer to previous discussions.

If something is unclear, ask. You might find these phrases helpful: 

• “I’d like to understand this a little better.” 
• “Could you explain that in a different way?” 
• “What are the benefits of this option?” 
• “Are there any alternatives?” 
• “What happens if I decide to wait?” 
• “Can I have some time to think about this before making a decision?” 

If you are unsure about anything, contact your cleft team. It is perfectly acceptable to  

ask for clarification after an appointment. 

Sometimes people leave appointments feeling uncertain, overwhelmed, or worried that they forgot to ask something. This is completely understandable. You do not have to have every answer immediately. Good healthcare is built on ongoing conversations – not just one appointment. 

Being an effective self-advocate means building positive relationships with the professionals involved in your care while ensuring your own voice remains at the centre of every decision.

Remember, you are the expert in your own lived experience. Healthcare professionals bring clinical expertise, but you bring knowledge of your experiences, priorities, and goals. When these work together through shared decision-making, the best outcomes can be achieved. 

If something doesn’t feel right, trust your instincts and speak up, your observations are important. Even if your concern turns out not to require further treatment, raising it allows professionals to provide reassurance, advice and support.

The SEWR helps you communicate your needs, feelings and requests in a clear, confident and respectful way.

How to use SEWR:

• Use each step to build your message
• Keep it calm, clear and positive
• Practice – it gets easier with time!

Why SEWR works:

It helps you stay focused, be heard and build respectful conversations that lead to better understanding and outcomes.

Top tips:

• Stay calm and confident
• It’s okay to repeat your SEWR message
• Listen to the response and continue the conversation
• You have the right to be heard and involved in decisions

The ‘Broken Record Technique’ means calmly and confidently repeating your main message when someone doesn’t listen or tries to change the subject.

Key points:

• Stay calm and confident
• Repeat your message clearly
• Avoid arguing or over-explaining
• Keep going – your needs matter

Why it works

Repeating your message like a ‘broken record’ helps you stay focused on your needs and shows others that you are clear, calm and confident in advocating for yourself.

Remember: you have the right to be heard, respected and involved in decisions about your life.

The Sandwich Technique can be particularly useful when discussing concerns with professionals or schools.  

Start with something positive. Raise your concern. Finish by focusing on working together.  

For example: 

“I appreciate the time the team has taken to explain the treatment options. I’m still concerned that I don’t fully understand how the proposed surgery may affect my speech and recovery. I’d like us to go through this again so I can make an informed decision.” 

A workplace example might be: 

“I value the support my manager has already provided. I’m finding it difficult to contribute during large online meetings because of the sound quality and people speaking over one another. I’d like us to explore whether any adjustments could make it easier for me to participate.” 

This approach recognises positive efforts while making sure your concern and requested outcome are clearly understood. 

“I” statements are a simple but effective way of expressing concerns without placing blame. They help others understand how a situation is affecting you while keeping conversations positive, respectful and solution focused. 

Examples:

Instead of saying: “You never explain things properly.” 

Try saying: “I’d appreciate a little more information so I can understand the treatment plan.” 

Instead of saying: “No one is listening to me.” 

Try saying: “I’m concerned that my views haven’t been fully understood, and I’d like the opportunity to explain what matters most to me.” 

Other useful examples include: 

• “I’m worried about…” 
• “I’d like to understand…” 
• “I’m finding it difficult to…” 
• “I’d appreciate some advice about…” 
• “Could you help me understand…” 
• “I’d like some time to think about this.” 
• “I’d like to discuss the options available to me.” 

These small changes can encourage open discussion, reduce defensiveness, and help keep the conversation focused on finding a solution.