'Self-advocacy' means speaking up for your own rights, needs, and interests. This page explains how parents and carers can advocate for their and their child's needs in healthcare appointments, at school, and other situations.
Parents and Carers become advocates from the moment they begin navigating their child’s cleft journey. From healthcare appointments and treatment decisions, to nursery, school, friendships, and everyday conversations – you are advocating.
As a parent, you know your child better than anyone. Self-advocacy is about making sure your child’s needs, wishes and feelings are heard, understood, and respected. This might mean asking questions, seeking clearer information, sharing what you know about your child, or asking for the right support.
We’ve worked with self-advocacy charity Vital Projects to share simple techniques to help you feel more confident speaking up for your child.
As your child grows, you can also help them to ask questions, express how they feel, and have a say in decisions about their care and wellbeing. “You don’t have to know all the answers. Asking questions and ensuring your child’s voice is heard are important parts of being an effective advocate.”
Navigating the System: Self-advocacy workshop (40 mins)
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 that your concerns are addressed.
It might be helpful to right down questions you’d like to ask:
To help you feel more prepared, you might want to take with you:
If something is unclear, ask. You might find these phrases helpful:
If you are unsure about anything, contact your cleft team. It is perfectly acceptable to ask for clarification after an appointment.
This makes it easier to refer to information and help you feel more organised and prepared. This may include appointment letters, clinic letters, treatment plans, surgical information, school correspondence etc.
Reflect after the appointment – do you understand the next steps, do you know who to contact if you have any further questions, have all concerns been addressed and does your child understand what happens next? If you need more information, make contact and find out what you need it.
If you feel something is not quite right, trust your instincts and speak up. You know your child better than anyone. No matter what your concerns relate to – your observations are important.
Even if your concern turns out not to require further treatment, raising it allows professionals to provide reassurance and support.
Effective communication helps to build trust, encourages partnership, and ensures your concerns are understood. Advocacy does not need to involve confrontation. The most effective advocates are often those who communicate calmly, confidently, and respectfully.
Remember, asking questions and expressing concerns is not ‘being difficult’ – it is an important part of being involved in your child’s care.
Take a moment for yourself, and ask what is worrying me? Why is it important? What would I like to happen?
This is an effective way of expressing concerns without placing blame.
For example: instead of saying “The school isn’t helping,” you could say, “I’m concerned that my child’s speech difficulties are affecting their confidence in class and I’d like to discuss how we can work together to support them.”
“Could you help me understand…”
“I’d appreciate some advice about…”
The SEWR helps you communicate your needs, feelings and requests in a clear, confident and respectful way.
How to use SEWR:
| SEWR Step | What it means | Example phrase | Focus |
| S: Statement | State the facts clearly and objectively. Stick to what is happening. | “I have been waiting 30 minutes for my appointment.” | Keep it factual and neutral. |
| E: Emotion | Explain how this makes you feel. Use ‘I’ statements. | “This makes me feel anxious and concerned.” | Share your feelings respectfully. |
| W: Why | Explain why this matters to you and the impact it has. | “I have other commitments today and waiting for a long time affects my ability to plan and manage my day.” | Help others understand the impact on you. |
| R: Request | Make a clear, specific request for what you want to happen. | “I would like to know when I will be seen, or if there is a delay, please let me know.” | Be clear about what you need to move forward. |
Why SEWR works:
It helps you stay focused, be heard and build respectful conversations that lead to better understanding and outcomes.
Top tips:
The ‘Broken Record Technique’ means calmly and confidently repeating your main message when someone doesn’t listen or tries to change the subject.
| Other person says | You respond |
| I don’t think that’s necessary | I understand. This is what I need. |
| But everyone else is fine with it | I understand. This is what I need. |
| We’ve already discussed this | I understand. This is what I need. |
| Let’s talk about something else | I understand. This is what I need. |
| I can’t do that for you | I understand. This is what I need. |
Key points:
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 really appreciate everything the school has done to support my child. I’m concerned that they’re becoming less confident about speaking in class. I’d like us to work together to explore what additional support may help.”
This approach recognises positive efforts while clearly explaining your concerns.
Open questions encourage discussion and can help you gain a better understanding.
One of the most valuable communication skills you can develop is knowing when to step back and let your child ask the questions. You might encourage them to ask the first question during clinic or explain how they have been feeling. This will help them build confidence and prepare them to become more active participants in their own care.
This technique helps you encourage your child to speak up and build confidence without taking over.
Step 1: PAUSE
Step 2: PROMPT
If they need support, gently encourage rather than answer for them. For example:
Step 3: PRAISE
Recognise the effort, not just the outcome.
Key message: Confidence grows through practice, not perfection.
Speak to your Clinical Nurse Specialist or Cleft Coordinator to learn more about your child’s cleft treatment.
You can find your cleft team’s contact details here.
CLAPA has a wide range of information and support pages for parents and carers as well as young people born with a cleft.
CLAPA has a wide range of information and support pages for parents and carers as well as young people born with a cleft.
You can also contact your GP for mental health support or find a local mental health or counselling service.
These organisations can help you to understand your rights in healthcare, school, work, and beyond.
To raise concerns about an NHS service or clinician, contact:
England: Patient Advice and Liaison Service (PALS) or your local NHS complaints advocacy provider.
Wales: Llais
Scotland: Patient Advice and Support Service (PASS)
Northern Ireland: Patient and Client Council (PCC)
You can also search for ‘complaints’ on the hospital or service’s website, or ask a member of staff about the complaints process.
Cleft++ uses a specialist online platform to safely connect 10-17-year-olds born with a cleft to a trained mentor. These mentors are young adults born with a cleft and they will draw on their experiences to offer personalised support.
CLAPA Companions is a ‘pen pal’ scheme connecting young people in the UK, born with a cleft aged 6 – 15 through letters, emails, videos and audio messages.
Camp CLAPA is all about bringing together young people born with a cleft so they can make friends, have fun, and try new things whilst enjoying the great outdoors at an activity centre. We hope they will help young people to build confidence, feel better about themselves, and feel connected to their own cleft community.
Cleft Youth is a magazine for young people born with a cleft, packed with stories, activities, information about cleft and more. The magazine is aimed at under 12s but is suitable for all ages.
This section explains how parents, carers, teachers and CLAPA can support children born with a cleft in primary and secondary school. It includes information about common issues to look out for, getting extra support from the school, and other resources.
This section contains tips and advice for talking to your child about their cleft, medical appointments, and members of the Cleft Team.
