These resources were published in May 2025 as part of our project to support children and young people's voice in their epilepsy care and service - find out more about this project and explore more resources in the related content box.
Communication in appointments and service design
Children and young people have told us they have questions they'd like to ask in their appointments, but it can be tricky to speak up. Sometimes when professionals ask, “Do you have any questions?” it can feel a bit daunting or it’s hard to think on the spot about what you to ask or communicate.
This might be because:
- the question or the topic is sensitive or embarrassing
- they are really worried about the topic and it’s hard to share this
- they can’t or don’t find it easy to communicate verbally
- they are not sure if it’s ok to ask or say something
- parents and carers manage the conversations in appointments
- there is lots of jargon.
Parents and carers have told us that sometimes it is hard to explore with their children or young people what they would like to discuss before the appointment, especially if the child or young person doesn’t feel comfortable discussing it with their parent or carer.
Children, young people and professionals also discussed how important it is to make ‘small talk’ and build a relationship before getting into the discussion about health. Children and young people have said that sometimes the question like “How is school?” or “Tell me about your friends?” can actually close down communication. These may not be easy things to talk about if you have missed school because of your condition or you have experienced bullying.
About the card decks
These cards were suggested and developed by the children, young people and their families who attended the RCPCH &Us Innovation lab events. They are designed to help support communication. Sometimes it can be easier for children and young people to pick a card than to find the right words they need, especially when verbal communication is not their primary way of communicating. The responsibility then shifts to the professionals or parents / carers to explore what they would like to know or ask about this.
Click below to find out more about each card deck.
- Epilepsy topic cards
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These cards have a topic for discussion or that the child, young person might want to ask questions about
- Feelings cards
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These can be used as part of a check in at the start of an appointment or engagement activity (or a check out at the end) or used with the topic cards mentioned above to express how a child or young person is feeling about a particular issue or epilepsy topic.
Download full colour feelings cards
Download black and white feelings cards (so children and young people can colour in themselves)
- Communication styles
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These cards help establish how a child or young person would like to communicate. It is then over to you to ensure you support that child’s chosen communication method during your clinical time or workshops.
- Conversation starters
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These cards are openers that can help clinical teams, children and young people get to know each other, build trust and lay the foundation for children and young people to gain more confidence to speak up in clinical appointments. If you have been relying on the same questions about how school is or how friends are, these cards are designed for you.
- Would you rather cards
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These questions are often used in group work as an icebreaker, and could easily be used in clinic appointments, voice and engagement sessions to get people thinking and talking, without it being about Epilepsy, hospitals, health appointments or topics that might need time to warm up to.
Download full colour would you rather cards
Download black and white would you rather cards (so children and young people can colour in themselves)
- What is... cards
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These cards help to explain some commonly used terms that children and young people may be unsure about. Keep a note of other questions you frequently get asked and add them to the card deck.
How to use the cards
The cards can be used to aid discussion about individual care plans and or service improvement. They can be used flexibly by children, young people and families at home or in clinic or in clinic chats or group engagement activities.
There are blank cards in the decks so that children and young people can create their own topics, feelings or conversation starters. You may like to share them in advance to aid appointment preparation at home, or have sets printed and laminated in clinic to use where children and young people can point/pick or you can use two or three to start conversations.
They are also good for supporting service improvement conversation individually and in groups – and in your team meetings!
Remember that it is important to use non-epilepsy related cards as ice breakers as well as epilepsy topic specific cards to explore questions or experiences related to the condition.