Thanks to Chalk Cliff Trust funding we ran our first advisory panel in May 2026. Here is our blog all about what we asked, and what we found out.
Read on to find out about:
🏘️ Our community
Our community are people living with long term changes in their communication. Lemonade from lemons wants to make sure our work matters to our community. One way we do this is through our lived experience advisory panel. The panel consists of people living with long term changes in their communication, typically after brain injury or illness. These experiences can result in a number of different communicaiton changes or differences:
- 💬 Physical difficulties producing speech (see our blog: What is dysarthria?),
- 🤨 Changes in the ability to understand and use language (see our blog: What is aphasia?)
- 💭 Changes in thinking (cognitive) skills impacting communication
💡What we did
Our meeting was at Towner, Eastbourne in their creative Make Space room. Thanks Towner for being such a great host!
Meeting aims:
- Share our mission with panel members
- Explore panel members’ real life experiences with communication differences
- Get panel member’s opinions on community projects.
- Find out what would make the most difference to their lives?
🎓 What we learnt
We learned a lot!
Including topics we didn’t expect to cover, like playing musical instruments and how multilingualism is impacted by communication differences.
We made collages using images and key words to describe the panel’s current lived experiences.
It was striking (but not surprising) to hear how society’s collective ignorance of communication differences limits independence.
Aspects of everyday life become a mountain to climb.
📞 Phone calls were a challenge for many people in our panel.
One member described calling the GP:
📞 Receptionist: “Hello, name please?”
💬 Say your name.
📞 Receptionist: “your date of birth?”
💬 NO. Cannot say your date of birth.
✋ The receptionist can’t identify you. You cannot book a GP appointment.
But let’s be fair, it is not just GP surgeries where phone calls are a problem. As a society we are heavily biased towards spoken communication. The group also spoke about buying theatre and cinema tickets over the phone, impossible when you cannot say your long credit card number.
Panel members also raised the need to repeat medical conditions and symptoms when visiting the doctor as frustrating. Especially knowing these details are already in their medical file.
Being asked to re-tell your medical story was also experienced when accessing allied health services such as physiotherapy and speech and language therapy.
“Places aren’t joined up, they don’t talk to each other“
– J (Lived experience panel member talking about health service)
Other aspects of everyday life that came up included money, benefits and personal banking – the consensus of the room? These services are not communication inclusive.
Panel members also talked about the skills that shape their identities, like playing musical instruments, or speaking multiple languages . Two panel members spoke 4-5 languages before they had a stroke, and one was a professional musician.
Changes in Communication and physical abilities hugely impact the ability to do skills/activities that are core to us as indiviuals, as well as activities we do because we just love them!
“Things to look forward to…because it’s fun”
“Things you’d never do”.
– Lived experience panel member talking about importance of re engaging in life
🎯What the panel want us to focus on
In our final activity we asked the group what we can do to make their lives better.
Lemonade from lemons provided 6 ideas that could tackle:
- Awareness raising in wider society
- Inclusive Communication Training for community (Sussex) organisations
- Workshops for family and friends/ people with communication differences
The panel each had 7 decorated pebbles each from Eastbourne beach to vote for their favourite ideas.
We had three actions that came out top…
🥇Winner (just!) with 31% of the votes – 11 pebbles: Training for community organisations.
The group want local services they already use to be communication inclusive. Community organisations our panel would like to be more inclusive include:
- Citizens advice,
- GPs and wider health services
- Local third sector support groups e.g., stroke groups.
🥈2nd place (28% of the votes – 10 pebbles): Inclusive communication workshops for friends and family.
📣 Speech and language therapy led workshops to support friends and family to become communication inclusive in their everyday conversations.
🥉3rd place (19% of the votes -7 pebbles): Communication friendly skills workshops.
🤝 Working with other organisations e.g., arts or digital inclusion to co-produce communication inclusive opportunities for people living with communication differences to learn new skills, meet new people and just have fun!
So we have our priorities!
Now we have to make it happen.
Exciting times!
Questions? Want inclusive communication training for your workplace?
Get in touch: hello@lemonadefromlemons.co.uk