We involve our community in shaping and improving our services at every level. Our support groups are led by people with aphasia and additional volunteers who understand the challenges our members face; ensuring our services remain person-centred and responsive to need.

We hold monthly Peer Leader meetings where leaders can share feedback, discuss challenges and help shape future plans. We also have an active Peer Leader WhatsApp group, which we use to gather opinions through discussions and polls before making decisions or changes that may affect groups or members. This ensures the voices of people delivering and accessing our support are central to our decision-making.

We ask members (service users attending the support groups) to complete an annual aphasia-friendly satisfaction survey, giving people with aphasia the opportunity to tell us how our support groups benefit them and where improvements can be made. We carefully review this feedback and use it to develop and adapt our services.

Community feedback directly influences how we operate. For example, one peer leader suggested improving our “I Have Aphasia” cards by adding space on the back for emergency contact details, which we have now implemented. We have also moved some groups to new venues after members told us spaces were too echoey or too small for growing attendance. Members have also requested additional activities such as art sessions, singing groups and guest speakers, which we have introduced to make groups more engaging and inclusive.

We actively involve our wider community through volunteering opportunities. People with aphasia, family members, supporters and local residents contribute as group assistants, creative-writers collecting members’ experiences, photographers, videographers, social media and PR volunteers and outreach volunteers. These opportunities help people build confidence, develop skills and play an active role in strengthening the aphasia community as well as raising understanding of aphasia.

We also work closely with local Speech and Language Therapy (SLT) teams, hospitals, Headway, social prescribers and other organisations supporting people with aphasia (PWA). Through quarterly meetings with these professionals in the counties where we operate, we help strengthen referral pathways and improve long-term support for people living with aphasia after discharge from hospital.