Valuing the voices of lived experience
We regularly bring patients, carers and professionals together to make our local services better for the people who rely on them most. Our Patient and Carer Group meeting on 12th June was more than just a discussion, it was a powerful reminder that lived experience must sit at the heart of service improvement.
Chaired by Mike (pictured) and supported by members who brought their own personal journeys, the meetings create a space where every voice matters. Ground rules emphasise respect, listening and inclusion ensuring everyone has time to speak and be heard. This helps turn conversations into meaningful contributions that can directly influence how services evolve.
Our Manager, opened with an update on the wide range of work underway across the region. From visits to stroke units to planning similar for community teams, it was clear that the network is seeking to understand services on the ground. Importantly, patients and carers have been part of these visits, bringing their own invaluable perspectives.
There was a focus on making information more accessible, with discussions about producing a Plain English version of our annual report. Members highlighted the importance of simple language, meaningful stories and visuals ensuring information reflects real experiences and is accessible for all.
Susan Bannister (pictured) introduced herself as our new Community Clinical Lead and shared more about her
focus on life after stroke and longer-term support which resonated strongly with the group. Discussion highlighted key challenges still faced including unequal access to services, delays in support, and difficulties navigating the system.
The group also heard about our project to improve access to spasticity management. Local services vary, with gaps in access, delays in treatment and inconsistent adherence to best practice. There was recognition that patient and carer involvement in this project will be essential. Even something as simple as a patient leaflet sparked meaningful discussion, highlighting how communication methods can be improved, such as sharing information through appointment texts to reach more people.
Yvonne Trace from the MS Society shared how collaboration with charities can strengthen support for people living with neurological conditions. Mike’s own reflections on living with Multiple Sclerosis (MS) added a powerful personal perspective, reinforcing the importance of staying connected to support networks even as treatments evolve.
Our Patient and Carer Group is not just a talking shop – it is a vital partner in shaping better services. By bringing together lived experience, professional expertise and a shared commitment to improvement, the group ensures that decisions are grounded in what truly matters to servuice users. Without them, improvements risk missing the mark. With them, we can move forward with confidence knowing that our services are being designed not just for people, but with them.