patient voice
Expanding data and reaching seldom-heard voices: help take NeuroLifeNow to the next level
The Brain and Spine Foundation and The Neurological Alliance have been running the NeuroLifeNow app together for the past year. It’s a platform to support people with neurological conditions to share their stories and gather real-time data around their experience of care, treatment, support and daily living. Neurological Alliance Trustee and Brain and Spine Foundation […]
Recognising mental wellbeing needs: our response to the Government’s mental health and wellbeing call for evidence
Mental health and wellbeing affect us all, but don’t affect us all equally. People with neurological conditions are more likely to need mental health support than those without. While this is also true of people with other long-term health conditions, there is a unique, complex and often poorly understood interplay between the physical and the […]
Together we are stronger: coproduction and creating real impact
Our coproduction coordinator Jess Mansel describes how working with coproduction volunteers is shaping our campaign to improve neuro services. This week (4 – 9 July 2022) is Coproduction Week, and the theme is impact. We’ve been working with a coproduction group of 12 people who are affected by neurological conditions. Together, they are sharing their […]
Coproduction week: working together to back the 1 in 6
Rhys Holmes, who has the neurological condition superficial siderosis, joined The Neurological Alliance’s coproduction group to help develop the #BackThe1in6 campaign and help make the views and experiences of people with neurological conditions central to everything we do. For Coproduction Week (4 – 9 July 2022) Rhys tells us what being part of the group […]
Providing insight, working together: driving the neurology agenda forward in 2022
David Martin, The Neurological Alliance’s Chair of Trustees and CEO of MS Trust, writes: I recently met Sally. She is living in pain. Sally is struggling to walk and struggling to work. Her appointment to see a neurologist is months away. Sally is one of the 176,000 people with existing or suspected neurological conditions whose […]
England Rare Conditions Action Plan falls short on mental health
The Department of Health and Social Care have published the first Rare Diseases Action Plan for England, coinciding with Rare Disease Day on Monday 28 February 2022. The plan sets out the Government’s plans to improve the speed of diagnosis, access to genetic testing and how they assess access to medicines for rare conditions. The […]
