Who are we?
NeuroLifeNow was launched in January 2021 as a vehicle for change. Through the innovative web-based technology, we have captured real-time evidence from people across the UK about the stark realities they face accessing treatment, support and care for their neurological condition(s). NeuroLifeNow is a research platform that unifies and amplifies your voice to drive improvements that could transform the lives of millions.
NeuroLifeNow is a social research platform owned by national charity, The Brain and Spine Foundation who collaborate with the Neurological Alliance of England to influence UK Governments and decision makers. We are tired of people with neurological conditions not getting the support they need. By coming together we can help to change that faster.
What is the platform?
Sign up and answer a few questions every two months about your access to health and care services and your wellbeing.
We’ll report back what you, and others like you, are telling us. You will be able to access this. Between January 2021- January 2022, over 1,900 questionnaires were completed. You told us that you feel invisible. That you wish UK Governments, health and care services, the benefits system and society as a whole understood the pain and unpredictability of your condition(s), along with the life-changing and life-long impacts.
What about my data?
Your data and your experiences will be anonymised – that means you cannot be identified by sharing your experiences. Only representatives from the Brain and Spine Foundation and Neurological Alliance will be able to access your data.
We hope you don’t, but you can opt out at any time.
Who built the platform?
A huge thank you to our supporters and funders for making this pilot happen. Our generous supporters include The John Swire 1989 Charitable Trust, KPMG Lighthouse, Big Gun Digital, Coca Cola European Partners, Emily Loren Design, the European Federation of Neurological Associations (EFNA), Natasha Delliston, Neil & David, Projonix, Pond Studios and Quality Health.