NeuroLifeNow app - Help Shape The Future of Neural Care

Expanding data and reaching seldom-heard voices: help take NeuroLifeNow to the next level


Blog by Marc Smith, Neurological Alliance Trustee and Brain and Spine Foundation CEO

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 CEO Marc Smith reports on the programme’s progress:

I’m delighted to see the first anniversary of NeuroLifeNow and proud to publish the programme’s first annual report.

Read the annual report here.

Collaboration: the powerhouse behind progress

I have at least 3 reasons to be cheerful:

  1. This milestone is validation of a programme that started as a good idea 24 months ago and that has been delivered based on principles of collaboration with like-minded organisations and people from our community, including The Neurological Alliance and its members – and of course, the 900+ respondents affected by neurological conditions.
  2. The impact that the programme has made through the evidence it has gathered demonstrates the power and potential of peoples’ stories and the value of real world insight – it has prompted a a House of Lords debate and contributed to the pledging of £50m towards neuro research.
  3. Perhaps most importantly, the overwhelmingly positive reaction and response from our community at being given the opportunity to express their feelings and share their experiences through a new platform – one which promised not only to listen, but to act. Between them, 989 respondents have completed over 2000 surveys to date.

“The NeuroLifeNow app has changed the way I can add my voice and make a difference. Being able to see the results and full report from each questionnaire means I feel heard and can really see the impact I’m making.”

One of 900 NeuroLifeNow respondents

Next steps for NeuroLifeNow

The collaboration between The Brain and Spine Foundation and The Neurological Alliance and its members shows what is possible. By sharing our resources and working together, we’re  punching above our weight.


  1. We are seeking to expand the scale of NeuroLifeNow to generate quality data sets that contribute to a co-ordinated pan-neuro data strategy that helps improve services for everyone living with any kind of neurological condition.
  2. Data & insight is the ace in the pack: we will continue to seek out, gather and report peoples’ experiences – where My Neuro Survey provides a snapshot of a fixed period of time NeuroLifeNow provides a real-time heartbeat to show what people with neurological conditions are experiencing here and now, and how this experience does or doesn’t change over time. Taken together, these data sources allow clinicians and those who commission treatment and care services to have a balanced whole-world view of the impact of neurological conditions on everyday life.
  3. We’re driving a development programme that will recruit more users and more contributors – and seek to address issues of diversity and inclusivity by reaching those seldom heard voices.

Get involved

We are very pleased to be preparing for the next iteration of the platform with the help of our community via a newly created Expert By Experience panel that will work with our team of expert partners. To find out more and get involved, contact our programme office at

Together we are stronger!