My Neuro Survey: frequently asked questions

What’s in #MyNeuroSurvey for your organisation?

As a member of the Alliance, when you take part, you’ll get access to the anonymised data shared by people living with the condition you are most interested in.

If you are more focussed on one region, we hope to be able to provide regional level data too. See an example of a previous survey report here.

Not an Alliance member? Email to find out more about membership and how your organisation can benefit.

Making the case for high quality joined up care

My Neuro Survey is designed to collect information from people with neurological conditions about their experiences of treatment, care and support to:

  • Help achieve our collective goal of securing joined up care and addressing unwarranted variation in neurological treatment, care and support. 
  • Create an accurate and detailed picture of the needs and views of everybody with all kinds of neurological conditions, of all backgrounds, ages and walks of life.
  • Make the evidence-based case for providing high quality, joined up care and prompt diagnosis to people with neurological conditions.
  • Make your views and priorities heard: the results of the survey guide the Alliance’s priorities in influencing and campaigning activity. 
  • Be a resource you can use to support your own campaigning, services and strategies.

Achieving health equality

We’re particularly keen to hear from people with neurological conditions who are typically not invited to take part in research and/or people who have limited or no access to services.

This could include black, Asian and minority ethnic groups, the LGBTQI+ community, people with learning difficulties and people for whom English is a second language, refugees or asylum seekers.

How has previous survey data been used?

Previous survey data has been used to create real change:

  • In major campaigns – Many Alliance Members use the condition specific data to underpin their campaigning and inform their strategy.
  • To make the case for new resources – Sue Ryder Care used the data to support the business case for creating new centres.
  • To improve services – The data has been presented to a wide range of regional groups to inform service improvement, including:
    • Over 200 GPs in commissioning groups
    • Brighton and Sussex University Hospital Trust
    • The National Hospital for Neurology and Neurosurgery
    • Frimley Care
    • St George’s Hospital, London
  • To highlight the needs of all people with neurological conditions – Baroness Gale recently used the data in the House of Lords to show how neurological care and support varies across the country.
  • To put people with neurological conditions at the centre of professional practice – The data is presented to specialist doctors and other health care professionals including The Association of British Neurologists and the British Neuropsychiatry Association, providing unique insight.

Who is The Neurological Alliance?

Find out more about our mission, vision and values.

Ready to support #MyNeuroSurvey? Need more information?

Get in touch. Email to request a campaign pack or find out more.

Already supporting #MyNeuroSurvey?

Let us know: send a testimonial.

  • Has your organisation supported My Neuro Survey before?
  • What made you take part?
  • How did you use the results to support your own work?

We’d love to hear from people and organisations who have previously participated, who would be happy to be quoted in our marketing materials to publicise and promote the survey.

OR: Do you know someone with a neurological condition who would be happy to talk about why they chose to take part in the survey?

Or why they are planning on taking part this year?

Please get in touch: email