We are listening. Share your experiences. Older sikh man in conversation with his daughter. Both are smiling.

#MyNeuroSurvey: share your experiences and help improve services

Everyone deserves access to the right care, treatment and support at the right time, no matter who you are or where you live. But too often we know this isn’t the case when you live with a neurological condition – that any condition that affects the brain, spinal cord or central nervous system.

Please help build a picture of treatment, care and support for people affected by neurological conditions throughout the UK and the Republic of Ireland. Complete My Neuro Survey 2024 – launching on Monday 22 July.

The survey takes around 20 minutes to complete. It’s completely anonymous and secure.

Please take part and make your voice heard. The survey is carried out by a third party, Revealing Reality, and they must keep personal information confidential by law. By taking part you will help improve treatment, services and care for everyone affected by neurological conditions.

Please complete the survey by 15 November 2024

Click on this link

  • If you are completing the survey on behalf of someone else, please take our carers’ survey – this survey explores your experiences and the experiences of the person/people you care for.

Different ways to fill out the survey

Alternatively please get in touch with our survey partners Revealing Reality on +44(0)20 7735 8040 (standard network rates apply), or email myneurosurvey@revealingreality.co.uk to:

  • Complete the survey over the phone if this suits you better
  • Request to complete the survey in a preferred language.

Get in touch with the Neurological Alliance (England) by calling +44(0) 1923 882 590 (standard network rates apply) and leaving a voicemail, or emailing survey@neural.org.uk to request a paper copy.

Completed #MyNeuroSurvey?

Thank you. Tell everyone you know about #MyNeuroSurvey – with 1 in 6 people living with a neurological condition in the UK and the Republic of Ireland, that means everyone knows someone who has a neurological condition, even if it can’t be seen. Help us reach everyone.

If you feel able, please record a short video on your phone saying why you’re taking part in #MyNeuroSurvey. Send it to us on WhatsApp at 07596 864415 or email it to us at info@neural.org.uk and we’ll share it on social media.

Thank you.

Frequently Asked Questions

What is My Neuro Survey?

My Neuro Survey is the largest pan-neurological patient experience survey in the UK and the Republic of Ireland.

The survey is unique within the neurological field, and has been widely used across health and care services to improve care for people with neurological conditions. The 2021/22 survey ran online and in clinics across the UK, gaining over 8,500 responses.

Supporting the survey is completely free of charge and adheres to the highest levels of data protection.

The survey is kindly supported by the Association of British Neurologists (ABN), Association of Chartered Society of Physiotherapists in Neurology (ACPIN), British Paediatric Neurology Association (BPNA), British Society of Physical Rehabilitation Medicine (BSPRM), British Psychological Society Division of Neuropsychology and Royal College of Psychiatry Faculty of Neuropsychiatry. This will be the fifth time the survey has been conducted.

Who can take part?

  • Adults, children and young people (under the age of 18) with a confirmed or suspected neurological condition
  • People who provide support or care for someone with a neurological condition, including parents, guardians and carers.
  • If you are filling out survey on behalf of someone else, please complete our carers’ survey – this survey explores your experiences and the experiences of the person/people you care for.
  • If you have a neurological condition and you care for somebody with a neurological condition, please fill out both the carers’ survey and the survey that is most applicable to you – adults’ (for people over 18) or children & young people (for people under 18)

Is the survey anonymous?

Yes, the survey is completely anonymous. It is not possible to identify individual participants from their responses.

Some people worry that if they say something is wrong, their opinions will be revealed to their health team and it could affect their care. This is not correct. The survey is carried out by a third party and they must keep the information confidential by law.

Who is running the survey?

The survey is commissioned by The Neurological Alliance (England) with the Neurological Alliances of Scotland and Wales and the Northern Ireland Neurological Charities Alliance, and The Neurological Alliance of Ireland.

The Neurological Alliance (England) has partnered with Revealing Reality to administer the survey. Revealing Reality is a specialist health research agency with extensive experience of running patient surveys, with a particular focus on inclusive practice.

The Neurological Alliance (England) is a registered charity – a network of over 90 organisations working together to ensure that every person affected by a neurological condition can access the right treatment, care and support at the right time.

What topics does the survey cover?

  • You and wider life
  • The wider impact of
    • your neurological condition(s)
    • or the neurological condition(s) of the person you care for
  • Your experience and overall feelings of healthcare and your reflections

How will the data be processed?

This survey is conducted by Revealing Reality on behalf of The Neurological Alliance (England) and the other alliances in the UK and the Republic of Ireland. By answering the survey, participants will share their responses with the Revealing Reality research team. All information will be stored securely, remain anonymous, and will only be used for this research project.

All shared information will be destroyed when it is no longer needed for the project, and all data will be processed in compliance with GDPR regulations.

How will the results be used?

We will use the data to lobby government and healthcare providers, including NHS bodies, to commission, fund and improve care and services for people with neurological conditions.

The anonymised data will be collected into a report which will form the basis of our campaigning for the next two years.

What have previous surveys achieved?

The survey is unique within the neurological field, and has been widely used across health and care services to improve care for people with neurological conditions. The 2021/22 survey ran online and in clinics across the UK, gaining over 8,500 responses. The results shaped our current calls for a government-led Neuro Taskforce and our ongoing #BackThe1in6 campaign, calling on government to improve workforce and services for everyone affected by neurological conditions. Learn more here: www.neural.org.uk/BackThe1in6.