Members of the back the one in six hand-in delegation stand together. Big Ben is in the background.

My Neuro Survey 2024 Frequently Asked Questions

What is My Neuro Survey?

My Neuro Survey is the largest patient experience survey of people with all kinds of neurological conditions in the UK and the Republic of Ireland. 

  • The survey is completely anonymous and secure. 
  • The survey happens every two years.
  • Results from previous iterations of the survey have been widely used across health and care services to improve care for people with neurological conditions.
  • By taking part and sharing the survey with your community, you’ll be helping to make the case for funding and improving workforce and services across the NHS and social care.

Please help us be a louder voice for change!

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 (over 18), children and young people (under the age of 18) with a confirmed or suspected neurological condition and people who provide support or care for someone with a confirmed or suspected neurological condition, including parents, guardians and carers, in the UK or the Republic of Ireland can take part.

  • If you are filling out survey on behalf of someone else, please follow the link and choose the option to complete the 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 follow the link and 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.

Everyone needs health and social care support. Why are you asking about neurological conditions?

At least 1 in 6 people throughout the UK and the Republic of Ireland with a neurological condition – that’s any condition that affects the brain, spinal cord and/or central nervous system. If you don’t have one yourself, you probably know someone who does, even if it can’t be seen. By improving services for people with neurological conditions, we’ll improve services for everyone around them too.

What is a neurological condition?

Neurological condition is any condition that affects the brain, spinal-cord or nervous system. These conditions can affect every part of life, including how you think feel act and move.

Symptoms of neurological conditions can include pain, fatigue, bladder and bowel issues, brain fog, insomnia, reduced ability to walk, poor balance and coordination, sensitivity to noise, heat, sound or touch, low mood, mood swings, anxiety and depression.

More common conditions include: Multiple sclerosis (M.S.), Parkinson’s, Motor neurone disease (MND), Myalgic encephalomyelitis (M.E.), Fybromyalgia, Epilepsy, Migraine, Autism, ADHD and cerebral palsy to the less well known ones such as Functional Neurological Disorder (FND) and Guillain-Barré syndrome. There are over 600 neurological conditions, and we’re working to reach everyone affected.

We’re looking to reach everyone affected by neurological conditions, including adults, children and young people, and the people around them who provide formal and informal support for them (‘carers’), as well as people who may be awaiting diagnosis, or not yet have a formal diagnosis for their symptoms. 

Why should our organisation or community group share the survey?

By sharing with your communities and networks, you’ll help us reach more people, encouraging them to share their experiences. You’ll help create a bigger picture of care, treatment and support for people with neurological conditions throughout the UK, and improve services, for them, for their families, loved ones and everyone around them.

We want to make sure we create an accurate and representative picture of neurology care, treatment and support that drives equity of access to healthcare for everyone, from all backgrounds and walks of life.

More about My Neuro Survey

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, and helping to drive change and improvement in the NHS and government policy. The survey provides valuable insights that help improve services, support organisations to secure additional funding, and shape the future of neurological care. See the 2022 results here.

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.