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We want you! My Neuro Survey is now open

22/07/2024

22 July 2024

People living with neurological conditions across the UK and Ireland are being asked to take part in the largest neurological survey to help improve vital services and support.

The Neurological Alliance – a leading coalition of over 90 charities working to transform quality of life for people with neurological conditions – runs My Neuro Survey every two years to gain invaluable insights into care, treatment and support across the country. This year, for the first time, we are launching a new survey looking at the experiences of friends and family of people affected by neurological conditions too (also known as “informal carers”).

Partnering across the UK and Ireland

The Neurological Alliance (England) has partnered with The Neurological Alliance of Scotland, The Neurological Alliance Wales, The Northern Ireland Neurological Charities Alliance, and, for the first time, The Neurological Alliance of Ireland and Revealing Reality, a social research company, to produce the surveys.

Why is having your say important?

One in six people have a neurological condition – a condition that affects the brain, spine and/or nerves. There are over 600 neurological conditions, including dementia, ataxia, migraine, epilepsy, Tourette syndrome, Parkinson’s, multiple sclerosis, motor neurone disease and cerebral palsy.

The survey – which had over 8,500 responses in 2021/22 – asks questions about daily life, mental wellbeing, diagnosis, treatment and support, and access to research.

Your experiences help to build an accurate picture of the quality of treatment, care and support for people with neurological conditions. They will help show where access to and quality of care is good, and where it is lacking or could be improved. Previous survey results have been used to improve services in hospitals, develop new specialist centres, support business cases for new healthcare professionals and spark debate in Parliament.

Georgina Carr, CEO, The Neurological Alliance, said:

“Everyone’s experience of life with a neurological condition is unique, and that’s why we want as many people as possible to fill in the My Neuro Survey. We know that people across the country are not always able to access the right treatment and support, and the costs of living crisis has made the impact of neurological conditions even greater. It has never been more important to make your voice heard.

“The more responses we receive, the more effective we can be in campaigning for change and improving care and support for people with neurological conditions across the country. We believe everyone should have access to quality, joined up neurological care, whoever they are, wherever they live.”

How do I take part?

There are three ways people can fill in the surveys:

  • Online, through this link
  • By requesting a paper copy:
  • By phone by calling Revealing Reality on +44(0)20 7735 8040 (standard network rates apply). Please also call Revealing Reality if you would like to complete the survey in a language other than English or Welsh.

Thank you!