In 2021/2022, we supported My Neuro Survey a UK wide survey of people living with neurological conditions. 8,500 people, including over 500 people with dystonia, took part and the results have highlighted many issues with services from delays to lifechanging treatment and care to a lack of mental wellbeing support.

Participants in the survey reported:

  • Delays to treatment and care can change your life. 55% of adults and 60% of children and young people living with a neurological condition experienced delays to routine appointments with specialists in the last year.

  • Most people with a neurological condition are unable to access the mental wellbeing support they need. 40% reported their mental wellbeing needs are not being met at all.

  • Finding out you have a neurological condition is scary and confusing. Receiving the right information and support can make a real difference. 2 in 10 were not given an explanation of their diagnosis. Almost 4 in 10 adults reported not being given any information at all.

1 in 6 people in the UK live with a neurological condition and this survey has shown that there simply isn’t the workforce or services in place to provide the support needed. This must change.

That’s why along with our partners at The Neurological Alliance, The Neurological Alliance in Scotland, The Wales Neurological Alliance and The Northern Ireland Neurological Charities Alliance we are calling on UK governments to back the 1 in 6 and establish a Neuro Taskforce, to address these problems and create real change. Please join us and sign the petition now.


You can also read the full UK-wide report or devolved nation reports below. We will be releasing a report focusing on experiences of people with dystonia in due course.

Reports – June 2022

Background – what is My Neuro Survey?

Every two years, The Neurological Alliance runs My Neuro Survey to give a picture of people's experience of care, treatment and support. The 2021/22 survey was UK wide for the first time and run in partnership with the Neurological Alliances of Scotland and Wales and the Northern Ireland Neurological Charities Alliance. There was also a version specifically for children and young people with a neurological condition. Over 8,500 people, including over 500 with dystonia, shared their experiences. Now we’re using the results to push for real change for the 1 in 6 people with a neurological condition in the UK.

About 1 in 6

According to a 2019 Neurological Alliance publication, ‘Neuro Numbers’, 1 in 6 people live with a neurological condition. Neuro Numbers used the best available prevalence and incidence estimates to reveal there are an estimated 16.5 million neurological cases, equating to at least 1 in 6 people living with one or more neurological condition.

Thank you for all your support – let’s #BackThe1in6.



Published: 8th June 2022