This survey will be opening soon; currently scheduled for the 25th October 2021. Find out more about the survey before it opens below. Please check back later to take part or sign up here to receive an update direct to your inbox.

We're asking you to share your story to ensure the voice of the dystonia community is heard.

Every two years the Neurological Alliance runs My Neuro Survey – previously known as the Neurological Alliance Patient Experience survey – online and through selected outpatient clinics. The 2021 survey is UK wide and will run in partnership with the Neurological Alliances of Scotland, Wales, and Northern Ireland for the first time. This year, parents and carers of children and young people with neurological conditions can also take part in a specially created version.

Without the NHS providing robust data about the provision of services to people with rarer neurological conditions like dystonia, Dystonia UK relies on data collected in surveys like the Neurological Alliance’s My Neuro Survey. Not only does sharing your experiences highlight what's important to you, but it also provides us with much needed insights into services offered for people with dystonia, what you are and aren’t able to access and how you view the quality of your care.

We can use this information as evidence:

  • in major campaigns
  • to make the case for new and additional resources
  • to help improve services
  • to highlight the needs of the dystonia community


Does it really make a difference?

My Neuro Survey is the largest patient experience survey of people with neurological conditions – and the biggest single source of data when it comes to commissioning services for people with neurological conditions and lobbying for positive change. It makes a huge difference. The 2019 survey received over 10,000 responses from people with neurological conditions including over 500 with dystonia. The more people with dystonia who take part, the bigger impact we have demonstrating what's important to you.


What is the Neurological Alliance?

The Neurological Alliance is a coalition of more than 70 organisations in England working together to transform outcomes for the millions of people in England with a neurological condition. We work closely with The Neurological Alliance to coordinate policy and ensure that dystonia is highlighted in everything they do especially using patient stories and experiences.


How will the results be used?

The results will be collated into a report, which will be used to lobby government and healthcare bodies, including NHS bodies, to commission, fund and improve care and services for people with neurological conditions.


Who can take part?

Anyone with a neurological condition in England, Scotland, Wales or Northern Ireland can take part. The parents or guardians of children or young people with a neurological condition can fill out the young persons’ survey with them.


How long will it take?

The survey takes approximately 20 minutes to complete.


When does it close?

Friday 14th January 2022.


If you cannot complete the survey online or need it in a different language or format, call us on 020 7793 3651.