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?

As well as us, The Neurological Alliance, The Neurological Alliance of Scotland, the Wales Neurological Alliance, the Northern Ireland Neurological Charities Alliance and other neurological alliance members will use the data to campaign for improved treatment, care and support for people with dystonia and other neurological conditions.

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.

It is not possible for me to take part in the format available online, can I still take part?

Yes! Please call the survey partners 'Quality Health' on 0800 783 1775 (Freephone).

It is possible to:

  • hear and complete the survey over the phone in any language
  • ask for a paper copy to be sent to your home address
  • ask for a large print version
  • ask for an Easy Read version


Is the survey anonymous?

Yes. The survey is completely anonymous. It is not possible to identify you from your responses.


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 the survey partners 'Quality Health' on 0800 783 1775 (Freephone).