Find out more about the 2024 My Neuro Survey!

Everyone deserves access to the right care, treatment and support at the right time, no matter who you are or where you live. But too often this isn’t the case. By sharing your experiences in the My Neuro Survey, you help build a picture of treatment, care and support for people living with neurological conditions throughout the UK.

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. The survey is also the largest source of data we have on services for people living with dystonia. In the last survey, over 750 people with dystonia took part and dystonia was the in the top 5 most reported neurological conditions. This will be the fifth time the survey has been conducted.

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. Results from the last survey are currently being used to back our calls for a government-led Neuro Taskforce and ongoing #BackThe1in6 campaign, calling on government to improve workforce and services for everyone affected by neurological conditions. Future data will be used to build on this as well as to campaign for better services for the dystonia community and to help advocate for the resources needed to deliver effective care.

The survey is run by The Neurological Alliance (England), a coalition of more than 90 organisations in England working together to transform outcomes for the millions of people in England with a neurological condition. They are working with the Neurological Alliance of Scotland, Wales Neurological Alliance and the Northern Ireland Neurological Charities Alliance, as well as The Neurological Alliance of Ireland to publicise the survey. They have partnered with Revealing Reality to run 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 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.

As well as us Dystonia UK, The Neurological Alliances 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 reports, 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.

Taking part makes a huge difference. Thank you.

How to get involved…

Anyone who has experience of living with dystonia can take part. There are 3 different surveys. The most suitable one for you will depend on your age and whether you have dystonia or not. There is an adult’s survey – for people 18 and over with dystonia, a young people and children’s survey – for people under 18 with dystonia, and a carers’ survey – for people 18 and over who support someone with dystonia, including parents, spouses, and all types of carers and people who provide support.

You can find out full details on our survey page.

Published: 1st September 2024