Please share your experiences to help magnify the voice of people living with dystonia across the UK.

The largest survey of people with neurological conditions in the UK My Neuro Survey has now launched. It takes around 20 minutes to complete, and by taking part you will help to put an end to poor care and improve treatment, services and care for people with neurological conditions. Anyone in the UK with a neurological condition can take part. Make your voice heard. Fill out the survey now.

1 in 6 people in the UK have a neurological condition – that’s any condition that affects the brain, spine and/or nervous system. When you have a neurological condition like dystonia, we know getting the right care, treatment and support at the right time can make a lifechanging difference. But there are huge levels of unnecessary variation in access and experience of care - with your help, we want to change that. But making the case for change is a challenge as there is limited evidence available about services in the UK.

We want everyone living with dystonia to have access to high quality, joined up care and support to meet their needs whoever they are, whenever they need it and wherever they live. We’re proud to be a part of The Neurological Alliance who every two years run My Neuro Survey to give an accurate picture of people’s experience of neurological care, treatment, and support across the country, a vital source of data for us to campaign with.

The 2021/22 survey includes a version for children and young people – so whatever your age, you can take part. This year is also 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 (niNCA).

We know the impact of the COVID-19 pandemic has put additional strain on overstretched services and has made it even harder to access the right treatment and support. So it is more important than ever that we make sure your voices are heard. The more responses we receive, the more effective we can be in campaigning for change and transforming health and social care for everyone living with dystonia. Taking part in My Neuro Survey makes a huge difference. In 2019, over 10,000 people took part including over 500 people with dystonia. The results from these previous surveys have been used to improve services in hospitals, develop new specialist centres, and spark debate in Parliament.

Published: 26th October 2021