According to new findings from My Neuro Survey - the largest patient experience survey of people living with neurological conditions, people living with dystonia across England are being failed by a health system that is struggling to meet even basic needs.

Published today by The Neurological Alliance, of which we are members, the survey reveals that just 1 in 3 respondents felt the care they receive meets their needs. The situation is especially stark when it comes to mental health support. Many people report being refused access to existing mental health services because they have a neurological condition, and yet unable to access specialist mental health support either: 

Despite the challenges, the survey also highlights the positive impact of good care when it is accessible. 72% of people said they felt comfortable speaking with healthcare professionals, and 57% reported that information was clearly explained. 

In response, The Neurological Alliance has today launched an open letter to Secretary of State for Health and Social Care, Wes Streeting, urging the Government to take urgent action for the more than 1 in 6 people living with a neurological condition in the country. The letter is timely, given the Government will soon set out its much anticipated 10 year plan for the NHS and NHS Workforce delivery plan. Despite neurological conditions affected more than 1 in 6 people, the Government has not yet committed to specific measures for people affected by neurological conditions or neurological services within these plans.

The keys calls to the secretary of state are:

• Tackle critical workforce shortages in neuroscience and associated specialties in the forthcoming workforce plan. 

• Ensure the NHS 10 year plan is supported by a specific implementation plan for services for people affected by neurological conditions.  

• Implement NHS guidance that seeks to ensuring no-one is turned away from mental health services due to their neurological diagnosis. 

• Build a health system architecture that provides much needed clinical leadership and delivers transformation of services for people affected by neurological conditions. Draw from the extensive work undertaken within the NHS England national neuroscience transformation programme, National Neuro Advisory Group optimal clinical pathways of care and relevant Getting It Right First Time (GIRFT) programmes.
• Unlock the potential of the UK Neuro Forum by providing dedicated, time-limited government funding to support its coordination and engagement activities.
  
  

As members of the Neurological Alliance, we are united with fellow charities in demanding better care and support for people living with neurological conditions. We strongly support the call for action not words.

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 2024 survey was run in partnership with The Neurological Alliance (England), Neurological Alliance of Scotland, Wales Neurological Alliance, Northern Ireland Neurological Charities Alliance and Neurological Alliance of Ireland. There was also a version specifically for children and young people with a neurological condition. Over 10,000 people, including 658 with dystonia, shared their experiences.

You can download a summary of the key findings for adults, children and young people throughout the UK here. We will be releasing a report focusing on experiences of people with dystonia in due course.

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.

Published: 25th June 2025