The second iteration of My Neuro Survey, the largest patient experience survey for people affected by neurological conditions in the UK, was launched on 22 July 2024 and closed on the 15 November 2024.
Over 10,000 people including adults, children and carers took part in My Neuro Survey 2024 across the UK.
In Scotland, we received 1,013 responses to the survey. This includes 776 responses to the adult survey, 67 responses to the children and young person survey, and 170 responses to the carers’ survey.
The message from the survey is clear, too many people living with neurological conditions and those who care for them find day-to-day life consistently challenging. The time has come to prioritise investment into the neurological workforce and increase service delivery.
We published a report of our findings and key recomendations, ‘Today’s Hope, Tomorrow’s Challenge’, in July 2025.
Key findings
- Two out of three adults say life is difficult to cope with and their condition has an impact on their mental health
- Four out of five of children with a neurological condition experience frustration and anger
- Over half of adults feel unsupported by the healthcare system
- Interactions with healthcare professionals have improved for those with the better understood conditions
- The economic impact of neurological conditions is substantial
- Carers are at breaking point with over half unable to access mental health support
Our recommendations
1. Targeted investment is urgently needed to strengthen neurology services by:
- Expanding the neurology workforce, including consultants, specialist nurses, and allied health professionals.
- Providing more localised care through networked multi-disciplinary teams. Increasing capacity for diagnostic tools, including MRI and CT scans, and recruiting more radiologists.
- Financially supporting third sector charities who already deliver specialist clinical services and meaningful social support.
This will lead to:
- Faster diagnoses, which reduce the anxiety and mental health distress caused by long waiting times and uncertainty.
- Earlier access to treatment, improving disease management and long-term outcomes.
- Timely and local access to support, including financial advice, physiotherapy, counselling, and peer support, all essential for building patient resilience.
- Fewer emergency hospital admissions, reducing pressure on acute services and delivering cost savings to the NHS.
2. Invest in named care co-ordinators to provide consistent, specialist support
Everyone diagnosed with a neurological condition should have access to a named Care Co-ordinator to provide consistent, specialist support. This is particularly necessary for people with co-morbidities and for young people moving into adult services for which no specialist services exist.
This will deliver:
- Integrated care planning, especially crucial at key transition points, such as from paediatric to adult services.
- A reduction of inequity of access to support between different conditions.
- A single point of contact, improving access to relevant professionals, including mental health support, and reducing stress and confusion for patients and families.
- Fewer emergency admissions and lower healthcare costs, by addressing issues before they escalate into crises.
3. Strengthen social care support and build system awareness of neurological needs
Improve accessibility to social care by ensuring all staff, particularly social workers, benefits assessors, housing officers, and school staff, are trained in the complexities of neurological conditions.
This will achieve:
- Stronger carer support, enabling unpaid carers to maintain their own health, stay in work longer, and reduce dependency on the welfare system.
- Faster housing adaptations, essential for safety, independence, and reducing isolation. This is particularly important for families with neuroprogressive conditions or severely disabled children.
- Improved access to financial support, including Disability Living Allowance for children, Adult Disability Payment (ADP), and flexible use of self-directed support, strengthening the resilience of both carers and those they care for, and reducing avoidable NHS demand.
- Better support in mainstream schools for children with neurological conditions or who are affected by family members living with neurological conditions, leading to greater attendance and educational attainment.
Reports
Download our full report, ‘Today’s Challenge, Tomorrow’s Hope’, detailing our key findings from My Neuro Survey and our recommendations for the Scottish Government.
Download a summary of the key findings for adults, children and young people throughout the UK here.
Download the landscape report here – further analysis with UK-wide data.
Download the technical report here – the background and rationale for the survey, its methodology, and the findings from the survey, including answers to every question.
NAoS Programme Director, Alice Struthers, ran a series of data socialisation workshops with health boards and stakeholders prior to the publication of our report. You can watch a recording of one of the sessions here.
