My Neuro Survey 2025 findings published

Digital Citizen Panel member and Neurological Alliance of Scotland (NAoS) Trustee promotes the launch of MyNeuroSurvey 2025 findings

The report on neurology patient experiences – Today’s Challenges, Tomorrow’s Hope – is informed by the largest independent survey of its kind in the UK and the Republic of Ireland – the #MyNeuroSurvey. DCP member and NAoS trustee Nicky Cowsill promoted the survey across ALLIANCE networks in late 2024 to increase Scottish participation.

Nicky Cowsill said: ” The DCP was a great help to the My Neuro Survey. I was part of the working groups Comms team and it was important that we increased the participation rate across Scotland as much as possible. The DCP and ALLIANCE were incredibly supportive and helped share the My Neuro Survey and how people could get involved especially with those groups that were hard to reach “.The survey asks questions about daily life, mental wellbeing, diagnosis, treatment and support, and access to research. The 2025 report states that patients and carers are ‘falling between the cracks…and many do not feel supported by Scotland’s health system.’

Alice Struthers, Programme Director said:

“Our findings show that health and social care services are not meeting peoples’ needs. Many find day-to-day life consistently challenging, with symptoms affecting all areas of their lives, from social and recreational activities to work, study, finances, and maintaining relationships. Many people affected by neurological conditions, particularly those with conditions known as ‘multi system disorders’, still fall between the cracks and are having to cope while their needs go unmet.”

“While most neurological conditions cannot be prevented, a renewed focus on tackling some of these health inequalities in addition to healthy lifestyle choices, will have a positive impact on everyone in Scotland. The time has come to prioritise investment into building the neurological workforce and increasing service delivery. If not now, then when?”

At recent DCP Conversation Cafes it was revealed that the definition of a neurological condition was not clear for some. One in six people have a neurological condition – a condition that affects the brain, spinal cord and/or nervous system. There are over 600 neurological conditions, including dementia, ataxia, epilepsy, Tourette syndrome, Parkinson’s, multiple sclerosis, motor neurone disease cerebral palsy and migraine, which is the most common neurological condition of all, estimated to affect 15%-23% of the adult UK population.1

Emily Holmes of Neuro Hebrides and DCP member said:

My Neuro Survey has been crucial in informing the work of the Neurological alliance of Scotland, of which Neuro Hebrides are members. The findings from the 2020/2021 survey formed the Together for the One in Six Report and were the basis for the UK-wide ‘Back the 1 in 6’ campaign. The campaign also triggered the NAoS to establish a Mental Health subgroup as a who published their Recommendations for Better Mental Health Support for People Affected by Neurological Conditions earlier this year.

Find out more:

• Have a look at the NAoS website and the digital resources available here: Our members | Neurological Alliance of Scotland.

• Sign up to our monthly newsletter. Contact: Hester@scottishneurological.org.uk.

• Support people with neurological conditions by sending our Holyrood Manifesto (in final stages of development)to your MSP – sign up to receive a copy when it’s ready: Alice@scottishneurological.org.uk.

• Get involved in the next iteration (2027-8)

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