LONG treatment delays for neurological conditions in Scotland are having a profound impact on people and causing a mental health “crisis”, a major new report warns.

Research by the Neurological Alliance of Scotland found 37% of adults and 38% of children and young people in Scotland waited more than a year to get a diagnosis.

Most people with a neurological condition are unable to access the mental wellbeing support they need, according to the findings, while patients said they are often not provided with meaningful information about their condition.

The report – Together for the One in Six: Findings from the My Neuro Survey in Scotland – found access to specialist nurses is “very difficult” in Scotland and experiences vary between health boards.

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The alliance has concluded urgent action must be taken to deliver care seamlessly between different parts of the health system in Scotland, address the mental health crisis, and better understand the prevalence of neurological conditions.

An estimated one million people in Scotland live with a neurological condition such as cerebral palsy, stroke, dementia or epilepsy.

The 2021/22 National Neurology Patient Experience Survey asked more than 8500 people across the UK to share their experiences, including 784 adults and 50 children in Scotland.

The research in Scotland found that nearly half of adults with a neurological condition (49%) have experienced delays to access a routine neurologist appointment and children have experienced even longer delays than adults (55%).

More than one-third of adults (37%) waited more than a year to get a diagnosis, with a similar figure (38%) for children and young people – which compares to 30% across the UK. Nearly all children and young people (95%) and 80% of adults said their neurological condition negatively impacts their mental health.

Four in 10 adults (40%) and 35% of children and young people reported that their mental health needs were not being met “at all”. And 55% of adults in Scotland said they have not been asked about their mental wellbeing in the last three years.

Only 36% of adults and 26% of children and young people "completely understood" the explanation of their condition given at diagnosis. The report highlights the “profound impact” of the Covid pandemic and warns that the cost of living crisis disproportionately affects those with neurological conditions.

Data on the number of people affected by neurological conditions in Scotland is very poor and the alliance has said all statutory bodies must prioritise action to improve this. The study also points out there is only one ME specialist nurse available in the whole of Scotland.

However, the report describes the forthcoming National Care Service as an “opportunity to reform and improve the experience of adults and children with neurological conditions and the unpaid carers who support them”. And the survey found that adults in Scotland who received information are much more likely to rate it as “excellent” when compared to the UK as a whole.

The Scottish Government, along with all the governments in the UK, is being urged to establish a Neuro Taskforce to address the problems and create real change and to better prepare for the future care and support.

A petition has been launched across the UK at tinyurl.com/BackThe1in6, calling on the UK’s health ministers to take action. The current Strategic Framework for Action on Neurological Care and Support in Scotland will run out in 2025 and the alliance said work must get under way on developing a new strategy for adults and children living with neurological conditions.

Alice Struthers, Neurological Alliance of Scotland programme director, said: “One in six people lives with a neurological condition, but we do not have the workforce or services in place to provide the support they need.

“Delays to treatment and care can change your life forever, and it is of huge concern that people living with a neurological condition in Scotland have experienced such lengthy delays for routine appointments. And it is alarming that most people with a neurological condition are unable to access the mental wellbeing support they need. Finding out you have a neurological condition is scary and confusing, and receiving the right information and support can make a real difference.

“Action must be taken to deliver care seamlessly between different parts of the health system, address the mental health crisis and better understand the prevalence of neurological conditions so we can create real and positive change for hundreds of thousands of people in Scotland.”