Scots with neurological conditions are being continuously let down as lengthy waiting times for diagnosis and treatment are causing a toll on their mental wellbeing.

A report by Neurological Alliance of Scotland, an umbrella organization supporting the estimated one million people in Scotland that live with a neurological condition, shows that 37% of adults and 38% of young people wait more than a year for a diagnosis.

After diagnosis, almost half of adults experienced delays to accessing neurologist appointments while four in ten reported their mental health needs were not being met ‘at all.’

Scotland’s waiting times standard states 95% of patients across all conditions should receive an outpatient appointment and 100% should receive treatment within 12 weeks but the organisation says currently only 25% of adults and 44% of children see a neurologist within 12 weeks .

Neurological Alliance of Scotland programme director, Alice Struthers, said:

“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.”

Neurological conditions, including dementia, cerebral palsy, stroke, and epilepsy, can affect every part of a person’s life according to the Neurological Alliance, making it difficult to perform daily tasks like sleeping, eating, working, and playing.

As many as 80% of the 834 participants in the 2021/22 National Neurology Patient Experience Survey said their condition negatively impacts their mental health.

Ms Struthers says people with neurological conditions can benefit from receiving the right information and support, but the research shows almost three quarters of adults did not completely understand the explanation of their condition given at diagnosis.

The Neurological Alliance has suggested mental health support should be offered to those with neurological conditions from the very beginning, at the time of their diagnosis, and for communication between primary, secondary and community care to be improved, to enable GPs to refer people when needed.

The organisation has also called for service planners to better understand how many people live with each different neurological condition in Scotland, so the right workforce can be planned.

Consultant clinical neuropsychologist, Dr Fiona Summers said:

“Change in systems is difficult but change needs to happen and we cannot continue to ignore the growing needs of a significant proportion of the population – it is unethical to do so.”

“We need to stop being reactive and start being proactive. Early support at diagnosis with treatment options appropriate of individual needs is critically important.”

The survey took place before the cost of living crisis, but the Neurological Alliance of Scotland suggests that this will exacerbate many issues for the neurological community who it says already typically face high living costs and low incomes due to their conditions.

A Scottish government spokesperson said:

“We are determined to improve the provision of neurological care, which is why we funded this important Patient Experience Survey from the Neurological Alliance Scotland. It is vital that people with neurological conditions feel enabled and involved in their care.

“Long waiting lists are not acceptable, and we offer our sympathies to all patients waiting for treatment. We are working closely with NHS Boards to get those waiting for treatment the care they need as quickly as possible. Throughout the pandemic, NHS Boards have ensured that urgent services have continued as usual.”

 

Read more: ; Young people help write epilepsy guidance; New projects to improve neurological support; New neuro plan is promising "first step"

 

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