Many Scots wait more than a year for diagnosis of neurological condition

More than one in three Scots are waiting more than a year to get their neurological condition diagnosed, a report has suggested.

The Neurological Alliance of Scotland said it found most people with a neurological condition are unable to access the mental wellbeing support they need, and patients said they are often not provided with meaningful information about their condition.

About one million people north of the border live with a neurological condition like cerebral palsy, stroke, dementia and epilepsy, and there an estimated 60 different conditions of which many are rare and complex.

The research, which asked 784 adults and 50 children in Scotland, found 49% of adults experienced delays to access a routine neurologist and 55% of youngsters had seen their access delayed.

And 37% of adults and 38% of children and young people in Scotland waited more than a year to get a diagnosis.

Alice Struthers, Neurological Alliance of Scotland programme director, 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.”

She said it was “alarming that most people with a neurological condition are unable to access the mental wellbeing support they need”.

“Action must be taken in Scotland 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 that we can create real and positive change for hundreds of thousands of people in Scotland,” she added.

The study found that there was only one ME specialist nurse available in the whole of Scotland, and warned that the cost-of-living crisis disproportionately affected those with neurological conditions

Dr Fiona Summers, consultant clinical neuropsychologist, wrote in the report that it was “unequitable that patients with some conditions get a more robust service than others”.

“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,” she said.

“We know that doing nothing increases poor physical and mental health making it more likely that patients will need more help and support.

“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 research also found 95% of children and young people and 80% of adults said their neurological condition negatively impacts their mental health.

Four in 10 adults and 35% of children reported that their mental health needs were not being met at all.

The report authors recommended Scotland needed to understand prevalence, deliver care seamlessly between different parts of the system, improve mental health support and prepare for the future care and support of adults and children with neurological conditions, in order to improve treatment.

The authors said the National Care Service was an “opportunity to reform and improve the experience of adults and children with neurological conditions, as well as the unpaid carers who support them”.

The Neurological Alliance of Scotland is an umbrella body of organisations that represent people with a neurological condition and those who support them.

A Scottish Government spokesman said: “We are determine 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.

“Understanding the perspectives of those who access health care in Scotland will enable us to work together to identify good practice and drive up standards.

“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.

“We are encouraged to see decreases in long waits for psychological therapies in Scotland, despite an increase in demand. We provided an additional £9 million to NHS boards to address waiting lists for PT and NHS staff have worked hard to address the backlogs. Since 2007 psychology services staffing has doubled and we continue to support the creation of new posts. We will continue to support all boards to clear mental health backlogs and meet the waiting times standard by March 2023.

“We are currently refreshing our mental health strategy and are engaging with a range of organisations to help inform our approach. This will include engaging with Neurological Alliance of Scotland and Neuropsychological leads.”