Why there's an urgent need to help the million Scots with a neurological condition

With two out of three patients finding life difficult to cope with, there is clearly an urgent need for action. The chances are that you know somebody with a neurological condition – as around one in six of us has one.

Neurological conditions affect the brain, spinal cord, nerves and muscles, and are often the result of illness or injury. They include cerebral palsy, MS, Parkinson’s disease and dementia, as well as migraines and epilepsy.

The effects range from bladder and bowel difficulties to visual impairment and whole-body difficulties. With many respondents to our survey living with conditions like ME and fibromyalgia, it is unsurprising that the biggest areas of impact include fatigue, movement difficulties, and poor sleep.

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‘Today’s Challenge, Tomorrow’s Hope’

More people are going to live with a neurological condition as our population ages. That’s why the Scottish Government and the health system need to step up now.

The Neurological Alliance of Scotland shone a light on delays to treatment and care and the crisis in mental health support back in 2022. It was the first time neurology patients’ experience data had been independently published in Scotland and is now the benchmark for how services have changed since then.

Our latest findings show that health and social care services are still not meeting people's needs, with over half of adult respondents saying they do not feel supported by the health system. We chose to title our new report “Today’s Challenge, Tomorrow’s Hope” because it is important that we recognise the scale of the challenge we face today so that we can take action to improve things for tomorrow.

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Many people affected by neurological conditions, particularly those with conditions known as ‘multi-system disorders’, are having to cope while their needs go unmet.

The findings from the survey also illustrate just how challenging it is to be a carer in Scotland, particularly when you look after someone with a long-term, chronic, unpredictable and, sometimes, life-threatening condition. Many carers are not coping well and the need to provide meaningful support to unpaid ones has never been as critical as it is now.

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More consultants and specialist nurses

We have, however, seen some improvements in the patient experience. These include more patient confidence in sharing concerns with healthcare professionals, relative happiness with appointment formats, and better satisfaction with the clarity of information provided by healthcare professionals.

But far more needs to be done. We recognise that public finances are stretched and that our recommendations require investment. However, this area is too important not to take action, and we urge the Scottish Government to act on the findings in our new report.

Greater investment across health and social care is essential. Targeted investment is urgently needed to strengthen neurology services by expanding the workforce, including consultants, specialist nurses, and allied health professionals.

Scotland needs to provide more localised care through networked multi-disciplinary teams, increase capacity for diagnostic tools such as MRI and CT scans, and recruit more radiologists.

This approach will lead to faster diagnoses, which reduce the anxiety and mental health distress caused by long waiting times and uncertainty, enable earlier access to treatment, and provide timely and local access to support, including financial advice, physiotherapy, counselling, and peer support – all essential for building patient resilience.

Cost savings

For the wider NHS, there will also be fewer emergency hospital admissions, reducing the pressure on acute services and delivering cost savings. We believe 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. And we need to 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.

There should also be faster housing adaptations, which are essential for safety, independence, and reducing isolation, improved access to financial support, and better support in mainstream schools for children with neurological conditions.

‘Shouldn’t be this hard’

In our survey, an overwhelming 82 per cent of carers reported that children in their care regularly experience frustration and anger due to their symptoms. One told us: “As a parent you really have to push hard. All the fighting is on you. It’s really exhausting. It shouldn’t be this hard – and this is when your child has been diagnosed at an early age.”

Neurological conditions are already the leading cause of ill health worldwide, and without action we are storing up major challenges for the future.

It is not a question of patching things up while ignoring the bigger picture; the time has come to prioritise investment into building the neurological workforce and increasing service delivery. For the one million patients in Scotland with a neurological condition, and their carers, we can’t afford to wait any longer.

Alice Struthers is programme director for the Neurological Alliance of Scotland, and the new report, Today’s Challenge, Tomorrow’s Hope, can be read here.