Blog

New report: Scotland’s ‘invisible’ patients and carers ‘falling between the cracks’ in health service

Patients with neurological conditions and their carers are “falling between the cracks” and many do not feel supported by Scotland’s health system, according to a major new report. The survey by the Neurological Alliance of Scotland reveals that two out of three adults find life difficult to cope with and their condition has an impact on their mental health. Authors have also warned that carers are at “breaking point”, with the Carers’ Trust describing people affected and those supporting them as “often invisible”. Over half of adults feel unsupported by the healthcare system, while four out of five of children with a neurological condition experience frustration and anger.

The Neurological Alliance of Scotland has made a series of recommendations to the Scottish Government, highlighting that greater investment is needed because an ageing population means that incidences of neurological conditions are forecast to rise. An estimated one million people in Scotland live with a neurological condition like cerebral palsy, Parkinson’s Disease, dementia and epilepsy. There are around 600 different conditions, many of which are rare and complex.
 

Alice Struthers, programme director with the Neurological Alliance of Scotland, 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?”
 

The new report, titled ‘Today’s Challenge, Tomorrow’s Hope’, included 1,013 responses in Scotland to a survey of adults, children and young people, and carers. Among adults, 64 per cent said they are not coping well, and the number of respondents who said their condition impacts their mental health has increased from 80 per cent in 2022 to 87 per cent now.

Just over half (53 per cent) of adults feel they do not get enough support and 46 per cent said the health system does not meet their needs. Nearly a third of respondents (29 per cent) say they are not managing “at all” financially, with the economic burden of neurological conditions estimated to cost the UK around £96 billion annually.

An overwhelming 82 per cent of carers reported that children in their care regularly experience frustration and anger due to their symptoms. And carers themselves are at “breaking point”, according to the report – with over half (57 per cent) providing more than 50 hours of unpaid care every week, leading to significant levels of responsibility and exhaustion.

Becky Duff, Scotland director with the Carers’ Trust, wrote in the report:
“We are seeing an increase in both the numbers of people caring and the hours of unpaid care being provided. We need to act now to ensure that those living with neurological conditions and those caring are properly supported. The findings published in this report join a body of evidence that demonstrates that there is a huge gap between the rights of unpaid carers and their daily reality. Those living with neurological conditions and those caring for them are often invisible, and this report today ensures that their voices and experiences are heard.”

 
The report comes after the Scottish Government’s five-year investment into neurology services through the Neurological Care and Support (Scotland) Framework for Action ended in March 2025. A £3.2 million investment, down from an initial commitment of £4.5 million, funded a series of collaborative projects between health boards and the third and private sectors across Scotland. The three recommendations from the Neurological Alliance of Scotland are targeted investment to strengthen neurology services, access to a named care co-ordinator to provide consistent and specialist support, and training on the complexities of neurological conditions for social care workers.

The report outlines how these three actions will lead to faster diagnosis, reducing the anxiety and mental health distress caused by long waiting times, as well as fewer emergency hospital admissions which will reduce pressure on the NHS. They will lead to integrated care planning which is crucial at key transition points such as moving from adult to child services, and critically they will build stronger and more meaningful carer support.

Donald MacPhee, 65, has lived with dystonia, a rare and often misunderstood brain condition, for more than 40 years. Donald’s type, spasmodic torticollis (also known as cervical dystonia), causes the muscles in his neck to tighten and spasm without warning, forcing his head to twist painfully to one side. His first symptoms appeared when he was just 23, while at university and working in Spain as a young language teacher.

What began as a slight neck tic soon made everyday tasks like eating, driving and socialising more difficult. The retired Gaelic development officer, from Bishopton in Renfrewshire, receives regular botulinum toxin injections, sometimes alongside physiotherapy, but has found his condition worsening in recent years.

Donald, a married father of one, praises the care and professionalism of NHS staff but says the lack of treatment options has been striking.

Donald said:
“People don’t realise how much it affects you. It’s not life-threatening but it is life changing. Things like eating or driving become hard, and you lose confidence to go out. Even simple tasks around the house are quite difficult. Fatigue, sleep problems, and the way you’re breathing, and your throat area can be affected too, so that makes it awkward for me to speak sometimes. The lack of treatment options, even in neurological centres, is striking. All have been professional and caring but the lack of knowledge of dystonia, especially at GP level, was clear. It has improved now but that’s because they’ve learned it all from me.”

“There’s not enough investment in neurology. Neurological conditions affect more people than ever, yet funding and resources are limited. It’s frustrating because better support could help people live healthier, more productive lives. It’s like being stuck in purgatory. You want answers, but you know they’re not there yet. It’s tough, but you have to live with it day to day.”