Patients with neurological conditions and their carers are “falling between the cracks” in Scotland’s health system, according to a report which suggests two-thirds of the one million Scots living with a neurological condition are struggling to cope.

The ‘Today's Challenges, Tomorrow's Hope’ report gathers insights spanning conditions from Alzheimer’s, multiple sclerosis, epilepsy and Parkinson’s disease to fibromyalgia, long COVID and cerebral palsy.

The report led by the Neurological Alliance of Scotland surveyed Scots about their experiences, finding over half feeling unsupported and 46% said Scotland’s health system ‘does not meet their needs’.

People living with cerebral palsy told researchers that while paediatric services are well-established, specialist adults support is largely absent and there is “little care or expertise held within general practice.”

Neurological Alliance of Scotland Programme Director Alice Struthers, says many still “fall between the cracks” trying to cope alone while their needs go unmet:

“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.

“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 findings

Hearing from 1,013 adults, children and young people, and carers, it reveals that two in three adults with a neurological condition find life difficult to cope with.

Challenges spans from interactions with healthcare services, mental health and economic impacts including financial strain and workplace discrimination.

A majority of adults responding (87%) said their condition impacts their mental health, with four in five of children experiencing frustration and anger from their symptoms.

Both people living with neurological conditions and their carers reported ‘substantial’ financial challenges.

Despite nearly half of respondents holding degree-level qualifications, 49% reported a household income below £34,999 – the lower end of the estimated salary range needed to ‘live comfortably’.

Consequently, a third of respondents say they are not managing “at all” financially, struggling to access or remain in employment due to the need for flexibility and support.

Around 53% of people living with a neurological condition in Scotland have had to leave employment because of their condition, while 33% report experiencing workplace discrimination.

One patient said:

“It makes it really difficult to find and stay in work because your employer doesn’t know how they can help you.

“Eventually they give up and let you go when there could be an easy fix.”

Over half of the carers reported providing more than 50 hours of unpaid care every week, experiencing significant levels of responsibility and exhaustion.

The report’s authors are warning that carers are at “breaking point”, with one carer explaining that they are unable to work due to caring responsibilities and “feel incredibly restricted and trapped.”

Carers Trust supported the work and its Scotland Director Becky Duff says the findings reinforce the longstanding challenges of trying to provide care and for unpaid carers’ own wellbeing:

“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.”

With the economic burden of neurological conditions to the UK estimated to be around £96bn annually, the report says investment in Scotland’s neurological and mental health workforce must now be prioritised.

Alongside its calls for greater investment as neurological conditions are forecast to rise amidst an ageing population and dementia alone set to rise by 50% by 2044, the report recommends the Scottish government improve care planning.

The authors say better integrated care planning is crucial to preventing the experiences shared by survey respondents, particularly at key transitions like moving from child to adult services.

The report says targeted investment can strengthen services, and that creating named care co-ordinators could deliver consistent and specialist support and build carer support so unpaid carers can maintain their own health.

Alongside direct benefits for patients and carers, the report’s authors emphasise that these actions would reduce pressure on the emergency services in the NHS while benefiting Scotland’s economy by helping people into employment.

Case study

Donald MacPhee who lives with dystonia, a rare brain condition which causes muscle spasm, said while it’s not life-threatening “it is life changing”:

“Things like eating or driving become hard, and you lose confidence to go out.

“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’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.”

Read more: Call to expand Huntington’s care; Racism in NHS Scotland still rampant; Using VR to understand lived experience of dementia; Chief Medic: ‘Critical connections’ priority; MS rehab levels up with virtual reality games; NHS waits pushing patients private; Harnessing a parasite to deliver drugs to the brain; Libraries offer light lift for low winter mood; Shocking violence towards NHS staff

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