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‘Invisible’ patients falling between the cracks in health service, report says


By PA News



Scots with neurological conditions and their carers are “falling between the cracks” in the country’s health system, a report has warned.

The survey, by the Neurological Alliance of Scotland (NAS), found that two out of three adults with neurological conditions report finding life difficult to cope with, and that their condition has an impact on their mental health.

The authors of the report warned that carers are at “breaking point” as the Carers’ Trust described people with the conditions, and those supporting them, as “often invisible”.

The number of adults who said their condition impacts their mental health has increased from 80% in 2022 to 87%, the survey found.

Some 64% of people polled said they were not coping well.

Over half of adults with a neurological condition feel unsupported by the healthcare system, the survey found (Anthony Devlin/PA)
Over half of adults with a neurological condition feel unsupported by the healthcare system, the survey found (Anthony Devlin/PA)

Just over half (53%) of adults with neurological conditions feel they do not get enough support, while 46% said the health system does not meet their needs.

Nearly a third of respondents (29%) said they are not managing “at all” financially.

An overwhelming 82% 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 57% providing more than 50 hours of unpaid care every week.

The NAS has made a series of recommendations to the Scottish Government, including the 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 worker.

An estimated one million people in Scotland live with a neurological condition such as cerebral palsy, Parkinson’s Disease, dementia or epilepsy.

Donald MacPhee has dystopia, a rare brain condition (The Neurological Alliance of Scotland/PA)
Donald MacPhee has dystopia, a rare brain condition (The Neurological Alliance of Scotland/PA)

Donald MacPhee, a 65-year-old who with dystonia – a rare condition that can result in painful muscle movements, 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.”

Mr MacPhee said the lack of treatment options in Scotland was “striking”.

He added: “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.”

Alice Struthers, programme director with the Neurological Alliance of Scotland, called for a ‘renewed focus’ to tackle health inequalities (The Neurological Alliance of Scotland/PA)
Alice Struthers, programme director with the Neurological Alliance of Scotland, called for a ‘renewed focus’ to tackle health inequalities (The Neurological Alliance of Scotland/PA)

Alice Struthers, programme director with the NAS, 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?”

A spokesperson for the Scottish Government said: “It is vital that people with neurological conditions feel properly supported and involved in their care.

“We are actively exploring ways to improve mental health support for people affected by long-term physical health conditions, and we have spent £3.2 million on improving the quality and access to care for people with neurological conditions across the country.

“We also recognise the incredible contribution made by Scotland’s unpaid carers, as well as the pressures many are under.

“We are continuing to invest £88.4 million per year to support unpaid carers through local authority Carers Act funding.”

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