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The Herald Scotland
4 days ago
- Health
- The Herald Scotland
NHS Scotland: 'neurological patients falling through cracks'
Titled 'Today's Challenge, Tomorrow's Hope', the report included 1,013 responses in Scotland to a survey of adults, children and young people, and carers. A total of over half of the respondents felt unsupported by the healthcare system, while four out of five of children with a neurological condition experience frustration and anger. Authors have also warned that carers are at 'breaking point', with the Carers' Trust describing people affected and those supporting them as 'often invisible'. The Neurological Alliance of Scotland has made a series of recommendations to the Scottish Government, highlighting that greater investment is needed as an ageing population means that incidences of neurological conditions are expected to rise. READ MORE: Scotland and chronic pain: Scottish patients die in NHS queues Why Scotland's public service reform plan falls short NHS Scotland: Nearly £2 billion spent on temp nurses and midwives 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?' Alice Struthers, programme director with the Neurological Alliance of Scotland. (Image: supplied) According to the report findings, 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. 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. 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. Donald MacPhee, 65, has lived with dystonia, a rare and often misunderstood brain condition, for more than 40 years. His type of dystonia, 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. Donald MacPhee aged 65 who lives with dystonia, a rare brain condition. (Image: supplied) The married father of one from Bishopton receives regular botulinum toxin injections, however, he has found his condition has been worsening in recent years. Although Mr MacPhee has praised the care and professionalism of NHS staff, he has said the lack of treatment options has been striking and more investment in neurology is needed. He 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.' Nearly a third of respondents (29 per cent) to the new report 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. Carers have said they 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.' In March this year, the Scottish Government's five-year investment into neurology services through the Neurological Care and Support (Scotland) Framework for Action ended. 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 states that such action will lead to faster diagnoses, 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. It also outlines that this action will lead to integrated care planning- a crucial factor at key care transition points such as moving from adult to child services. Scottish Labour said the report highlights "far too many people" failed under the SNP as they said they would work to make the system more integrated. Their health spokesperson Jackie Baillie said 'This damning report shows far too many people with neurological disorders are being let down on the SNP's watch. 'Ministers must listen to these warnings from people suffering the consequences of SNP failure and act to give them the standard of support they deserve. 'Scottish Labour will ensure there is a joined-up system of support across our health and social care system for people with neurological conditions so that no-one falls through the cracks.' The Scottish Liberal Democrats have called for an expansion in support for carer's respite which they say would allow them to take a well-deserved breaks to support their wellbeing and drive down inequalities. Wendy Chamberlain MP said: 'This report sets out the heavy, human toll of the SNP's mismanagement of the health service. 'It is awful that so many vulnerable patients feel unsupported. The fact that those who look after them also feel 'invisible' is yet another sign of a government that fails to value care properly. 'We need to give unpaid carers the fair deal they deserve." The Scottish Government has been contacted for comment.
Scotsman
4 days ago
- Health
- Scotsman
'Stuck in purgatory': Scottish neurological patients and carers are 'falling through the cracks'
Sign up to our daily newsletter – Regular news stories and round-ups from around Scotland direct to your inbox Sign up Thank you for signing up! Did you know with a Digital Subscription to The Scotsman, you can get unlimited access to the website including our premium content, as well as benefiting from fewer ads, loyalty rewards and much more. Learn More Sorry, there seem to be some issues. Please try again later. Submitting... Patients with neurological conditions and their carers are 'falling between the cracks' and do not feel supported by Scotland's healthcare system, a major report has claimed. The report by the Neurological Alliance of Scotland says around two thirds of adults living with a neurological condition find it difficult to cope with life, and many say their condition has an impact on their mental health. Advertisement Hide Ad Advertisement Hide Ad Scottish ministers are now being told to urgently invest in neurology services across the country to reduce mental health distress and rising pressure on the NHS. Donald MacPhee, 65, lives with dystonia, a rare and often misunderstood brain condition. He said the 'frustrating' lack of support he receives has left him 'stuck in purgatory'. The retired Gaelic development officer from Bishopton in Renfrewshire has spasmodic torticollis, which causes the muscles in his neck to tighten and spasm without warning, forcing his head to twist painfully to one side. Donald MacPhee | Supplied He first noticed his symptoms when he was 23 and working as a language teacher in Spain. What started off as a slight neck tic soon made everyday tasks like eating, driving and socialising difficult. He receives regular botulinum injections and physiotherapy, but his condition has worsened in recent years. Advertisement Hide Ad Advertisement Hide Ad Mr MacPhee 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.' Advertisement Hide Ad Advertisement Hide Ad Mr MacPhee added: '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.' Around one million Scots live with a neurological condition. Some of the most common include cerebral palsy, Parkinson's disease, dementia and epilepsy. In total there are around 600 different conditions, many of which are rare and complex. The report surveyed 1,012 Scots, including a mix of adults, children and carers. Sixty-four per cent said they were not coping well, and 87 per cent said their condition impacted their mental health. This has increased from 80 per cent in 2022. Advertisement Hide Ad Advertisement Hide Ad A further 53 per cent said they did not get enough support and 46 per cent said the healthcare system did not meet their needs. On top of this, 29 per cent said they were not managing 'at all' financially. The economic burden of a neurological condition is estimated to cost the UK around £96 billion annually. Alice Struthers, programme director with the Neurological Alliance of Scotland, said: 'Our findings show that health and social care services are not meeting people's needs. Alice Struthers, programme director with the Neurological Alliance of Scotland | Supplied '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. Advertisement Hide Ad Advertisement Hide Ad '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 report also found 82 per cent of carers said the children in their care regularly experience frustration and anger, and they feel they are at 'breaking point'. The research also found 57 per cent of carers are providing more than 50 hours of unpaid care every week, leading to significant levels of responsibility and exhaustion. Becky Duff, Scottish director at the Carers' Trust, said: 'We are seeing an increase in both the numbers of people caring and the hours of unpaid care being provided. Advertisement Hide Ad Advertisement Hide Ad Many patients with neurological conditions do not feel supported by the NHS. | Peter Byrne/Press Association '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 recommends 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. It says these three actions will lead to faster diagnoses, reduced anxiety and mental health distress caused by long waiting times, and fewer emergency hospital admissions, which will reduce pressure on the NHS. Advertisement Hide Ad Advertisement Hide Ad Scottish Labour said the report must serve as a warning to the Scottish Government. Jackie Baillie, the party's health spokeswoman, said: 'This damning report shows far too many people with neurological disorders are being let down on the SNP's watch. Ministers must listen to these warnings from people suffering the consequences of SNP failure and act to give them the standard of support they deserve.'
Daily Record
4 days ago
- Health
- Daily Record
Dad with 'twisted neck' condition urges Scottish Government to act for invisible patients
'It's not life-threatening, but it's life-changing. I've lived with this condition for 40 years and still feel like I'm falling through the cracks.' A dad who has lived with an excruciating "twisted neck" condition for decades has issued a plea to the Scottish Government to do more for people with 'invisible' neurological conditions who are falling between the cracks. Donald MacPhee, 65, from Bishopton in Renfrewshire, suffers from spasmodic torticollis, also known as cervical dystonia — a neurological disorder that causes uncontrollable muscle spasms in the neck, twisting his head painfully to the side. The retired Gaelic development officer, who first developed symptoms while working abroad in his 20s, says the condition has robbed him of confidence, independence and everyday comfort. 'It's like being stuck in purgatory,' Donald said. 'You want answers, but you know they're not there yet. It's tough, but you have to live with it day to day.' Donald relies on regular botox injections and physiotherapy, but says even specialist neurological centres have offered little in the way of meaningful long-term treatment. 'Every NHS professional I've met has been 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. '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. '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." Donald's story comes as a damning new report said people with neurological conditions in Scotland are struggling to cope — and many feel abandoned by the healthcare system. The Neurological Alliance of Scotland's survey, Today's Challenge, Tomorrow's Hope, gathered over 1,000 responses from adults, children and carers, exposing widespread hardship and mental health strain. Key findings show 64% of adults are not coping well, while 87% say their condition negatively impacts their mental health — up from 80% in 2022. More than half feel unsupported by the NHS, and nearly one in three say they are not coping financially. It also said carers are at breaking point. More than half provide over 50 hours of unpaid care each week, while 82% say children in their care suffer regular frustration and anger from symptoms. Becky Duff of the Carers' Trust said people with neurological conditions and their families are 'still invisible,' with promises of support rarely matching reality. She said: "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 Scottish Government's five-year Neurological Care and Support Framework , which ended in March 2025, originally promised £4.5 million in funding — but only £3.2 million has been delivered so far. With Scotland's ageing population and the rise in complex neurological diagnoses, campaigners say urgent and sustained action is needed now — not later. The Alliance is calling for urgent government action, including investment in neurological services, named care coordinators, and specialist training for social care staff. Programme director Alice Struthers warned: "The time has come to prioritise investment into building the neurological workforce and increasing service delivery. If not now, then when?' Join the Daily Record WhatsApp community! Get the latest news sent straight to your messages by joining our WhatsApp community today. You'll receive daily updates on breaking news as well as the top headlines across Scotland. No one will be able to see who is signed up and no one can send messages except the Daily Record team. All you have to do is click here if you're on mobile, select 'Join Community' and you're in! If you're on a desktop, simply scan the QR code above with your phone and click 'Join Community'. We also treat our community members to special offers, promotions, and adverts from us and our partners. If you don't like our community, you can check out any time you like. To leave our community click on the name at the top of your screen and choose 'exit group'.
