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.
First UK Neuro Forum meeting begins to identify shared challenges in neurological care
This first ever UK Neuro Forum meeting was held this week. The Forum was announced by the UK Government at the end of 2024, following the #BackThe1in6 campaign led by The Neurological Alliance together with The Neurological Alliance of Scotland, Wales Neurological Alliance and the Northern Ireland Neurological Charities Alliance and supported by over 100 organisations and more than 19,000 people.
78 organisations call for urgent investment in neurological research for #BrainAwarenessWeek
This Brain Awareness Week (10-16th March) we are joining the Neurological Alliances of England, Wales and Northern Ireland to raise awareness of the critical need for more research on neurological conditions and calling on the UK Government to #InvestInNeuroResearch.
We have sent an open letter to the Secretary of State for Science, Innovation and Technology, Rt Hon Peter Kyle MP, endorsed by 74 member organisations and the four UK Alliances, calling for greater investment into research on neurological conditions. With the UK Government’s current plans for research expansion, we believe neurological conditions should be a priority in these developments. You can read the open letter here.
Brain Awareness Week 2025: #InvestInNeuroResearch
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Join us this Brain Awareness Week (10-16th March) to transform neurological condition research
NAoS trustee Claire Stevens speaks at Parkinson’s UK’s PAR-CON
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This month NAoS trustee, Claire Stevens, had the pleasure of speaking at Parkinson’s UK’s PAR-CON conference, a two day in-person and online event shaped by and for people with Parkinson’s and their carers/families.
Claire was part of the Hidden Symptoms session, giving a carer’s insight into what receiving a diagnosis of Parkinson’s and then Lewy Bodies dementia had been like for Claire and her husband. A total of 500 people watched the session and Claire has received positive feedback from the across the Parkinson’s community; there are even plans for a recording of the session to be used in upcoming lectures for medical students at the University of Dundee.
Claire was joined by Emma Edwards, a specialist Parkinson’s nurse, and Dr Robin Fackrell, a leading Parkinson’s clinician, in the Hidden Symptoms session. It is now available to watch on Parkinson’s UK YouTube channel here: PAR-CON 2024: Hidden Symptoms Session
You can also watch all of the PAR-CON sessions from across the two days on Parkinson’s UK YouTube channel here: PAR-CON 2024
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