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
.png)
.png)
.png)
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
-600.png)
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
Article: Prevention of Future Deaths Report issued following death of woman with very severe ME
By Ewan Dale, trustee of NAoS and the ME Association
A Prevention of Future Deaths Report was issue by a Devon Coroner following an Inquest on the death of a 27 year old woman with very severe ME.
Bed-bound and sensitised to sound and light etc., she had increasing problems with being able to feed and was admitted to hospital 3 times. Other than tube feeding, they did not manage to meet or even recognise her needs. On one stay, a psychiatrist claimed she had an extreme case of illness behaviour.
So on each occasion, she sought to be discharged and returned home, but there was no agreement to support tube feeding at home - (apparently due to a doctrinaire imbalance in risk assessment) - and she effectively died of starvation.
There was no medical experience or recorded practice found by the hospital to apply to her care, and the need to provide sensory isolation was not met to any degree.
RSS