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
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.
It’s been an incredible 20 years!
Now that we’re 20 years old, we’d like to tell you a little bit about our story. It took a while to gather a timeline together of our history and so this blog is one way we can create a public record of our achievements.
The Neurological Alliance of Scotland formed in 2004 with just three member charities, the MS Society Scotland, Parkinson’s UK and MND Scotland. Over the last 20 years we have worked together to co-ordinate priorities amongst neurological charities and to amplify the voices of people living with neurological conditions. We now stand at 54 member charities who support a wide range neurological conditions. We have achieved a huge amount on a tiny budget and we want to celebrate this in this blog.
The Migraine Trust launch new report for Migraine Awareness Week
Monday 23 September is the start of Migraine Awareness Week and The Migraine Trust is launching its latest report looking at the experience of living with migraine.
Migraine hurts in many ways beyond the physical pain - The Migraine Trust
National Care Service: Does anyone know what it is?
By Alice Struthers, Programme Director of The Neurological Alliance of Scotland
Two years down the road from the introduction of the National Care Service Bill (Scotland) to Scottish Parliament, it feels like there are as many questions unanswered as progress made. Does anyone really understand what the National Care Service is, what it includes and how it will be funded? Does anyone think that this complete structural upheaval will lead to a genuinely positive, human-rights based and dignified change in the way social care is delivered in Scotland? Will Anne’s law be implemented and protected? Will carers have rights to breaks? Will children benefit from clearer, kinder and fairer social care services? Will children’s services even be part of the NCS remit?
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