O.T GROUP NEWS AND EVENTS
Take part in the NeuroLifeNow Survey
There are more people in the UK living with a neurological condition than cancer, heart disease or diabetes. Change is needed urgently because the current system is under-funded, inadequately resourced, and fails individuals and families too often.
The 1 in 6 Campaign
The Neurological Alliance - #BackThe1in6
According to recent data, at least 1 in 6 people living in the UK are challenged everyday with a neurological condition and struggle to receive information, support and treatment which could alleviate symptoms, improving quality of life and mental health.
In response the Neurological Alliance UK launched, in 2022, a major plan of action initiating a nationwide survey which was completed by more than 8500 people affected by a neurological condition. It raised important issues and highlighted many shortfalls within the system which included difficulties in obtaining an appointment with a Neurologist, misdiagnosis, little or unknown conditions and a lack of treatment, care and support with continued backup.
People with a diagnosis of a neurological condition are at the heart of this campaign and are asking for the Government's support in raising awareness of the many neurological conditions and the need to establish a UK Neuro Taskforce. Everyone is unique but this would ensure everyone has the right to care, at the time it is needed, offering a better framework of communication throughout the country within all medical departments.
A petition was raised to call attention to these issues and was supported by 19,000 signatures. Members were also requested to write, personally, to their MP, asking for their support. On Monday 5th June 2023 the Orthostatic Tremor UK Support Group was represented and joined others affected by neurological conditions, The Neurological Alliance Team (www.neural.org.uk/backthe1in6/) and Member Organisations to hand in this petition at the Department of Health and Social Care in Westminster. In the afternoon The Neurological Alliance held a drop-in event for MPs in Parliament, which was attended by 22 Members of Parliament or their representatives, including civil servants. It was also an opportunity to meet leaders and team members from other associated organisations.
We were all grateful for the support shown and hopefully this can be implemented into positive action. It was rewarding to meet others who were happy to offer their help and support to members of the Orthostatic Tremor UK Support Group and be able to include Scotland, having met Alice Struthers the
Scottish representative. Also, Marc Smith, CEO of the Brain and Spine Foundation (www.brainandspine.org.uk)
Together we are stronger
Marc Smith and Alyson
Alice Struthers and Alyson
A brand-new artwork has been created by the neurological community at the Westminster Neurological Alliance,a photo mosaic featuring pictures of over 300 people affected by neurological conditions from across the UK. Each picture highlights the individuality of each person’s experience and needs. The image depicts hands holding each other to celebrate the unity and strength of the neurological community.
Delivering the petition
September is Orthostatic Tremor awareness month
OT needs awareness because it’s rare, not many people have heard of it, not many people have it, and when you tell them it means you can’t stand still, not even for a minute, quite frankly, it sounds ridiculous!
“Just don’t stand still then,” imagine that, now who’s being ridiculous? How do you have a shower, how do you fill your car with petrol, cook dinner, put your make-up on, wait in line for your coffee or at the bank, not to mention occupations that involve a lot of standing. And imagine going into a panic just because you walk into a strange place and can’t see any seats, or bumping into a friend in the street and you can’t stop to chat, and no more cocktail parties for you my dear!
Orthostatic Tremor is a neurological disorder and usually needs a Neurologist, one that specialises in Movement Disorders, to diagnose it. But not all Neurologists have heard of it either, so on average, diagnosis takes 5 to 6 years from the onset of symptoms, I was lucky, only 3 years.
And there is no cure and no medication to stop the symptoms, it is a progressive neurological disorder, it's an invisible disability and it's relentless, chipping away at your quality of life, day in day out.
So in September, spare a thought for me, and those few others out there in the world with Orthostatic Tremor...
Orthostatic Tremor UK Support Group Annual Meeting
21st October 2023
We met at mid-day and enjoyed catching up and chat. Our meeting began at 2.00. A larger number than usual attended.
Our main speaker was Aaron Cox, of NeuroLifeNow. His interest is in promoting and campaigning for the lesser-supported neurological conditions such as OT.
Anita Gale reported back on the initial responses of users to the CUE 1 device. Her presentation can be found here.
Questionnaire "How does Cue help you". Link.
One member talked about his progress using CUE1. Link.
Our Newsletter editors Debbie and Andy Finnerty spoke about the newsletter.
Lucy Jung, from Charco Neurotech, was due to speak on the CUE1 device, but was unable to attend.
We came together for a meal in the evening.