It’s time to #BackThe1in6
1 in 6 people in the UK live with a neurological condition, but there simply aren’t the workforce or services in place to support them. This must change.
From delays to lifechanging treatment and care, to a lack of mental health support, we need Governments across the UK to back the 1 in 6, and set up a Neuro Taskforce to deliver real change.
In 2021/2022, The Neurological Alliance ran a survey – My Neuro Survey – to give a picture of the experience of care, treatment and support for people affected by neurological conditions. Over 8,500 people took part.
The UK wide survey was run in partnership with the Neurological Alliances of Scotland and Wales and the Northern Ireland Neurological Charities Alliance. There was also a version specifically for children and young people with a neurological condition.
Over 8,500 people shared their experiences and reported:
- Delays to treatment and care can change your life forever. 55% of adults and 60% of children and young people living with a neurological condition experienced delays to routine appointments with specialists in the last year.
- Most people with a neurological condition are unable to access the mental wellbeing support they need. 40% reported their mental wellbeing needs are not being met at all.
- Finding out you have a neurological condition is scary and confusing. Receiving the right information and support can make a real difference. 2 in 10 were not given an explanation of their diagnosis. Almost 4 in 10 adults reported not being given any information at all.
1 in 6 people in the UK live with a neurological condition but there simply isn’t the workforce or services in place to support them. We are calling on UK governments to back the 1 in 6 and establish a Neuro Taskforce to address these problems and create real change.
Why a Neuro Taskforce?
There are currently a variety of initiatives that seek to address shortcomings in treatment, care and support for people affected by neurological conditions.
These include the planned UK wide Acquired Brain Injury strategy, the Scottish Government’s Framework for Action on Neurological Care and Support, a new quality statement and operational plan for neurological conditions in Wales, an ongoing Neurology Review in Northern Ireland, the NHS Scotland Centre for Sustainable Delivery Neurology workstream, the NHS England and NHS Improvement (NHSE/I) neuroscience transformation programme and the Getting It Right First Time (GIRFT) adult neurology, stroke and neurosurgery reports.
At present there is insufficient coordination of such initiatives, little leadership or prioritisation at the highest levels of Government to support their implementation and very limited opportunities to share learning across systems. Responses to My Neuro Survey highlighted many common challenges in improving access to treatment, care and support for the 1 in 6 people in the UK who live with a neurological condition.
The Taskforce would provide a framework to support greater collaboration and sharing of best practice in the approaches taken to tackle these common problems. It would build on similar policy approaches in health and care, such as the recent Rare Disease Framework and associated implementation plans.
Fundamentally, and most importantly, it would help to show that governments across the UK are listening to people affected by neurological conditions.
Why 1 in 6?
According to our 2019 publication, Neuro Numbers one in six people live with a neurological condition. Neuro Numbers used the best available prevalence and incidence estimates to reveal there are an estimated 16.5 million neurological cases, equating to at least 1 in 6 people living with one or more neurological condition.
Learn more and read the reports in full
Learn more about the results from My Neuro Survey and download the complete report and datasets here.