Will you #BackThe1in6?

As a member of The Neurological Alliance, Ataxia UK supports their mission to ensure that public policy in health reflects the realities of living with a neurological condition, and everyone with a neurological condition can access treatment, care and support whenever they need it.

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.

From a lack of mental wellbeing support, delays to treatment and care and a lack of information and support at diagnosis, over 8,500 people living with or affected by neurological conditions, including ataxia, across the UK shared their experiences in the 2021/22 My Neuro Survey, which closed in March 2022.

#BackThe1in6

Now we are joining the Alliance in calling on UK governments to back the 1 in 6 and establish a Neuro Taskforce to address these problems and create real change.

Sign the petition

Sign the petition calling on all UK governments to come together and create a Neuro Taskforce at www.tinyurl.com/BackThe1in6.

The more signatures we get, the greater the opportunity for creating real change.

#BackThe1in6 for better information and support at diagnosis

We know that finding out you have a neurological condition is scary and confusing. And we also know that receiving the right information and support can make a real difference.

2 in every 10 survey respondents reported not being given an explanation of their diagnosis. Almost 40% of adults were not given any information at all.

Access to information and support at diagnosis could be improved, but instead it is getting worse. In 2018/19 11% of respondents to My Neuro Survey reported not being given an explanation when they were diagnosed. In 2021/22 it’s 20%.

#BackThe1in6 to help end delays to diagnosis and treatment

A neurological condition requires quick diagnosis and treatment, but too many people have to wait too long to see specialists. 36% of adults and 30% of children and young people reported waiting more than 12 months between first experiencing symptoms and getting a diagnosis.

Delayed treatment and care can significantly alter a person’s life. Over half (55%) of adults and 60% of children and young people living with a neurological condition reported experiencing delays to routine appointments with specialists in the last year.

Many people are waiting for appointments in neurology and neurosurgery across the UK. Over 236,000 people in England were waiting for NHS support in March 2022. There are approximately 9,250 people who have been waiting for over a year.

Thank you for sharing your experiences

Over 130 people affected by ataxia took part in My Neuro Survey.

One of the survey respondents said:

“I have not seen my consultant for over 3 years. I was abandoned during covid. Specialist nurse never returns calls or emails but is overwhelmed with work!”

As many of our Friends have experienced, slow diagnosis is an issue that widely affects the ataxia community.

The Neurological Alliance’s findings are, sadly, not too dissimilar from those seen in the ataxia community wellbeing survey conducted in 2021 – you can read the results of this survey here.

Please sign the #BackThe1in6 petition by going to www.tinyurl.com/BackThe1in6

To read the results of the 2021/22 My Neuro Survey, please visit this page.