Urgent action is needed for the 1 in 6 people across the UK with neurological conditions

Last year, we asked our community to take part in My Neuro Survey, to capture experiences of health, care and support services for people with neurological conditions, including Parkinson’s. The survey is run every 2 years by The Neurological Alliance. It brings together organisations, including Parkinson's UK, who campaign to transform the quality of life of the 1 in 6 people across the UK who live with a neurological condition. 

Over 8,500 people shared their experiences, including significant numbers of people with Parkinson’s. And for the first time, the survey ran across all 4 nations of the UK.

Now the results are in and they make for troubling reading. They detail delays to life-changing treatment and care, a lack of mental health support and how people are often left to cope with no information about their condition. It is clear that urgent action needs to be taken across the UK.

Delays to treatment and care

Long waits for treatment and care are unfortunately nothing new for people with neurological conditions. The survey demonstrates that over half of adults with a neurological condition experienced delays to routine appointments with specialists in the last year. Hundreds of thousands of people are waiting for neurology and neurosurgery appointments across the UK. 

In March 2022, over 236,000 people were waiting for NHS support in England. Approximately 9,250 have been waiting for more than a year.

"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!"

Survey respondent

Mental wellbeing

Over two thirds of survey respondents said their mental wellbeing needs are only being met to a small extent or often not at all. The past 2 years have been particularly tough. 44% of adults report that the pandemic has made their mental health worse. Despite this, people are often not asked about, signposted or referred to mental wellbeing support. 60% of adults were not asked about their mental wellbeing by a health or social care professional in the last 3 years.

"The stress being caused trying to get the mental health care I need is exacerbating the symptoms of my neurological condition."

Survey respondent

Information and support from diagnosis

Finding out you have a neurological condition can be a scary and confusing experience. But receiving the right information and support can make a real difference. The survey reveals that 1 in 5 are not given an explanation of their diagnosis and almost 40% of adults were not given any information at all. Getting support quickly when you have a suspected neurological condition is vital, but too many people face unacceptable waits to see specialists or to get a diagnosis. 36% of adults waited more than 12 months between first experiencing symptoms and getting a diagnosis. 

"I had a 3 minute appointment with a neurologist in a corridor...I asked him to explain the condition and he told me to Google it."

Survey respondent

What changes are we calling for?

Parkinson’s UK is joining with The Neurological Alliance to call on the UK Government, Scottish Government, Welsh Government and Northern Ireland Executive to prioritise services for people with neurological conditions and establish a Neuro Taskforce.  

The Taskforce would bring decision-makers together to create a fully-funded plan for a radical transformation of services for people with neurological conditions, and provide health professionals with the support needed to deliver this. 

How can you help?

You can help us ensure those in power hear the changes we are calling for by signing the petition calling for the establishment of a Neuro Taskforce and sharing it with your networks. You can also share the petition on social media using #BackThe1in6.