Meeting at The Brain Charity in Liverpool

Lack of understanding biggest issue facing people with neurological conditions, Brain Charity clients say

Survey reveals 8 in 10 believe their neurological condition isn't understood

A lack of understanding is the biggest issue facing people with neurological conditions, clients at The Brain Charity have said.

Nearly 140 service users completed our 2022 survey, launched so we could gain an insight into the issues people with neurological conditions face on a daily basis.

Understanding of neurological conditions a key barrier

Eight in 10 respondents said they did not feel their condition was understood, while just under two thirds (64%) said they struggled with low confidence.

Comments from clients on how their condition affected them included “feeling like a burden on family”, “loss of identity and capabilities – not knowing how to move forward in life”, and “feeling isolated”.

Loneliness and mental health problems big concerns for people with neurological conditions

Poor mental health and feeling lonely were also cited as key ways neurological conditions affected people’s lives.

The number of people saying they needed to access mental health support at The Brain Charity rising from 54% in 2020 to 62% in 2022, and a 10% increase in interest in our counselling service.

The Brain Charity’s services helped increase confidence and ability to manage conditions

Nearly half (47%) of survey respondents said The Brain Charity’s services had helped them feel more confident, while almost four in 10 said they were more able to manage their condition.

Around 30% said they were less lonely, more active and had more friends, with respondents saying “it’s like having an extended family” and “I feel listened to at times of crisis”.

Nanette Mellor, CEO of The Brain Charity, said: “The lived experience of our clients – people with neurological conditions and their families and carers – is central to everything we do at The Brain Charity.

“All decisions on the future of our services, projects, strategy and growth are made with their needs and suggestions in mind.

“We thank everyone who shared their stories and feedback by taking part in our survey – particularly now, as we plan for the future post-pandemic.

“We will use the results of this research to focus The Brain Charity’s resources where they are most needed, to provide services which will be the most beneficial to people with all forms of neurological condition.”

You can find more of the survey data in the infographic below.

If you have feedback you would like to share with The Brain Charity about your experiences, please email

Category: News

Published: 9 March 2022