Children and young people affected by neuro conditions face difficulties accessing vital services and support

12/10/2022

Children and young people affected by neurological conditions are facing difficulties accessing vital services and support, the latest analysis by The Neurological Alliance shows.

The Neurological Alliance’s latest analysis of My Neuro Survey data highlights the experiences of children and young people (people under the age of 18) with neurological conditions or suspected neurological conditions.

Over 600 people throughout the UK responded to the children and young people’s survey which was run in partnership with the Neurological Alliances of Scotland and Wales and the Northern Ireland Neurological Charities Alliance. 

The results highlight challenges accessing services such as mental health and wellbeing support, as well as a lack of information at diagnosis and difficulties transitioning from children’s to adults’ services.

Key findings

Key findings from the data show that:

• Delays to treatment and care can change your life forever. 60% of children and young people living with a neurological condition experienced delays to routine appointments with specialists in the last year​.
• Most children with a neurological condition are unable to access the mental wellbeing support they need. 89% of respondents to the children and young people’s survey say that their condition makes their mental wellbeing worse. 63% note that their mental health or behaviour worsened during the pandemic.
• Despite this, 66% reported that their mental wellbeing needs were being met to a small extent or most often, not at all. Over half (52%) of respondents have not been asked about their mental wellbeing by a health or social care professional in the last three years.
• Too many children and young people face unacceptable waits to see specialists or get a diagnosis. 30% of children and young people waited more than 12 months between first experiencing symptoms and getting a diagnosis. 1 in 5 respondents to the children and young people’s survey reported not being given an explanation of their diagnosis.
• A smooth transition between children’s and adults’ services is critical to making sure children and young people get the support they need. When this doesn’t happen, children, young people and their parents and guardians can find themselves unable to access the services they need. 85% of respondents had not been offered a named worker to support the transition process between paediatric and adult services even though clinical guidance recommends this.
• Children and young people with neurological conditions are missing out on the support they need to access education.  Children with neurological conditions may struggle to attend school and not everyone is getting the support they need. 71% of respondents to the children and young people’s survey said that their attendance at school has been affected by their neurological condition.

Download the full briefing to learn more about the results.

Next steps

Georgina Carr, Chief Executive of The Neurological Alliance, said:

“Children and young people with neurological conditions, and those closest to them, have told us loud and clear: there needs to be improved mental health provision to meet their needs, increased support to enable them to access education and better care when making the difficult transition between children’s and adult services. Without the right support, children and young people may be missing out on the right education, treatment or social opportunities, and their wellbeing and the wellbeing of the people closest to them can suffer as a result.

“We urge Governments across the UK to act now, back the 1 in 6 people in the UK who have a neurological condition, and to establish a Neuro Taskforce to help tackle these common shortcomings in support.”  

Join us in calling for change

Together with Neurological Alliances in Wales and Scotland and The Northern Ireland Neurological Charites Alliance, over 100 organisations and over 13,500 people to-date, we’re calling on all UK Governments to work together to establish a Neuro Taskforce to address common challenges and deliver real change. Show your support by signing the petition now and #BackThe1in6.

Find out more about the results and download the data.