Call for national neurology plan following largest ever survey of people with neurological conditions

People with neurological conditions are facing long waiting times, limited access to specialists, poor mental health support and a failing social care system, according to a new survey by The Neurological Alliance.

The National Neurology Patient Experience Survey presents a picture of the experiences of people living with a neurological condition in England.  This year the survey received over 10,000 responses, making it the largest survey of its kind. It covered a wide variety of topics, from diagnosis and information, to access to social care and mental wellbeing.

• People with neurological conditions are facing long waiting times and poor access to specialists, with one in three respondents reporting that they waited more than 12 months for an appointment with a neurologist.
• 43% of respondents were not given any written information at the time of their diagnosis. A similar proportion were not signposted to places to find out further information. This can be compared to 73 per cent of people with cancer who said they were given written information at the time of diagnosis.
• Informal carers are propping up a failing social care system, with over 50% of the respondents with MS receiving care (that they do not pay for) from a friend or family member. 
• Mental health support for people with MS is poor, with 50% of respondents revealing that they have not been asked about their mental health by their health professional and 30% feeling like their mental wellbeing needs were not being met at all. 
• 60% of people with MS who responded to the survey were not able to continue to work as normal because of their condition and a similar number felt like they had missed out on opportunities to develop their career because of it. 

In light of these findings, the Neurological Alliance is calling on NHS England and the National Neuro Advisory Group to come together to develop a national neurology plan for England and for the new regional decision making bodies to include neurology as a priority area for improvement in their plans.

David Martin*, CEO of the MS Trust, commented: "1 in 6 people are living with a neurological condition in England, but the results of this survey show that, currently, the health and social care system is failing so many of them. This group of people deserve so much more.

"We will be working with other MS charities and the Neurological Alliance to ensure that people with MS, and other neurological conditions, are not forgotten."

*David Martin retired as CEO of the MS Trust in March 2024.

• National Neurology Patient Experience Survey 2018/19: Neurological Alliance