The National Neurology Patient Experience Survey

About the survey

The National Neurology Patient Experience Survey presents a comprehensive picture of the experiences of people living with a neurological condition. Run by The Neurological Alliance, with support from Quality Health, it covers a wide range of topics including diagnosis and information, hospital care, support for mental wellbeing, and access to social care, welfare and employment. It runs every two years, and gathers responses from people with a very wide range of neurological conditions. We use the results to campaign for improved services for all people with neurological conditions.

We are in the process of finalising the 2021 iteration of the survey, which will open on 25 October 2021 and close on 14 January 2022.

People affected by a neurological condition can sign up here to receive receive regular bulletins about our work, includingreceiving a link to the survey once it goes live.

Neuro Patience 2019

The National Neurology Patient experience Survey ran online and in select neurology clinics between October 2018 and March 2019. The research represents the largest ever survey of people with neurological conditions in England with 10,339 responses.

Our report Neuro Patience presents the findings of the 2018/19 survey. The report covers three main themes – accessible, personalised and holistic care and support, (which includes social care, mental health and financial security). Overall the 2018/19 results show that people’s experiences remain poor. The survey found people with neurological conditions are facing long waiting times, poor access to specialists and a lack of personalised care. It also found failings in the social care and welfare system, as well as discrimination in the workplace for people with neurological conditions.

A policy report, technical report and summary of findings can be found in our resource library.

For the first time, in 2018/19, we also presented the data broken down regionally to Sustainability and Transformation Partnership (STP) level. Our online interactive map shows the patient experience survey scores for each STP footprint, compared to the average scores for England. It also shows the response count for each STP. This information is intended to support STPs and Integrated Care Systems (ISCs) in developing their priorities, highlighting where neurological patient experience needs to be improved. A summary of the regional findings can be found in our resource library.

Our previous patient experience surveys

For details of our 2014 and 2016 surveys and to read about the findings please see the reports:

» The invisible patients: Revealing the state of neurology services
» Falling short: How has neurology patient experience changed since 2014

For more information about the survey please email info@neural.org.uk