17th October 2018

Patient experience survey now live online

We are very pleased to announce that our patient experience survey is now live online. The patient experience survey is the Neurological Alliance’s flagship project. It enables us to understand what’s good, and what’s poor, in people’s experience of health services and social care services in England. We use this information to campaign for much needed improvements to these services. This year we expect the number of responses and richness of the data to be better than ever before, as we have added a new additional methodology.

The survey is available here. It will be open from 17 October 2018 to 17 January 2019.

Please promote the survey

Please help us promote the survey – we’re stronger together. The neuro community can gain leverage through the patient experience survey as it covers a larger patient population than any condition specific surveys. The more people hear about the survey, the more they are likely to complete it, and the richer our data will be. A communications toolkit to aid with promotion activities is available here

Advantages to member organisations of promoting the survey include:
  • Deliver a rich source of data on neurology patients‘ experience across a range of topics
  • Influence the future quality of neuro health services and social care
  • Receive a report of your individual condition’s aggregated results

About the survey

The survey touches on many aspects of living with a neurological condition. It starts with questions on what condition(s) a person has, and the extent to which their condition affects their quality of life. It then goes on to pose questions about people’s experience of diagnosis, the information they received, their treatment and care, whether they were offered support for their mental wellbeing, their use of social care services. We also ask about respondents’ employment situation, and their receipt of welfare benefits.

We ask people to give us their post code so that we can map their location to local health services, as we hope to be able to break results down by regional Sustainability and Transformation Partnership (STP) areas, for regional influencing purposes.

Survey responses are completely confidential. Information about this is provided at the start of the survey.

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

A new methodology

This year, we arre building on our previous surveys by adding an additional methodology. As well as promoting an online version of the survey, we are working with a survey company, Quality Health, to develop a new, in-clinic method of distributing the survey. Clinical staff in hospitals across England will be hand out paper copies or the survey to their neurology outpatients. Through this additional methodology we hope to improve the reliability and validity of results, and to gain more survey responses than ever before.

Another addition is that we are working with the Stroke Association on a stroke version of the survey. This will have many overlapping questions, allowing for some interesting comparisons. Stroke is more of a priority area for the health service than the rest of neurology. So, by working jointly with the stroke community we hope to gain more traction for the whole of neurology.

The in-clinic rollout of the neurology and stroke version of the survey will take place in winter/early spring 2019. We will publish a report of our findings from this survey in early summer 2019.

Our previous patient experience surveys

This is our third patient experience survey. For more information about our 2014 and 2016 surveys and to read about the findings please see below: