SUDEP Action

Making every epilepsy death count
Call us now on 01235 772850

SUDEP Action welcomes new neurological patient experience survey

Neuro Alliance Survey



A new neurological patient experience survey is open, to collect vital information about the experiences of treatment and care, social care and welfare received by people affected by neurological conditions such as epilepsy. The survey aims to collect enough data from people living with a neurological condition to positively influence future neurology services.

About the survey

The survey is by The Neurological Alliance – an organisation that brings together organisations working to make life better for millions of people in England with a neurological condition. Through the patient experience survey, The Neurological Alliance aims to positively influence the future quality of neuro health and social care services. Too often services fall below the standard expected. This survey aims to help change that. 

SUDEP Action fully supports the Neurological Alliance in its ambitions. We welcome the survey as an important tool in gathering shared insights across neurological conditions. The neurology community is strong when it stands together.


What will happen with the results?

The Neurological Alliance will publish the results in a report in summer 2019. This report will set out a comprehensive picture of what is happening in relation to neurological services and make recommendations about how care can be improved.

The survey findings will be shared with SUDEP Action and we will use them to add strength to our policy and campaign work – highlighting the urgent need to tackle epilepsy-related deaths by improving information, care and services for those living with epilepsy. This will sit alongside information and experiences already gathered via the Epilepsy Deaths Register from bereaved families, which since its launch in 2013 has highlighted well known gaps in epilepsy care and lessons which could be learnt to save future lives.

If you have lost a loved one to epilepsy and would like to share your experiences with us, please do so via the Epilepsy Deaths Register and get in touch about creating a My Story


The Neurological Alliance’s previous two patient experience surveys made a significant impact:

  • Made the case for continued national leadership for neurology
  • National Neuro Advisory Group set up
  • Getting the National Neuro Advisory Group to prioritise care planning and communication with patients
  • Fed into the NHS long term plan
  • Developed a programme of work on mental health and neurology, the report has been published
  • Influenced the development of NICE guidance on suspected neurological conditions
  • Raised the profile of neurology through media work


How do I complete it?

The survey is open from Tuesday 17th October 2018 to Thursday 17th January 2019.  It is for anyone with a neurological condition living in England. Carers can help complete the survey as needed.

The survey may take around 25 minutes to complete.

Please be aware that you cannot save your answers and come back later.

Your responses are completely confidential and anonymous.


Please click here to complete the survey.


Thank you – each response will help to make a difference.