neurological patient

The Pernicious Anaemia Society welcomes new neurological patient experience survey

17 Oct, 2018

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. The survey aims to collect enough data 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.

The Pernicious Anaemia Society 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 the Pernicious Anaemia Society.

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 NHS long term plan.
  • Developed a programme of work on mental health and neurology, report 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 17th October 2018 to 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 makes a difference.

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  1. Phillips

    Clicking on ‘I do not receive treatment in England’ takes me into a circular pattern which gets nowhere. What is the point of that? If non-England (Wales, Scotland, Ireland, other countries) responders are not required, please say so. Or have a word with the website manager.

    • Petra

      It is not our survey, although we fully support it. The organiser is the Neurological Alliance. If you have any queries about the questionnaire, please call the FREEPHONE helpline number on 0800 783 1775 or by email at

  2. Clive Parsons

    Having spent half am hour completing the survey on clicking “Finish” all I got was a message saying “Sorry – something went wrong” and the screen froze.

    I shan’t be doing that again

  3. Lesley Evans

    I have clicked I receive treatment in England but it’s telling me I have not logged in.

  4. stella hall

    I think it’s important we contribute to research. Glad I completed it.

  5. Kathie Brown

    It does say it’s just for participants receiving care in England if you click on the button that says ‘please click here if you do not receive treatment in England’.

    But helpfully provides a link to the regional Neurological Alliance websites.


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