Patient Survey 2021


The CSF Leak Association is currently working with a multi-disciplinary group of clinicians who are committed to the development of a national consensus guideline for the clinical management of Spontaneous Intracranial hypotension (SIH) to improve and standardise spinal CSF Leak patient care throughout the UK.

Patient involvement is an essential part of guideline development and with that in mind we are conducting an on-line survey to learn more about your personal experience of the diagnosis, treatment and management of SIH. Your responses will help to identify the needs, preferences and opinions of patients affected by spinal CSF leaks in order to involve them directly in the process and highlight the issues we collectively consider important for the SIH guidelines to address.

Your willingness to share your views is a vital part of transforming the journey for all spinal CSF Leak patients. We recognise that it may be difficult and emotional to relive your experience, so you may prefer to complete it in multiple sittings or with someone who can offer you support.

Thank you for choosing to participate in this survey and supporting our charitable aims. A report detailing the overall findings will be shared with the guideline development group, our Medical Advisory Committee, our membership and on our website. It is anticipated that the report will be published in a medical journal at a future date.

Completion of the survey takes about 30 minutes. You can take a break at any point, save your responses  and return to answer more questions later. The survey will remain open until Midnight on Friday 21st April 2021.


Data Protection

We won’t store any contact details and all data submitted in response to the survey will be stored, handled and processed in strict accordance with our data protection policies and provisions of GDPR. If you would like to discuss any aspect of how your data may be used or handled, or view a full copy of our data protection policy, please contact