Medical Guidelines Development

Our work on the development of a national consensus guideline for the clinical management of Spontaneous Intracranial Hypotension (SIH) in spinal leaks continues apace. We have been working with a multidisciplinary Special Interest Group (SIG) following a robust methodology called AGREE II, with the hopes that having a guideline will improve the experience of leakers accessing healthcare services across the UK.

The group is composed of neurologists, neuroradiologists, neurosurgeons, anaesthetists and headache nurses actively involved in delivering care to SIH patients, as well as a number of current and former leakers. Our first meeting took place in January 2021 and since then we've had five more. Due to Covid, these day long sessions have been held virtually with more than 20 clinicians dialled in to work with us on this critical initiative. Their shared commitment to work collectively to transform the journey for our patient community has been very evident. Those of us who have participated have been inspired by the engagement of all participants, particularly at a time when there are so many other demands on their time.

We'd like to acknowledge the stellar work of Dr Manjit Matharu (Associate Professor, UCL and Honorary Consultant, NHNN), Dr Sanjay Cheema {Clinical Research Fellow, UCL) and members of the SIG steering committee in facilitating the meetings and spending innumerable hours supporting the work of the SIG between meetings.

As part of the process we held a patient survey and a healthcare professionals survey in an effort to understand the current treatment path and the barriers to diagnosis and treatment experienced by both patients and clinicians. We wish to thank those of you who responded to the surveys, and we're happy to report that the results have been written up and submitted for publication in an academic journal. We look forward to sharing further updates when we know more.

There is one more meeting in December and we hope to have a document ready for public consultation in the coming months. We'll be in touch when the consultation goes live so keep your eye peeled on your email and our social media channels!

Clare Joy and Tamsin Trevarthen

Trustees