Guideline Development & Patient Survey

As many of you will be aware over the last few months we have been working with a multidisciplinary Special Interest Group (SIG) which has been established on the topic of Spontaneous Intracranial Hypotension (SIH) for spinal leaks. The purpose of the group is to develop a national consensus guideline for the clinical management of SIH and to ensure consistency of care across the NHS in 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 patients themselves. The first workshop took place on 22 January with a second one on 19 March. The day long sessions are being held virtually as the restrictions prevent us from meeting in person but that certainly didn’t impact attendance as over 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 was very evident and those of us who attended were inspired by the engagement of all those present, particularly at a time when there are so many other demands on their time.

It’s expected that we will need at least three further meetings to complete the process and those are all planned for this year. A special thanks to our patient representatives who have all given their time to attend and ensure that the patient voice is heard – Sarah Mead, Jenny Pople and Russell Secker.

A crucial input to the work of this group is the completion of a patient survey by the CSF Leak community and we have been absolutely overwhelmed by your participation! At the time of writing we had received almost 100 responses. This far exceeded our expectations and will ensure that our experiences are considered in the future diagnosis and treatment of SIH. A very special thanks to Clare Sargeant, Trustee, whose support in preparing for the SIH SIG meetings and the launch of the survey was invaluable and two remarkable volunteers, Jenny Pople and Jessica Snape-Burns, who have given their time to design and manage the survey and who will be analysing your responses once the survey closes. Jenny and Jess – we couldn’t have done it without you! We’ll share what we learned from your participation in a future newsletter.

To gain wider input into the guideline development process, a survey will also be conducted amongst healthcare professionals who may be involved with managing SIH but may not consider themselves experts, i.e. the wider target audience of the guidelines. In addition the process will include inviting review by professional bodies of specialities whose clinicians are involved in the diagnosis and/or management of SIH as well as international experts of the condition.

We hope that the guidelines will be published in the summer of 2022 but in the meantime we will keep you updated of our progress along the way!

Tamsin Trevarthen and Clare Joy

Trustees