Key report provides insights to help us to fight for the wellbeing of CSF leak sufferers

The report for our recent Patient Impact Survey 2020 is now available. We’d like to extend our thanks and gratitude to everyone who took the time to respond to the initial survey. The results will help to inform our work going forward, better equip us to fight for and on behalf of CSF leak sufferers and make sure that our collective voice is heard during these testing times.

We received 93 responses to this survey, 63 from patients from across the UK and 57 receiving care from the NHS. Only 36% of the responders rated the care from their hospital team as good or excellent. The majority of responders receiving NHS care reported not coping well.

81% of patients receiving NHS care had appointments cancelled or delayed due to the pandemic, most commonly an appointment with a neurologist or other consultant or for a scan. The majority of the cancelled appointments were delayed by 1-6 months, but a quarter of respondents reported appointments had not been rescheduled.

  • 81% reported appointments cancelled

  • 63% reported symptoms made worse during pandemic

  • Only 36% of respondents rated their care as good or excellent

Nearly half of UK NHS responders had virtual consultations and the majority rated these as being effective. 63% of patients who responded to the survey reported their CSF Leak had been made worse by the pandemic. Primarily due to delays and cancellations in treatment and care affecting their health. Only a small number of these patients report concerns about contracting Covid19 in hospital for not pursuing care and treatment.

The full report can be downloaded here:

2020 Patient Impact Survey Report

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