Nystagmus is a clinical condition where the eyes continuously move, rather than stay still. Nystagmus can be congenital or acquired and patients with nystagmus are commonly seen in orthoptic clinics, as well as ophthalmology or neurology clinics for their clinical care. Patients with nystagmus typically suffer from reduced vision and they may also experience oscillopsia, where the world is seen continually in motion.
The need for improved information about nystagmus was highlighted at a trip to the 2015 ‘Nystagmus Network’ annual charity open day. Lecturers from the Academic Unit of Ophthalmology and Orthoptics took along a group of undergraduate students to the open day to learn more about the condition and its impact on patients and their families. During this visit, it became apparent that many had limited access to information about nystagmus, were ill-prepared for the clinical journey ahead of them and felt unable to explain the condition to others. The Nystagmus Information Pack was therefore developed by the Academic Unit of Ophthalmology and Orthoptics with funding and support from the University of Sheffield, Nystagmus Network and the British and Irish Orthoptic Society. Since its release in 2017, the Nystagmus Information Pack has been widely downloaded, translated into Dutch and a German translation is planned.
The Nystagmus Information Pack was nominated for a BMA Patient Information Award in the ‘long term conditions’ category and we were the only eye-related condition shortlisted. We attended the award ceremony on 25th September in BMA House, London where the winners were announced. We were delighted that the Nystagmus Information Pack was ‘highly commended’ and received positive comments from the reviewers. Further evaluation of and improvements to the Nystagmus Information Pack are planned in the future.
The Nystagmus Information Pack is available for free download at https://www.sheffield.ac.uk/oncology-metabolism/research/ophthalmology-orthoptics/research/nystagmusinfo
For further information about the BMA Patient Information Awards you can visit the website:
https://www.bma.org.uk/library/patient-information-awards
Anwen Coughlan, Orthoptist, Hywel Dda NHS trust
Gemma Arblaster, Lecturer in Orthoptics & NIHR Clinical Research Fellow, University of Sheffield
Anne Bjerre, Lecturer in Orthoptics, University of Sheffield
Dr Helen Griffiths, Senior Lecturer in Orthoptics, University of Sheffield