#WeCare2 – Nystagmus Centre of Excellence

Dom Burdon talks about Nystagmus in our latest blog.

Nystagmus is an eye condition which causes the eyes to involuntarily oscillate in any one direction. It can result in the patient experiencing many problems with different visual functions, for example the time it takes to focus on targets; it can also result in symptoms where patients perceive the world to be moving, when it is actually still.

The aetiology for Nystagmus can range from chronic visual disorders to acute neurological emergency.  It is a lifelong eye condition and will affect a person’s ability to do all activities throughout daily life. Most people might have not heard of Nystagmus, however it is prevalent in 0.3% of the population.burdonsocial

In the Orthoptic department here in Ophthalmology, we pride ourselves on being a centre of excellence for Nystagmus. We are one of three centres nationally who have a clinical eye tracker, a specialist piece of equipment used to identify the type of Nystagmus and in turn, allows for swift investigation, diagnosis, management and support for these patients.

We accept far reaching referrals and are able to do the full workup for these patients, giving them answers relating to their condition which they would not have had available to them before. This support is not only provided during the Ocular Motility clinic which we run for these patients (where we use the eye tracker); we also keep in close contact with our patients even after they are discharged, in case they have any questions or concerns regarding their Nystagmus. To provide this high level of care and support we work with all multidisciplinary teams: Neuroscientists, Ophthalmologists, Optometrists, Imaging teams, Vision scientists, Genetic specialists, Neurologists, Paediatricians, visual impairment teachers and rehabilitation officers.

Through extensive clinical experience via the Ocular Motility clinic, the team here in the Orthoptic department are developing a national Nystagmus Care Pathway, to standardise care provided for patients with Nystagmus within the NHS and address present inconsistencies across the country reported by patients and families to the main nystagmus charity, Nystagmus Network. Thus, the Nystagmus Care Pathway’s purpose is to ensure that an evidence-based multi-disciplinary minimum standard of care is provided in every eye department across the UK.

Research is one of our core initiatives in the Ocular Motility clinic. Currently we are undergoing a literature review relating to the drug treatments for symptomatic Nystagmus patients. This will facilitate clinicians to make clear judgments about which drugs to trial, according to patient’s symptoms. We have exciting plans to develop the research structure in the department with Nystagmus as its core priority. We are working towards many future studies both “in house” and collaboratively with other centres. The UK is currently leading the way in Nystagmus research worldwide.

In summary, the Orthoptic team here in Ophthalmology feel very proud of the impact our centre of excellence for Nystagmus has made to patients.  As we develop our clinic further and progress with our associated research, we hope to be a stellar example of how specialist clinics and research should be represented and driven forward in an allied health profession setting.

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