Patients and their families need standardised care, support and information at diagnosis wherever they live.
Getting told your baby has nystagmus is an anxious time. It’s even harder if all the medical information seems a bit bewildering, if testing is inconsistent and depends on where you live and you don’t know where to turn for support.
That’s why NUKE (the Nystagmus UK Eye research group) is working to put together the ‘Nystagmus Care Pathway’, a set of guidelines for hospital eye clinic staff to follow, covering everything from taking the family history through diagnostic testing to long term support.
The value of immediate, clear information about nystagmus for families and signposting to sources of support cannot be emphasised enough. Generally, their questions fall into three categories: What is the cause? How will it impact the sight and general wellbeing? What is the solution?
Pinpointing the cause has many benefits for patients. An accurate diagnosis empowers families to talk about nystagmus and advocate for themselves and/or their children. If the cause is genetic the family can understand why nystagmus occurred and know the probability of other children being born with the condition.
Parents especially want to understand how nystagmus will affect developmental milestones, education, social interaction and, ultimately, career choice. The first 17 years are of more immediate significance than whether or not the child will eventually be able to drive.
Following the initial shock of diagnosis with a previously unheard of condition, most parents gradually accept that treatments are limited and there is no cure. At this point they can begin to understand the optical, clinical and surgical options available, what will help, what will not help and why.
Where clinicians lack the time or experience to answer some of these questions, it is important to steer families away from Google and signpost them instead to national and regional organisations such as the Nystagmus Network, local sight loss organisations, the ECLO or QTVI.
All this guidance will be enshrined into the Nystagmus Care Pathway to ensure that treatment and advice are standardised at the highest level.