Seeing this evaluation article made me look at how I’ve found this pack over the years and if it has stood the test of time.I do note that the current website has tweaked the original pack and I’ve now updated my saved copies.

The pack includes:

Part 1 Introduction -what is Nystagmus

Part 2: Infantile Nystagmus

Part 3: acquired nystagmus

Part 4: What to expect at eye clinic appointments

Part 5: Treatment options and long-term outcome

Part 6: Useful contacts and information

Part 7: information  about nystagmus for families

I have found I use this pack quite regularly over the last 5-6 years, especially when I am newly diagnosing a child prior to them seeing the consultant. I am often the first medical professional they have dealt with bar their GP. – I’ve looked back and I have utilised it since it has been available online in 2017. Prior to this I had created my own personal ones for the DHB dept and private rooms.

Not all the sections in the pack are of use here in New Zealand and I’ve found I don’t use 4 ,as this is more reflective of NHS appointments or  6 as they list UK suppliers and agencies but I’ve found parents, so long, as I advise the parents of this would rather have any printed information rather than nil to be able to” go over at their own pace’

The sections I’ve found most used are the Part 2: Infantile nystagmus and Part 3: Acquired nystagmus

Then  Parts 1: introduction, Part 5 and part 7 I have only given out at the behest of families when they wish letters to teachers or have specific queries.

Overall though I have found this has been a useful addition to my information arsenal and it is still my main ‘go to’ as a resource for patients. I hope others find it useful too if you’ve not known of it before.