Raising Awareness of Keratoconus with Professionals

The recent blog we published concerning the diagnosis of Keratoconus by Stephanie Campbell (Department of Ophthalmology and Vision Sciences,  Cardiff University), provided excellent guidance on how to find a suitably qualified practitioner who is able to diagnose Keratoconus in children and young adults with Down’s syndrome.

The guidance urges families to seek out practitioners skilled in the use of the retinoscope. This is because a growing number of practitioners use auto-refractors; these are machines that automatically measure a patient’s spectacle prescription. Auto- refractors can be used by non –professionals as they do not require the eye to be viewed by the practitioner. If Keratoconus is to be picked early enough and treated the use of the retinoscope in eye examinations  is vital for people with Down’s syndrome.

Extract from Stephanie’s blog:

The message for parents then, is this:

Ensure that your child / young person has an annual eye examination, with a practitioner that not only understands the communication needs of people with Down’s syndrome, but that also is highly skilled in radioscopy and knows the risk of keratoconus in this group. How are you to go about ensuring that? Ask the following questions:

  • Does the optometrist regularly see children and adults with Down’s syndrome?
  • Does the optometrist use retinoscopy with ALL patients, not just those with learning disabilities?
  • Is the optometrist familiar with the visual problems of people with Down’s syndrome?

If the answer is yes to all three, then make the appointment, otherwise go elsewhere.

During the appointment ask direct questions about assessing your child / young person for keratoconus. If you do not have confidence in the answers, don’t be afraid to walk away.

It is important that as many people as possible are made aware of this information.

We have written to all major high street opticians and to the Association of British Dispensing Opticians (ABDO). We also have raised the issue with members of Vision 2020 UK, an umbrella organisation of organisations with an interest in eye health and sight loss.

Thank you to everybody who has already taken a copy of the Cardiff factsheet (based on Stephanie’s blog) to their own optician. We would also urge you to contact your local patient participation group, send them a copy of the factsheet and ask them to raise awareness in their area. You will find a link to an email/letter template at the end of this blog.

Patient participation bodies

Each country in the UK is represented by its own patient participation body to which people can write and raise any issues or concerns they have about the provision of health and social care services.

Healthwatch – England is a body established under the Health and Social Care Act 2012, which took effect in April 2013. The Healthwatch network is made up of local Healthwatch bodies across each of the 152 local authority areas and Healthwatch England, the national body which oversees them all.

Healthwatch England is a statutory body whose purpose is to understand the needs, experiences and concerns of people who use health and social care services and to speak out on their behalf. The Healthwatch network shares information, expertise and learning in order to improve health and social care services. Find the contact details for your local Healthwatch here.

In Wales, Community Health Councils provide a similar function and you can find details of how to contact your local council here.

The Patient and Client Council is the equivalent body in Northern Ireland and you can find their contact details here.

Template letter

Click here to download the text of the template letter or copy the text below:

Dear ……….,

It is very important that children and young people with Down’s syndrome have eye examinations carried out by practitioners who are aware of the risk of Keratoconus in people with Down’s syndrome and skilled in the use of the retinoscope.  Between 10% and 15% of people with Down’s syndrome develop the condition, it is extremely rare in childhood but may start to develop in adolescence.

I have attached a factsheet written by Stephanie Campbell (Department of Ophthalmology and Vision Sciences, Cardiff University). I would be grateful if you could make this information available through your networks to raise awareness of the issue.

You can find the factsheet here.

Image courtesy of Madhero88 (Own work) [CC BY-SA 3.0], via Wikimedia Commons