An Interview with an ECLO

In this week’s ELVis blog post, I share an interview with an ECLO based in East London.

What does ECLO stand for?

ECLO stands for Eye Clinic Liaison Officer.

What does an ECLO do?

That is a really difficult question!  An ECLO works directly with people with low vision, deteriorating vision, sight loss or impending sight loss, and their carers.  The support is both practical and emotional, is for people of all ages and is extended to carers and family members.  They provide timely one to one support and quality information and advice, emotional support and access to other statutory and voluntary services.  ECLOs connect people with the practical and emotional support they need to understand their diagnosis, deal with their sight loss and maintain their independence.  The ECLO has the time to dedicate to people following their appointment, so they can discuss the impact their condition will have on their life.

For example, one of the people I support I met when they were diagnosed with Retinitis Pigmentosa (RP).  This came as a complete shock for them as they had never heard of this condition.  As an ECLO I was able to give them the time, space and support they needed to process this information.  I was able to give them information on RP in layman’s terms, refer to their local sensory team and link them with local charities such as the RNIB, East London Vision and RP Fighting Blindness.  I am still in regular contact with this individual, who is still working in his job with support from Access to Work, has accessed Personal Independence Payments and is receiving counselling to help him process everything.

That is just one example; ECLO’s can support anyone who has sight loss at any point in their journey.  If a patient has a question, then an ECLO will find the answer and put them into contact with the right people.

How long does it take you to train to be an ECLO?

The RNIB in partnership with the Royal College of London provide ECLO training which takes around 3 months to complete. This consists of 4 days training in person learning a range of 18 different modules from eye conditions to emotional support. This is followed by an exam and essay around 3 months later.

How many ECLOs are in each hospital?

Unfortunately, not every hospital with an eye clinic has an ECLO (yet!) and the ones that do generally only has 1.  The RNIB have produced a document with a list of every ECLO and what hospital they are based in.  If anyone would like to find out if their hospital and eye clinic has an ECLO, you can find out via the following link: https://www.rnib.org.uk/sites/default/files/Eclo_role_report.doc

How do you get an ECLO to assist you?

If anyone is interested in getting support from their local ECLO, they can find the details in the link posted above and contact them directly.  Alternatively, next time you’re in the hospital you can ask a member of staff who should be able to introduce you.

Do you like your job?

I love my job!  Every day is completely different, and you get to meet some amazing people along the way.  It can be really challenging but it is one of the most rewarding jobs I have had the pleasure to do.

What is a normal working day like for you?

That is an impossible question to answer, as every day is different whether it is supporting individuals in clinic, chasing Certificates of Visual Impairments or making referrals.

Written by Christine Edmead, ELVis Administration and Information Officer

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My Margate Experience with Beyond Sight Loss

We traveled as a group to Margate on Thursday 28th June.  There was very good community spirit among the members.  Each of the members had a different experience of the outing because of their childhood memories of visiting the beach town.

The weather was nice and sunny, and you could feel the cool breeze.  It was nice to walk along the beach front.  I really enjoyed it!

For lunch, we ate at a fish and chips restaurant on the promenade.  The food was reasonably priced and was cooked fresh.  I thought the customer service was fantastic as all the staff were very friendly and attentive to the group’s needs.

As I spoke to each of the members individually, I learned that some of the older members were slightly disappointed that their memories of Margate have been eroded over the years, but I didn’t let this dampen their spirit.

When I finished my lunch, I decided to explore the old part of the town.  I was pleased to see the old-fashioned sweet shop I used to visit had survived, so I bought a few treats to bring back home for my family.  Also, I came across graffiti art of the Trotter family from the comedy show ‘Only Fools and Horses’, which I loved watching.  The art was big and the colours were bold enough for me and some of the members with sight to appreciate.  It was a very nice piece of art work!

We had split into several groups as there were so many of us, and at the end of the day we regrouped and shared what we had done on our visit.

I enjoyed myself and would like to say thank you to all the organisers and volunteers who work hard to keep us safe and arrange the outings.

Margate1
Photo of the Beyond Sight Loss members eating fish and chips at a seaside restaurant in Margate.
Margate2
Photo of a mural (wall art) featuring the Trotter family from the TV comedy show ‘Only Fools and Horses’. The mural features Del Boy, Rodney and Grandpa who are all characters in the TV show.

Written by Christine Maker, ELVis member

Living with Aniridia

What colour are your eyes? Are they blue, green, or brown? It’s something most of us take for granted. But for me it’s not that simple.

My name is Glen, I’m 33, and I have a rare condition called Aniridia. This means I was born without irises, so I don’t technically have an eye colour. Aniridia affects just 1 in 47,000 people, and to mark the first ever Aniridia Day on 21st June 2017, I’d like to tell you a bit about how it affects me.

The iris has an important job. It adjusts the size of the pupil to control how much light enters your eye; they will shrink in bright light to allow less light, and expand in the dark to allow in more light and help you see better.

Without an iris, my eyes are very sensitive to glare and brightness.  On cloudy days I wear sunglasses because there can be glare coming off from things like clouds, walls, and windows. And it gets worse if the sun reflects of rainwater or if I’m feeling tired or unwell.

Similarly, computer programs often have white backgrounds, which also cause glare. So I invert the colours to give me white text on a black background, which I find a lot more comfortable. I then flip it back to normal when looking at photos or videos, or else they look weird!

Additionally, I also have to be careful when I’m going into a dark room. I may have to hold on to another person or wait a few minutes until my eyes adjust to the level of light available in the room.

Living with aniridia hasn’t stopped me from living my life though. I’ve graduated from university and I’ve been working in my job for over 12 years. I also love travelling and socialising. Furthermore, since I moved to London last Christmas, I’m having a great time exploring the city and making new friends – including the very welcoming members of East London Vision, and I’m involved with Aniridia Network UK as well. So I’m happy and comfortable, and the future looks bright as long as I wear my shades!

GlenTurnerNHM
Photo of Glen and a tour guide at the Natural History Museum holding a piece of zebra fur, during a trip to the museum in April 2017.

You can find lots more about my visual impairment and the things I enjoy at the following links:

Blog – www.welleyenever.com

YouTube – https://www.youtube.com/channel/UCv7AcWqn3r_HxQRAtxVe5Fg

Twitter – https://twitter.com/well_eye_never

Instagram – https://www.instagram.com/welleyenever/

Thanks for reading!

Written by Glen Turner