An insight into the life of an RNIB ECLO

I was diagnosed with reverse retinitis pigmentosa when I was 17, but I haven't let my sight loss hold me back. I like to think that I'm a positive example for my patients and I never want anyone to experience a sight loss diagnosis alone. That's why I became an RNIB ECLO.

How does it feel to be able to support people with sight loss?

Humbling is the word. I'm very, very fortunate to do the job I do. I think I've got the best job in the world.

I can make a difference, have a positive impact and help patients realise that just because you've got a sight loss diagnosis, it doesn't mean it's all over.

I know, personally, how devastating and scary being diagnosed is without having access to somebody to talk to. If I can help one person not struggle as much as I did, then that's my job done.

Why is it so important for people experiencing a sight loss diagnosis to receive support from an RNIB ECLO?

I am an absolute advocator of RNIB's ECLO service because it's desperately and vitally needed. No patient should be going through a sight loss diagnosis without having access to specialist advice, emotional support and the knowledge of how to live independently.

Many people find talking to somebody who is independent from their family – who is not emotionally involved in their situation – is easier. They can then explain their fears and what they’re struggling with.

How did your role change during coronavirus?

Due to the coronavirus pandemic, I have had to work from home instead of from the clinic. However, I am still receiving referrals and have been offering the same support, just over the phone instead of face to face.

When restrictions were loosened for a period of time, I saw an increase in certificates of vision impairment. Patients were very frightened to leave the house and missed appointments. Approximately 1,300,000 eye appointments were missed during the pandemic which potentially means that we're seeing patients with sight loss that has progressed quicker than it would have as they haven’t been able to access treatment.

What difference does an RNIB ECLO make to the lives of people with sight loss?

Having access to an ECLO at the point of diagnosis, or at the point of need, is so important.

Sight loss can be a very scary, lonely and unsettling time and to have more people like me connecting with those patients and saying, “it's okay, let's get that support in place, let's point you in the right direction, let's give you the information that you need”, would be incredible.

These are just some of the ways an RNIB ECLO like me can help change the life of someone with sight loss:

• reassuring patients when diagnosed
• checking in regularly over the phone
• boosting social confidence
• introducing services like Talking Books
• advising on independent living
• organising aids around the home
• sharing useful technologies
• finding local support services
• referring to specialist counselling
• helping with career changes.

Why do RNIB ECLOs need supporters' help?

I wouldn't want to imagine any of my close friends or relatives going through a sight loss diagnosis without knowing what support is available. There are lots of people out there who've never experienced sight loss, who don't understand how much of an impact it can have on a life. If you imagine that it was your mum, your dad, your daughter, your son, you would want them to have access to the most up-to-date information and emotional support, to give them the reassurance that there is a positive future ahead.

Without an ECLO, there's nobody there to give them that information. We are vitally important for patients to be able to know what support is available, to know how they can access it and to have that continuous access to information. Our supporters make this possible; we wouldn't be able to help without them.