I’m Jenny, one of RNIB’s ECLOs and every day, I help people with sight loss face the future with confidence.
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.
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.
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.
For people who are new to sight loss, the coronavirus pandemic has added a whole new layer of anxiety. It can have a really negative impact on their confidence.
Due to the pandemic, a lot of face-to-face services have been postponed, so not only am I dealing with patients who have had a recent diagnosis, but a high percentage of them are living on their own or shielding.
They have anxiety surrounding losing their sight, but they're also having to isolate and are concerned about accessing shopping and medication.
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 had been very frightened to leave the house and had missed appointments. Approximately 1,300,000 eye appointments have been 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.
A big part of my role has been reassuring patients and trying to give them a step-by-step guide on what will happen when they go into the eye clinic. However if they don't go to their appointment, I am also here to offer practical advice and emotional support if sight has deteriorated.
I’ve helped patients use their smartphones to access Zoom or FaceTime. Being able to communicate with relatives and friends has helped a lot of people. It's about finding some form of normality in a very strange and topsy-turvy situation.
At the beginning of the pandemic, we did something called coronavirus wellbeing calls. I contacted every single patient who I'd been in contact with over the previous 12 months who were over the age of 69 and living on their own. One example is a lady aged 100 years’ old who just needed somebody to talk to. She was feeling really lonely, so I would ring her every week for a chat. I identified that she'd benefit from Talking Books, so we sorted out an RNIB library service, access to Talking Books and the local talking newspaper for her. She had a digital telly, so we looked at all the digital radio channels that she could access too.
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:
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.