How RNIB helps Keith on his sight loss journey and achieve a “great quality of life”

After his diagnosis of age-related macular degeneration (AMD), Keith fell into depression. However, thanks to the support of an RNIB Eye Care Liaison Officer (ECLO), Keith is now confident, independent and thriving.

Keith was on the drive back from a holiday when he first noticed his vision was blurred in his right eye.

He then visited his local optician who advised him to go immediately to the hospital eye clinic. The consultant at the hospital told Keith that he would lose his vision in his right eye.

“When first diagnosed with macular degeneration in 2003, we did not receive a clear explanation of what the condition was. It was an extremely distressing time for the whole family and the lack of information made the feeling of uncertainty so much worse.

“I left the hospital with no referrals, no support and great trepidation about the future and how my life might change. When I left the eye clinic, I was in a state of shock and confusion. I couldn’t stop thinking, ‘Why me?’ I was scared about how this diagnosis was going to affect my whole life – my family life, my work, my ability to drive, my independence.”

Within three months of the initial diagnosis, Keith completely lost his sight in his right eye. “It was never explained to us how quickly you could go blind from macular degeneration. I felt bewildered and alone. No one contacted me; no one talked to me; no one came to the house. I suffered from clinical depression after losing my eyesight. With no help or advice, I felt very alone with my condition and I believe this contributed greatly to my depression. In 2007, I was diagnosed with Wet AMD in my left eye. I received some treatment to slow the deterioration and I now have around 40 per cent vision in my left eye. This means that I really struggle to focus on anything. Lighting also severely affects my ability to see. As a result, falls are common. It has made me feel very vulnerable. I’ve also suffered from symptoms of Charles Bonnet syndrome. All of this has really affected my confidence.”

“When I received my first diagnosis in 2003, I had no support at all. But in 2007, things were thankfully different. Following my Wet AMD diagnosis, I received support from an ECLO and it made a world of difference. I was introduced to the ECLO at a time when I really needed help. The ECLO provided initial emotional support as well as a wealth of practical information. I was told about local support groups and how to access support from the adult sensory team. The ECLO showed me that I didn’t have to go through this alone.

"The ECLO was also invaluable in helping me with the registration process. Becoming registered as Severe Sight Impaired completely changed my life. It enabled me to receive an allowance to buy accessible and adapted equipment. This helped me to regain my independence and my confidence. The ECLO provided me with catalogues of equipment that would make my life easier.

"I now have a CCTV magnifier and lots of other gadgets around the home which help me to live independently and reduce my chance of falling. I now also have various pairs of glasses with different shades which help me with glare that affects my vision. I also received a referral to an Independent Living Coordinator (ILCO). They visited me at home and advised me on adjustments they could make and products that would help me to be safe around the home. This was a big turning point for me and my family. Before the ILCO visit, we had been considering moving to a single floor home. But I learned how to make my home safer for me, which meant we didn’t have to move.

“The ECLO also signed me up for RNIB’s Living With Sight Loss course. These sessions were really beneficial as I got to speak to other people who understood what I was going through. It helped me to feel less isolated and more confident.

“I didn’t know about any of these services before I met the ECLO. ECLOs provide such a vital role. They signpost you to services that meet your needs. They give you clear information about your diagnosis and let you ask questions. They give you practical advice and guidance. They’re a consistent point of contact able to provide emotional support too. I believe every eye hospital should have an ECLO. I certainly felt better able to cope after seeing the ECLO. And now I feel much more positive about life thanks to the ECLO and RNIB’s support.”

“Thanks to the support I’ve received, I’m much more independent now. I get out and about as much as I can. I enjoy walking and I am getting used to getting the bus in my local area. I also use a symbol cane when out and about, which was provided by the ILCO. I feel more confident in the home now since the adjustments have been made.

“I am now an active campaigner for ECLO and sight loss services because I have experienced firsthand what a vital service they provide.”