A diagnosis of sight loss is extremely hard to deal with and it is vital that people have the right help and support available to them. Unfortunately, for John from Haddington, his initial sight loss journey was a struggle. He had to wait over 6 months for an initial eye appointment and then a further six months to get his Certificate of Vision Impairment (CVI).
John started to struggle with his vision around 4 years ago. He noticed that his vision was deteriorating, especially at night, so he made an appointment with an optician to see what was happening. John was told he had macular degeneration and that he needed to make an appointment with the eye clinic at St Johns Hospital in West Lothian as soon as he could. This was a huge shock for both Jon and his wife Trish, as he had to give up driving and with that a lot of his independence.
Unfortunately, John then had to wait over 6 months for his appointment at St Johns, which basically meant his life was placed on pause. John was very down as he struggled to come to terms with what was happening to him. After John was eventually seen at St Johns, he then had to wait another six months to receive his CVI certificate after a mix up over what council area he lived in. He only received his CVI certificate after he contacted Sight Scotland and asked for help.
CVI Certificate mix up meant John couldn't access services that would help him maintain his independence
John explains: “It was a huge shock when I was diagnosed with macular degeneration, I suddenly had to give up driving and I felt really quite down and isolated. I wasn’t sure who to turn to, or who to ask for help, I was just so lucky I had my wife Tricia to help me. It all seemed to happen so quickly, I was having anxiety attacks and didn’t want to leave the house. You expect when you get a diagnosis of sight loss that all the help would be in place and everything would run smoothly, but this just wasn’t the case, it was all very distressing.
“Firstly, after my initial appointment with the optician, I had to wait six months for an appointment at St Johns Hospital in West Lothian, even though I live in East Lothian. This was such a long time to wait, it felt like my life was on pause during this time, I basically stayed in the house for six months and was very down. It was difficult for my wife as well, we used to drive through to look after our grandchildren in Linlithgow every week, but all that had to suddenly stop as Tricia does not drive. I felt like I just wanted to give up.
“After my appointment at St Johns things got even more frustrating. I got my official diagnosis and signed the form and was told my CVI certificate would now be sent to my local council, but I waited and waited, and nothing came. I kept phoning St Johns and just didn’t get a reply, it was so frustrating. A CVI certificate is your medical evidence of your sight loss, so it opens a lot of doors for someone with vision impairment. It enables you to apply for travel passes, taxi vouchers, or benefits. The point of it is to give you a way of accessing services which can help you live as independently as possible with your sight loss.
"Another six months passed, this is now over a year since my initial diagnosis, and I still didn’t have my CVI certificate and I couldn’t speak to anyone at St Johns to get any help. Without it I felt like I had to justify my sight loss to people, it was just so upsetting. This was when I felt at my lowest, I was so down and angry, I couldn’t understand what was happening. This was when we called the Sight Scotland Helpline after finding it on the internet, and finally we felt that we had people on our side who could actually help. " John Howatt
After a year, John finally felt like he had people on his side who could help
“Another six months passed, this is now over a year since my initial diagnosis, and I still didn’t have my CVI certificate and I couldn’t speak to anyone at St Johns to get any help. Without it I felt like I had to justify my sight loss to people, it was just so upsetting. This was when I felt at my lowest, I was so down and angry, I couldn’t understand what was happening. This was when we called the Sight Scotland Helpline after finding it on the internet, and finally we felt that we had people on our side who could actually help.
“Colin Hilditch called me back within hours and told me what I needed to hear, he said he would personally get in touch with St Johns and find out what was happening. He soon discovered the mix up was because my appointment was in West Lothian and I live in East Lothian, and that somehow West Lothian had been written on my form. He arranged for the CVI Certificate to be sent to Sight Scotland so he could personally ensure that I would get it as soon as possible. I got it within a week, I really can’t praise Sight Scotland enough. I desperately needed help and they did everything they could for me. I really don’t know where I would be right now if we hadn’t called the helpline.
“Colin also arranged for Anita from the Sight Scotland Community Wellbeing Team, and Diane from the Rehabilitation and Mobility team, to come out and visit me to see what help I may need. It was great just to have people to talk to who understand what I am going through, and who could give me advice and tips on how to make life a bit easier so I could keep some independence. When you have a vision impairment it is the little things that help the most, like an auto-refill kettle so I can make myself a cup of tea or light sensors on the stairs to guide me up and down. Diane also helped me with my mobility and took me out for walks, talking me through everything which really helped with my confidence. I can’t thank them enough.”
Colin Hilditch, Head of Community Services, Sight Scotland, adds: “We were happy to help John in anyway we could, getting a sight loss diagnosis is hard enough without the worry that he and his wife had to go through. Getting a CVI certificate should be a simple process, but this is not the first time we have heard of hold ups which cause great distress. I would urge anyone with vision impairment to call our helpline if they need any advice or support, we are here to help.”
Living with macular degeneration
Macular degeneration is a vision impairment resulting from the deterioration of the central part of retina. It is commonly caused by age and does not usually cause total blindness, but it can make everyday activities very difficult.
John explains: “I have good days and bad days, but I can’t really see well at all. I cannot see any detail, I can see shapes in the house and because it is familiar I can navigate myself around, but my mobility is not great. I can’t read and can barely see the TV, but Diane showed me how to make my phone speak to me and introduced me to audible books which has been great.
“When we go out, I just do not feel confident, but the more I do it the easier it is getting. I can’t really see anything, so it is very daunting as you just don’t know what to expect. I don’t like going to the shops or going anywhere new, but we still go out for walks and sometimes go out for a coffee or some lunch. I am gradually adjusting and am now feeling less anxious.”
Sight Scotland aims to help as many people affected by sight loss as possible. Sight Scotland’s Community Services team offers help and support through a combination of home visits, community activity groups and via the helpline. People with visual impairment can lose their confidence, self-esteem, and ability to do many day-to-day activities. Our Community Services starts from a position of just wanting to help – help with information and advice, together with the practical and emotional support so many people with sight loss need. The service is free to access for people of all ages, and at all stages of sight loss, and their families.
Anyone affected by sight loss please get in touch via Sight Scotland’s helpline on 0800 024 8973.
We're here to help
Are you or is someone close to you waiting on a sight loss diagnosis? We offer free advice, emotional support and guidance for anyone experiencing changes to their sight, no matter where they are on their journey.