'Having that familiar voice on the end of the phone does make a big difference'

Posted: Thursday 28 May 2020

“Karen, the Macular Society’s regional manager, said to me: ‘You sound like you’re a bit lonely, Joan?’ And she was right. The only family I have in Northern Ireland is my sister in Belfast, who’s 92; the rest are on the other side of the world. She explained to me that the Macular Society had a befriending service and asked if I’d be interested in having a regular call from someone? So I said yes, and I’m so glad I did.”

Since late 2018, Joan Carr has been receiving a regular telephone call from a Macular Society telephone befriender. Joan had been enjoying attending the Society’s macular support group based in her hometown of Newtownabbey for a number of years. But when a combination of her sight loss and other health issues made it difficult for her to get to meetings, she signed up for the charity’s free befriending service. And it’s made such a difference that the 87-year-old is now encouraging others to do the same.

Joan, who was diagnosed with macular disease in 2014, said: “I was a very keen reader and spent quite a lot of time reading. Before I was diagnosed, I’d started noticing that I was having a bit of difficulty making out the words on the page, but I didn’t really think anything of it.

“Over the years, I’ve been over to Australia many times to visit my brother and his family. My sons are out there too and I’d just booked to go again. About five weeks before I was due to go, I decided to go to my local walk-in clinic for a health check, just to make sure I was okay before I did the long journey.

“On the morning I was planning to go, I woke up, looked out of my window, and I could see this big black circle. I mentioned this when I got to my health check, and the doctor told me to go straight to the hospital, and that’s when they diagnosed me.”

Joan was told she had dry age-related macular degeneration (AMD) in her right eye, and wet AMD in her left. Although there is no treatment for dry AMD, Joan continues to receive regular injections in her left eye at Mater Hospital’s macular clinic in Belfast. In Northern Ireland, it is estimated that more than 55,000 people have macular disease, with 10 new cases being diagnosed every day.

Joan said: “It was terrible; it really scared me and I immediately had myself going blind; I was in such a state. But the consultant was able to reassure me and told me that the right eye was still fairly healthy, and it was the left one I’d need injections in. Rather than wait for the treatment, I delayed my trip until later in the year so I could have my first injection, and I’ve been having them ever since.”

She joined the Macular Society after hearing about the charity through the hospital and began attending her local peer support group. By 2018 however, Joan was finding it increasingly tough to get to the monthly meetings. Alongside her macular condition, Joan has osteoporosis and also suffered a spinal fracture which left her with neuropathy and in constant pain.

She said: “When I first started going to the group, I was able to drive there. It wasn’t far, but after a while I began struggling with the journey home in the winter months, as it was getting dark. I tried to go by taxi for a while, but I was getting so many aches and pains, it just got too difficult.

“Karen Toogood, the Macular Society’s regional manager, knew that I was struggling and in quite a bit of pain as well, and that’s when she suggested the befriending calls.”

Joan’s calls with her befriender happen every fortnight, although while she has been shielding following the coronavirus outbreak, she has been receiving a call once week.

Joan said: “I’m really grateful to Karen for telling me about the service and I clicked straight away with the lady that rings me. We usually speak every fortnight, but while we’ve been in lockdown, she’s been calling me once a week and that’s been really wonderful.

“I obviously speak to my family, and I’ve got a neighbour who I chat to and she’s been leaving shopping outside my door for me during lockdown, but I don’t get that much opportunity to talk to very many people really. So I do look forward very much to the calls and hearing her voice. I often apologise to her actually, because we can lose track of time nattering away, and the calls will go on for a long time!

“We very rarely mention sight loss; we tend to talk more about common interests, like Tai Chi, which she does and I’ve been interested in learning about for a long time. We can talk about our families and things like that, and that’s lovely to do.”

And while she eagerly awaits the next call from her befriender, Joan wouldn’t hesitate in recommending the service to others.

“I’d definitely encourage anyone who’s interested in receiving a call from a befriender to contact the Macular Society. Even though it’s someone you’ve never met, just having that familiar voice on the other end of the phone does make a big difference.”

The Macular Society has been awarded a £40,000 grant from The National Lottery Community Fund to help provide an increased range of remote services in Northern Ireland, including telephone befriending, following the coronavirus outbreak. The award of this latest grant takes the total amount of funding awarded to the Macular Society by the National Lottery Community Fund in Northern Ireland to £690,000 since 2009.

Since the Society suspended all of its face-to-face services in March we have seen a huge increase in the number of volunteers coming forward, including a number of telephone befrienders. If u=you are interested in volunteering, or are interested in finding out more about the service please call 0300 3030 111 or visit macularsociety.org/telephone-befriending.