Patients with loss of vision in one eye are often advised that they will adjust to the change within a few months to a year or two after the injury. For many, like my client Peter, their sense of loss is lasting and profound, as they learn to live with vulnerability and loss of independence. Peter was already in his seventies when a four-month delay in diagnosis and treatment of acanthamoeba eye infection left him permanently blind in his right eye. When he attended hospital with corneal inflammation after a gardening injury to his eye, his increased risk as a contact lens wearer should have prompted the hospital’s eye clinic doctors to investigate whether his eye could be infected with an acanthamoeba, a virulent and potentially dangerous microscopic organism that is found in soil or water. During four months of delay he was treated unsuccessfully for common viral, fungal and bacterial causes of infection. By the time acanthamoeba keratitis was finally diagnosed, it was too late to save the vision in his eye. Six years after the injury, we caught up with Peter’s son, James. He was living at home with his parents when the sight loss occurred and supported his dad through the diagnosis, treatments and significant life changes that followed. We asked him how his father had adjusted to the loss of vision in his eye. Side effects and despair during diagnosis and treatment “My dad’s suffering started before he got the diagnosis. You could see it was taking its toll on him. Mentally, physically, he was just worn out. Then, after the diagnosis he had to take these really expensive prescription drugs, but they made him really ill. Out of everything with his eye (and his eye has been really bad) that completely destroyed him. Those drugs were savage, and had he not had the misdiagnosis he would have never needed to take them. It was like, ‘ ****, it's too late. Your eye’s gone now and there's nothing we can do anymore, so let's give you these drugs and hopefully they can get rid of the bug.’ But they made him so, so ill. I remember picking him up off the floor one day and he was crying. It was horrible to see him in that way because before all this happened, he was such a strong person.” No advice or information about vision rehabilitation People with any form of sight loss disability are entitled to vision rehabilitation, but Peter wasn’t offered any psychological support or advised about vision rehabilitation by the hospital or his GP after his sight loss was diagnosed. “No they didn't, no. He would probably have got leaflets or handouts, but they said nothing specific to him. They never offered him a service or anything like that. I know for a fact my dad would have accepted any rehabilitation if it had been offered, but there was a total lack of offers of help.” After the diagnosis Peter had surgical treatments, including corneal transplant, skin grafts and cataract removal, in an attempt to salvage his sight in his right eye. The treatments failed to restore his vision, leaving him vulnerable to further sight loss caused by injury, treatment or health conditions affecting the other (left) eye. “He went to the GP for his cataracts in his other eye, but obviously that has an impact on whether he goes ahead with surgery for that or not, because the risk and the impact on him is a lot higher now if something went wrong.” Tripping accident from loss of depth perception caused further injury to eye It was a fall caused by Peter’s loss of depth perception five years later that ultimately led to the removal of the sightless eye. James recalls, “When he fell over into the road, he missed the kerb. It was the same when he fell down the stairs. He can't quite see where the edge of the kerb or the step is, and he misses his step. So, he was out shopping with my mum in town and they were crossing the road and he went to step down the kerb and he missed the kerb. He ended up falling into the road and hitting his face first and, it sounds horrible, but he burst his eye. I think there was a policeman walking by and he said, ‘There is fluid everywhere. It looks like you just burst your eye.’ He’d probably never seen anything like that before. “So, my dad went to the hospital and they said that he'd got nothing left. His eye was destroyed. It was just goo at that point. He was really upset about it. We were meant to be getting on a plane that night to go on holiday but obviously my dad couldn't go. And that was bad for him, because he didn't want to miss out on that. So, he had to have his eye removed. He didn't want to, but he’d got nothing left, so, he ended up having it removed. “But then, weirdly, that was a blessing in disguise because his eye had never healed and it was gritty and sore and was always causing him so much pain. When he first had the eye problem and was going through all of this nonsense with the hospital giving him creams and steroids which we now know were all the wrong thing, he would be eating his dinner and because there was so much pressure in his eye, he would bite and then I’d see tears coming out of his eyes and he'd have to go upstairs and lie down because he was in so much pain. It was horrible for me and my mum to watch, because he couldn't eat his dinner without the pressure of the eye. He was just so fed up, and as time went on, he had all these operations and it got better, but there were still some days, way after the diagnosis, where his eye would be really red and he'd be down, because it was sore and really hurting him. He couldn’t see out of it at that point. It wasn’t doing anything for him. It was just causing him pain and it was it was clearly getting him down because he’d had almost six years of constant pain and annoyance in his eye. So, barbaric as it sounds, having his eye removed, and I'm sure nobody wants that because it just sounds horrible, actually it was no longer doing anything for him and it was causing him more discomfort than it was worth. “The sad thing is that, had he known years ago that it would just cause him problems, he would have had it removed instead of them trying to save it for however long they tried to. He had skin graft after skin graft after the corneal transplant; so many operations on it that didn’t do anything. It just made things worse with more stress and more pain, but that's hindsight, isn't it? His eye was so far gone and they were trying to save it, but it was pointless, really. It sounds horrible to think that he’s happy that he’s had his eye removed. It really must have been really bad for him to be happy to have it removed.” Impact of partial sight loss on independence Has Peter’s loss of vision in his eye affected his independence? His son, James, thinks it definitely has. “I think the biggest thing for him has been losing his independence and being reliant on someone all the time. He's changed so much. [Before the injury] he was so independent. He was the handyman. He did everything on his own because my mum isn't very outdoorsy and just likes being in the house or in the garden. So, my dad would go out on his own because he wants to go off and explore. He'd go for walks on his own. He liked going down to the beach on his own and going for a swim. But now my mum has to be with him all the time because he just doesn't feel safe going on his own. Sometimes me and my missus invite him to go out with us because my mum doesn't want to go and he can't go on his own.” As a former maintenance man, Peter still hasn’t accepted that it would be safer to leave household maintenance and his habitual tasks to someone else. “He's stubborn, so he still tries to, but he can't, and then he ends up hurting himself. I go round there and he's got grazes and bruises on his knees or a cut on his head because he's tried to do something because that's what he's always done and he's ended up hurting himself. I've helped him out because he's got the knowledge but doesn't have the ability to do it. So he'll be like, ‘Can you do this for me?’ And then he'll tell me how to do it and I'll help him do it, but he does still try himself. “My mum used to do part of the cooking and he'd normally cut up the veg, but now, if there's anything like cutting, my mum does that. He’s quite stubborn and still tries to do it and ends up hurting himself. “My dad always made the coffees in the morning. He'd be down before my mum and he would make the coffees and then take the coffee to my mum in bed. He can't do that anymore because it involves pouring boiling hot water into cups but he can’t pour water into a cup anymore because he misses the cup. There are aids and things that can help but my parents are quite stubborn and set in their ways. So my mum does it now but that means that he ends up having his coffee later than he wants to because she gets up later than him.” Driving after loss of sight in one eye In the UK, drivers who lose the sight in one eye are still legally able to drive if they meet DVLA’s eyesight requirements and have adapted to their sight loss. Peter used to do all the driving before losing the vision in his right eye but can no longer drive safely, leaving him dependent on his wife and sons, and severely restricting his independence. “He just turns the car around when Mum asks him to. That's all he does. He's reliant on my mum now, and it's really hard because my mum doesn't like driving in the dark. So, they are always under this curfew now where they can't be out late unless they get taxis because the buses don’t go up the hill where they live. My dad’s got quite bad knees, so he can't walk up the hill. So he can’t be out late anymore. So whereas before [the eye injury] he would just drive himself, he’s now reliant on her. He's lost his independence and he hasn't got that back. Yes, he has got older, but this is not a result of old age. He’s reliant on my mum to take him places but she can't drive in the dark and my dad can't drive at all. So, he's stuck.” Leaving their self-restored ‘forever home’ owing to road safety fears after vision loss Before his acanthamoeba eye infection, Peter and his wife lived in a bungalow that they had lovingly renovated to be their ‘forever’ retirement home. It was ideal for their needs and close to local amenities and transport links, but after his sight loss, Peter no longer felt safe whilst crossing the busy road. James recalls, “He used to go out for walks and where they lived had quite good bus routes and he could get on the bus and go down to the seafront. He did that all by himself for years. He'd go shopping on his own and he'd go to a little pub down the road and watch the football. But they lived on a really busy road, not a main road, but it's a cut through that goes to the hospital. So, it was constant traffic, all day, every day, and then just down the road, there's a roundabout and it's horrible. It's just so chaotic. Now my dad can't see, and as soon as he walked out of their house, he was basically on that road. Even though it was very flat around there with good transport links, he didn't feel comfortable anywhere further than the end of the drive. He just didn't want to go out because he knew that he could trip and fall if he's not with my mum. My mum would rather be in the garden than going out and about with my dad, and if Dad wants to go for walks, he doesn't want to be always relying on my mum. So they decided that it was probably best that they move somewhere quieter, away from a busy road. “Where they live now is so much quieter for them. They really like it. It's a really nice area. I think my mum didn't really want to move, but they did and she likes it now as well. They've got a nice garden and a bit of forest just behind the house where my dad can go for little walks. He can't go any further than that, but they are happy that they made the move. “The stairs are a worry in the new house, but he takes his time. There's a spare bedroom downstairs and I think my dad might eventually start using the downstairs bedroom. He's got his own toilet down there as well, so he doesn't have to go very far.” Finding the right solicitor for a sight loss medical negligence claim When Peter’s family began thinking about making a medical negligence claim, it was important to them that their solicitor was experienced in acanthamoeba keratitis blindness claims. James recalls, “It was my mum who mentioned it initially. She asked me to do my research and look into it. I scoured the internet, Google, looking for keywords and any solicitors that have handled this particular kind of case before. I thought it would be better to go with someone that's already dealt with a case like this because they're going to have a bit of knowledge on what worked and what didn't and what to look out for. So, I did my research and found an article written by Sita Soni at Boyes Turner. It was about someone that was probably considerably younger than my dad, but had a similar kind of acanthamoeba case. I read it to my mum and I was like, ‘Wow, look, there's a solicitor that's dealt with this exact thing before, with the misdiagnosis that it was something else and it was an acanthamoeba. I thought this is perfect. So that's when I contacted Sita. I was not sure if we even had a case or not, but she said that we did.” Peter was still undergoing post-diagnosis surgical treatments to try to save his sight and was still frustrated and struggling to cope with the challenges of his new disability. James handled the day-to-day communication with us regarding the claim, and Peter joined our calls when I needed him to give instructions or receive important advice. I enjoyed working with James and was struck by how family-oriented and supportive he was, always ensuring that his father was looked after and his needs were met. Looking back at the claims process, James comments: “Obviously having to go up and do the eye assessments took quite a bit of time, but mainly the claim just happened in the background. I was dealing with it and I would tell my dad what was happening and update him but from my perspective, it was just ticking along in the background. “I would 100% say to anyone in the same situation to go and seek legal advice. And if you have anything, especially if it's eye-related, then you need to go and get it checked and get a second opinion as well. Had my dad got a second opinion, then this would have been a completely different situation. Make sure you go and get a second opinion and if you think that you have been misdiagnosed and you've hurt yourself from it, I would 100% seek legal advice.” Learning to live with sight loss in one eye Six years on, has Peter adjusted to living with the loss of vision in his right eye? For James, that depends on how you define ‘adjustment’. “In terms of learning to live with how he is now, yeah, he probably has, in terms of being more cautious. When he first had it, he'd walk downstairs like normal and not think too much about it, but he is a lot more hesitant now with anything he does. Now, for instance, at the top of the stairs he takes his time because he has fallen down the stairs. It wasn't good. It was years ago now, soon after he lost his sight in one of his eyes. I guess he just has to be more cautious now. “He's just so much more vulnerable now. I think that's the best way to put it. You can't even walk up behind him because he can't see you from that side. He has a blind spot. He's so vulnerable and has to think twice before he does everything. As a family, we're all very mindful of that but the general public aren't mindful of that, so he has to be very careful when he's out and about. He can't be around busy places. We've been to fireworks so many times over the years but we went a couple of years ago on bonfire night and it was very busy and he just couldn't take it because there were too many people around him. He couldn't see properly and hasn’t wanted to go again because it didn't feel safe. “It has changed him a lot, but he hasn’t adjusted. I've seen it firsthand. I don't want to sound all negative because he's been through so much and recently seems so much better in himself. He’s come to terms with it and is learning to live with it but he's so vulnerable. The difference between how he was before and how he is now is like night and day.” Closure, compensation and a family-supported cruise after a successful claim Peter’s claim settled without the need for court proceedings and the hospital apologised and admitted liability. Peter is relieved and, despite his challenges, he is ready to move on, secure in the support that he has from his family. “He can move on now. The claim’s done. They’ve admitted it and he got a letter from the NHS a couple of years ago admitting liability and basically saying that they apologise. It did help but it’s a little too late. It's nice to have that acknowledgement, but you don't want to be in that situation in the first place. Obviously, the money helps. It's nice to have the money, but he'd trade the money any day to have his sight back. “Believe it or not, the first thing he’s done with the money is book a holiday for all of the family to go away together… I think that was one of the most important things he wanted to do when the claim came through because holidays are so important and family is so important to him and my mum. My dad doesn’t feel safe in busy places like airports, because he can’t read the signs or see where he’s going, but he won’t need to do anything on this cruise. He said to me when he booked it, ‘Just tell me where to sit and I'll be there.’ He doesn't have to do it; we’ll do it all for him. That's why he feels like he can go, because we're going and we're going to take care of him.” To find out more, you can read our case study on securing an admission of liability, and our follow-up report on achieving a settlement for delayed treatment of acanthamoeba keratitis. If you have suffered severe injury as a result of medical negligence or have been contacted by HSSIB, MNSI or NHS Resolution, you can talk to a solicitor, free and confidentially, for advice about how to respond or make a claim by contacting us.
