4. Day 1 - Low Vision and Rehabilitation

My insomniac tendencies paired with the fact that I am STILL jet-lagged, (and haven’t done anything to even try and change this), culminated in a sequence of unfortunate events where I was unable to sleep until after 5am local time. I say after 5am because this was the last time I checked my phone and following this I’m not sure how long I lay there with my eyes closed until I finally dozed off. I was stuck in a constant cycle of trying to sleep, getting annoyed that I couldn’t sleep, and then being unable to sleep because I was frustrated and bothered. Various other factors such as the humidity, the infrequent but sudden buzz of a mosquito nearby, and the loud horning from the noisy main road outside my accommodation were all contributing factors. Nonetheless, I managed to get some sleep eventually and it’s the taking part that counts right? Participation award or something like that. Much to my dismay, my alarm started blaring from my iPhone and echoing around the room at 8.15am, leaving me 45 minutes to shower, change and prepare for my day.

The better news is that my 3 course mates arrived late last night, which means I’m no longer alone! At 9am we reported to reception in the education centre, located on the 1^st floor of the hospital, where we met the contact that we’d been liaising with to organise our placement and our stay. In all honesty it was great to meet someone who had an instrumental role at the hospital and was fluent in English! We were taken on a tour of the hospital, so that throughout our time here we would be able to find our way around to our designated departments. The layout of the hospital is a lot different to what most people would expect, spanning over a total of 6 floors and 2 large connecting buildings. Each floor is occupied by a particular specialism or two, and all the necessary diagnostic screening tests for these departments are located next door to the relevant clinical rooms. Although this isn’t really a cost-effective way as multiple floors have extremely similar diagnostic testing rooms, it provides an easier method for the patients to orientate their way around and makes for a quicker consultation – especially here where the volume and patient footfall is extremely high. Interestingly the top floor of the building is where all the labs are located, focusing specifically on biochemistry, cornea’s and on-going innovative research into the field of optometry. Each floor was organised in a similar way in that the clinics occupied the left wing, and the whole right wing consisted of large patient waiting rooms to manage the large number of people awaiting a consultation or treatment.

For day one of my rotation at LVPEI, I was placed in low vision and rehabilitation clinic, which is something that was highly recommended by academic teaching staff at my University. These clinics occupied the left wing of the ground floor, consisting of 6 low vision clinical testing rooms and a load of other areas dedicated to specific types of rehabilitation therapy to support patients. I started off by observing a number of low vision patients, most of which were unable to read any lines off a testing chart and instead had to respond to tumbling E optotypes. Vision was extremely poor as expected, with most patients I observed reading around 1.60 on LogMAR charts. For those of you reading this who don’t have an optometry background, this means that what we consider ‘normal’ to view from about 240m, these patients can just about view from 6m. To put that into context, imagine standing at the end of a field that is 2 football pitches in length and trying to read a sign on the opposite side – what you can see, is what these patients will see from 6m away. In fact, 100% of the patients I saw today would be unable to read this blog in size 12 font and would require visual aids to magnify – or rely on audio descriptive material. One thing I found strange is that all of the medical records were completed in English, even though the majority of patients could not speak it. The optometrists used LogMAR and the American style 20/20 way of recording vision, and the note taking was pretty extensive (my clinical skills tutors have made sure I understand this is a good thing).

The most memorable patient of my day has to be a 25-year-old male, who was accompanied by his Uncle. For confidentiality as well as my own selfish and personal reasons to make this easier to explain, I’m going to refer to him as Mr X. Mr X explained he had travelled for 2 days to come to visit the centre of excellence in Hyderabad, as he had been referred by a secondary care centre in his local community and was desperate to seek help. Mr X seemed to be a rather intelligent man, recently graduating with a BSc in Computer Science and owning his own computer shop. It was clear his vision was extremely poor from the onset, as he was carefully guided into the room by his relative and seemed to stare blankly, without really fixating on anything in particular – suggesting he was unable to recognise objects and faces in front of him. His pupils seemed abnormally dilated, and he complained of worsening vision for 11 months, which he described as very blurry, limiting his ability to perform normal tasks and hindering him from working to earn a living and support his family.

Mr X was unfortunately diagnosed with Leber’s Hereditary Optic Neuropathy (LHON), which is a rare disease that results in loss of central vision (Told you I’d see crazy pathologies). The genetic inheritance of this condition is thought to have a mitochondrial pattern of inheritance – denoting that this must have been passed on from his mother, as we gain our mitochondria from the egg (as oppose to the sperm). After assessing the patient’s vision, where he could only view the 6/60 line of the testing chart from about 30cm away from the screen (so what we see from 60m he see’s at 30cm) and carrying out visual field tests, it was apparent how poor his central vision was. Interestingly, when the patient was 30cm away from the screen and trying to read the letters, he appeared to look at the wall either side of the screen to read them – as when he looked at the screen, he reported just seeing a vague spread of light. As the optometrist explained his findings in the local dialect, I could see the desperation on the patients face as he enquired about an eye transplant or brain transplant, thinking this would be a suitable way to cure his condition. Unfortunately, neither of these are treatments that are physically possible to carry out currently, and Mr X’s chances of reviving his vision are fairly non-existent to be brutally honest. Management of LHON is guided more towards supportive techniques, to ensure the patient can maintain mobility in their home, and possible vocational support to allow them to earn an income.

This brings me onto the rehabilitation side of this department, which is comprised of speech, physio and occupational therapists, as well as IT training and vocational skill workshops. I was amazed at how much of an emphasis is put on the continuity of care for these patients that initially visit with visual impairments, however they also receive a wealth of support in various other aspects. The consultant explained that it was fairly common for individuals to present with more than one disability, with vision loss often being paired with poor mobility and low confidence. I was told that in children with low vision it is extremely common to see poor upper body strength as its unlikely the child has crawled, and poor fine motor skills meaning that they are unable to grip things such as hold pens, which can have a knock-on effect on their educational development.

LVPEI recognises that losing the sense of vision can affect an individual in many ways, and a high proportion of low vision patients are referred to counselling (in the room next door), to help them deal with their concerns and manage expectations. LVPEI are the only non-government organisation who are legally allowed to provide disability certificates to those who fit the categories based on their sight, which helps subsidise care and travel for the individual. There has been an alarmingly high rate of depression linked to loss of vision, and I find this easy to believe as I suffer from my own depressive thoughts about my battle with keratoconus – and this only really effects one of my eyes, I feel incredibly grateful that my other eye has been completely saved and that I near enough have perfect vision. Today provided me with an even more personal realisation of how much of a dramatic effect sight can have on an individual’s life – take Mr X for example, following his consultation today how do you expect him to continue to run his shop? To provide for his family? Today was the first day he was told it would not be possible to save his vision, this really puts things into perspective and you should truly appreciate what you have, even if your eyes get irritated by contact lenses or your spectacle lenses are so thick they stick out the frame. The fact you can recognise the faces of your loved ones and be able to see your surroundings so that you can be mobile and travel from one place to another without thinking twice, is enough for you to know you are blessed. (Sorry got a bit deep a bit quick, but straight facts).

It was incredible to find out that LVPEI have many volunteers who run interview workshops every Saturday, to train those who lack confidence. In addition, these patients liaise closely with staff who ensure patients with disabilities are fairly represented within the work place and help arrange interviews for you to attend to gain a job. It’s astounding and quite touching to see the amount of support the patients receive, rather than just having a consultation where they’re told their vision is poor and then left on their own to survive the cruel world. In the IT training room, patients are trained to use computers from the internet to Microsoft applications, so they can gain work in this field. They often have magnifiers specific to their own prescription and needs, which enables them to view the screen well.

In the vocational skills area I could see examples of many paper bags and other pieces of artistic work that patients were encouraged to perform, to create products they could sell to provide an income. In the occupational therapy room, which was aimed at providing patients with the necessary skills to be self-sufficient, it was interesting to see that the main two methods to counteract low vision were using high contrasts and tactile sensations. For example, the cooker had 3 different stickers of different thickness next to the knob controlling the heat of the hob, the thicker the sticker – the higher the heat setting. This is an effective way of patients being able to safely use appliances to cook meals. In addition to this, the majority of the cupboards in the room were white, with large dark navy circles around the handles – this contrast made it easier for the patient to see where they need to pull to open the cupboards, rather than sliding their hands along till they found the handle. I was fascinated by the coping mechanisms employed to perform daily tasks.

A number of children with special needs regularly attend clinics at LVPEI specifically geared towards trying to enhance their development, as many of these children’s cognitive age is many years behind the norm for a child born in the same year. It was interesting to see how colourful visual aids are used to keep the children engaged, and they are continuously encouraged to keep trying, positively rewarded for any improvements they make – hoping that this would spur on a cycle of development due to positive feedback. Children up to the age of 14 can regularly attend a number of sessions over a cluster of weeks, and they are eventually supported by the institute to help find a school that will cater for their specific needs. As far as the staff I spoke to at the hospital today were concerned, LVPEI are the only hospital in Asia (maybe even the world?) who provide this extensive range of help and therapy to their patients, under the same roof – believing that all senses are linked, and strengthening other senses helps overcome a deficit in another.

Finally, I was introduced to a completely new piece of technology at LVPEI, which they had purchased within the last 6 weeks, called a Sanet Vision Integrator. This was specifically used for assessing the vision of children with special needs, as it uses a number of engaging tests that maintain the attention of the children using them. I was able to use this myself as a demonstration to a young 5-year old boy with down syndrome and visual impairment, and it was easy to see how the constant changing and colourful targets maintain focus on the task at hand. Especially when compared to alternative tests that children may lose interest in, such as contrast sensitivity tests on pieces of card of the use of LEA symbols, where the children can become easily distracted by other things in their surroundings. It was explained that the Sanet Vision Integrator is also extremely successful when testing children with ADHD, as many other tests fail to grasp their full attention and maintain it for long enough to record reliable and accurate results. This piece of technology is something I can imagine being of use in countries such as our own, if it hasn’t been already.

Today was taxing, with long hours in the heat – but the time passed fairly quickly due to the interesting cases I was lucky to observe. I think I’ve gained a fresh and new appreciation for the sense of sight, which is something I already am incredibly grateful for. Tomorrow I’ll be working on ocular prosthesis and ocularplasty, which includes a wide range of surgical procedures that deal with the eye socket, eyelids and tear ducts – essentially dealing with the reconstruction of the eye and associated structures.

Praying I manage to get to sleep at a decent time tonight (its 11.30pm right now), as i've got to be up bright and early! Going to try and start including some pictures in my blogs now that i've managed to sort out the WiFi properly! Thank you to all still continuing to support me on my journey. Watch this space…