BJ Edwards shares his experience of accessing eye care in the 21st century.
I have always received excellent medical care. As a patient who has endured a number of operations, prolonged stays at the hospital and numerous outpatient appointments, I have observed some excellent practise. Sadly, I have also observed some less than excellent practise during my decades of experience. As a patient, one often suffers stress or anxiety, so it is difficult to remain objective and cogent when considering one’s own care. I accompanied my partner as she underwent surgery. As a bystander, I had the opportunity to objectively and dispassionately observe my partner’s treatment. I am disappointed and saddened to report that there are glaring issues that need addressing.
Firstly, it is important to tell you that my partner and I are totally blind. For sake of clarity, neither of us can see anything. I realise that in the era of early diagnosis, research, advanced surgical techniques and medication, it is more unusual than it used to be. So, when I visit eye clinics as an outpatient, I go alone. Because of Aleksandra’s operation, I accompanied her. Here we encounter our first problem – a problem that is repeated again and again. The communication of both the person on reception, and the porters is limited. This means that we are spoken to in a loud and slow voice, and often talked about. There are two ways to get around this bout of patronisation; either get one of our names and use it, or simply touch an arm or shoulder to denote the fact that we are being addressed directly. In my experience, the person on reception, hovers on the edge of being rude, but with a few tweaks, this can be improved. It is fair to say that both the person on reception, and the porters are frontline staff. However, many of the porters have very poor communication skills. This is very worrying, as often they are helping people who will inevitably be experiencing heightened levels of stress.
After surviving the gauntlet of trying to find the reception desk, communicating and eventually getting a porter, we are often man-handled, grabbed or pushed towards a chair, or propelled towards our desired location. It seems very clear to me that any training porters have in guiding, is either non-existent or negligible. I have experienced very poor guiding on too many occasions for it to be simply bad luck. In any other walk of life, it would be socially unacceptable to man-handle a person, male or female, but it appears that if you can’t see, and visit eye clinics, you are treated to poor communication and a dose of pseudo-guiding which is more akin to a citizen’s arrest or amateur arm lock.
But the fun doesn’t stop at guiding. When we arrive at the ward, the nurse on reception asks the porter for my partner’s name. This is the height of patronising and very much akin to “does he take sugar?”
I have no idea why the nurse didn’t simply ask us for the requisite information. The sense of disempowerment continues as, when it is time for us to go to the ward, Aleksandra had to explain and justify the fact that she can’t see. This elicited a moment of shock before the nurse deemed it appropriate to guide us. Surely nurses should have access to basic information like levels of eyesight. If they did, this would eliminate a dozen awkward moments, when we have to explain in front of a room full of people that we really can’t see, and that we really don’t have anyone sighted with us. Surely, with a few tweaks and a little more information and training, the sense of awkwardness and disempowerment would be diminished.
On the ward, things continue to be challenging. Nurses don’t say their names and announce their presence, they simply appear like genies.
Some of the nurses have very poor communication skills, making discussions about care and procedure very difficult. Allied to this, often, nurses will just do things without communicating what they are doing. This is very unpleasant for somebody without sight. It seems that there is a distinct lack of empathy, coupled with a lack of training.
In recovery things got a little better. However, a nurse asked why Aleksandra had an operation if she can’t see. This question was staggering in its simplicity and naive in its tone, symptomatic of the dozens of minor and not so minor issues that we experienced over two days.
To me, someone who is totally blind, someone with a good deal of experience in a number of capacities, it seems abundantly clear that there is something lacking; poor communication, poor guiding, inability to communicate, all add-up to produce quite a bleak picture.
It seems that the nursing staff have little experience of dealing with blind people, and as such they either treat us as if we are stupid, or simply don’t communicate at all. There seems to be a lack of empathy, a lack of understanding, and something approaching panic. One would expect such treatment in a general hospital, but not at an eye clinic.
I think additional training, not just video, not just hand-outs, but face to face training for porters, receptionists and care staff is needed. Being in hospital is traumatic, being treated like a third-class citizen is even worse. The key is communication and empathy. Without these vital elements, there is no care, just the administering of drugs.
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