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IN TOUCH 鈥� Retinal Vein Occlusion; Reading the Room

TX:听 25.01.2022听 2040-2100

PRESENTER:听 听听听听听听听 PETER WHITE

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PRODUCER:听 听听听听听听听听听 BETH HEMMINGS

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White

Good evening.听 Tonight, how to read a room when you can鈥檛 see who鈥檚 in it and what they鈥檙e getting up to.

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McKee

When you鈥檙e blind or have low vision, you鈥檙e relying on that main sense of hearing to process multiple channels of information whereas a sighted person can be looking across the room reading somebody鈥檚 conversation, whereas we have to only rely on the information that鈥檚 immediately around us.听 And there鈥檚 a lot of uncertainty about somebody giving us information from across the room because it could be for anyone.

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White

Psychologist Courtney McKee is blind but reckons there are plenty of non-visual ways to keep yourself informed.

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But first, there are many forms of visual impairment and it鈥檚 inevitable, I suppose, that the more common conditions get more coverage on In Touch.听 But listeners quite often ask us about some of the less well-known causes.听 So, tonight, we鈥檙e going to deal head on with one of your queries which has recently come in 鈥� retinal vein occlusion or RVO.听 Well, this is well beyond my pay grade so we鈥檝e invited Luke Nicholson, who鈥檚 a consultant ophthalmologist at Moorfields Eye Hospital and a specialist in medical retina, to help us out.

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Luke, first of all, retinal vein occlusion 鈥� what exactly is it?

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Nicholson

So, retinal vein occlusion, the arteries bring blood into the eye or into the retina and the veins get blood out of the eye, so it鈥檚 pretty much a circulation.听 And in retinal vein occlusion, there is a narrowing of the veins, caused by a thrombus or blood clot in that position.听 So, what then happens is blood can鈥檛 get out of the eye and causes problems to the retina.听 Of course, this thrombus doesn鈥檛 stay there forever or the blood clot doesn鈥檛 stay there forever but there is a narrowing as a consequence to it.听 And the problems can vary from very mild problems to very serious problems.听 It鈥檚 surprisingly quite common, of course, in my field I see patients with it, there鈥檚 1.5% of patients above 60 can get that condition.听 So, it is common in the elderly but it also happens in young patients as well.

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White

Are there warning signs Luke?

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Nicholson

So, it is something that happens very suddenly.听 It is something that you can wake up with or something that happened during the day.听 So, it鈥檚 very rapid and very sudden and it can affect a patient鈥檚 vision significantly.听 However, there is the spectrum.听 So, some patients can get it quite mildly and they may not notice it, for example, one eye dominant and it鈥檚 affecting the less dominant eye but you may not notice it until they close one eye, for example.听 Or it can actually affect a branch of the retinal vein which is not where we see out.听 So, it鈥檚 an area outside the centre, outside the macular, then patients may not have any symptoms and it could be an incidental finding with an optician or the diabetic screener 鈥� so patients who get their photos taken once a year for diabetes.

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White

Ian Ronacres is the listener who contacted us and he contacted us on behalf of his father, who鈥檚 recently lost nearly all of his sight in his left eye and his father is now worried that this may affect his right eye as well.听 What鈥檚 the probability of that happening?

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Nicholson

In terms of what data we have for, for example a branch retinal vein occlusion, this is affecting a section of the veins in the retina, the chances of having it in the fellow eye is about one in 10, 10%.听 It sounds high but it鈥檚 worth mentioning that you can affect a branch that you don鈥檛 see out of, so although it鈥檚 10% it鈥檚 less that actually become symptomatic.听 In terms of a central vein occlusion, so this is quite significant because it affects the vision entirely, the chances of it happening in the other eye is less than 5%.听 Of course, measures can be taken to reduce that risk.听 There鈥檚 a lot of cases where we find no cause specifically but we have looked at this in big data and found that hypertension 鈥� high blood pressure, high cholesterol, diabetes are all risk factors or even glaucoma are risk factors for having retinal vein occlusion.听 So, if a patient comes in who has the diagnosis of retinal vein occlusion, we want the patient to have the rest of their risk factors screened or assessed, so if there鈥檚 an undiagnosed high blood pressure, undiagnosed diabetes it鈥檚 best to get all that treated or optimised to reduce the probability of fellow eye getting involved.

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White

And are there actually specific treatments that you can give once sight has been lost in one eye, any treatments which a. could either restore any sight to that one or prevent there being a problem in the other one?

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Nicholson

In terms of preventing it in the other eye, there鈥檚 no direct treatment.听 So, anti-platelet treatments, aspirin, warfarin, blood thinners, for example, have not been shown to prevent it.听 Of course, if a patient has risk factors 鈥� smoking, high blood pressure etc. 鈥� and their risk of having cardiovascular events, so things like a stroke or high attack, is higher then yes, your GP normally would start a patient on aspirin.听 But from an eye point of view, there鈥檚 nothing has been shown to prevent it in the fellow eye, if all the other risk factors are already managed.

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In terms of treatment for the affected eye, where the vein occlusion鈥檚 affecting the retina, that鈥檚 something we can鈥檛 reverse or treat, sadly.听 But what we can treat is the consequence of it.听 So, there鈥檚 two main problems or complications that can happen with a patient with a retinal vein occlusion.听 One is swelling or oedema affecting the centre of the vision or the macular, that happens in about 80%, 70-80% of patients with retinal vein occlusion and this can affect the vision even more.听 Thankfully, we have really good treatments for this.听 So, if someone鈥檚 got a retinal vein occlusion that鈥檚 been worsened with swelling at the centre, the injections called anti-VEGF injections or steroid injections have been shown to be very effective in getting rid of the swelling and improving a patient鈥檚 vision.听 So, the success rate is more than 90% of patients who are receiving these injections will experience improvement.听 And one in two will find a big improvement.听 The only issue is patients may require the injections over a long period, over two years or three years, repeatedly.

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White

Right.听 Just one more question, this is on a more sort of practical front 鈥� are there any tips that can help someone actually adapt to the condition?听 Ian tells us that his dad keeps having knocks at the moment, as he tries to navigate, he says his brain hasn鈥檛 adapted to no sight on the left-hand side.听 Will it adapt eventually or is there anything else you can suggest to stop him knocking into things?

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Nicholson

Yes, I think it鈥檚 important to rule out any underlying glaucoma, if there is, because glaucoma is a condition that affects our field of vision and we can knock into things if that鈥檚 active.听 And that鈥檚 been shown to be related to a vein occlusion.听 But more importantly, if the patient has it in one eye, especially if it affects the dominant eye, there is a tendency to want to close that eye or wear a patch but we don鈥檛 tend to recommend that because the brain learns to adapt and develop unconscious measures to cope with that.听 Despite the central vision being quite blurry the peripheral vision, in most patients, is still preserved and having both eyes open and not patching it, is much better functionally.听 But in the initial stage when it鈥檚 quite serious and it鈥檚 quite bad, it can be difficult to cope because it鈥檚 so sudden, the brain takes time to adapt to it.听 But we find in most patients, in time, tend to cope and develop measures to cope with that.听 And they do function perfectly fine with the one very good working eye.

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White

Luke Nicholson, thank you very much indeed.

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And that point about adaptation is very appropriate to our next item.听 I mean it鈥檚 absolutely understandable that anyone initially losing their sight is going to dwell on the things that they fear they鈥檙e no longer going to be able to do 鈥� reading, driving are two of the most common fears.听 But people are often surprised at how quickly people can adapt and just how many alternatives there are to doing things for which you would assume sight was essential.

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Blind Australian psychologist Courtney McKee has recently been writing about the techniques she uses for what she describes as reading a room 鈥� knowing the numbers of people in it, where people are positioned, the mood of a room.听 Well, I鈥檝e been talking to Courtney McKee about this and I asked her, first, about a phrase she鈥檇 used in her article about how important it was to be on good terms with the missing pieces of life.听 I wondered, what did she mean by that exactly?

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McKee

Well, I think it鈥檚 two parts.听 So, as a person with a vision impairment you are doing without some of the most important information that people use to understand the world around them.听 And the good terms side of thing is about having realistic expectations about what that means for you and being compassionate towards yourself in relation to what you can do with that information and just making the most of it.

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White

So, you mean accept that you鈥檙e going to have to do this a different way and the best way to do it is to accept what you haven鈥檛 got and try and find an alternative?

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McKee

Yeah, I think if you can come to a place of acceptance, almost like peacefulness, with the way that things are, that means that you鈥檙e not battling double.听 So, you鈥檙e not only dealing with the challenge of missing that information but you鈥檙e also, potentially, dealing with your response to it which could be anxiety, it could be anger.听 If you can come to a place of acceptance, you鈥檙e essentially taking away one of those challenges, which is your emotional response and then you鈥檙e able to tune in to the information that you do have and do your best with that.

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White

So, let鈥檚 talk about it in sort of hard practical terms.听 Give me some examples of the kind of clues that you鈥檙e looking for to replace the information that sight would give you.

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McKee

Well, I suppose the main one that we tend to use is auditory information that includes whatever the ambient cues are, so ambient noise around us and you can probably hear dogs barking in my background and trucks passing by, so you know I鈥檓 in a reasonably built-up suburban environment.听 But it鈥檚 also about the people around us and what we can tell from what we hear from them.听 So, it might be about how they鈥檙e moving through space, which we can hear in the rustling of their clothing and their interaction with the furniture, the movement on a chair, even sometimes, we can pick up on the disturbance of air around us.听 So, I would say that the majority of information we pick up is auditory but we鈥檙e also aware of olfactory information and we鈥檙e also aware of proprioceptive information, so, the position of our body in space and potentially touch in relation to other people too.

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White

So, I mean you were talking about this in a kind of work situation, in the article, the interesting thing is we鈥檙e doing this interview on Zoom, so in some ways that completely changes the situation but I guess you鈥檙e talking about work situations, where you鈥檙e perhaps in a room where there are a lot of other people.听 So, how much information can you get from that and how important is it that you actually know these things?

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McKee

Well, I guess when you鈥檙e in a room in a work environment with a lot of other people what you鈥檙e trying to do is demonstrate the expected behaviour because that can essentially make people more favourable towards your needs.听 So, what you鈥檙e trying to do is tune into how other people are behaving to find out what those norms are and to match them, if it鈥檚 appropriate for you, some people like to be iconoclastic and they like to step outside of what the average way of behaving is.

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White

I guess what some blind people would say is 鈥� I鈥檓 not going to pretend to be sighted, people have got to come to terms with the fact that there are things I will do in a different way to them.听 So, I mean are we saying, in a way, that you鈥檙e trying to behave as much like sighted people as you can because some people wouldn鈥檛 accept that that was necessary?

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McKee

No, and I agree with those people, I don鈥檛 think if you have a disability that you should be trying to operate according to or conform to sighted expectations.听 But I also think it鈥檚 about relationship.听 And so, the expected behaviour in most environments is the sighted behaviour but if you鈥檙e in a group of well-intended or decent people, then they鈥檙e going to expect that you transgress a little bit or you differ a little bit.听 Diversity is really important and as people with disabilities we represent an important segment of society and how we operate, the work arounds that we employ to do life, are important for people to see because they鈥檙e human adaptations that represent innovation and ingenuity and resilience.听 I鈥檓 not expecting people to try and pretend to be something other than what they are but I still think when you鈥檙e in a social environment what you鈥檙e trying to do is tune yourself to other people, so you can experience rapport and belonging and that you can get the benefits of that group experience or that collegiate experience in a work environment.

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White

Using it in a working environment is one thing but what about socially?听 For instance, I mean how much can it be used, how much would you use it, say, at a party where people鈥檚 behaviour is likely to be far more unpredictable than it would be in a work situation?

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McKee

Well, I often find parties, there鈥檚 a lot of noise in the background which scrambles a lot of the information that you can pick up and as a result of that, you have to tune in very, very carefully to specific things.听 So, I think it鈥檚 actually almost a matter of using the ability to block out information, more so than anything else.听 So, a selective attention.听 So, you鈥檙e identifying a particular person that鈥檚 sitting close to you, that you鈥檙e listening to.

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White

And we鈥檝e all had the experience at a party of thinking we鈥檙e talking to someone who鈥檚 actually looking over our shoulder to see who else there is in the room that鈥檚 more interesting than we are.

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McKee

And I think, also, it鈥檚 about when you鈥檙e blind or have low vision, you鈥檙e relying on that main sense of hearing to process multiple channels of information.听 Whereas a sighted person can be looking across the room reading somebody鈥檚 conversation, reading lips or whatever and having somebody gesture at them about, you know, I鈥檓 ready to go now, pack up and move on.听 Whereas we have to only rely on the information that鈥檚 immediately around us and there鈥檚 a lot of uncertainty about somebody giving us information from across the room because it could be for anyone.听 So, yeah, those kinds of environments they are incredibly tricky and I wouldn鈥檛 profess to be very good at handling really dynamic unpredictable environments myself.听 Again, it comes back to just doing the best you can.

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White

Yeah, could you end up spending so much time on this sort of thing that you miss out on living in the moment yourself?

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McKee

Well, I think listening is about paying attention, you know, mindfulness is about being in the moment and really what we鈥檙e talking about is tuning in to what鈥檚 happening right now and being present with people and giving them the space to express themselves and being a really good sounding board for them.听 So, there are skills associated with that, like in counselling there鈥檚 a set of skills called micro-counselling skills and they involve things like asking open and closed questions, paraphrasing, using minimal encouragers.听 Your interviewing strategy is a really good example of giving me space to talk.听 So, you know, there are skills and you can get better if you practise them but I think, ultimately, what it comes down to is one person being authentic, interacting with another person being their authentic self and that only really works if you are completely present in the moment.

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White

Courtney McKee, thank you much.

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And we鈥檇 like to hear about your own techniques for reading a room.

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Something else we鈥檇 like to hear from you about is a recent announcement from the Department for Transport that they want train companies to cut down on what they鈥檙e describing as banal and unnecessary announcements and instructions.听 They say redundant messages will be identified and removed in the coming months.听 They do say they will retain important safety announcements and work with accessibility groups to ensure passengers get essential information.听 But we鈥檝e already heard from one listener, Richard Foster from Aberdeen, who fears that in the enthusiasm for a bonfire of announcements vital messages for visually impaired passengers might get binned as well, he says: 鈥淵et again, selfish and ignorant people are trying to get these announcements removed because they find them annoying.听 As a totally blind traveller, they are, for me, quite literally a life saver.听 Their importance needs to be widely publicised.鈥�

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Well, that鈥檚 what we鈥檝e done.听 So, if you notice a lessening of announcements of forthcoming stations, which side of the train to exit from, do let us know.听 You can email intouch@bbc.co.uk, leave voice messages on 0161 8361338 or contact our website bbc.co.uk/intouch from where you can also download tonight鈥檚 and previous editions of the programme.听

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That鈥檚 it from me, Peter White, producer Beth Hemmings and studio managers John Cole and Philip Halliwell, goodbye.听

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