Monthly Archives: June 2017

Reduced vision; increased insight

An entirely rational fear of going blind probably isn’t something which most people in their late thirties and early forties even give a passing thought to.  However, after multiple retinal detachments, it’s now pretty much top of my greatest fears list.  I fear more for my ‘good’ left eye than I do for my bad right eye, because I rely on it for everything.  If my left eye was in the same state as my right, I wouldn’t be able to drive, I wouldn’t be able to see people’s faces properly, I wouldn’t be able to read, or do my job, I wouldn’t be able to enjoy beautiful colours, or watch the birds in my garden, or admire art exhibitions, or go geocaching… the list is endless.  Sometimes I get very gloomy and depressed thinking about all the things I wouldn’t be able to do, and other times I just try not to focus on it (pun intended).

However, my sight problems have also made me think a lot more about how I might do certain things if the worst ever does happen to my ‘good’ eye, and it’s also made me wonder how people who are blind or severely visually impaired manage with certain tasks.  A while ago, I explored one aspect of this in terms of how visually impaired (VI) people cope with cooking.  You can read about this in my posts Dinner in the dark and Blind baking.  The latter also contains a YouTube video of my sister attempting to bake a cake with her eyes closed: I defy anyone to watch it and manage not to laugh, although hopefully it will also make people think.

As a result of all this wondering about how people cope, and internal torture as I contemplate my own visual future, I seem to have developed an increased awareness of VI people when they cross my path as I go about my daily life.  A few times now I’ve seen a guy with a white cane on campus at the university where I work, walking purposefully along, swiping his cane from side to side in front of him.  One day, he was walking along a very narrow, uneven path, flanked on one side by a bank down to the road and on the other side by a somewhat unruly hedge.  I wanted to stop him and ask him how he managed it; whether it was difficult using the cane and how he copes on the rest of campus.  I often notice things on campus and mutter to myself, “That would be a nightmare for a severely visually impaired person!”  Of course, I didn’t stop him.  Mainly because a lesser fear of mine is that of talking to people I don’t know.

Instead, I went home and listened to a podcast about how severely VI or blind people navigate.  I learned that they rely on sound a good deal, and that some tap their cane along the ground and  listen to the sound coming back to help them orient themselves  and get around.  I learned that weather conditions can have a huge impact on navigation.  Apparently snow is the worst, because of course it covers paths making it very easy to rapidly become completely lost.  One person said that she hates the rain because it dampens down sounds and makes it much more difficult to hear things properly.  She said that she can’t wear a hood as that blocks out even more sound, and she can’t use an umbrella as it’s too difficult to navigate with a cane or a guide dog in one hand and an umbrella in the other.  So as well as the annoyance of the rain making navigation more difficult, she also inevitably gets soaked.

Some time after listening to all this, I was standing waiting in the railway station one day when I spotted an older man with a white cane making his way through the door.  He walked past me and then stopped, fished his wallet out of his pocket, and proceeded to hold several bank cards very close to his face and scrutinise them carefully.  This took a few minutes, but he must have found the one he needed, as he put the other one back in his wallet and moved to return it to his pocket.  As he juggled wallet, card, and cane, he then dropped the card.  Immediately, he knelt down and began running his hands across the floor, searching for it.  Just imagine for a few minutes, having to run your hands over a filthy station floor in order to locate an object you’ve dropped, without knowing what they may come into contact with as you do so.  I quickly moved to find it for him, but then realised that he probably wouldn’t a) be able to see me properly, and b) realise that I was trying to help him.  So I said (which seemed a bit of a weird thing to say), “Do you want me to pick it up for you?”  “Yes please!”, he answered with relief in his voice, adding apologetically, “Sorry”.  I wanted to say, “No, no – don’t be sorry!”, and ask him how much he was able to see, and what was wrong with his eyes, and how he managed on the train… but I didn’t.  Instead I just said, “Don’t worry”, as I retrieved his bank card from where it had fallen almost underneath one of his feet, and placed it in his hand.  “Thank you”, he said, before moving off slowly to the ticket office.

Afterward, I wondered how long it would have taken him to find his card if I hadn’t picked it up for him, or whether anyone else would have helped him.  There were a few people around, but they all seemed busy with ticket machines / children / timetables and didn’t appear to notice.  Public places present so many more difficulties and variables than the home environment, and it seems just sheer common sense that people would surely help if they’re fortunate enough to have decent vision and see someone else struggling.

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I’m voting for the NHS

I’ve never felt so utterly let down and helpless in relation to my own health as I did on Wednesday 27 May 2015 when, after a dash to Moorfields Eye Hospital at the crack of dawn, I was diagnosed with my fifth retinal detachment.  After several hours of waiting and various examinations, I was advised to go home as they wouldn’t be able to operate that day.  As any RD patient will know, retinal detachment is a medical emergency, leading to loss of sight if not treated swiftly.  In cases where the macula has detached, a delay in surgery of up to one week won’t really affect the final visual outcome, but if the macula is still attached, surgery within 24 hours is strongly recommended.*

At the point of this diagnosis, my macula was still on.  The reason Moorfields couldn’t fit me in for surgery that day was that they’d had a number of other patients in that morning with retinal detachments.  As I’d already had multiple detachments, the prognosis for a good visual outcome in my case was poor, and I was told that I wasn’t a clinical priority.  To say that I was upset by this was a massive understatement.  “But I’m in hospital… you’re supposed to help me, not send me home!  It isn’t even just any old hospital – this is the world-renowned Moorfields Eye Hospital!”, screamed the voice inside my head, in disbelief and dismay.  But there was nothing to be done.  When I asked one of the doctors if it was worth waiting in case they were able to operate that day after all, he advised me to go home and wait for a ‘phone call.

I trudged back to the station along with my sister, with a heavy heart and failing eyesight as the detachment continued its relentless progression.  My sister was furious, and fumed about the unfairness of them sending me away.  Although hugely upset, I pointed out that there was little which the hospital could do.  If they didn’t have the resources to cope with the number of patients, it was only logical that they’d prioritise cases which had the best chance of a good outcome.  I didn’t blame the hospital, but understanding the situation did nothing to diminish its terror.  I spent the rest of that day, and the night, and most of the following day gradually losing more vision in my eye and feeling absolutely petrified that my macula would detach again.  Eventually, I received the long-awaited ‘phone call from Moorfields in the early afternoon of the following day.  I was told to go in immediately, but warned that they still may not be in a position to operate that day.  Fortunately, I eventually went into surgery that evening, and it was around 9pm when I emerged from the operating theatre.

It’s bad enough having to cope with the trauma and ongoing anxiety of RD, without having the additional worry that the hospital may not have the resources to be able to help when needed.  Clearly, this goes for any serious health issue.  If something grim happens, we want to be able to rest assured that at least we’ll receive the best treatment available and will be well cared for.  But how can we expect this to happen if the NHS isn’t cared for itself?  In January, the British Red Cross warned that the NHS was facing a ‘humanitarian crisis’ as hospitals and ambulance services struggled to keep up with increased demand.  There were horrific newspaper articles describing patients on hospital trolleys piled up in corridors, as well as chronic bed shortages and staffing problems.  There were shocking reports of deaths which occurred partly as a result of these issues.  It’s common knowledge that there are serious problems in the NHS and unfortunately many people have first-hand knowledge of this, to a greater or lesser extent.

Yet, despite the fact that demands on the NHS are increasing, it appears that the Conservative and Liberal Democrat coalition and the current Conservative government have put less money into it than it has received in the past.  Have a read of this BBC article, which states that the average annual rise of money going into the NHS since it was created in 1948 has been just over 4%.  During the Labour government under Tony Blair and Gordon Brown, it was almost 7%.  Now, numbers aren’t my strong point so bear with me here and please correct me if I’m wrong, but if you have a look at the chart under paragraph 6 of the above article, it looks as if the average annual increase in government spending on health from 2009/10 to 2014/15 was only just over 1%.  Note the points made beneath the chart:

As you can see the period since 2010 has seen the tightest financial settlements. What is more, the spending squeeze is continuing during this Parliament at almost exactly the same rate, even with England’s extra £8bn going in.

Ministers in England are right to say they are increasing funding – it’s been frozen in Wales and Scotland – but it’s just that it doesn’t compare favourably with what the NHS has traditionally got.

Indeed, the Institute for Fiscal Studies believes over the 10 years to 2020, the NHS budget across the UK will not have increased enough to keep pace with the ageing and growing population.

Not only has the Conservatives’ lack of sufficient funding for the NHS had a hugely detrimental effect, they also appear to be pretty much kicking the NHS into the ground with many of their other policies.  We had the junior doctors’ strikes as a result of dangerous contracts being enforced upon them; we currently have the risk of EU workers (including doctors and nurses) relocating because the Tory government won’t guarantee their rights following the referendum result; the 1% pay cap for NHS staff is resulting in nurses resorting to food banks and creating a recruitment and retention crisis; and the abolition of NHS bursaries has led to a 23% drop in applications by students in England to nursing and midwifery courses at British universities.  The Tories really do seem to be a tad short-sighted when it comes to planning for the future, don’t they?  I’d recommend that they all go and get themselves checked out at the nearest decent eye clinic, but then that would just clog up the clinics even more than they are already…

As well as doing a considerable amount of highly depressing background reading on this matter, I decided to check out the opinion of friends and people I know who actually work for the NHS and who therefore have inside knowledge of the situation.  I think it speaks volumes that I haven’t yet found anyone who thinks that it would be a good idea to vote Conservative in the General Election on 8 June.  Several of the people I know who work for the NHS are already actively and urgently encouraging people not to vote Conservative if they care for the NHS.  One friend responded to my quick ‘poll’ question of, ‘Do you think it’s a good or a bad idea to vote Conservative with the NHS in mind?’ with the comment:

I think it’s a bad idea to vote Conservative full stop, but yes, a Tory win will be bad for the NHS because they are privatising by stealth and setting us up to fail so that they can sell it off.

She ended this comment with a red, frowny, ANGRY face.  This is someone who always seems relaxed and chilled-out, and I don’t think I’ve ever heard her raise her voice.  Someone else who works for the NHS and responded to my poll told me that she doesn’t know anyone at her workplace who would vote Conservative.

There are numerous additional reason as to why I won’t be voting Conservative on 8 June but – for me – the NHS is the most important one.  From everything I’ve read and people I’ve spoken to, it seems very clear that in order to vote for the NHS I need to vote for the party most likely to keep the Tories out, and so that is exactly what I shall be doing.

*I’m sure this was previously stated in the NICE guidelines concerning retinal detachment but, upon checking, I found that they appear to have been amended… hmmm.