Communicating with the NHS – any progress?

Copyright: mybaitshop / 123RF Stock Photo
Copyright: mybaitshop / 123RF Stock Photo

Audience participation time – that is, if you live in England.  A while ago I wrote about a new piece of legislation applying to the NHS in England (and indeed care homes, although I am concentrating on the NHS today).  A new Accessible Information Standard means that, since 31 July, all parts of the NHS have been obliged to ask all new and existing patients whether or not they have any communication difficulties – caused by hearing loss for example. Ta da! What an excellent thing! Visibility!

If you have, the health provider is meant to record the problem, and, in future, provide the help that you need to access the service.  Ta Da!  Another excellent thing!  Action! Continue reading

Why lip reading isn’t a golden ticket

Copyright: mistac / 123RF Stock Photo
Copyright: mistac / 123RF Stock Photo

Nigel and I have a private shorthand for those moments when he knows that I haven’t a clue what he just said but I’m not admitting it.  I know I should ALWAYS admit it but saying “sorry, I missed that” a thousand times a day gets very wearing.

The shorthand is “Lions in the Sky” because once, aeons ago, we were in the car together and he pointed out (something) in the sky.  It sounded like “lion” to me, but that didn’t make a lot of sense.  A lion?  In the sky? I couldn’t see anything in the sky, much less a lion, so I copped out and made some confirmatory response.  You know the sort.  “Oh, yeah”.  “Mmm”. Continue reading

Hearing aid alert

Copyright: carmenbobo / 123RF Stock Photo
Copyright: carmenbobo / 123RF Stock Photo

A few months ago one of my hearing aids began occasionally playing up, or rather occasionally switching off, for no apparent reason.  After twenty-odd years of using hearing aids I’m adept at solving the little things that can go wrong (faulty batteries, or wax or condensation blocking the tubing are the most common problems) but it wasn’t any of those.  Mysteriously, left to its own devices (outside my ear) for ten or fifteen minutes the aid would switch itself on again.  Then, it would work perfectly normally for a week or so and then – whoops – go (temporarily) off again.  It was a minor irritant.  When it happened I’d tell myself to contact audiology to see if it needed servicing or something, but I never got round to it. Continue reading

Walking with Roger

After a summer of knee problems (Nigel’s) he and I have returned to the fells.  Fell walking is something we both love and there are lots of excellent opportunities within reach.  The Lake District is our favourite place and we’ve managed to fit in three trips in recent weeks.

Of course, out came the Roger pen, on its first fell walking trial.  At first I had a bit of a panic.  We were putting our boots on at the car – Nigel at the back and me at the front passenger side – when I heard this really loud breathing.  I mean REALLY loud breathing – haaargh, haargh, haargh.  Had he been taken ill?   “Are you OK?” I called out, hopping (one boot on, one boot off) round to the back of the car.  Continue reading

Sport and me (deaf woman at a yoga class)

Spending every afternoon and evening glued to the Olympics had me pondering about sport.

I was a child in an era when school sport meant team sports (netball in the summer and hockey in the winter) or gymnastics.  I was no good at any of them.  On the hockey pitch on damp, cold, Co Durham afternoons I first learnt that I am completely incapable of anything that involves hitting a ball with a piece of wood.  I just can’t do it.  I’m equally bad at tennis, badminton, rounders, crazy golf…..you name it. Continue reading

Positives to counteract the negatives

Copyright: hayaship / 123RF Stock Photo
Copyright: hayaship / 123RF Stock Photo

Sometimes hearing loss is very hard on the self-esteem.  I’ve always considered myself a fairly confident and resilient human being but sometimes being deaf really tests that.  It’s hard to feel confident when I’m on the edge of conversations, trying to get a foothold.  It’s hard not to feel a big sense of loss about some of the things I can’t do any more (chatting easily to my husband whenever I want to is top of my list of things I would like back).

But what do you do?  My philosophy is that there’s no point giving into it.  It’s my one and only life and I’m determined not to let my ears spoil it. Continue reading

Please don’t gesture at me

Copyright: leolintang / 123RF Stock Photo
Copyright: leolintang / 123RF Stock Photo

I’m steeling myself for an outbreak of inappropriate hand gestures and speaking very s-l-o-w-l-y in the NHS.  I wrote in another post about how the staff at my local hospital some years ago all seemed to have been sent on a very bad deaf awareness course, resulting in them accompanying their speech with (for me) quite superfluous “thumbs up” signals, pointing and grinning.  Thankfully, it died out (or the staff had better training).  But I quaked as I read this week about very laudable new legislation, about which more in a minute, because there it was again.  “Use gestures and facial expressions to support what you are saying.”  “Speak a little slower than you would do usually.”  Aagh………. Continue reading

Easier to talk than to listen

I love David Hockney’s art – the vibrancy of it, the colour, the lifelong experimentation with new ways of looking at things.  I have a sneaking suspicion that I also feel attracted to it because I know Hockney has severe hearing loss, as indeed had his father.

Do you know his painting “My Parents”?  We have a poster of it at home.

My Parents 1977 David Hockney  http://www.tate.org.uk/art/work/T03255
My Parents 1977 David Hockney http://www.tate.org.uk

It shows Hockney’s mother – sitting looking straight at you, engaged and involved with the painter (you imagine).  She also looks incredibly like my late Auntie Madge, but maybe that would be true of a lot of women of her generation.  Next to her sits Hockney’s father – turned to the side, not looking at you, reading a book….attention elsewhere.  It shouts deafness to me.  When you are deaf it is so much easier to lose yourself in your own world than to communicate (which is why, to me, it’s so important to not give up and to keep on trying).

Hockney, as you would expect from a very blunt man, is very blunt about his own coping strategies.  Interviewed recently he said “one way of getting round being deaf is to do all the talking, because if you’re talking you don’t have to listen”.  I’m embarrassed to admit that I think he has a point.  Sometimes, say in a group of chattering people, I’m aware that the only bit of the chattering I fully understand is the bit I’m doing.   It’s a lot easier to talk than to listen.  I try not to just keep on talking, but if you find me doing that give me a kick…….

Roger pen: chapter three

In the last two posts I’ve been talking about my experiments with a Roger pen – trying it out whilst driving, being a passenger in a car, and eating out.  The next thing I tried was the television.

Watching the television doesn’t, in fact, normally cause me any problems – I just use the subtitles.  But subtitling doesn’t work for me if it is a live programme rather than a pre-recorded one, because simultaneous captioning is still pretty poor.  So I don’t usually watch the news on TV, for example, I follow it on an iPad instead.

I do like the occasional sports programme – athletics mainly – but that can be a struggle.  To know what’s happening I need the live captioning (no matter how awful) but the pesky subtitles always seem to be just where the action is.  Mo Farah is surging down the back strait, being hotly challenged by the Kenyans, will he do it????  Well, who knows – because all you see are the incomprehensible captions with little figures running behind them.  This is even more of an irritation for Nigel, who can hear perfectly well but now he can’t see the race.

I gave the Roger pen a go.  It works with a TV by being plugged directly into the headphones socket.  I put the receiver round my neck, go into loop mode and the sound goes directly from the television into my hearing aids.

I tried the BBC News.  Sometimes I DO watch the news, if there is some breaking event of great importance (there have been a few of those in the UK recently……).  I would normally have the live captioning activated, and alternate between trying to make some sense of that and lip reading when the newscaster or person being interviewed features prominently on the screen.  This time I left the subtitles off, to see what happened.  The Roger pen worked well for the situations where I could lip read as well as hear – I understood more and with less concentration involved.  But I couldn’t make any more sense of the off-screen speech than I normally do.  Perhaps some more sounds were getting through (?) but not enough to make a difference.

I tried watching some football but the pen didn’t help with the commentary.  It’s not really surprising.  A situation where someone is talking rapidly and excitedly off-screen was always going to be a big ask.

Overall, then, for the Roger pen and television?  I’ll keep on relying on subtitles whenever I can.  Perhaps the pen will come into play (with the subtitles on) when I want to watch a news programme.

The whole process of experimentation so far has lead me to think quite a lot about how I understand speech.  I was very sceptical that the Roger pen would be of any help because I know how much I rely on lip reading.  What I hadn’t factored in, in my scepticism, was that the device’s impact on what I hear would make such a difference WHEN I am able to lip read at the same time.  Does that makes sense?  The Roger pen isn’t improving the amount of speech information my brain is receiving sufficiently to understand conversation just by listening, but WHEN I CAN LIP READ AS WELL it can make comprehension significantly easier, especially in background noise.

So where does that leave things?  Nigel and I sat down to talk about our various Roger pen trials.

We’d already decided that the pen isn’t going back.  The 28-day sale or return period is almost over and Roger is a keeper, as the clothing websites say.  We got into a general conversation about the benefits and….well….I’ll let Nigel speak for himself.  Here he is…..

“For me, there were big benefits when we were eating out and when we were driving somewhere together.  When we were eating out in the pubs in Suffolk, you could hear most of the conversation and we had a much better time than we would have done previously.  A key part of going out for a meal is to talk.  When you can’t comfortably do that it rather defeats the object of being there.  In the car, when I was driving, we were having a pretty normal conversation, for the first time in a long while.  You weren’t hearing everything and I don’t think we could have had a very detailed conversation, but it was massively better.  Previously we had been limited to shouted bits of essential information – “do you need something to eat?” or “I’m stopping for petrol”.  When you were driving things were a bit better, but not so much – I think we’ll stick to you being the passenger!”

He went on, “but there’s something more important than just how much help the Roger pen makes in different situations.  The whole is greater than the sum of the parts.  For both of us, the loss of your hearing has created barriers to communication.  It’s hard not to be able to say things to you whenever I want to and I feel the loss of that keenly.  Anything that gives us back some spontaneity in our communication is so important, so thank you Roger pen.”

So, if you are reading this and thinking a Roger pen (or one of the other listening devices on the market) might help you, I’d say definitely give it a go.  Nigel and I will carry on experimenting, but after three Roger pen posts in a row probably time to move on to something else now……

Speak to you soon.

 

Roger pen: chapter two

Last week’s blog described my success in using a Roger pen to talk with my husband in the car, when he is driving.

We had driven down to Suffolk for a few days and had a lovely time – visiting Aldeburgh (the scene of several wedding anniversary visits when we were first married), going to the RSPB reserve at Minsmere (we were bird watchers before we had a dog) and generally pottering about.  Pottering because the whole reason for this visit was that Nigel had hurt his knee, which had meant the cancellation of a fell walking trip to Wales.  So there was plenty of opportunity to try out the Roger pen.

After driving, the next big test was eating out.  We don’t go out to eat very often, mainly because I love to cook.  When we do it can be a bit of a challenge because how enjoyable the experience is depends on the venue.  We are pub food eaters, in the main, rather than restaurant people and pubs can be noisy places.  Sometimes when the tables are very close together, and there are a lot of people eating, and the noise levels are high, eating out stops being an enjoyable experience and becomes a trial of hearing and lip reading skills.

So off to a local pub on the first night and out came the Roger pen.  The room was fairly noisy and the table quite wide.

(I need to explain about table width.  Normally, if we eat out there will be a bit of a discussion about where I should sit and where other people should sit.  If it’s just Nigel and me I like him either opposite me if the table is fairly narrow, or at 90 degrees if it isn’t – so he is close enough to maximise what I can hear.  The way this room was configured the 90 degree option wasn’t possible).

So – back to the story.  There we sat waiting for the order and out came the Roger pen.  It helped massively.  I tried it on both my two loop settings and fiddled about with the receiver volume, ending up with the loop on the setting that includes general noise and the volume quite high.  It still felt like sitting in a noisy pub but with Nigel’s voice coming through loud and clear.  Amazing.  I can see him, I can lip read, I can hear him through the noise and – I used this expression last week – I could feel myself relax.  The sensation was really noticeable.  It brought home just how much of an effort is normally involved in sitting in a pub having a meal.  It’s b****** hard work this hearing loss business.

If we had a problem it was that I started talking too loudly.  People have told me before that I do this sometimes and I can see why it would happen.  I misjudge the volume of something I don’t hear properly.  Perhaps the situation was exacerbated because the microphone was with Nigel and a fair distance away from me. However, the problem was solved with Nigel surreptitiously making hand flapping signs (down, girl, down) if he thought I was getting too shouty.  Success.  We had a lovely time.

Over the four nights we ate at four different places, using the Roger pen successfully in all of them.

When we came home, the next test was to use the pen with me driving and Nigel the passenger.  This is a much bigger test than when Nigel is driving or when we are eating out because of me not being able to lip read at the same time.  As I said last week, nowadays I tell people that I can’t talk at all when I’m driving.

We got in the car and set off on a quick test trip from the house.  I stopped a couple of times to begin with, to try different settings and make volume adjustments. Then, driving along, I said “OK, I think I’ll just take the road to (the next village)”.  Nigel responded “why don’t you go to (a different village) and then circle round that way”.

I understood him.  I would stop short of saying I heard him but sounds got through and I made sense of them.  There was context (local village names) and guesswork, but I got there.

On we went, with Nigel sporadically saying (brief) things.  Sometimes I worked out what it was he was saying (roughly, not every word), sometimes I couldn’t.  But when I couldn’t I generally got the gist of it the second time.  As I said a moment ago, it wasn’t exactly hearing, I was still doing a lot of figuring out, but the sounds that were getting through were giving me a head start in that process.  Nigel declared it a much improved experience.

One of the comments on last week’s post, from Lizzie, reminded me to point out that the Roger pen can sometimes be paid for as part of the UK’s Access to Work programme (AtW), if it is decided that the person applying needs the help of the pen to function in the workplace.  Now six years retired, I had forgotten all about AtW.  They had funded my first digital hearing aids, years ago, when the NHS decided I needed digital aids but they were too new to be available from the NHS directly.  You can read more about AtW on the Disability Rights Uk  website.  So thank you Lizzie for the reminder.

Someone else has asked how big the Roger pen is.  Here it is.

SAM_5480

I’m still testing Roger in other situations.  Next time – “watching the television” and “general chitchat in the house”………..