Tuesday, 3 July 2012

Deaf Girl takes on the NHS


My Twitter followers will know that at the weekend I had a fight with a cup of tea and lost, resulting in a big burn across my stomach, which was level with the kitchen work surface when the boiling water went flying towards me. Not only did it hit this bit of me, but it also went down my jeans and onto my feet.

I was in pain and in shock and my two brilliant friends who were there at the time sprung into action, yanked all my clothes off and threw me into a cold shower for 20 minutes. It was only after about five minutes of standing in the bathroom looking at my increasingly blistered skin that we realised that I was standing in a cold shower, without clothes on, with two of my best friends staring at me.

At that point, despite the pain, we all burst out laughing and they then left me to the icy water and went and cleaned up the scalding stuff on the kitchen floor.

It soon became apparent though that this was not just a surface burn, so off we pottered to the Minor Injuries Unit. It felt like I had a 100 toy soldiers stabbing me with bayonets in the stomach – it was that kind of repetitive niggling pain. 

Randomly, it affected my lipreading abilities – possibly because I couldn't concentrate – so PentHouse and First Ever Flatmate became my ears. They answered all the usual questions then made sure I knew what was going on as a marvellous nurse dressed the burn.

In short, they were amazing. They found me painkillers, they poured me wine, they checked I was still alive in the night when the combination of the former and latter made me fall asleep on one of their husband's shoulders in the car on the way home from dinner.

The next day, I ended up calling in on SuperCathyFragileMystic – who happens to be a brilliant GP. I asked her if she'd help change my burn dressing and she willingly did, while confessing that she'd never changed a dressing before. She also advised me to get a nurse appointment at my local surgery for a new dressing in a few days.

Regular readers will know that my GP surgery is amazingly inaccessible to deaf people. The appointment system is phone only and there's some weird thing where you have to call from 7am to secure an appointment for that day. Not practical for deaf old me.

In the end my boss at work rang about 11am. There were no appointments left. 

I then remembered a walk-in centre and looked up my nearest one. It was in a hospital. I did some research and checked that dressings could be changed at walk-in centres and set off. On arrival I asked if I was in the right place. 'We don't do dressing changes here.' I was told bluntly, and was told I needed to be two miles down the road instead.

Gutted, I broke into a jog to make sure I got there in time, as it had shorter opening hours, and arrived, sweaty and out of puff and probably looking far too healthy. The waiting room was empty. I was thrilled. I spoke to a guy and got that glazed look of 'Whatever' when I told him I was deaf. I filled in my form and waited and waited.

The waiting room began to fill up.

I read the sign on the wall that said patients were seen on a first come, first served basis unless it was an emergency. And waited and waited.

I knew that my burn dressing wasn't an emergency but when a lady with a stye on her eye came in 30 minutes after me and was seen 20 minutes later with me still waiting, I began to wonder if I hadn't heard my name being called. 

You see, the set up was almost circular. There were doors at all angles. People came out and seemed to mumble a name before disappearing again and I had no idea if they wanted me.

I went up and spoke the the receptionist and asked him where I was in the queue and reiterated my deafness. He said I would be soon.

I waited and waited.

Again, I began to worry I hadn't heard my name so I popped up again and asked him where the nurse I would be seeing would call me from. He pointed this out and I found a chair straight opposite.

Two-and-a-half hours later, I was still waiting. I hadn't read my book the whole time for fear that I wouldn't hear my name and no one would tell me it had been called, I had been sat simply staring at the doors the nurses came out of in the hope that at some point I would lipread my name.

But what that time did give me was the opportunity to think about how utterly appalling the whole experience was. I mean, I told the guy twice I was deaf. I didn't write it on my form because there was no appropriate place to, but he could have passed the information onto the nurse, however he didn't.

There was no other way of knowing that my name was being called. And the earlier palaver of only being able to call my GP for an appointment was also starting to frustrate me even more.

But what can we do to fix this?

One of my marvellous Twitter followers pointed out that they can't put names up on a screen to call them as this is apparently a breach of data protection. But what about a vibrating pager like the ones you get in food halls that go off when your order is ready so that you can go up and collect it. If it can work in a busy restaurant, surely it could work at a walk-in centre. 

Or as another marvellous Twitter follower suggested, what about utilising the text message system that we already have on our phones. I mean I get a text from my hairdresser now reminding me of my appointment, so why couldn't we receive a text alert to say that our name had been called or we were at the front of the queue?

What I want to know is what services are already out there for deaf people in the health service that work? In America, in the UK and wherever else you marvellous readers are. By finding out what works, I may be able to work out what's missing here. Please let me know.

And those of you in the same position as me, please tell me what you'd like. I'd like the NHS to sit up and take notice of deaf people and create a service that is easily accessible, from the GP to consultants, wards to operating theatres but what else? Please let me know.

It occurred to me as I was sat in the waiting room panicking that I hadn't heard my name, that each experience of the NHS makes me want to use it less and less. The difficulty with getting a GP appointment means I don't go when perhaps I should. If others are doing this too and vital symptoms are missed, then couldn't this be the difference between life and death?

Would I not get that mole checked because it meant asking a friend to call for me at 7am? Would I let my Crohn's get to hospitalisation stage because I simply couldn't contact my doctor myself? Quite possibly and that's shocking.

Something has to change. If I can book tables, haircuts and holidays online, why can't I book GP appointments? I know that some practices allow this, but in my borough there is not ONE deaf accessible GP surgery, and there is only ONE that is open early and late enough for me to pop in, in person and make an appointment – and it's not that near where I live.

And if I can get texts and vibrating pagers going off to tell me when my lunch is ready in a restaurant, car is ready for collection and the next bus is coming, why on earth can't the NHS provide this, too.

I know it's a stretched service. I know that people are dying before they get treatment, waiting lists are long and people are underpaid, but all I'm asking is that deaf people are given the same opportunities as everyone else to access and use the NHS. And if that's too much to ask, then I have no idea what the future holds...

However, perhaps if I can gather this information, lobby the right people, raise awareness, tweet, nag and general be the annoying deaf girl that I am, then perhaps we can change things. It'd be amazing. And if you know someone who's already doing this – let me know about them, too.

It's time to take a stand. Who's with me?

15 comments:

weebles1703 said...

*puts hand up* it may be worth contacting one of the big organisations eg action on hearing loss, to take it up as a major campaign

Fab Friend said...

I'm with Weebles...but let's get started small too! *hand up*

Anonymous said...

Sorry you had such a bad experience, I'm not sure what the practical solution is, although you mention using a electronic board with name's on. This is legal, I have been to 2 GP's surgeries who use one, both of which also allowed online booking of appointments. So there are the capabilities, just a lack of funding I assume.

David said...

In the US, the physicians’ licensing boards also accept patient complaints. Here, you could file accessibility complaints *every* time you cannot access a physician’s appointment desk, or get ignored in the waiting room. The complaints eventually pile up and the physician is expected to make answer,

When I feel I have been ignored or overlooked, I have personally stood directly in front of the receptionist for as long as needed.


David

David said...

In the US, the physicians’ licensing boards also accept patient complaints. Here, you could file accessibility complaints *every* time you cannot access a physician’s appointment desk, or get ignored in the waiting room. The complaints eventually pile up and the physician is expected to make answer,

When I feel I have been ignored or overlooked, I have personally stood directly in front of the receptionist for as long as needed.


David

Emily said...

Here in the US I've been assigned a number when I went for a procedure such as a colonoscopy. Then that number appears on a screen when you're called. This bypasses the ridiculous privacy rules we have here known as HIPPA (health information personal privacy act) which don't allow one's name to appear on the screen. Common sense has been completely abandoned in the name of privacy in my opinion.

Chronicles of a Bionic Woman said...

I'm with you, DG. Fortunately, Action on Hearing Loss is already on the case.

http://www.actiononhearingloss.org.uk/about-us/northern-ireland/campaigns/access-to-health-services.aspx

You might also find this useful: http://www.actiononhearingloss.org.uk/get-involved/campaign/equal-treatment/how-to-send-a-complaint-to-your-healthcare-provider.aspx

My GP surgery sends me texts to remind me of an appointment and when i first registered i actually forced them to make it clearly visible on my initial view record that i am deaf so that when a nurse/doc comes to call me, they know i am deaf. thankfully, familiarity helps matters. Overtime, they know my face now and rarely have problems with them.

the only bug bear is i have the same issue as you with regards to making appointments - you have to call early that morning for an appointment that day. But here's a tip - tell them its urgent and you are in pain etc if you want to book an appointment for the following day. Works for me every time ;-)

We will win and they day we do, we will have our cake and eat it too! :-D

D x

Anonymous said...

Thats appalling, as mentioned above, electronic boards with names flashing up when you are called are perfectly legal, and my GP uses them. In fact I cannot fault my GPs surgery, the doctor will generally come out to the waiting room to check I have seen my name (the electronic board beeps when a new name flashes up so if I wasn't paying attention I guess I could miss it), and the doctors, nurses and receptionists couldn't do more to help. HOWEVER, my local audiology and hearing aid clinic is light years behind on this! They still call people by name, and like your experience at the walk in centre, they come from random directions to do so. The receptionists do not seem very deaf aware, and last time I went the technician I saw mumbled into his beard with his back to me. I couldn't believe a service for deaf people was so backwards! In the end, as there were some other aspects I was dissatisfied with, I lodged a complaint and am now registered with Nottingham hearing services - yes I would rather travel 50 mins on the train to appointments than deal with Sheffield again... Do put in a complaint DG, its the only way things will change.

Anonymous said...

At our university hospital, many of the departments give you a disk that vibrates after you check in. Then you can go wait, even read your book, until the disk vibrates. Look up and find the receiving nurse waiting for you. Just like waiting for your sandwich at Panera Breads. Would be nice if they do that everywhere though! Even hearing people can miss their name being called. -Dee

Me said...

Thanks for all the great feedback. Dee, which hospital does this? Would love to contact them to ask about what system they use etc. Doose, amazingly helpful links, too. THank you ALL!
DG
x

Ni Gallant said...

Thats terrible but i think common :/
at our GPs they use a number system, when you get to the surgery you sign in and take a ticket (all electronic) and then you sit in the waiting area where they have 2 big screens, when its your appointment your number flashes up on the screen. Its private and everyone can see!
however, you still have to phone for an appointment... and for results like blood test results. I had to write a letter giving my mother permission to pick up my results and make me appointments. so much for independance...

Ni

www.nigallant.blogspot.co.uk

barakta said...

Splitting into multiple comments for blogger's limit.

The main issue I have with the NHS is phones. I can't hear people on phones well enough to use them so I'm on a minicom with textrelay. Cutting edge 1980s tech which I'm grateful exists at all but as I only need to use it for government departments and the NHS annoys me. Everyone else in my life uses email and or SMS like modern humans.

I don't take incoming calls because so many people/organisations can't/won't dial 18002 and I have no way of telling if an incoming call is properly dialed through TextRelay or has come in as voice. Stopping taking incoming calls was the only way I could avoid the horrendous stress of this. That and avoids the issue not having time to psych myself up for handling calls in the first place. I still find making minicom via textrelay calls difficult and tiring.

My old GP used to have online appointment booking which was great as I could plan my appointment time carefully and choose GPs based on audibility and how decent they were (and avoid the few who I didn't like). My new GP doesn't have this.

I can't access my medical test results from my GP without making another appointment because the GP practice requires that I phone in a tiny timeslot every day (in 2 past jobs I had no minicom/phone and in my current one I'm not supposed to use it for personal calls) and I assume if the nurse isn't free then they will return my call which I can't take. They seem to think me booking a nurse appt (more time off work) to get the results is acceptable. I often don't collect them which is pointless in many ways. I need to go and see the practice manager and find out an alternative option.

Hospitals are another nightmare. Appointment letters usually require me to phone some random number (during working hours again!) which is often hard to connect to or worse they don't know why I'm calling because it isn't an appointments line and they're confused by textrelay. Sometimes they bounce me around the hospital (or even across to different hospitals) and I have no idea who I am speaking to and it's all a confusing mess. I get a LOT of hangups and disconnects which take ages to identify and I then spend another ages redialling somewhere to start all over again. Setting up a call takes aaages on textrelay and in general they take longer.

2 years ago I had a problem with my hand which meant I couldn't type without severe pain. This was worse for realtime typing than for typing where I could take lots of breaks. I had to phone multiple hospitals because of all the tests my GP and hospital docs sent me for. This was basically Catch 22, cos if I didn't phone I didn't get the access to the healthcare I needed to fix the problem but to do so I triggered/worsened the problem. Email would have been easier cos I could have done my emails in 30s bursts with long rests as soon as it hurt. My computer also has a much better keyboard than my minicom.

I often get asked if I can provide the phone number of someone who can take calls. I don't have such a person. My partner is terrible on phones and makes a hash of calls. I am NOT making my mum do this for me now I am in my 30s and she lives 100miles from me! And it's just not acceptable to use a third party when it's the system which is a problem. I have never had a hearie relay a call for me which hasn't disempowered me horribly and resulted in decisions being made for me which I did not want made. Hate it (almost never agree to it)!

barakta said...

I also dislike using textrelay for complex calls like banking, anything to do with data or numbers or personal information as I have had data mangled by operators and mistakes are very common. There's a huge difference between simple phonecalls e.g to make/break an appointment and anything more complex. I find complex doesn't work well at all.

Why can't the NHS use the Internet and email properly? Provide a relevant email address instead of these stupid phone numbers. And insist that emails are answered properly. And the next person to refuse me access via email cos of Data Protection gets a kicking! Phones are NOT secure either! I have no issue with signing a consent form for this once (not repeatedly).

I have managed in some instances to get email addresses for medical people but it's always been a favour, often been against the rules and only once I've established a relationship or shown them how tortuous textrelay actually is.

And once you get past the communicating with the NHS from the outside you have the joy of dealing with the hideously deaf unfriendly environment inside.

I often joke that audiology departments choose to have the worst deaf awareness of the lot closely followed by ENT! It's almost obligatory to have visual obstructions between waiting areas and the door the patients are called from. The caller has to be inaudible and have a strong accent and completely mangle patients names. And then get stroppy cos the deaf patient (hearing aid clinics are best) didn't hear them!

I went to one audiology which had 15cm square pieces of bright yellow laminated card with large numbers on them. Each patient was given one upon reporting to reception to hold visibly while waiting. Another copy of the card with the same number was clipped to the front of their medical notes. When the audiologist called out people's names they also held up the card and looked around to see if they could spot the person holding the card. Genius! Probably cost all of £10 and could be done quickly and easily.

And more importantly, the yellow card system would still work for someone with a visual impairment. I see many visual alerting systems which don't work for people with visual or dual/multi sensory impairments (like many old people). It is important that while enabling one group of people by impairment that we do not disable another group.

barakta said...

Once called into the clinical space the audio environment is often dire. Despite the impression from TV shows like Casualty and Holby City the curtains between cubicles are not sound proof! It is common for deaf people esp those using hearing aids to be able to hear some sounds easier than others and not always the ones we want to hear. I will often hear other humans louder than my own clinician which is maddening and extremely distracting.

I need access to private quiet consulting space. That means one person speaking at a time. I had one ENT clinic where the nurses used to sit at the back of the room and gossip/chat - my mum once had to ask them to STFU cos I couldn't hear my doctor over them despite him being extra audible.

Other hospitals seem to have an open door policy which seems to be an "OMG patients are psycho axe murderers" or "OMG doctors will abuse patients" overreaction. I've had to really argue to get the doors closed and kept closed (sometimes people will just randomly open them from the outside!!!) so I can have a room quiet enough to hear the clinician I am dealing with. If they're paranoid about aloneness, provide a sodding chaperone! I've seen chaperoning done well by discreet quiet HCA/nurse types who don't make annoying noise and indeed who have helped with deaf awareness!

A private consulting room is not a luxury for me, it is a necessity. If I am to make any sense of the complex information which is being given to me and make sense of the consultation I need zero noise distractions.

Then I need to be able to understand the clinician which means they need to be audible, speaking slowly enough for me to follow, facing me (not the computer/notes/other) clearly explaining themselves and preferably telling me when they are changing topic.

They need to give me TIME to process what they have said. A little pre-amble is helpful as it gives me a few seconds to try and work out their speech patterns. I may need them to repeat things to me, and it helps if they check I have understood them.

If I am being given instructions to move in a certain way I need more time. It helps if I can have an overview beforehand "I'm going to ask you to do X and Y and Z" then the instructions one at a time. I need to be able to see the speaker and this may mean that we break the proddings up more or they come and face me between proddings.

I realise they can't predict the whole assessment, but chunking it up with previews of what is going to happen makes things much much easier. It is surprisingly hard to focus on complex audio while standing on one leg or whatever.

Like many deaf people my auditory memory is very poor. And if I don't do as asked, it's probably because I've misunderstood not because I'm disobedient. There's also a chance I can't comply as there are some thing my hands/arms etc won't do! Showing me can be useful, but probably needs to be inbetween telling me cos I can't lipread and watch a thing at the same time.

I once had a maxillofacial surgeon who was checking my jaw out start yanking my jaw around instead of waiting for me to move as asked because I wasn't complying with his instructions quickly enough (it definitely wasn't legit prodding). He was male (I can't hear men well), too close to me cos he was examining my face so I couldn't lipread and had he a huge moustache. I ended up watching my partner re-signing his instructions over his shoulder. I regret not having given his fingers a good hard bite! He had no time criticality excuse as that was a private consultation my dad's work insurance paid for. If clinicians want to do a bit of legitimate medical yanking then they can flipping well tell me they're about to do this so I'm prepared and can 'relax' or whatever.

barakta said...

Once called into the clinical space the audio environment is often dire. Despite the impression from TV shows like Casualty and Holby City the curtains between cubicles are not sound proof! It is common for deaf people esp those using hearing aids to be able to hear some sounds easier than others and not always the ones we want to hear. I will often hear other humans louder than my own clinician which is maddening and extremely distracting.

I need access to private quiet consulting space. That means one person speaking at a time. I had one ENT clinic where the nurses used to sit at the back of the room and gossip/chat - my mum once had to ask them to STFU cos I couldn't hear my doctor over them despite him being extra audible.

Other hospitals seem to have an open door policy which seems to be an "OMG patients are psycho axe murderers" or "OMG doctors will abuse patients" overreaction. I've had to really argue to get the doors closed and kept closed (sometimes people will just randomly open them from the outside!!!) so I can have a room quiet enough to hear the clinician I am dealing with. If they're paranoid about aloneness, provide a sodding chaperone! I've seen chaperoning done well by discreet quiet HCA/nurse types who don't make annoying noise and indeed who have helped with deaf awareness!

A private consulting room is not a luxury for me, it is a necessity. If I am to make any sense of the complex information which is being given to me and make sense of the consultation I need zero noise distractions.

Then I need to be able to understand the clinician which means they need to be audible, speaking slowly enough for me to follow, facing me (not the computer/notes/other) clearly explaining themselves and preferably telling me when they are changing topic.

They need to give me TIME to process what they have said. A little pre-amble is helpful as it gives me a few seconds to try and work out their speech patterns. I may need them to repeat things to me, and it helps if they check I have understood them.

If I am being given instructions to move in a certain way I need more time. It helps if I can have an overview beforehand "I'm going to ask you to do X and Y and Z" then the instructions one at a time. I need to be able to see the speaker and this may mean that we break the proddings up more or they come and face me between proddings.

I realise they can't predict the whole assessment, but chunking it up with previews of what is going to happen makes things much much easier. It is surprisingly hard to focus on complex audio while standing on one leg or whatever.

Like many deaf people my auditory memory is very poor. And if I don't do as asked, it's probably because I've misunderstood not because I'm disobedient. There's also a chance I can't comply as there are some thing my hands/arms etc won't do! Showing me can be useful, but probably needs to be inbetween telling me cos I can't lipread and watch a thing at the same time.

I once had a maxillofacial surgeon who was checking my jaw out start yanking my jaw around instead of waiting for me to move as asked because I wasn't complying with his instructions quickly enough (it definitely wasn't legit prodding). He was male (I can't hear men well), too close to me cos he was examining my face so I couldn't lipread and had he a huge moustache. I ended up watching my partner re-signing his instructions over his shoulder. I regret not having given his fingers a good hard bite! He had no time criticality excuse as that was a private consultation my dad's work insurance paid for. If clinicians want to do a bit of legitimate medical yanking then they can flipping well tell me they're about to do this so I'm prepared and can 'relax' or whatever.

Subtitled Cinema: Daydreaming of a better deaf world

Sometimes, just sometimes, I allow myself the chance to daydream about all the things on my deaf wishlist coming true... It's a bit li...