Dear UCLH – let’s talk Communication Skills

Dear UCLH,

Specifically, the neurology team. Now we’re all professionals so should be used to peer review. So here’s a peer review based upon my experience with you today.

Before we start, it’s prudent to note that those with Ehlers Danlos Syndrome often have difficulty with adrenal control. This would explain why I am frantically typing this at 1am despite managing fewer than 4 hours sleep the previous night. My anxiety levels peaked today causing a heightened state of fight or flight. Those anxiety levels could easily have been managed had communication with me and more importantly between departments been clear.


What Went Well: 

The appointment letter was clear & concise and received well within the given timescale. Upon requesting a change of dates due to childcare commitments, your administration team were extremely accommodating and did their best to inform me as best possible in terms of available times due to the required 2.5 hour commute to you (based on good traffic). Alternative dates were agreed, arrangements and payments were made for parking as we were not given details of the hotel (see below), congestion charge was duly paid to avoid the issue of trains & chronic pain.

The junior doctor who saw me (albeit for a reason not made clear to me) was lovely. She took the time to listen to me and treated me with respect & intellectual parity.

I regret this section is not longer.

Even Better If:

The time leading up to my appointment was unduly stressful due to the lack of detail provided regarding my planned three day stay at UCLH. The letter stated what tests may be performed and that a patient hotel had been booked. This identified neither the specific hotel, nor the times of the tests, in fact the letter states that details were to be given upon arrival. With my husband having planned to work from his London office over the three days, both of these pieces of information were required, but not provided, even upon arrival. In contrast, we were treated as a nuisance that should have been more aware of the planned procedures. I accept that I thrive on lists & feel far more comfortable when I am of an exact itinerary, however much of this is based upon mobility needs and being away from home, these are often not met. 

The first test was in fact a 24 hour blood pressure monitor & I was asked if my BP was usually so high. No, it’s usually quite low, however I was in such a state by that point that I was suffering with palpitations & chest pain. This was to continue to heighten throughout my stay & accumulate into the first panic attack in my adult life.

As highlighted above, your junior doctor acted with great professionalism when faced with an overly anxious patient who wasn’t fully aware of why they were seeing get this particular doctor (the feeling was that they had been asked to see me to buy some time to sort out the administrative mess as no real medical conversation took place). Unfortunately, the same cannot be said for other staff.

When addressing a person with disabilities, it is polite to address them directly. Only twice have I ever had to make this point vocally and directly to someone who had not taken the hint. Today was that second time with a staff nurse in your day care unit manning the nurses station.

In order to correctly describe using P-E-E (point, explain, example), let me expand:
I was not spoken directly to as part of my care in the hospital by your staff nurse in charge of the nurses station. The nurse repeatedly refused to speak to me directly, instead asking the on duty nursing assistant to relay a message to me despite me directing my question to her and all three of us being within a few square feet of each other. For example, I asked what tests were to be performed today. Your staff nurse appeared disgruntled to be disturbed by a patient & directed her response to the nursing assistant with “tell her…”. 

This is not only highly unprofessional, but incredibly rude. A wheelchair user u just that; they use a wheelchair, there need not be any mental impairment. This happened on multiple occasions.even if the person with disabilities is not able to answer for themselves, talking over them as if they are not there is inappropriate behaviour and requires addressing.

Returning to the first point regarding provision of information, the key point of mobility, specifically being a wheelchair user was omitted from the referral to the Day Care unit. The referring consultant failed to tick the box identifying that I am a wheelchair user. Because of this, the tests were not set up to be accessible and the person setting up my blood pressure monitor voiced concerns that the tilt table would not be suitable as I cannot stand. Upon returning to the day care unit, my husband phoned & informed me that the hotel room that had been booked for us was not accessible. In fact, he had taken my small manual chair into the room & couldn’t get it past the bed let alone into the bathroom. It was now 4pm and the hotel were unable to move us into an accessible room. A message was left with the administration team to try to move us to another hotel.

By this point, I had neither eaten nor drunk anything since 6am and had not had access to my standard painkillers. I was exhausted & in considerable pain. My ‘ambulatory tests’ had so far not allowed me to leave the hospital and we still had no indication of where we would be staying. Instead we were ushered into a room that appeared to be storing drip stands and offered supper. I was far too distressed to eat and felt that no one was listening to my concerns.

At this point we called time of the whole experience and stated that we were going home. The nurse who would previously not speak to me directly, told my husband “when we can’t find you a hotel, then you can leave “. I’m afraid that was the final straw. We removed the monitor, placed it on the nurses station and left. These tests ran the risk of exacerbating my symptoms & potentially inducing fainting. I was not willing to place my health in the hands of people who couldn’t arrange such basic things as accessibility and showed absolutely no compassion for someone who was exhausted, thirsty, & highly distressed.

All of this wasted time and effort could be easily solved in one of two ways. An additional letter to the patient with an itinerary including the name & room type that has been booked. This simple mail merge document plus a postage stamp could have highlighted almost all of the issues encountered today with the ability to solve them well in advance of the day of testing. An even cheaper alternative is to create an email mail merge – this saving postage, paper, even time stuffing the envelope.

Simple forethought, communication, and planning.

Introducing Students To Disability- Year 2

Last year I wrote about how I explained to my classes why their teacher who was previously using a stick, then crutches, was now using a wheelchair. Or for those new students, why the person in the wheelchair was in fact actually their teacher.

https://thehippygeek.wordpress.com/2015/09/22/the-easy-way-to-introduce-260-students-to-a-big-change/

I’m starting to look at how I should update that message to reflect where I am now & what I learnt from last year (yes I know it’s the start of August, but yes I’m also already planning for September).

The past year has taught me a few important things.

  • Discipline is harder from this vantage point – set boundaries and [insert deity here] help them if they cross it. 
  • Kids are often curious. Often a question about me is really about a family (or even them) that they’re worried about.
  • Kids adapt – after a few weeks, you’re just “Miss”

We use Google Classroom & as such I will post this to each class which allows them to read it in their own time & stops it eating into lesson time.

Dear students,

You’ve probably noticed that Mrs Geek has evolved wheels & you might have a few questions. Our lesson isn’t the time for this, but you can always ask me questions during break / lunch! Until then, here’s the biggies:

Why are you in a wheelchair?
I have a genetic condition called Ehlers Danlos Syndrome & POTS. EDS makes my joints & organs more stretchy than they should be, so I get hurt quite a lot and those injuries don’t heal very well. POTS means that when I stand up, or get too hot, my heart beats too fast & makes me dizzy. I’m using the wheelchair to stop me from hurting my joints, or dizzy, & getting too tired to mark your homework! People use wheelchairs for lots of different reasons. I love teaching you & this will help me to stay teaching you for longer:)

Can you walk?
Yes, a little bit. Don’t be surprised if you still see me stretching out my legs in the chair, or stand up. You’d be achey too if you sat down all day! Lots of people who use wheelchairs can still stand, but it’s safer for them to use the chair.

Why do you sometimes have other bandages?
You might see me wearing various different neoprean supports. I can damage my joints very easily & these help. Lots of you have noticed my knee brace (yes, you may call them Robolegs. I do!). Sometimes you might hear my joints cracking or pop – don’t worry!

What do I do if I need your help?
In some rooms it’s hard for me to get to you, but you can come to me & I’ll take control of your screen. We’ll keep using Google Classroom & that should help us lots! If you are at all worried that you’re not getting enough of my attention,  please come and talk to me.

Is it OK to ask you questions about your disability?
I don’t mind you asking outside of lessons. I can’t promise I can answer them all, but being with someone disabled isn’t something to be scared of. Even adults aren’t always sure what is ok to ask. I promise not to be offended as long as you are polite.

How fast does your chair go?
The powerchair you see at school goes 4mph which is a quick walking speed. I’m much faster in my racing wheelchair. Keep an eye out for me at sports day!

Can I have a go in your chair?
No. I rather need it:)

Can I help in the classroom?
Sometimes I may ask you to carry books / chrome books for me & holding the door open is always appreciated. Please keep your bag & coat under the desk & your chair tucked in to allow me to get around the room. Other than that, our classroom is business as usual.

Don’t Touch My Wheelchair

There’s been a lot going on recently and within those busy moments there are flashes of white hot fight or flight temper. As a rule, the flash remains in my head & I either bury it, or explain calmly after, but all flashes have a common theme: don’t touch my chair.

For ease of reading:
I have Ehlers-Danlos Syndrome; a genetic condition which affects connective tissues throughout my body making them stretchier than they should be (this includes tendons, ligaments, skin, muscle, internal organs). I dislocate or sublux (partially dislocate) daily and it hurts. EDS comes with the extra fun of IBS (irritable bowel), POTS (Postural Orthostatic Tachycardia), and for me, dysphagia (difficulty swallowing). Because of the pain, hip & pelvis subluxations, and fainting I use a wheelchair pretty much full time aside from trips to the loo upstairs where I use crutches to drag myself the full exciting 5m.

So, my chair is my mobility, it’s my pain relief, it’s my route to remaining conscious! So why the anger? May I give this in a few formal requests? (I’m going to anyway, that was more to allow for a personified narrative – I could almost pass my SATS with that paragraph…)

Don’t push my chair without asking
Sam, my ever understanding lady summed this up in words even the 7 year old demanding to push me around like an oversized doll understood.
“You don’t push someone’s wheelchair unless they ask you to. You wouldn’t let someone puck you up without asking would you? It’s just rude.”
I make a habit of having my handles on the chair tucked away because I hate it.

Firstly, it makes me feel very vulnerable when someone physically moves me either unexpectedly or against my will.
Secondly, I generally have my hands on the rims & if you move me forwards without warning, I may still be gripping and you’ll have a dislocated shoulder, elbow, or wrist on your conscience.

Mr Geek forgot himself today and did just this. He whizzed me up a ramp onto the train without warning & faced a very stern don’t touch my bloody chair conversation. Mainly because I was tired, in pain, and having been in ultra-alert mummy in London mode all day couldn’t tell who was pushing and panicked.

Don’t  pin my pain on the aid that relieves it
My pain management team appear to be at a professional crossroads. If they were married you would probably suggest seeing a counsellor. Instead, they played a game of professional ping pong with my appointment which as a professional, I found deeply unsettling.
One of the ladies is a pain specialist. She is quiet, encourages my progress (albeit slow), advocates pacing and patience.  The other is a lead physio who is very much the opposite. She is an advocate of movement, and pushing through limits, and overcoming mental barriers. Personally, I find her overbearing and generally cannot get a word in edgeways.

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When I saw them this week I happened to be circling the higher eschalons of the pain scale. I find it difficult to articulate my needs when I’m breathing through it. I’d managed to explain jy fears about loss of sensation (boiling water on the foot) which was taken seriously, and lack of sexual function which was dealt with in true British fashion.

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Whilst demonstrating a move to help me open up my pelvis & lower back, she noticed that I was uncomfortable in the chair. And here it came:
We must get you out of that chair. Being sat in that is what is making your back hurt!” Now, to an extent I do agree. Being sat still watching a loud person wave their legs in the air for 45 mins makes your joints seize up. Anatomically, the seated position does put pressure on your lower spine. So I asked her how we would work on that.
What’s about standing up at work?”
We’re going with a no there; I’ve already fainted in my classroom twice this term despite being sat in my wheelchair  and that’s scary for both me and the kids. In fact, it’s what prompted me to get the reclining back for the powerchair.
Can’t you just walk around at home?”
I’d love to! It’s my ultimate goal to abandon the chair in the house, but standing feels like there’s glass in my hips & walking with crutches not only causes pain (and tears), but runs the very real risk of a fall as I can’t feel my feet & have to really focus on where I’m putting my legs.
OK then, but we need you to open up that area, so lying down flat as much as possible with lots of stretching”
Again, unlikely at work (Just picture that classroom scene!), but doable at home… but stretch as far as possible?!
Earlier, she’d been quite offended when I told them that my Stanmore referral was rejected due to waiting lists & I felt left in limbo. She scribbled  furiously whilst telling me sharply that she dealt with plenty of Hypermobility & didn’t need London telling us what to do (🚨🔔AWOOOGA! Alarm Bells!🔔🚨).

This all sounds like a cop out, but I know my body & that pain in my hips & back isn’t from the chair (unless it can time travel back to 2004 when my 1st disc went). I also know that pain is not gain with EDS, and when I “push through”, I end up damaging something.  I do push myself physically by hauling my arse to wheelchair racing & swimming each week. I use the manual chair when I’m not at work, self propelling to the point of exhaustion & audibly clicking shoulders.

I’m doing my best, but sitting allows me to function. The chair damn well stays. I will not be confined to bed & stop working so I can point my toes again.

If at all possible, I’d like to enter the building the same way as everyone else, not via an extra 1/4 mile walk and via the bins.

Part of our lovely day out in London was dinner (we had hoped it would be celebratory, but we won’t hear about vague thing we cant talk about yet until tomorrow or Monday). As a special treat, we’d booked a table at Marco Pierre White’s Italian restaurant on the South Bank. I was beside myself with excitement as I love some of the TV stuff he does.
The entrance was beautiful with just 8 minor issues – all of them steps. The solution was to walk to the back of the hotel where there is a ramp.

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And bins. And no clue on how to get in.

Once in, it was just bliss! The staff were helpful & made every effort to accommodate us. And the food. Heaven! I utterly second MP’S recommendation of the bolognaise pizza!

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If I need help, look where you’re going!
I started writing this blog post about 12.30 am & it’s now 3.15am. Why aren’t I asleep?! Well, earlier Mr Geek helped me down a curb by easing me down backwards, misjudged the height, didn’t see the hold in the road & the chair dropped down the height of the curb plus hole.

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As my wheel touched down, my left hip popped out (unusual, it’s usually my right side) & I yelped. And swore. Then used the chair to wiggle it back in & had a little cry. Painkillers were duly administered & I assured poor Mr Geek that it really wasn’t his fault. Yes, he’s a bit clumsy & cakhanded, but London appears to have not mastered the art of the drop curb yet…

… and where they have included a drop curb, Southwark  Council has a funny idea of the best place to situate recycling bins.

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12 hours and 3 doses of dihydrocodeine  & oramorph later and I still have knives in my hip and sleep arrives in 10 minute naps until the muscles relax & go back into spasm & wake me up again.

Other quick & easy ones.
Please don’t move my chair out of reach if I’m on the sofa. Ffs.

No you can’t ‘have a go in it’

Please don’t suggest adaptations, then get huffy when I say no. I know you’re trying to help, but I’ve got it set up my way and tyres “just” 1/4 inch thicker will rub against my skin.

Also, don’t touch my chair.

Life In A Cage

I had a bit of a strop today. Not uncalled for, but stressing over something I can’t do a great deal about with immediate effect.

Yesterday, the plan had been to grab the bikes and head out for the day. Mr Geek decided that buying the new roof rack for the bikes was on the cards as the old one takes an age to put on & isn’t entirely stable. He would only be an hour getting that and lunch, so I supervised the kids getting their swimming stuff together & cracked on with the last of my marking. An hour later he returned triumphant & we had lunch… then waited. After 2 hours, I was going stir crazy. The kids had returned to their room or were whizzing around the garden on their bikes. And I paced between the kitchen & conservatory like a caged animal.

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Why? Because having busted a gut getting us all ready, I have to wait for Mr Geek before I can leave the house. I can’t get out the back door at all & the front door requires an able bodied person to put down our portable ramps. So I’m stuck. In the end I slouched on the sofa & read my book, then had a nap as I’d worn myself out being pissed off at not being able to reach the good weather aside from leaning precariously out of the door to just breathe in the air. I’ve tasted a bit of freedom now & I’m not keen to go back inside my box.

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Today took a similar turn, with me being perfectly happy to visit with in laws (I really enjoy their company – how many people get to say that eh?), but plan A was scrapped so we came up with plan B of visiting, then some family outside time to de-stress everyone. Having explained that Beanpole was stressing about the looming SATS that start tomorrow & I’m stressing about expectations to make the kids revise; This combined with explaining that sitting still in my chair is causing thunderous pain, but propelling allows me to engage my muscles and fight it off for a bit. So we gathered bits from the shop on the way over & sat still in the sun for over 2 1/2 hours. The net result of this was no time for family outside time as I couldn’t pluck an accessible alternative out of thin air, a bastard of a backache, and bright red shoulders (guess who can’t feel the burn over the nerve pain. Silver linings…). Eventually, instead of brooding I said something. What was heard was “I’m angry because I didn’t do what I wanted today”. I didn’t explain it properly & I apologised for being grumpy. Then took that feeling, screwed it up tightly and shoved it in a mental box. Except that box is full & wont close so I wrote a blog about it to remove it all from my head & keep it sealed up tight. I’m angry because my voice wasn’t heard, I’m angry because I have no physical freedom & feel like I have to doff my cap because otherwise I’m fucked.

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That in itself makes me feel even more trapped. In that way it’s a double whammy because not only do I have to wait until someone else is ready to help me, I have to be constantly grateful and keep my temper. Most normal adults have the option of walking away to cool off, or frankly, walking. How exactly am I meant to do that when I reach the front door & face the prospect of faceplanting if even attempt to get my wheels over the threshold?!

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So here I am, working through it all in my head and realising that I’m not actually angry with Mr Geek; I’m living for the weekends when life is about my important people & when I spend most of that time waiting for them to want to engage with me, I feel hurt. They are my important people. I came second to Pintrest & a bike rack (TinyPants, in her defense, recognised the caged animal thing & read me Grimms fairytales even though she proclaims to hate reading, but she knows I love to hear her read). I’m reacting like anything that once roamed & now has a cage put around them – I’m on constant fight or flight on the off chance that I see an escape. This combined with pain means no sleep. No sleep means bad temper & more pain. And so it continues.
I’m resentful that I now have to sit in that bastard bloody powerchair and crush my spine & pelvis for another week to smile & cajole like a tortured CBeebies presenter, kids who now outrightly ask why I can’t just do their coursework for them, or threaten to bring parents in when I don’t grade them high enough (I do love my job – this half term is always particularly tough. This year moreso than others). However, I’d rather be there to collect my stressed out offspring & feed her ice-cream until she forgets about the exams.

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As with most things, I don’t just offer problems, I find solutions, and here’s my first offering: A customised Google Map for those of us who need a bit more info on places we could achievably get to or get around. I’ve started adding the places we’re visiting & maybe you’d like to contribute? As a crowdsource, we could create an awesome free resource! Just drop me a twitter message @WorthingWeb with your email or leave me a message below.

My Accessible Google Map

The next has got to be rampage. As in ramps, not going on a rampage. Without access to anything outside the house without help, a rampage is going to be quite ineffectual. But if I continue to feel trapped inside the house, there’s going to be an issue. More than just me grinding my teeth at night and sleeping even less than usual. Either I’ll get pissed off and start making my own solutions like bum shuffling over the threshold then dragging the chair after me, or I will mount a protest by refusing to go inside. The latter is pretty much what my old cat did. The fact that I’m considering taking protest cues from a deranged and not mildly psychopathic ball of fur, teeth, & claws ought to be saying something.

I’m asked a lot at various appointments about my physical symptoms & Mr Geek is more often than not asked how he’s coping. Only very occasionally do professionals ask with any actual interest how my head is. God forbid, I might tell someone the truth one day and tell them that I was a real tiger once, but now I just pace back and forth between the corners of my strange cages.

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