My Diary of Insufficient Support – Day 0

Hello Internet!

I am being sent home from hospital tomorrow without any extra PA home support hours. So I’m going to document daily life recovering from surgery without sufficient support at home.

The video is over 6 minutes long, and I will return someday to type up what I said. In the meantime, if anyone feels inclined to do that for me, then please message me, you beautiful human!

Until tomorrow…

Click here to view video on YouTube

*** UPDATE ***

The stupendous Kelly managed a transcription which is the pinned comment on YouTube. I think it was automated, so here’s a slightly tidied (and punctuated!) version:

hello Internet! A

pologies for the weird

lighting but I’m in a hospital ward in Sligo University Hospital. It’s my last night here; I’m being sent home tomorrow, after having some pretty straightforward back surgery nearly two weeks ago. I could have gone home a week ago, but we were waiting to hear from the manager of Physical and Sensory Disability Services for the Northwest, to see about an application for extra Personal Assistance home support hours for the recovery period when I got back from this surgery. The surgery was originally scheduled for the beginning of February, and prior to that, with my local service provider, LAPWD, we let the manager, Joanna McMorrow, know that this surgery was going to happen; that I would need extra PA support once I came out of the hospital. Apparently, at one of the monthly planning meetings, she said, “Yes, we’ll arrange that for you”.

So, over the course of this last week, nurses here at the orthopedic unit have been trying to contact joanna McMorrow; sometimes they were ringing several times a day, they were sending emails, they were sending in paperwork – because they didn’t want to send me home without having sufficient support, so that I could survive.

Now, I’ve just had the back surgery, but that is in the context of having a long-term chronic pain condition, since 2007, that has significantly worsened over the intervening 12 years. It’s related to soft tissue problems, unstable joints and hypermobility, which hasn’t yet properly been diagnosed. and other Zebras out there will know which diagnosis I’m talking about not having. I use a wheelchair for getting out of my own house. Although with the drop of mobility that I’ve had over the last couple of years, I will be getting a lightweight manual wheelchair to use within my own house. But even that’s going to be restricted because it’s a small house. That’s arriving on may the 14th.

I’m also pretty much blind, which a lot of people don’t necessarily take into account, especially not when they see the wheelchair. I use a guide dog, who has also been trained as a mobility assistance dog by IGDB, the Irish Guide Dogs for the Blind. I can’t read any print. Basically, in order to leave my own front door, I need to have the power chair and the guide dog. In order to function at home, I need to have Personal Assistance support for meals, cleaning, including washing my own hair, laundry, paperwork, filing… most things on most days I could use PA support.

I’ve had 15 hours of PA support for the last ten years, or maybe even more. Prior to that, I had 10 hours per week of support, and that was when I was, if you like, only visually impaired, not mobility impaired. With that 10 hours, and ambulatory mobility, I was able to be self-employed, running drama-based workshops, educational and arts-based workshops, as well as doing my own research into early Irish literature – which I still do some work on. (On Story Archaeology, which you can look up and subscribe to.)

I’m telling you all this because I haven’t been given any extra hours. I’ve been told to rearrange my existing hours, yet again. This is about the third time that I’ve applied for extra hours, and been told to rearrange my existing hours.

So the way it’s going to work is that I’ll be getting one hour of support each morning, and then one further hour each afternoon, and then I’ll have a spare hour somewhere in the week. I don’t know how I’m going to manage on that, but what I’m going to do is try and furnish you with daily reports, so that you can see how insufficient that is; and also maybe get a bit of insight into daily life with multiple disabilities; and how available support systems for somebody in my position are really falling so far short of the mark.

So I will leave it there for this evening, this being Sunday

the 5th of May. So tomorrow I will be going home. I’ve already ordered my shopping online, and my local supermarket has very kindly said that they can do the picking and delivery on a bank holiday Monday – because it’s me, because I’m a long-term customer of theirs. So big shout out to Glancy’s Supervalu of Carrick on Shannon! This is not a sponsored message.

I will check in with you tomorrow after I’ve had chats with at least one of my existing PAs, who’s going to be losing, I reckon, more than 50% of her current income, possibly having an increase in her travel expenses because of this rearrangement.

So wish me luck for the journey home tomorrow.

I will check in with you, O Internet of People, in 24 hours or so. Goodnight.


Local Coverage – A Small Step toward World Domination

Here’s a quick interview I did on local radio station, Ocean FM, for World Sight Day, Thursday 10th October. My less-than-15-minutes starts around 42 minutes into the show.

Please, sir, may I come in?

Bad Access is Bad Business

Here are some questions you can ask a venue or a service provider to find out if what they’re offering is genuinely accessible:


1)          Does your premises have level access from the street?

>  [i.e. no step or lip at the front door]


2)          If there is a step or lip, is there a ramp available at the premises to allow a wheelchair user to enter?


3)          Is there an accessible toilet on your premises?

>  Is the accessible toilet and the area leading to it kept clear of cleaning equipment? [Many premises treat an accessible toilet as a broom-cupboard, which means it isn’t actually accessible]

>  Is the accessible toilet clearly signed and kept unlocked? [If an accessible toilet is habitually kept locked, it can mean that someone wishing to use it has to “ask permission” to use the toilet, or the key can get “lost”!]


4)          If the premises has more than one floor, is there lift or ramped access to every level of the building which is open to the public? [e.g. the Garravogue in Sligo is mostly accessible, except for the “Library Lounge”, which has a few steps to it, and no ramp on the premises.]


5)          Is there a member of staff at the front desk who can greet and guide people? [A helpful member of staff who will ask anyone if they would like assistance can make up for a great deal of bad architecture!]


These are just a few questions which will get you a clearer response than just asking “Is your premises accessible?|.  By asking these questions any time you are scheduling an event, then more and more businesses become aware of what makes a real difference to people with disabilities, and people who are simply having a bad day!


It has been said more than once that a hospital is no place for a sick person.  But it is the kind of place one might expect to be relatively accessible, given the numbers of people being moved around the building on trolleys and in wheelchairs.  Oh, the naivity of such an expectation!

Last Wednesday, I was at the outpatients department in Sligo General Hospital for an appointment with a geneticist.  Sligo is one of the better hospitals in the country, serving a geographically vast and disparate population.  It is desperately trying to hold onto its recently acquired cancer care services, so that people in North Donegal needing daily radiotherapy treatment or regular and debilitating chemotherapy don’t have to make a 6-hour journey to get to this treatment, never mind the 6-hour return journey.

Part 1: The Front Door

So, back to my jaunt last Wednesday.  The hour-long car-journey left me very stiff and sore as usual, and I had BOTH my PA’s with me – one to drive and one to push the chair!  We arrived at the Outpatients main door, which opens straight into a cafe area.  Unlike the main doors of the hospital, these were two sets of heavy manual double-doors.  The second door of each set had to be unlocked and held open by passing cafe staff, my two PAs and other hospital visitors.  Having swerved and ducked under the arms of this team of door-holders, I find myself in the care, facing a table and chairs, with a rack for trays on my left and an approximately 2-foot wide gap to manoeuvre myself, my chair and my guide-dog through.  It was like some bizarre stunt-wheelchair-rider obstacle course.  A couple of chairs, tables and “Danger; Slippery When Wet” signs were kicked aside to allow me ingress to the main hospital.
Whew!  One obstacle course complete, several more to encounter.


Part 2: Waiting Under the Stairs

My appointment letter instructed me to make my way to “Waiting Area 5”.  This involved registering at a very flimsy desk which was akin to a street stall with comparable facilities.  Naturally, it had a counter level which was over my head at wheelchair height, so I jammed myself between the side of the desk and a row of seats for waiting patients.  This also meant blocking the main access channel to a number of clinics and offices, so everyone who waited to pass had a great chance to ignore the sign on my guide dog saying “Please don’t distract me, I’m working” – petting her, talking loudly about her without any reference either to me or to the fact of her being a WORKING dog.
We were directed to wait in a cramped space that felt like a cupboard under the stairs.  It included some toilets, none of which would accomodate a wheelchair, and one of which had no way to lock or keep closed from the inside.  We were right beside an emergency exit which was directly opposite the front door we had squeezed through.  No way of leaving that way without setting off alarms, though.The only space I could really wait in my chair was directly in front of a door to an office.  Although this didn’t prove a problem, it was a great excuse for the excitable nurse that came through to make fools of her and me.


Part 3: Over-excited Nurse

Human beings, in any given situation, can be the greatest hurdle to accessibility.  In particular, with guiding or assistance dogs, certain people get transfixed by the dog and their brain stops working.  One such was a random nurse who passed through where we were waiting.  The usual squealing and gooing ensued, the getting down on all fours to let the dog lick her face…. and then she went into her little clinic room to treat a BABY.  No apparent washing of hands, though I’m (fairly) confident she would have worn gloves.
As she came back through, she noticed that I was parked in front of an office door.  She knocked on the door and poked her head around it.  “Just to let you know, there’s a…. a PET out here; just so you don’t step on his tail”.  She did NOT say: “Just wanted to let you know there’s a woman in a wheelchair in this waiting area.  There’s nowhere else to fit her wheelchair, and she has a guide-dog here too.”  That would have been helpful.


Part 4: Blood in the Stairwell

After a very interesting consultation with a wonderful geneticist, I went down the corridor to have some blood drawn for genetic analysis.  The bloods room seemed to be two rooms with a connecting door, access to which was via a narrow passageway at the foot of a flight of stairs.  I had to go straight through the corridor past the stairs in order to turn my wheelchair, then back along the corridor to the entrance.  There was a row of seats along this corridor which meant I had to wait in the space directly in front of the door.  There was no way of bringing my guide dog in, so my PA kept her company outside while I had genetic material extracted from my arm to be kept on record indefinitely.


Interlude: A Reflection

I realised that I have no problem with my DNA being kept on record indefinitely for scientific research, health issues and future historians or anthropologists.  Just as long as NO government agencies or Justice powers have any access!


Part 5: An Unfortunate Potted Plant

I took the opportunity to visit the Day Services section of the hospital which houses the Pain Clinic.  Not for an appointment, but to see if there was any news about my referral to Bath Rheumatology Hospital for tests.  I had been on the system in Bath since last June / July (about 8 months), and for most of that time, their administrators were waiting for an E112 form from the HSE to pay for my treatment before they issued an appointment date.  Meanwhile, the HSE were patiently (pun kind of intended) waiting for an appointment date from Bath before issueing the E112 form.  After about 6 months of me trying to find out who to ring and talk to to move things along, I figured out that this was the impasse and it started moving again.  NOTE: My pain specialist, his secretary, the administrators in Bath Hospital, the HSE office in charge of issueing E112s: NONE of these people, with whatever resources they have, and whatever their job description, noticed that this was what was holding up my best chance of a diagnosis for my crippling pain condition.
SO I went up to Day Services, which again has a counter height that extends above my head when I’m in the wheelchair.  To communicate with the staff meant squeezing in between the side of the desk and the first row of seats for waiting people.  After talking to these good people, I backed out to wait.  There was (maybe still is) a very unfortunate potted plant which just got repeatedly battered by my chair no matter how I tried to manoeuvre.  I just gave up and stayed in the middle of the corridor as usual.  The waiting area was thankfully very quiet.



And the pain clinic secretary went and rang Bath and was able to give me my appointment date!!  I’ll be admitted on Sunday 15th March for 3 (more likely 5) days.  Now for the fun of international travel in a wheelchair!!

Today’s Subjective Rating:  Grimly Amusing