A missive from the depths
Adventures with wheelchair services
I thought I would provide a brief glimpse into the world of disability. You might think that living in a wheelchair was bad enough. But you also have to factor in wheelchair services. Here's a copy of the letter of complaint I sent this morning to my local one.
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To whom it may concern
I am writing to make a formal complaint about the poor quality of service provided at AJM wheelchair service, Walthamstow.
Specifically, I would like to complain about the new clinical lead, ‘***** Clinical Lead’. I am confident that that is not in fact his second name, however, when I phoned Walthamstow AJM to obtain this information, I was denied it by the rude and unprofessional phone operator who simply told me “there is only one ***** here” and refused to divulge further information despite my explaining that I wished to make a formal complaint about a specific member of staff.
I have so far had two encounters with *****, and both of which have been deeply unsatisfactory.
The first was when I travelled to the AGM Walthamstow offices to pick up my new prescription wheelchair. Things got off to a bad start when ***** thought it would be a problem that I needed to be hoisted from my existing chair onto a plinth, whilst the new chair was set up. For clarity, I am a full-time wheelchair user with complete tetraplegia – hence why I was collecting a full power chair. I cannot use my hands, let alone stand. Yet ***** repeatedly asked me if I was able to transfer out of the chair with assistance in a standing position. After explaining that I simply could not do this, and pointing to the fact there were slings hanging in the room to use for hoisting, I was able to persuade him and a colleague to hoist me onto the plinth.
When I was later hoisted to the new chair, ***** repeatedly asked me if it was “comfortable”. To repeat, I am a complete tetraplegic: I have no sensation from the neck down. Asking me if I am comfortable on a wheelchair is inappropriate on multiple levels, both professionally, physiologically, and as a matter of respect. He appeared to lack the most basic awareness of my condition. I tried to explain this but he did not seem to understand.
Eventually I was discharge with the new chair, but for the remainder of the day, I had severe problems with managing to breathe properly, feeling I was being tipped forward constantly, whilst my legs repeatedly spasmed out of position on the wheelchair plates. My suspicions that the chair had not been set up correctly were confirmed when my private physio, who is a spinal cord injury specialist, visited me. She was appalled, and flatly declared that I must not sit in the chair until an engineer had altered multiple specifications, as it was not safe for me. These included the base being completely the wrong length meaning that my legs were in dangerous pressurised contact with sections of the chair; the back rest being at the wrong height; the cushion being the wrong size and having been fitted to the chair rather than to my body; the foot plates being set far too wide leaving my legs sprayed in a dangerously pressurising position; the general set up providing inadequate postural support, hence causing my difficulties in breathing. To emphasise: the clinical lead at Walthamstow AJM saw no problem in allowing me to leave in a chair set up so incorrectly that a specialist physiotherapist declared it dangerous.
My second encounter with ***** was this morning, when he telephoned me to ask me to provide him with the serial number on the bottom of my wheelchair. That is, he somehow expected a full-time wheelchair user to get out of the wheelchair, crouch down on the floor, and read a serial number to him. He also suggested that I use my phone to take a picture of it – something impossible for me due to my massively reduced hand function. Things were further complicated by the fact his English of such a poor quality that he used the wrong words to try and explain what he wanted me to do (he kept telling me to look at the “levels attached to the wheelchair”), and seemed incapable of following me when I explained that I cannot get out of the wheelchair. Things became so confused that I literally heard colleagues of his in the background instructing him on what to say. It thus appears that not only does ***** lack the most basic understanding of the job he is supposed to be doing, but he also lacks the basic English language skills required to communicate with clients.
It is my view that he is simply not competent to be doing the job he is employed for. Given the crucial importance of the role of a clinical lead for wheelchair users, I would urge AJM to review the situation as a matter of urgency.
Yours Sincerely,
Dr Paul Sagar
https://www.ombudsman.org.uk/sites/default/files/RH%20to%20AJM%20090524.pdf
The above letter (it will open as a PDF in your browser) from the Parliamentary and Health Ombudsman, Rebecca Hilsenrath, to AJM Health, from earlier this year, would indicate that. while you may be isolated, you are not alone in receiving negligent treatment, bordering on malfeasance, from AJM Health. Every so often, in moments of profound weakness, I consider starting an NHS-themed Substack, that would explain how different parts of the service operate. Then I come to my senses and think, dear God, no – fuck that idea into the same trash can where they dumped the patent for oven-cooling ice-cubes and Satan's preliminary concept art for James Corden.
Recently, I have been making lids for the cardboard boxes where I store my compact discs. I embarked upon this long venture, that I will complete probably around this time next year, on the understanding that there is nothing hotter to women than bedroom shelves filled with numbered boxes, that used to contain bottles of wine when they were delivered to Waitrose, but that now house outdated physical media. It's practically foreplay and a guaranteed conversation starter:
“So, [index finger playing suggestively around the lips] you made these crude cardboard lids yourself?”
“You know it, baby.” [Finger-guns]
But I digress.
During my personal odyssey to put cardboard roofs over the heads of my St Etienne CDs (The Lidiad) I reacquainted myself with a reissue of the final Auteurs album – 'How I Learned to Love the Bootboys'. Tucked away on the bonus disc is the band's parting missive to the world – a live album, titled 'No Dialogue With Cunts'.
Part of your existence, as a disabled man, will be an open dialogue with cunts. It shouldn't be that way, and it is neither right, nor is it fair, but it is a fact. During my time working for the NHS, I encountered patients, or relatives of patients who had their elbows out as a default, and who were bitter and confrontational from the offing. I had to remind myself that most of them didn't start out that way. It's the system, or sometimes people working within the system, not being up to scratch, that compels these people to come at you swinging their grievances like a medieval morning-star. Otherwise, in their experience, either nothing gets done, or it is done badly.
I have noticed, of late, a deterioration in standards within the NHS, which I now experience purely on an outpatient basis. This decline can't directly be attributed to a shortfall in funding. It is more a cultural shift; an abandonment of the concept of public service manifesting as a somewhat adversarial stance towards patients. There are a variety of probable reasons for this, some controversial. One of the causes has been piecemeal privatisation, by means of outsourcing services to private healthcare companies. This is a product of both of the major political parties in the UK. It results in a distancing from the core ethos of the NHS, and a lack of direct accountability. There are binding contracts in place and standards are allowed to slide as a result, because it is easier to do nothing than it is to rock the boat.
On Good Friday, earlier this year, I went for an MRI, as I do occasionally. The man who was sent to fetch me from reception couldn't remember who he'd been asked to collect. Later he asked me to estimate my weight on the release form I was compelled to sign prior to the scan. The MRI was located in a cramped porta-cabin where the changing area was located in the diagnostics area. There was no cubicle or curtain. Fortunately you only had to partially disrobe. There was barely any communication during the scan which was unnerving. Afterwards one of the technicians made disparaging comments about how much I had sweated during the procedure, which unfortunately is what happens when your liver exists under permanent bombardment from your revolutionary immune system. As I was leaving the scanner, I walked into a woman who I assumed was nurse until I read her bewildered expression and realised that she was the next patient. I noted that she had elected to not remove her clothes, which is understandable given that she would have had option other than to do so in what was effectively a cramped corridor, in close proximity to a trio of over-friendly, unprofessional men. I felt so sorry for her. There are a lot of issues within the NHS that aren't just about money. I don't think this would have been tolerated when I worked at the same hospital, but it is now.
Well, on the one hand, I'm truly glad to hear from you again. I think of you often.
On the other hand: ARRRGGHHHHHH!!!!! Really, what the fuck is wrong with people? You would think that at a minimum there'd be some training on the basics of dealing with humans, much less the product they are selling.
So much of the world is simply not aware of barriers that are placed on people with disabilities, people who are poor, people who are vulnerable (for many reasons), and it makes me crazy.
It is my life's work to make people notice. Your posts help.