Nursing A Grievance

It has been a week or so of miscommunication, or rather, missed communication. Two different but parallel issues that pretty much sum up the frustrations of being dependent on other people doing their jobs so that you can do two of the absolute basics of life - go to the lavatory and go to sleep.

Three times a week, Tuesdays, Thursdays and Fridays, two district nurses come in the afternoon to help me go to the loo. You may imagine this involves hoists and slings, catheters and so on; in reality it involves pulling my legs forward until I'm at the edge of the wheelchair seat and passing a bottle. Not difficult but necessary. Knowing that the nurses are coming means that Polly is free to go to work or shopping or running on those days and doesn't feel she needs to dash back mid-afternoon (not that you can just dash back from a shift at Great Ormond Street Hospital or the Marsden or a Hospice). In my extensive experience the nurses who come are always (well nearly always) friendly and helpful and professional. Obviously we cancel the calls when we are on holiday.. 

As mentioned in the last post we went to the New Forest for a week. When we returned we expected normal service to be resumed but on the first Tuesday back no one came. Never mind we thought, they've simply forgotten we were only going for one week. Polly rang them and left a message on their answering machine. Sorted.

On Thursday no one came. Fortunately Polly came home reasonably early. She rang again. This time she spoke to a human being. What, she asked, was the point of leaving a message on their answering machine if they weren't going to act on it. Apologies were made. Sorted.

Friday came, which was more than could be said for the district nurses. More phone calls, more apologies. Obviously there had been some sort of misunderstanding. Next week would be a fresh start. Definitely sorted.

The weekend passed in a mood of gloom as the boys realised that they would be going back to school shortly and that homework, of which for the whole of the summer they had denied all knowledge, needed to actually be done (or at least plausibly lost). On Monday Polly took them to the Spectrum Centre in Guildford for a final holiday treat of flumes and artificially generated waves. Summer was officially over.

On Tuesday the district nurses didn't arrive. I was annoyed. Polly was ballistic. When Polly is mad she puts aside her genuinely non-confrontational, friendly and accommodating persona and adopts her more fearsome Mrs Deal alter-ego. When she finally found a human being of appropriate seniority to talk to on the phone I could hear extracts of her side of the conversation all the way from the kitchen. Questions were asked - how could they miss FIVE calls when they had been contacted immediately after each missed visit? How can we plan day-to-day if we can't rely on them to do their job? Yes, they were welcome to take over the morning get-up call if they found finding fifteen minutes three afternoons a week too much. Did they realise that would involved up to two hours seven days a week instead. Did they remember they were supposed to be my care managers and that the three weekly calls were supposed to keep them abreast of my changing condition? Did they understand what a person in a wheelchair did when they didn't know when they'd next be able to go to the loo? They would restrict their fluid intake. Restricted fluid intake for people in wheelchairs inevitably leads to urinary tract infections. Is that what they wanted? Would they be happy to take on the additional nursing that would entail? 

When the phone call end with a curt "Good, we'll expect to see someone on Thursday. Thank you for your help. Goodbye" Matty looked up from the computer he'd been sheltering behind, looked at me and said, "Wow Dad, she certainly went all Mrs Deal on their ass." I couldn't disagree.

On Thursday two district nurses arrived blissfully unaware that anything had gone wrong. They were friendly, helpful and professional as usual. It's not the nurses who are the problem it's the management structure and its inability to communicate when something unexpected occurs. You leave messages with machines or people and they seem to vanish into the ether. Too harsh? What do you think might happen when vital equipment breaks down?

Next time - A Matter of Mattresses.

Thank you for reading. Please comment and share.

The Policeman's Belt

We are just back from our holiday in Hampshire. We stayed in a cabin on the edge of the New Forest at a place called Shorefield near Milford-on-Sea. Door to door the journey should take only a little over two and a half hours, it took us nearly six. It would have taken longer if not for a policeman's belt. The A3 is one of the arterial routes out of London: a six lane, high-speed series of fly-overs and underpasses funnelling traffic out to the M25 orbital motorway or onwards to Portsmouth with its ferry links to the continent. The road is packed with commuters, juggernauts, families on their way to Chessington World of Adventure, locals and a myriad of commercial vehicles all rushing to get where they are going at breakneck speed down unfeasibly narrow lanes and ominously dented crash barriers. It is, without doubt, one of the scariest roads in the South-East. At Tolworth the road dives into an underpass beneath a large roundabout and the hard-shoulder is replaced by concrete walls mere inches from the left-hand lane and the air is replaced by exhaust fumes and the thunderous echo of speeding internal combustion engines reverberating off those all-to-close walls. It was here, as we were being swept through the underpass at 60 MPH, that from beneath our car came the shrieking, clattering, deafening sound of metal on road surface and from behind a tail of sparks lighting up the carriageway. Polly reduced speed down to a crawl but it still sounded like a brick in a tumble-dryer and there was still a small firework display trailing behind. As vehicles screeched and swerved around us she pulled onto the small triangle of hatched white lines that marked the lanes merging from the roundabout above with the main duel carriageway exiting the tunnel heading south. Traffic was now screaming passed us on both our left and our right hand sides causing the car to vibrate and sway as it was buffeted by turbulence from high-sided vans and lorries. Polly phoned the police and explained our predicament. No, we couldn't vacate the car and find a safe place to wait for assistance. The nearest safe place was a minimum of two lanes of high-speed traffic away and over a crash barrier. It would be tricky to get there with two children, an OAP and an electric wheelchair. The police dispatch operator said they'd send someone straight away. Sure enough, a few minutes of buttock-clenching fear later, a police van pulled up with reassuringly bright flashing blue lights to close off the lane behind us. A quick glance under our vehicle told the police officer that our exhaust pipe had snapped, possibly caused by some of the debris that littered the underpass, and that was the reason we were parked where we were and not because we were extreme picnickers or something. "It's scary here," he told Polly nervously, flinching as a juggernaut whipped by. "Very scary. I think I'll call traffic. They're equipped for this kind of thing. Maybe they'll be able to tie your exhaust pipe up. I'll wait in my van until they get here." Soon, two traffic police cars arrived and the officers assessed the situation. They assured Polly she had done exactly the right thing and then set about trying to temporarily fix things. Eventually an officer leaned in the window. "We've tied the exhaust pipe up," he said. "It should hold until we can get you somewhere safe. We didn't have any wire so I've used my belt. My colleague's belt is plastic so it would melt but mine is leather. Good job I had a hearty breakfast or me trousers would be down around me knees. Now we'll stop the traffic so you can get up to speed. Follow us and we'll lead you to a safe place to wait for the AA. Then can I have my belt back, please?" We were escorted off the A3 by the police. You could see passing drivers wondering what awful crime we had committed. The traffic police led us to a garage forecourt and the policeman retrieved his slightly singed leather belt. We waved them off and settled down to await the AA who arrived after about half an hour. The AA man explained that the exhaust had broken at a particularly tricky place and because our van is adapted to carry a wheelchair the exhaust is nonstandard, it having been customised to allow for a lower floor. In short, he couldn't fix it. Instead he tied it up, this time with wire, not a belt, and led us to the local Kwik-Fit in Surbiton. Because the exhaust is nonstandard Kwik-Fit couldn't just plonk a new one under the car. We have to order a completely new customised unit from a specialist manufacturer. Shouldn't take more than a week or so. The man said he would try to make a temporary mend using a cuff he'd order from the main supplier. It would take an hour or so to arrive so we settled down in their waiting room and played with the fancy drinks machine while we waited. Eventually the part arrived and the Kwik-Fit man got to work bodging a fix. It took a little while but, at last, the man announced that he and his colleague had engineered a solution that held the two bits of exhaust pipe together and that it should last through our holiday and until a new complete unit could be made and fitted. We braced ourselves for the bill for this impromptu piece of automotive construction. "No charge," said the man cheerfully. "Have it on us. Enjoy your holiday." It might not be true that you can't get quicker than a Kwik-Fit fitter but you certainly can't find nicer. Thank you Kwik-Fit, Surbiton. And if you see a police traffic officer with a burnt leather belt then please give him a wave. Thank you for reading.

Making A Move - Part One

If you have been a follower of this blog for any length of time you will know that in 2011 we moved to a new house. Previously we had been living in a two bedroom ground floor flat with a small garden but with two growing boys and the paraphernalia that comes with disability it was becoming a bit of a squeeze, to say the least. It took the intervention of our MP, Tom Brake and our GP, Dr T as well as social services, the district nurses and letters from a specialist doctor at Kings' Hospital to eventually get things moving, so to speak. And, of course, an Occupational Therapist, someone with a professional understanding of disability and the appropriate equipment and housing needs required by us pesky disabled folk.

But, just in case you think the process was a smooth one, let tell you a story. We had been assigned an OT, let's call him Mike for the purposes of this blog. Mike was a charming man whose job, in our case, was to help us find suitable accommodation. He was full of ideas and had a lot of sympathy for our position and so set about finding us somewhere with at least three bedrooms. Three bedrooms was his mantra. I began to worry exactly how much of a grasp of our situation he actually had when he took us to view what he considered to be an ideal prospective home. It was a bungalow in Sutton, located directly behind the High Street at the end of a cul-de-sac. You could go out of the front door and be in Asda within thirty seconds. Of course, you had to share your parking slot not only with the local residents but also with the delivery lorries for the local stores. The bungalow had a tiny garden and was overlooked by blocks of flats on all sides. You could only see the sky if you looked directly up and there was an odour of rubbish emanating from the communal bins some 30 feet away but, as Mike cheerfully reminded us, the bungalow had three bedrooms.

Inside there was a combination kitchen cum living room which was, in total, about two thirds the size of our current living room. The ceiling was a kind of nicotine mustard yellow from, well, nicotine it appeared - and smelt. Along the hallway was a bathroom that I pointed out that I couldn't get the wheelchair to fit in. Next to it was a small cupboard that Mike suggested we could knock through to make more room. Also along the hallway were the three, much trumpeted, bedrooms. I couldn't get into any of them because the angles were too tight but even from the doorways I could see that each bedroom was smaller than either of our already too small current bedrooms. Mike suggested, after he had assessed the situation, that if I backed into the smaller of the bedrooms first I could get the angle to enter the slightly larger one if we pushed the bed into the corner and took out the wardrobe. Instead I reversed back down the narrow hall to the only place I could turn around, the kitchen cum living room. I could hear Polly reassuring the current occupant that we really didn't mind the mess and absolutely understood how difficult it could be keeping a home clean.

Polly and I retreated to a local cafe (about ninety seconds away, very convenient) to weigh up the pros and cons. We'd agreed to meet Mike to give him our impressions there in a few minutes time. The pros, we decided, were good access to the shops. The cons were too many to list. When Mike arrived, grinning cheerfully, he said, "There you go, three bedrooms. Sorted."

As politely as I could I pointed out that yes, technically the bungalow had three bedrooms but that, in actuality, the bungalow was considerably smaller than our current flat and that what we really needed was more space. Mike was a little put out. "It has three bedrooms," he said, firmly. "You said you needed three bedrooms." I looked to Polly, hopelessly. "I think what Steve is trying to say," explained Polly, "is that, yes, we need three bedrooms but that of those three bedrooms at least one of them has to be large enough to get the wheelchair into as well as the bed and the hoist and, perhaps, a chest-of-draws." "Ah," said Mike, triumphantly. "I've thought of that. We can knock through into that cupboard next to the bathroom!" "The same cupboard we were going to knock through so I could get into the bathroom?" I asked doubtfully. "It's a linen cupboard - not the bloody Tardis." Ignoring my sarcasm Mike looked sceptically at my wheelchair. "That's a mighty big chair," he said. "It's not that big," I protested. "It fits in a car. It fits in lifts. It's not a Humvee." "Does it now," mused Mike. "Does it what?" "Fit in a lift." "Absolutely," I assured him. "Up and down in them all the time." With that Mike whipped out a tape-measure and wrote down the dimensions of my chair.

On the way home we passed some houses being built on an old brown-field site. We looked at them longingly.

Next time... Why it is important to understand how a wheelchair works.

Faulty Connections

Thank you to everyone who has welcomed my return to blogging, I've appreciated every comment, like, repost and retweet. I'm glad to be back, after all, if Li wasn't blogging I wouldn't be able to ask you this...

What, I ask you, would you consider to be the minimum requirements, the prerequisites, for a wheelchair repair engineer? An encyclopaedic knowledge of different kinds of wheelchairs? A familiarity with the various faults that wheelchairs can develop? A well equipped toolkit so you can fix the fault you have cannily discerned and identified? You'd think so, wouldn't you. Let me disabuse you of these foolish notions.

My wheelchair has electrically powered leg-rests. Each leg-rest can be adjusted independently using a setting on my hand-controller. For a few months there has been a fault on the right side leg-rest whereby whenever it is used it causes a short-circuit that locks up the controller and flashes up an error message. This is particularly annoying because it is very easy to accidentally find yourself knocking the joystick when cycling through the various options, particularly when trying to find recline or tilt, suddenly finding the chair disabled. To reset you have to switch off the chair, switch it back on, press the Mode button and cycle through the options again. Not a critical fault but an annoying one nonetheless.

We arranged for an engineer to visit from the company that has the local wheelchair repair contract on Tuesday morning. Tuesday morning was an ideal time because I have extended hours on the BiPap those mornings and am therefore not using the wheelchair. The engineer didn't come in the morning as arranged, he came in the afternoon instead. I demonstrated the problem to him. He sucked air through his teeth in the traditional manner and said "I wonder why that happens?" At this point Polly arrived and pointed to the exposed wires on the connecting cable. "Hmm," said the repairman. "I'll need a soldering iron." He was the expert so we nodded encouragingly. "I haven't got a soldering iron." Of course he didn't. After all, why would a repairer of electric wheelchairs ever need such an exotic tool? He examined the wires, unwrapping the worn electrical tape that had left them exposed and therefore able to touch each other. "The problem is these wires," he explained knowledgeably. Polly's eyes almost disappeared as they rolled in their sockets. "They need connecting." "I have a soldering iron," said Polly, helpfully. A slightly panicked look came onto his face. "But I don't think I've got any solder." Was that relief I saw in the young man's eyes? "We could pop down the road to the hardware store and get some," she suggested. At that point the repairman mumbled something about getting the right stuff from the depot. He then rewrapped the wires in the decidedly non-sticky electrical tape he had removed originally and asked me if that had fixed the problem. It hadn't. "Perhaps some fresh tape might make it more insulated," wondered Polly. "Err... I haven't got any with me." Later, with the engineer safely away and promising to arrange a return appointment, Polly examined the wires carefully and twisted the appropriate ones together. She found a roll of gaffer-tape and isolated each of the wires, wrapping them individually. Then, with a cable-tie, she attached the cable safely to the appropriate part of the leg-rest. It took less than five minutes and not a drop of solder before the fault was fixed. Meanwhile, we're still waiting for the company to contact us and make a return appointment. I imagine the young man is looking at the mysterious tool in his tool-kit and wondering why he needs a screwdriver that gets so hot at one end. Thank you for reading.

Hear Hear!

Over recent years I have noticed something peculiar about people. They all mumble. They miss out bits of words. Children are the worst, what with their squeaky high-pitched incomprehensible rambling. Women are almost as bad. People in groups produce a wall of unintelligible and impenetrable sound. The whole world needs elocution lessons. Or... Just possibly it might be my hearing. To rule out this absurd possibility I recently attended the Audiology clinic at my local hospital. It turns out that 50% of us with Facioscapulohumeral muscular dystrophy have high frequency hearing loss. Guess which 50% I fall into. The charming audiologist placed headphones over my ears and played various sounds into each of my ears while I pressed a button if I heard anything. Often I heard burps and rumbles and I dutifully pressed away. Sometimes the machine wasn't working and I heard nothing. Eventually the audiologist used her computer to generate a graph to represent my bat-like hearing. "This line," she said, indicating a straight red line crossing the chart, "would represent perfect hearing. This blue line is you." For about two thirds of the way across the chart the blue line wobbled at fractionally below the ideal red line. Not too shabby. Unfortunately, at the final third - the third representing the higher frequencies - the line plummeted down the graph like an unsuccessful attempt at hang-gliding off Beachy Head. To remedy the situation the audiologist produced two shiny little hearing-aids and plugged them into her computer. "There," she said. "I've programmed them to compensate for the high frequencies you've lost." With that she inserted the plastic tube bit into my ear and turned them on. "You'll need to practice wearing them. It takes a while for the brain to process frequencies it hasn't heard for a while." This did indeed turn out to be the case. For the next few days my brain ascribed the same significance to all high-frequency sounds. The squeak of my tyres on the floor was accorded the same auditory status as peoples voices. The sound of a distant lawn mower the same as the television. Worst of all, our budgerigar, Cato, twittered and tweeted at the apparent same volume of a commercial airliner taking off. Eventually though my brain began to work out which sounds had significance and which could be safely relegated to background noise and a kind of sonic harmony was achieved. A few weeks later I had an appointment with the audiology consultant who was positively thrilled to discover there was a link between FSHD and high-frequency hearing loss. "Well, I've learned something new today," she said, delighted. She also suggested that the hearing-aids should have their programming tweaked now that my brain had adjusted to them so as to maximise their effectiveness. This was duly done but the result means that for the last couple of days the budgie has sounded like he's been given a megaphone. One brilliant thing though was that we had taken Sam, now 10, with us. On our way to the clinic we passed the League of Friends' cafeteria. "The League of Friends," mused Sam. "Does that mean it's run by superheroes?" "Yes," replied Polly. "All of them cunningly disguised as elderly ladies wearing tabards." Thank you for reading. If you choose to comment please write quietly and annunciate clearly. Thank you.

How To Be An Inspiration is BACK!

'When are you going to start writing your blog again?' a number of people have asked me lately. This, I have decided, is a not unreasonable question. I stopped writing the blog because it had become physically very difficult to type the words needed to express myself satisfactorily. Things though have changed a bit since my last entry in 2011 and quite a lot since I stopped regularly updating in 2010. I'm still using an iPad (an iPad Air actually) but I have discovered that if I use a longish stylus, a particular type of stand, and a non-slip mat I can position my hand in such a way that allows me to pick out letters, one a a time, but at a reasonable speed. So... I hear by announce that, until such time that things change again, the How To Be An Inspiration blog is back. Tell your friends, your relatives, your therapist. Why now? Polly, the light of my life, the button on my pajamas, the mother of my children, has decided that aside from working as a Giggle Doctor (the new name for Clown Doctor), being a children's entertainer, a parent to a teenager and a ten year-old, looking after me and my many many needs, and digging an allotment, that she wants to do a degree. She has signed up with the Open University and starts in September. Humbled by this prodigious workload I decided to start writing again, even if I could only write a few words at a time. I'm currently 35,000 words into my first novel. I've missed writing this blog - stupid things keep happening to me that I think will make you laugh or yell in frustration, either way I hope they will entertain. I'll be back soon. Thank you for reading.