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Exnovate The Pisitive

There was an odd frisson of excitement and foreboding as the members of Newport Pagnellshire’s Vanguard Innovation Majestum filed into committee room five. Deirdre Trusell was already present and deep in conversation with a, hang about, I recognize that face, guest speaker. An unfamiliar (familiar) face added to the tension. Like a whippet, Deirdre was on her feet:

“Thank you all for coming to this hush hush meeting. I got the overnight train back from Quality 2015, such is the importance of this extra-ordinary, highly confidential, majestum gathering. I think it’s fair to say that yesterday’s conference was akin to a Damascus moment. Ladies and gentlemen, we have been fools. We have been dinosaurs. For sheer, sublime brass neck you cannot beat the NHS innovation movers and shakers. Here at Newport Pagnellshire, we are so far behind the times, I’m ashamed to call myself a vanguard. In fact, Vanguardship is so March 2015. It is as relevant as powdered egg. The future, the blue sky, lies in exnovation. To push the envelope, to viral our quality, we need to exnovate…”


“Exnovate. You may think you’re listening to Deirdre Trusell. I’m here to tell you you’re listening to Deirdre Exnovator, the Nemesis of innovation. And if you want to earn your exnovator badges, you’ll need to think and move fast. How can we innovate, if we haven’t exnovated first. Clear out the crap of your thinking. Exnovate the rubbish into oblivion…..”

“So, exnovation is a pre innovation strategum?”

“In a nutshell Bob. You may have already noticed a new face at the majestum this morning. A new face, but I hope, a familiar face. I’ve not been letting the grass grow under my feet, I’ve already appointed our Exnovation Communications Exnovator. You may know him from one of the 1980s classic sitcoms. Let me introduce you to Arthur Bostrum……”

“Thank you Deidre. Good moaning. I was pissing by the civic center and saw the posters for your virile quality and I knew, I wanted to be a prat of your committitty…”

“Thank you Arthur. More from you later. I know your contributions will be invaluable. I can see the penny hasn’t fully dropped yet. I have seen the future and the future is exnovation. First and foremost, we’ll never have to innovate again. We can see out our careers resting on our six figure, exnovated laurels. We never have to do anything ever again beyond the occassionaly light spring cleaning.

But better still, exnovation opens the doors to a revolution. We now have carte Blanche to make up entirely new words. Brand new, innovative words. Think where that might take us. We dropped a clanger. We managed to get shot of two thirds of our service users (Scoobydinks?) to New South Wales but we still called their new homes, assessment and treatment units. A big mistake. Arthur?”

“I don’t understand. Arsessment and twatment units?”

“Exactly Arthur. You’re on message. I know I’ve delivered a bombshell this morning and you need time to absorb my bomb. I’m asking you, my proud band of exnovators, to go away, have a coffee and exnovate all your old ideas. We’ll reconvene in two hours to flagpole the pompostiums. Just remember. In is ex. Ex is in.

Oh, and by the way, my first deliberation is to exnovate the letter B and replace it with the letter C. Bob – sorry, Coc, your P45 is on your desk. Off you all go then. Arthur. Martinis?”


Hard Working Families

Who’d have thought it! Seems like Steven is on board with Tory party message.

Before I left for work yesterday, I asked the support worker to give me a hand reassembling the lawn mower. Four hands and eyes being better than two, we’d put it back together in less than five minutes.

Knowing how kind most of the support workers are and that their idea of support stretches way beyond their job description, I left explicit instructions that I didn’t want the lawn cut – I would do it when I get home today.

I phoned Steven last night and asked him what he’d been doing:

“Hard work. Massive hard work. Cut the lawn mower with the grass and listened to all the Blur songs”.

Mr Cameron. We are now officially a hard working family. We belong. Please recognize us.

Stories Of The Blues

I was reading a review of last week’s ADDASS conference and the reviewer remarked that the most potent aspect of the conference, the parts that had the most impact were the real stories from real service users and their families. This shouldn’t surprise me – I am always hearing about the power of storytelling; the real life narrative from the expert by experience.

I’m in two minds about this. Sure, plonk me in a room where the two speakers are a senior bod from the Department of Health, powerpointing to the point of powerlessness on the latest rise in DoL’s figures and Mr E from the Bournwood case talking about H’s time in the hospital, and I know which speaker is going to speak to me. I know, when I tell the Get Steven Home story at conferences, that I will look around the audience during the narrative and see people crying, laughing, raging – i.e. the story has impacted. They have experienced an emotional reaction, probably because the story is about and told by, two human beings. We are not a case study.

What does my other mind have to say though? Our story has been in the public domain for nearly five years now, so I wonder if it has any relevance to today. Does a story told at an event really impact on the day to day practices of the people in the field? I am aware that there I am, a human being telling a human story about a vulnerable human being who had his human rights breached after being caught up in an inhuman system. People may be shocked hearing the story today but will it still be around when they are doing a best interests assessment next Thursday? I hope so.

Earlier this year a weird thing happened. I was asked to tell the story at a very large conference. I had quite a long slot and I asked the organiser if I could use the last five minutes to talk about LBBill. He agreed. However, when it came to the end of the story, someone put their hand up and asked – “Please tell the story about the logs”. I chuckled thinking “I’m taking requests now”. Later, it reminded me that I don’t own our story and that’s okay. But for a split second I felt like Donny Osmond trying to plug his new techno country and western album and all the audience wants to hear is Puppy Love.

I guess this is a call out for opinions/experiences. Are stories that powerful? It’s one thing to be moved upon hearing the story but does it have any lasting impact? Should it? It’s one event in one person’s life that is being narrated. And after a while, does the real human story enter a space where it is heard as a story but Is held in a peculiar fiction, mythical memory.By the way, I hope this doesn’t sound ungrateful and I’m also not looking for affirmation. But I am genuinely interested in whether stories are as powerful as the commentators often proclaim.

Dreams of Gabrielle

With the toothache not totally cured and the DVD player of the new TV playing up, there is a slightly tense atmosphere in the Cowley house.

Thank goodness for Steven’s grand flights of fantasy to relieve the tension.

This afternoon, we were watching a Top of the Pops celebration of the nineties. Up pops Gabrielle, singing Dreams. As ever, Steven is keen to develop a back story……

“Gabrielle’s got a patch on her eye.

Gabrielle bashed her eye on a twig.

Gabrielle was in the woods at nighttime.

Gabrielle had left her torch in the kitchen.

Gabrielle’s husband said Gabrielle can’t go indoors because Gabrielle said a rude word.

Gabrielle – you don’t want to be blind like Andrea Bocelli.

Twigs are massive sharp and dangerous.

Gabrielle – go to Holby City & let Dr Elliott get the jip out of your eye.

Steven Neary’s not going in the woods at nighttime. Steven Neary is staying indoors to watch Mr Robbie Lewis and Mr James Hathaway.”

He was still telling the story of Gabrielle’s accident when the programme had moved on to The Manic Street Preachers.

Meeting Dr Peggit

It’s awful watching Steven in pain. The rawness of his vulnerability, which is there all the time, is heightened, and it rips at my heart.

Steven has had toothache since Monday. When I first phoned the dentist, the earliest appointment they could offer was this afternoon. So it’s been painkillers and attempts at relentless distraction since. As anyone who’s ever had toothache will confirm, neither really work.

Steven doesn’t understand pain. He has the words for it now but pain still triggers screaming, destructive meltdowns. The house has been thrashed. We’ve been trashed. Steven has thrashed himself. He swings between smashing the TV and howling, “Make me better please”.

My anxiety levels go up because I start to fear his behavior being misinterpreted. I snapped at one of the support workers yesterday who seemed unable to make the link between the pain and the behavior. And I worry that the behavior will prevent any treatment being carried out. At times like this, Steven can put himself and others at risk, again crashing home how vulnerable he is.

Guiltily, I’m out of the firing line until this afternoon. I had my late night at work yesterday and slept at the flat. Today I work until 1pm and do the weekly shop, getting home just before we leave for the appointment. Yesterday I shuffled the shifts around. One of the support workers was meant to do 3pm to 9pm on his own. That’s a bloody long time when anything might happen. So, I got the earlier guy to stay on a bit and the night shift worker to come early. I think he thought I was undermining him but I believed I did the right thing.

Here’s another example of the power of his autism. Yesterday, I phoned the dentist to see if we could bring forward the appointment. The receptionist spoke to the dentist, who said bring him straight down. But as I’d already prepared Steven for a Thursday afternoon appointment, he wouldn’t go and it started another meltdown. The need and rigidity of routine trumping the chance to be relieved of pain. Routine is the bedrock of everything.

I spoke briefly to the dentist, partly to fill her in and partly to reassure myself that she wouldn’t reject Steven if he was being difficult. Steven gets quite excited about the dentist because he casts himself as Mr Bean visiting Dr Peggit (played by Richard Wilson with beard). The dentist agreed to play along with this, so hopefully the tension is eased with a Bean framing.

It’s going to be a long day.

Don’t Drink The Mouthwash

Steven has had a toothache since yesterday morning.

That usually means two things. Firstly, lots of stress in getting the dentist to take the matter seriously and acknowledge that dental treatment and Steven is a bit like a white water rapid ride. Secondly, as Steven struggles to deal with pain, it means a sudden surge in challenging behaviour.

I’m exhausted already and there’s still two more days to go before we get to see the dentist.

Mondays are meant to be a quiet day for me. I get two hours in the morning whilst Steven is at the Arts Centre and then from 2pm, I have the rest of the day free as respite. On Tuesdays, I’m free until Steven returns from swimming at midday. Lots of time to get stuff done and chill out.

Yesterday, they arrived at the Arts centre and the support worker reported a meltdown at 8.30 that resulted in a broken fruit bowl, a ripped Mr Bean calendar and pee all over the sofa. So, that was my two hours sorted – off to buy a Tupperware fruit bowl and then home to wash the cushion covers.

I got to the flat just after 2 o’clock and got cracking on the following:

  • Phone the dental surgery and arrange an appointment. The earliest one was this Thursday afternoon. The call took 35 minutes.
  • Phone the council and pay the bill for Steven’s care charges up to date. That took 40 minutes.
  • Phone minibus hire companies and book our vehicle for the holiday in Torquay.
  • Phone around different local cab firms and get quotes with a view of changing Steven’s transport hire. This took an hour and a half of research. But I did eventually get a new firm sorted.

By now, it was 5.30pm and I realised I hadn’t eaten anything bar 2 shortbread biscuits since breakfast. So, I jumped on a bus to Uxbridge, snatched a Burger King and was back home in the hour to write the letter to the new cab firm, detailing our requirements. By 8pm, I couldn’t face anymore paperwork and crashed in front of the TV, watching an old episode of Murder She Wrote. (This is life in the fast lane).

I woke feeling quite frisky this morning, thinking I had a couple of hours to catch up on the things I had to put off yesterday. On my way back home, the support worker phoned. Steven’s toothache was worse and had induced another meltdown. The result being a smashed TV. So, that put the tin hat on today’s plans as I went off to Currys to buy a new TV. The meltdowns have continued on and off all day long.

Funny thing is – Steven isn’t too bothered by the dentist. He frames it in his Mr Bean world, so will talk about “Don’t drink the yellow mouthwash” and “Don’t stick the needle in the dentist’s leg”. Any port in a storm – if it take away some of the anxiety, then thank you Mr Bean.

I’m lucky because I’ll be out of the firing line quite a bit between now and Thursday. I go off to work at 1 o’clock tomorrow and won’t be home until just before Steven sets off for the dentist the day after. The personal budget doesn’t stretch to emergency situations but it doesn’t feel right to leave one support worker on their own with Steven whilst he’s all over the place, so I’ve doubled up the support from the time I leave tomorrow until the appointment. With a new telly to buy, care charges to settle and double the wages, thank goodness for Steven’s damages and the money I got for the HB fiasco.

Anyone want to swop lives for a few days?

With Bells On

Are we becoming more gullible? Or is it just me? I like to think that I’m quite wise to this nonsense but I’m also regularly surprised how the Spinners can present something as being really good for us, whilst shafting us in the process.

Two weeks ago, the cab company that provides Steven’s transport were taken over by a larger outfit. Two days into the takeover, I had to phone them to add another booking and the lady asked me if I was aware of their new “pricing system”. I admitted that I wasn’t. She explained that they were now operating a “peak” and “off peak” service and most of Steven’s outward journeys fall into their “peak” zone. That bit lasted all of a minute. She then spent ten minutes telling me about the great discounts on offer during their off peak times. A bit like George Osborne not explaining where he’s going to find an extra £8m from for the NHS, the woman refused to return to a discussion of the new peak rates – “You’ll see the big savings that can be had from our new discount scheme”.

So, what does this mean in reality? You’re probably ahead of me on this one. Every single fare, both outward and homeward, peak and off peak has increased. And not by a small sum too. For example, the old fare to the Mencap Pool and back was £7.50 each way. Now, because Steven goes at 5.30 pm (which they classify as peak), the outward journey is £12. He returns, during an off peak time but even allowing for their “generous discount”, the new homeward fare is £9.70. That’s a £6.70 increase for a trip that takes 10 minutes! In one fell swoop, the new company’s new pricing policy has added £25.80 per week to Steven’s transport budget.

But hold on a darned second. There’s more to their services than just the ride. We now get an online receipt, emailed within minutes of the journey ending. Up until now, the cab driver has provided a paper receipt as we alight the car. But, oh boy, these new receipts are all singing, all dancing. The detail they contain is extraordinary. You get a map showing the route the driver took. You get the time the car arrived, the time we got into the car and the time the car arrived at its destination. You get the distance of the trip and the length of time it took. It also gives the CO2 emissions (yesterday’s 9 minute return home from the pool had a CO2 rating of 661g). Finally, there are the details of the car – a description of the model, the driver’s badge number and the car registration. Unfortunately, this appeals to the geek in me. I found myself thinking: “1.95 miles in 00.09 minutes. How fascinating. I might bring this up to break the ice in my Schopenhauer encounter group on Tuesday”. See how I get sucked in.

Then this morning, came the latest new whistles and bells feature. Steven’s car to the Arts Centre is booked for 9.30. I leave early on Monday mornings to pick up his cherry bakewells and open up the Arts centre. At 9 o’clock, I’m sitting in the Centre, reading the paper, when I get a text from the cab company. It was informing me that I can “track the progress of the vehicle before it arrives at your pick up point”. I experienced a nano second of excitement before combusting. “It’s half an hour before the car is due. Do I really want to follow the driver’s progress for the next 30 minutes? Am I bothered that he’s on his way to Terminal 5? Is this what they mean by customer participation? Will I form a special bond with the driver knowing how he spent the half an hour before we met? It might give us something to talk about if we get stuck in traffic”. What bollocks.

I’m typing this haphazardly because I have suddenly developed a layer of wool over my eyes. For all the spin about the “improved service”, the “generous discounts”, the “exclusive receipting” and the “pre journey engagement”, the bottom line is that every single fare has increased by 62%.

From Gideon down to a Cowley cab firm, this stuff is endemic now.


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