Deputy Dogged

A while back I wrote a post about my musings (spitting vitriol) on the way most official letters these days seem to carry really disproportionate threats in them. Today, I got one such letter from a totally unexpected source.

Since becoming Steven’s deputy (“You’re like Woody in Toy Story 2 Dad”), I’ve always had a great relationship with the Office of The Public Guardian. I’m slightly resentful that Steven, or me, have to pay £350 a year for the privilege of being a deputy but besides that, they have been very helpful and supportive.

There was a bit of a hiccup over my report for the last financial year. Basically, I made a right pigs ear of the report and had to do it all over again. I sent the revised report off three weeks ago, together with the relevant bank statements. They were returned a few days later with a compliments slip.

Today’s letter informed me that they still haven’t received my report or the extra information. The letter became quite hectoring telling me that if I didn’t supply the information:

“we may have to:

1. Change your supervision level

2. ask the court to increase your security bond payment.

3. if necessary ask the court to discharge you as deputy and appoint a new one”.

Now I don’t know about you but I find that rather threatening. So, I phoned them up and after a lot of deliberation, they confirmed that they had received all the information they need and that the hold up was caused by a backlog in their processes. Furthermore, they admitted that their old computer system (“We are updating it by the end of the year”) automatically generates one of these letters every couple of weeks until the report is dealt with. They mentioned quite casually that I might expect a few more of these letters before the report is finalised because the computer will spew them out until it’s told otherwise.

Being a deputy and coming under the constant scrutiny of the court is scary enough. I faff around every time I buy something for Steven, trying to second guess whether the OPG will find the expenditure acceptable. Getting these standard letters taps straight into my paranoia.

It’s not nice.


The Things They Don’t Tell You

I discovered this morning that I’ve got another (Bullet point 323?) piece of information to add to my ever growing list of “things they don’t tell you before setting you up with a personal budget.

I wrote a while ago that I was astonished when I received the 4 page “everything you need to know about managing your prepaid card” booklet, to find most of it was about all the things you couldn’t do with your prepaid card and the penalties and punishments for abusing the card. The one thing the booklet didn’t tell you how to do was how to make an online payment using the prepaid card – the one thing that every cardholder wants to know because the way the personal budgets are calculated around my way is the only thing you can use them for is to pay staff. The prepaid card company’s transaction screen on their website is far from straight forward and I defy anyone to get a payment correct first time without having to phone the company first.

Anyway, on to today’s discovery. I’ve got a problem with one of the support workers at the moment and want to change the shift rota around to accommodate him. I’ve spent days trying to sort it out so that I achieve the number one aim of keeping Steven safe but also, trying not to let the staff lose out by less hours and less money. That has proved impossible and I’ve been left with two people where I want to reduce one of their nightshifts from every other Friday to every third Friday. One of them is okay about this – the other one isn’t. I thought I’d better check where I stand on this, so for the first time since getting a personal budget, I phoned the local disability charity. This is the organisation, the council now signposts all the service users to for “support” with their personal budget. The LA don’t actually provide any support around their own scheme anymore. Hopeless. The chap said that it wasn’t their role to offer this kind of advice and in any event, he didn’t know the answer anyway. He offered me the phone number of a local law centre and advised me to contact them for employment law advice.

So I did. And talked (or rather listened) to a lovely woman who gave me advice on the procedures for verbal/written warnings, changes to contracts, the rights of the workers when their terms of employment change and how to make a toad in the hole without a sausage base. I took about a third of it in.

If I press on with what I think is in Steven’s best interests, could I find myself before an industrial tribunal? No idea. Possibly. Probably not. It’s concerning nonetheless.

I don’t want this post to trigger lots of well meaning advice on employment law. That’s not the point. The point is the mis-selling of personal budgets. Nobody in their right mind would take on such an onerous task if they knew everything that was expected of them.

Unfortunately, an alternative doesn’t exist anymore.

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.