The Air Conditioning at the Manchester Holiday Inn

Yesterday, the #LBBill roadshow took in two gigs at Manchester Metropolitan University. In the afternoon, Sara, George, Steve and I met the Big Society’s research group. The group were asked to look at each of the Bill’s eight clauses and give their input from their own lived and professional experience. By the end of the afternoon, the walls were awash with post it notes and the energy and commitment was wonderful.

In the evening, we were asked to give a presentation of the Bill to an audience of about 120 as part of the University’s Human Troubles programme. I felt quite overwhelmed by the number of people from Twitter and the #LBBill Facebook group who turned up. Like the afternoon, the event felt very buzzy. There was a lot of constructive input, and without sounding like an old hippy, a lot of love in the air as well.

Next Monday we’re meeting up to discuss all the feedback we’ve received on Draft 1, in preparation for the second draft of the Bill. The ideas from the Facebook group alone already runs to 100 pages of a word document. Goodness only knows, how many more pages will come out of the Manchester Events!

One thing that is always there for me as the #LBBill journey progresses is how much I don’t understand about disability politics. There are hierarchies that I didn’t appreciate. There are groups within groups that I didn’t realise are there. There are fights upon fights that I find bewildering. I can see that the way the Bill has formed and some of the content of the Bill has cheesed some people off. But just as I plunge into a self doubt void, along comes George Julian with a part from her speech last night: “This isn’t just about disability – this isn’t just about parents – this isn’t just about kids – this isn’t just about carers – this is about humans and human rights”. And then I feel it’s all okay again.

I’m knackered. We went out for a meal after the meeting  and it was about 11 o’clock before we got back to the hotel. I couldn’t switch off – a kaleidoscope of images and words from the day started zooming around every time I shut my eyes. Then at half past three this morning, I was awoken by the clunking air conditioning system. It sounded like someone was trying to force the room door open. This soundtrack played out every five minutes until at 5.30, I decided to get up and give up on sleep. When we got down to breakfast, we found that we’d all had the same problem.

It felt quite symbolic. Most of the people at the meeting are caught up in the clunking system in some way and the noise it exudes keeps most of us awake at nights.

We need some fresh air.


Trouble For Humans

On Monday, myself, Sara, Steve and George are off to Manchester University to talk about the #LBBill as part of their “Human Troubles” strand. It’s going to be a good day, talking about what it is like to be human when you’re forced to inhabit Planet Social Care.

Ironically, today I received a letter notifying us of the date of Steven’s next appointment with the psychiatrist. The process around the notification is fascinating. The psychiatrist doesn’t speak to us directly (outside of an appointment, that is). So, this letter had been sent from the psychiatrist’s secretary to Steven’s GP and she forwarded it on to us. I’ve asked before about this palaver and was told that as Steven is an adult, they cannot communicate with me directly. Which is odd, because we have had letters where the psychiatrist has advised a change of medication but if he won’t inform me directly, then the change isn’t going to happen. I’m reliant on the GP having the foresight to forward the letters on to me. The current letter, in the section titled “Care Plan”, recommends some blood tests at the very hospital where the psychiatrist works. But as he didn’t tell me, it’s taken from 5th September 2014 until today (24th January 2015) to know that’s what he wants. Is that crazy or what? Today’s letter also came with the Psychiatrist’s report of the last appointment in September 2014. It is thoroughly depressing reading.

An innocent bystander, in reading the letter, would have no idea that the letter was about a human being at all. It could be about a lab rat. It might even be a case study copied straight from a textbook. There’s a weird paradox – even though every report we receive takes great pains to point out that the psychiatrist can identify no sign of “mental instability or distress” in Steven, the entire report is medical and presented within a mental health frame. Autism is mentioned, bracketed as (F84.0), together with Severe learning disability (F72.1). So, from the very first paragraph, the human being is lost and replaced by a diagnostic reference number from the DSM.

I could go on but it is so dispiriting. By the time we get to the final paragraph, Steven’s name has been lost completely and he has become “the patient”. This is the final paragraph: “The patient was amiable in his presentation, occasionally spontaneous with his speech, exhibited echolalia, appeared euthymic in mood, but he was also emotionally labile”.

Perhaps I’m being unfair. After all, Steven was being seen by a medical professional in a medical setting (why?). But the report says nothing about the man I share my life with seven days a week. If the report hadn’t mentioned “Steven enjoys his pepperoni pizza Fridays”, I wouldn’t have recognised him at all.

In all probability on Monday, we’ll be discussing ATUs. It’s no wonder people are condemned to these places. The system can’t recognise a human being with autism. It is much more comfortable with a medical specimen.

The Viral Diversity Launch

“Good morning ladies and gentlemen. Thank you for inviting me to your magnificent committee room five for the launch of your Viral Diversity Majestum. My name is Samantha Cakehole. Hello. Or you can call me Sam. Or Sammy. Either is splendid. I don’t bite. I am here, speaking to you as CEO of SST – Success Starts Today. We’re a 2015 company, offering 2015 solutions to 2015 challenges. I am delighted that our £5m partnership deal with Newport Pagnellshire Adult Social Care has resulted in today’s launch. I guess it’s quite timely, launching the majestum on this bitterly cold, frosty morning. Why? Because I’m often asked what is Viral Diversity. And I answer that there’s nothing I like more on a winter’s day than a steaming hot bowl of succulent casserole. So, if we break down Viral Diversity as a concept and look at those two words that drive its values and ethos, you will see immediately that I am talking about a modern way casserole for the year 2015 and for many to follow. It is a lifelong meal. It’s not rocket science in an ironic post modernist way. Viral means what it says. It’s Viral. And Diversity means having diversity in its many forms of diversity.

So, what is Viral Diversity? Well, there are five ingredients to its success. Five threads to its innovative and infinite tapestry. And without further ado, let me cover those five jewels in some depth……

The first ingredient we call, The Strategic Spatula. Everything has to be strategic. You cannot succeed in this game without strategies upon strategies. But what good is a casserole without a spatula. Yes. You see. Let your leaders see the spatula and embrace the spatulism. Don’t fear the spatula, as many not so great leaders in history have done. Claim it, in all its strategic glory.

Next, we throw into the pot, Engage Engagedly with Engagement. All you Leader/Chefs out there – you can’t stand and watch your casserole, you must engage with it. Engage with the carrots. And then the carrots will engage with the leeks. And when the brisket is well and truly engaged, we know we’re all singing from the same hymn sheet. Leave no unturned stone disengaged.

I can see that this is all falling into place nicely for you. Good. The third ingredient is Lead, Lead, Lead Those Peas. It’s not enough in 2015, to just Lead the brisket. No. You have to get right into that casserole and Lead the Peas. Those tiny little creatures at the bottom of the pot that it is oh so easy to overlook. They are crying out for your leadership. Respect and Respond to their cry. The awards and public recognition is nice but the petit pois need your attention too.

The pot is bubbling away famously by now. The penultimate thread is Be An Innovative Ian. Ian? I hear you ask. I’m going to be quite humble now and share with you that this was my key contribution to Viral Diversity. It was the summer of 1986 and I was sitting in a bar in Cromer. And who should be sitting at the next table but Ian Ogilvy. His days as The Saint were over but by golly, could that man blue sky. That day changed my life good people of Committee Room Five and I wouldn’t be here with you now if it hadn’t been for that chance encounter with Ian. I was innovated by Ian. Now it’s your turn. Get out there and innovate like Mr Ian Ogilvy.

And finally, there’s only one thing left to do – Empower the Transparent Tureen. See the richness of the process. Smell the juices of your labours. You can’t do that with outdated, outmoded ceramic pots. This is the age of transparency. You can see me. I can see you. Would we want it any other way?

Thank you for listening. Take this away with you and dance and sing the song of Viral Diversity. I did. And I hope you will too.”

Thought Diversity

A week ago today, I wrote a post here – the latest in the series of Committee Room 5 stories. This one featured the efforts of the Rebadging Committee to Rebadge itself.

It was a fiction.

Yesterday, Twitter went into overdrive about a new NHS inniative. This latest one is called “Thought Diversity”. Got that. Thought Diversity. Currently being rolled out to management teams across the country. Millions of pounds spent on the ????? (I don’t know the word for what it is. An innovation? A project? A load of old cobblers?) Probably millions given to the management consultancy company who are “partners” in its inception.

What is Thought Diversity? Your guess is probably as good as mine. What we do know is that it comes with a “shared purpose”. This purpose, mission statement, is one that all employees of the NHS are meant to sign up for. Buy into it. But no mention of how thought diversity will actually benefit the patients, the customers of this service. I’m not sure they’ve even been given a thought.

I could go on for hours but it’s probably best to draw your attention to what five bullet points, the “Shared Purpose” consists of. This is the core of Thought Diversity. These are the five innovations that are going to turn the NHS around:

  • “Transparent Measurement”
  • “System Drivers”
  • “Leadership for Change”
  • “Spread of Innovation”
  • “Engagement to Mobilise”

This is not a fiction.

Thought Diversity

A Hive of Activity in Committee Room Five


The great, the good and the downright outstanding from the Newport Pagnellshire Adult Social Care Blue Sky Viral Quality Deep Diving Concordat were assembled in Committee Room Five for a meeting that would hopefully, change the face of social care, not just in this small shire county but across the country.

The recently promoted Uber CEO, Deidre Trussell, had gathered all 76 trombones executives from the Rebadging Think Tank, which included the 18 members of the social care acronyms sub committee and the 3 members of the PWOTEP (“Pulling the Wool Over the Eyes of the Plebs) Division. Unfortunately, for the 18th meeting in a row, no service users or their family were present and the Head of Viral User Participation (VUP) promised to check with the post room as to why the invites had fallen down the back of the radiator, Again. The room was heaving with anticipation and Madras vol au vents. Deidre pulled up a chair:

“Right. Not to beat about the herbaceous – we’ve been rumbled. Today marks the last ever gathering of the Rebadging Think Tank. By the time we leave here today, we will be bigger, better than ever before. Today is the day we rebadge the rebadging committee. We’ve been phenomenal so far. We’ve managed to rebadge the council’s entire stock of residential care homes into independent support living flats and saved the taxpayers a small fortune. Our big push on Circles of Support has meant that we no longer have to fork out for any paid support – we just get their neighbours or the man from the betting shop to do the support – totally free of charge. And we’ve achieved all this with a straight face and an empathic sincerity that has been a joy to behold. But all good things come to an end and now it’s time to raise the bar. There are all sorts of nuisance groups cropping out – I’ve got one here – It’s called the LBBob I think – who are demanding more transparency and accountability. Thin ice time folks. They’re purloining our language. We don’t want to be hoisted with our own petards – we built a formidable edifice of deceit and language was the building blocks of that structure. Our challenge for this decade is to master the language of integrity and then shaft them with it. Let’s have it then……..Rebadge me like I’ve never been rebadged before….”

“Well. I think whatever we end up with, the word Fairer must be in there somewhere. Its the perfect wrong footer. Induces guilt before they’re even out of the starting blocks”.

” Excellent. It worked brilliantly with the Fairer access to care services assessment and the fairer charging policy”.

“Word on the street has it that Didcot Parkwayshire borough council are utilizing the word Utilization a lot. It implies there is something we do that can be utilised. By the time they’ve looked for that needle in the haystack, we’ll be a dot in the distance”.

” We need a word to describe the care we’re offering. I know we tried compassionate care and that bombed. How about Collaborative Care?”

“Superb. It suggests we’re all in this together. That way we can get the service user’s window cleaner to do three waking nights and trumpet it as the very best in person centered collaborative care”.

” I’ve just come back from mindfulness training and it would be good to get an over the top adjective in there. Say it often enough and you start to believe it. How about Extraordinary”?

“One last suggestion, and I’m going out on a limb here. But why don’t we make up a word? I always felt ‘concordat’ had an imaginary ring to it. We need a word that encapsulates how important we are. I suggest ‘Majestum’.”

The group sat back, dripping with satisfaction. This is why they were worth every last penny of their six figure salaries. In 27 minutes flat, they had successfully rebadged themselves into the Fairer Utilization Collaborative Care Extraordinary Majestum.

Last word to DeidreTrussell:

“An excellent morning’s work folks. Just remember, we entered this room today as members of the Rebadging Concordat. We leave, as FUCCEMs”.

The Buffer Mystery Solved

A couple of months ago I wrote that I’d been “buffered”. I had no idea that this had happened or what it meant. Two months on, I’ve solved the mystery.

In December, my LA changed the provider for their personal budget prepaid card system. The service users were promised that the new system would be a more efficient, user friendly system. This happened at the same time that my request for additional respite had only been half agreed by panel and I was told by the support planner that the revised personal budget plus the arrears from November would be included in the first payment to be loaded onto the prepaid card on 15th December.

The first payment was credited to the card but it bore no resemblance to any of the previous payments, nor the amount I was expecting to include the new respite allocation. The LA don’t issue a notification, so you are not informed how the amount has been calculated. I meant to check it at the time but got distracted because I found it impossible to do an online transfer from the card and I had the small matter of the support workers’ wages to sort out. I ended up doing a telephone transfer.

The second payment is due today. Yesterday, I thought I’d better check what the payment will be. A lovely woman in the direct payments team explained all.

The LA’s policy is that for the first two months of receiving a personal budget, you get paid a slightly higher amount than your normal four week allocation. This adjusted amount is the ” buffer”. The rationale is that we might need a buffer whilst we get used to the new budget/card system. Fair enough. The following 10 payments are at a lesser amount than your four weekly allocation because you’ve already had the money in the first two months. The woman confirmed that the December payment on the card included the new respite allocation but was less than normal because I’d already had a buffer. It will all sort itself out by the start of the new financial year. Fingers crossed.

Whilst I was on the phone I asked her what happened to the money that was on the old card when the council changed provider company. She sighed deeply. It turns out the old and new systems can’t talk to each other and so she is having to make all the payments manually. A month after the changeover, she is still hard at it, trying to get old balances onto new cards (Steven’s hasn’t been done yet).

So much for buffers. You have had a buffer but you can’t access it because it is stuck in a void between the old card and the new card. And as ongoing payments are less than your normal monthly budget, you are chasing your tail all the time. In theory I’ve had my new respite allowance but I haven’t because the money is trapped in the void. I’d been wondering why I ran out of money last night!

I’m not knocking the front line staff. I felt sorry for the woman yesterday. She sounded weary and embarrassed. The issue is higher up. Someone made a decision that the only way the LA were going to pay their Personal Budgets was via a prepaid card system. No choice for the service user – its a card or nothing. Unlike the old direct payment system where you could have the money paid directly into your bank account, we now only have one option. For me, the old system worked much better – it was more efficient, more flexible and the service user had more control. All those advantages are now a thing of the past. Then, having decided to have just one payment option, the commissioners then went for the cheapest provider they could find. No matter that it significantly increases the workload of the carer and creates unnecessary work for their own staff (which is what I thought outsourcing was meant to avoid).

It’s a mess. But at least I know now what buffering is all about.

Update 9th January 6.11pm

Seething! The money for this month was due to go on the prepaid card this afternoon. I just phoned the card company to do a transfer and the money isn’t there. Call back tomorrow or Monday.

Forget buffers. Forget balances from the old card. Forget backdated respite allowances. The money due today was the basics of the personal budget – money to pay the support workers’ wages. And bear in mind that under their 1970s BACs system it takes 5 days for the money to go from the card to the recipient, I’m in the shit when it comes to paying the workers on Thursday. I know what will happen. I’ll have to pay the staff next week out of my money and then transfer the money from the card into my account. Within 24 hours the direct payments manager will phone me. As her job is to scrutinize service users prepaid card activity from her computer screen, she’ll give me a bollocking for paying funds into my personal account.

Incompetent shits.

The Similarities Between Steven Neary & Peter Ustinov

I remember watching Peter Ustinov being interviewed by Parkinson many years ago. They were discussing dinner parties and those people who pin you to the wall to get you to agree with their opinion. Ustinov claimed to have found the perfect response/exit line. You wait until the person leans back, confident they have delivered their killer shot and say:

“Ah yes. Very good point. But not in the South”.

They will be so bemused by this, you can slip away whilst they are still working out whether they heard correctly.

Steven has a similar approach to a debate. Just when you think you have all bases covered, he will deliver a perfect Ustinov googly.

This morning, Steven was having a music session with Chris, his support worker. The track “My Camera Never Lies” came on.

Chris: “Steve – do you think that Bucks Fizz are a bit like Abba?”

Steven: “No. Chris is talking like a silly man. Bucks Fizz is not like Abba. No beards in Bucks Fizz”.

Chris, knowing that Steven likes lookalikes/sound-alikes decides to pursue the theme:

Chris: “So, are Boney M a bit like Abba?”

That was just met with total derision.

Steven: “TUT. Boney M is not like Abba. Boney M sounds a bit like Ottawon”.

I decide to chip in with perhaps Steps are a bit like Abba. Steven concedes that the video to Last Thing On My Mind is a bit Abbaesque but dismisses my reasoning because there are “three ladies in Steps”.

Chris throws in another couple of suggestions but they are given short shrift. Eventually, he tries to return serve:

Chris: “So, who is a bit like Abba then Steve?”

Steven: “Ace of Base is a bit like Abba”

Fair play to Chris – he has seen the All That She Wants video and thinks he is on a winner:

Chris: “But the men in Ace of Base haven’t got beards Steve?”

Steven, with the withering look of a man who can’t quite believe someone would put forward such a facile argument, pulls out his trump:

Steven: “Ace of Base is a bit like Abba because Ace of Base live near the archipelago. Like Bjorn Uvelus writing Fernando”.

Chris knows he is beaten and sidles off to the kitchen for a restorative biscuit. He knows he has been Ustinoved.

Steven is never smug in his victories. By now, the CD has moved on to “It Ain’t What You Do It’s The Way That You Do It”. And Alan, the second support worker for swimming,  has walked through the door.

Steven: “Chris – Siobhan looks like Auntie Jayne with her blue shirt and purple leggings on. And Neville looks a bit like you Alan”.

Chris takes refuge in the saucepan cupboard.