The Czar of Committee Room Five

As a new year dawns, the movers and shakers of Newport Pagnellshire Social Care Majestum are girding their loins for the challenges of 2016. Let’s make no bones about it – the social care landscape will look very different and who better to shape that landscape than our very own Deidre Trussell.

Riding on the back of her HSJ Inspirational CEO of 2015 award, Deidre has been awarded a Damehood in the New Years Honours list for services to Exnovating.

And now, following the Mazars report into the uninvestigated deaths of people with learning disabilities, the Minister has appointed Dame Deidre as the Czar of sorting this blemish out.

As Dame Deidre has pointed out, one thing that the commentators on the Mazars report have missed has been how successful all these untimely deaths have been in dealing with the social care funding crisis. That success has informed Czar Dame Deidre’s Vanguard team to prepare its initial consultation paper: “Care or Death – a financial feasibility study”. The potential and the efficiency savings of a recalibration of ” Expected, Natural Causes Death” is an area that offers fertile answers to increasingly tough financial challenges. We certainly don’t tolerate eugenics in this Majestum but let’s face it, facilitating deaths is a Darned sight cheaper than any poncy personalisation ideology. The DofHealth & NHS England have charged Dame Deidre with exploring this exciting potential and are reassured that our patients are in safe hands with Dame Deidre helming this ship.

It’s always good to have a Plan B, and inspired by her success in relocating Newport Pagnellshire’s entire stock of learning disabled people to Gravesend (New South Wales), Dame Deidre will be looking into rolling out a similar Nationwide scheme of Person Centred ATU expansion in Rankous. Syria. The sky’s the limit.

Either way, whether we go for Plan A (Death) or Plan B (Syria), the Majestum is confident of achieving the Government’s target of a zero spend social care expenditure by 2017. There is absolutely no reason why there should be a single person with a learning disability left in this country in twelve months time.

Thank you Mazars for showing the way.


It Doesn’t Float My Boat

My apologies. But I’m back onto the extraordinary actions of Southern Health NHS Foundation Trust again and what I suspect is my fruitless attempt to make some kind of sense of their relentless pursuit of behaving like complete tossers.

Let’s remember that for a few days before Christmas, they appeared on all the main news broadcasts and in the national press over the Mazars report into the appalling number of univestigated deaths of people with learning disabilities in their “care”. What should one expect under those circumstances? Well, for starters, I’d expect someone from somewhere to step in and do a cull of all the chief tossers who allowed such dreadful practice to happen on their watch. Then, perhaps, they would lie low and make sure that everything possible was being done to prevent such a scandal ever occurring again. With candour. With integrity.

Nope. Not on your Nelly. First off, they call an extraordinary board meeting. Here are the details:

An hour devoted to such a crucial issue seems a bit underwhelming to me. Even if, as we know by now, the patients don’t even register to Sloven, you’d think their obsession with reputation might have warranted a little more than an hour. The venue is key too. The Justice Shed did some digging and the venue only holds up to 16 people. Not much opportunity for “opening our doors to transparency” here. Perhaps it could be relayed over a tannoy to the crowds outside? And the start time? 8.30 in the morning? Who holds meetings of this importance at that time of the day? I know, Bubb does but come on, really. the way the whole meeting is presented shows that the usual spin is in full pelt and is attempting to turn a national scandal into a small hiccup.

You’d think that was enough wouldn’t you. Enough to swallow if you are trying to get to the bottom of why all these people have needlessly died. But no. The next day, your latest million pound consultancy project spews out it’s new viral quality innovation. Have a bucket handy and click on this link:

With all the appearance of a primary school project, Sloven decide that their “Plan” is best represented by a flotilla of boats! HMS Quality, Money & Access lead the flotilla, followed by two transformation boats. Bringing up the rear (literally) are the three enabler boats. It doesn’t make any sense at all. It offends. It enrages. It might win an award.

I’m really struggling to get my head round the current NHS presentation. An enormous amount of money went into publicising their single and the push for it to be the Christmas Number One. I can’t stop my unease that the NHS was being presented like a charity. It worked. The first time for years, the winner of the X Factor wasn’t top of the Christmas pops. Then we’ve got the big Change Agents, “Change is Changing” stuff. Writing on underpants. Rocking the boat but staying inside it (Boats again). Collecting the apples as they fall from the cart. What the bloody hell is going on?

The soul dies to distract from hundreds of learning disabled people dying.

I’d love to put all this in the hands of Dennis Potter. I know I’ve used the analogy before but it puts me in mind of his play Blue Remembered Hills and the casting of grown up actors to play young kids with dreadful consequences. Southern Health is like the other way round. They all are. It’s like appointing Class 2B to run the country. And we swallow it.

I have no idea.

Nothing But Repeats

I can say this out loud now that the big day is over but I think we’re reaching a new phase of maturity. I’m not talking about the world at large – I’m talking about us here in the Cowley house.

Whenever I’m invited to events to tell the Get Steven Home story, I often include in the build up to Steven going away that he gets very unsettled by all the changes to routine over Christmas. I think I’m going to have to start using the past tense. The anxiety isn’t there anymore, or if it is, he knows how to handle it.I guess by the time you reach 25, you understand the rhythm of Christmas Day.

Laying in bed last night after a full on but calm day, I realised that Steven has set up Christmas Day so there is nothing new, nothing unexpected happening. The whole day is one long repeat.

A support worker stayed overnight on Christmas Eve and Steven had us both up at 5 o’clock yesterday morning. Usual Friday breakfast. Usual Friday press ups. On to opening the presents and Steven smiles through the familiarity of that – two calendars (one for the living room, one for the landing). Two selection boxes. A box of biscuits from Trevor, his friend from the water aerobics group (“Just the biscuits please Polly”).

The morning is spent going through the new DVDs and CDs. First cab off the rank, obviously, is the new Mr Bean DVD. A new DVD but nothing new about the familiar sketches that we’ve watched thousands of times before. Just a new compilation. Then a new DVD of Men Behaving Badly’s Greatest Hits. Five episodes that Steven can reel off in his sleep. As I cooked the lunch, Steven and Alan had an energetic disco to his new 3 set CD – Now That’s What I Call The Nineties. Lou Bega, Haddaway, Take That & Lulu Orange. My meal preparation constantly interrupted by a running commentary – “Dad, it was The Spice Girls first song. Nice to meet you Emma Bunton”.

Lunch is a replay of every previous Christmas lunch. Steven won’t eat a sprout on the other 364 days of the year but for one day only it is permissible. It’s the only day of the year he will tolerate other people sitting with him at the dining table. We don’t wear hats though. Hats are for outside when it’s raining.

The rest of the day followed in familiar, predictable fashion. More4 repeated their Greatest Musicals of all Time, which we recorded on VHS tape when it was first shown years ago. We did a compilation cassette with songs from Steven’s new CDs. Our evening viewing was BBC3’s Toy Story. Again.

Is it boring? Not at all. It is reassuringly comforting. And the relief of a day without a meltdown is worth watching Woody and Buzz falling with style for the 264th time.

We keep up the traditions today. We’re off shortly to Hampton open air swimming pool. We do like to be invigorated on Boxing Day.

At the ATU, Steven’s routines were seen as problematic. I remember Whistler’s Mother telling me they ” hold him back”. I think Whistler’s Mother was doing silly talking. They are the bedrock from which growth happens.

I’ll get my trunks.


Five Years

It was five years ago today that we were in the Court of Protection for the first hearing and the judge decided that Steven could come home after his year in the ATU. It feels a very long time ago. It feels like yesterday.

I hadn’t really given the anniversary much thought today. On Tuesdays I get an hour before the support worker clocks off, so I’ve just been to the pub for a pint and a packet of marmite crisps (I’ve inherited Steven’s thing about naming the crisps that I consume). Lending a melancholy air to the proceedings, someone had put Cilla Black’s greatest hits on the jukebox. It was during You’re My World that the memories started. There isn’t a coherency about my memories of that day. It’s rather like a kid’s kaleidoscope, where one twist and the whole picture changes. My emotional state was like that too. Through the tears I felt a mixture of relief, anger at some of the horror pictures that presented themselves and a guilt that at least Steven is now at home, whereas lots of his peers aren’t.

What appeared in the kaleidoscope?

I remember the early morning phone call from our solicitor to say he had been snowed in and couldn’t make the journey. I remember the stale pain au chocolat from the shop opposite the Royal Courts of Justice. I remember spilling some coffee on my new tie. I remember hardly anything of my twenty minutes in the witness box. I do remember the Hillingdon barrister grandstanding and pushing me to admit that I am “intimidated” by Steven. I remember the Judge describing my testimony as “genuine and moving”. I remember Amanda’s pupil searching for a box of tissues as the Judge delivered his verdict. I remember having to sit with two of the Hillingdon witnesses as we discussed the support plan for the return home. I remember texting everyone I knew on the Tube coming home. I remember doing a shopping list when the train got stuck at Bakers Street (I hadn’t dared to buy any food for Christmas in case I’d be spending the day travelling to a hospital in Wales). I remember Steven coming for a home visit and breaking the news to him. I remember the big man hug from the support worker who had stuck by Steven for the whole year. I remember being up until 2am the next morning, getting choked up by the messages on the Get Steven Home facebook group. I remember going onto the Premier man website and ordering Steven a whole new wardrobe as all of his clothes had been ruined. I don’t remember sleeping.

I’m not sure what Steven remembers about that time. He very rarely talks about it anymore. Knowing that he has perfect recall of the sweets he was eating on the train one Tuesday morning in 1997, I suspect his hard drive must be loaded with memories from 2010. But I’d never try and force him to reveal them. When they do occasionally pop out, they are sad and confused. Steven has always struggled with the word “why” and for once, I’m quite glad. Five years on, I still couldn’t give him a satisfactory answer to the “why” of 2010.

I wonder whether it will still feel the same in ten years time.


Boom. Fizz. Pffft. Nothing.

I don’t get it.

Who takes the univestigated, unexpected deaths of 1000+ learning disabled people seriously? This week, the Mazars report into the deaths in Southern Health “care” was finally published. On Thursday, there was an explosion of media activity. By Friday, the world had moved on to badger culling.

Everything about the response of officialdom has suggested a commitment to burying it. The report was published at 2pm on Thursday, just as Parliament was closing for Christmas. Jeremy Hunt posted a youtube clip, giving his response. He’s not been heard of or from since. And his response? More inquiries and get the CQC to broaden their inspection range. Weak, weak, weak.

NHS England (who commissioned the report) issued a statement, that three days on, I’ve forgotten all about. Whatever it said, it had all the power of a rose scented fart.

Mencap called for….. I dunno really. The sort of thing that Mencap normally calls for.

Monitor? The GMC? Schtum.

In the meantime, Southern Health carry on being Southern Health in their own inimitable way. Katrina Pearcey gave a series of car crash interviews, spouting offensive nonsense whilst ignoring the pleas for her resignation:

Then yesterday, the son of one of the Southern Health board members decided to attack Sara Ryan on Twitter:


The Easy Read version of the Mazars report is so far removed from the actual content of the original, that I’d go as far as say that it lies to the readers.

Such a contrast to the beautiful demonstration outside Oxford County hall on Friday with a display of gingerbread men to represent each of the unexpected deaths:

Gingerbread men

Nothing happens. Nothing changes. More people die.

I don’t understand the politics around accountability. Who steps in? Who makes the board accountable? Who can remove KP from her post? Who takes responsibility so people don’t continue to die and have their deaths (and lives) brushed away? What happened to honour?

The words and actions of Southern Health are galaxies apart. Surely, nobody can take their written policies, their action plans, seriously ever again. Surely, like the journalist from ITV Meridian, you have to question their endless “lessons have been learned” spin? Nobody really believes that they put their service users at the heart of everything they do. The reality is the opposite. To paraphrase Master Berryman – the service users are seen as fucking pests. Nuisances amongst the awards and the viral quality.

My apologies for the confused, rambling nature of this post. That’s because I’m confused.

I’ll end on a personal story of my stab at honour. I worked for a counselling agency for 14 years. For thirteen years, it went fine but then the management started to get uneasy about me appearing in the press and on the TV (This was at the time of Steven’s court case). They felt I had compromised my detachment. Then, I made a mistake. I answered a direct question from a client, disclosing something personal. The client then brought up what I told him in an argument with his wife and she complained to the agency. I had lost the confidence of the management and it felt the right thing to do was to resign.



Ceasing To Be

Urgent statement from Northern Health Parrot Trust.

You may have seen various scaremongering reports in the media about the demises of several parrots who used our services.

This disputed report (by nobody but ourselves and other people with their finger in the parrot pie) was written by a Gnu consultancy agency, The Tazars.

Whilst we are open to the contents of this report, we have to put on record that we believe the report to be utter rubbish. The methodology is flawed and the numbers are grossly exaggerated. For example, the Tazars report that over 1000 parrots have fallen off the Perch. Our totally independent research (carried out by my brother in law) reveal the true figure to be much much lower. Although we are still working on our algorithms, we calculate the figure of parrots who have ceased to be as significantly lower. It’s 998.

We also categorically refute the premise of the allegations that these parrot demises were unexpected. Some may have been unexpectedly resting but that is an entirely different matter. The problem with the sensationalistic reporting is that these media Johnnies don’t know the difference between “an unexpected demise” and “a demise that is not expected”. It’s these matters of fine detail that could cost the trust several award nominations.

It is also claimed in this scurrilous report that in the case of 60% of the parrots now pushing up the daisies, we did not involve their families in the investigations that did not happen. That is an outrageous allegation. We always apologise to the families if there is a camera rolling nearby.

We are committed to learning lessons from this overblown report. Unfortunately, in our business, from time to time, our plumed service users expire and go to meet their makers. Buggar all we can do about that. And after all, they’re only parrots.

Just one last thing and then I can get back to the important work of a CEO. This may put the mockers on our co-production partnerships with our partner services but we believe it is relevant to point out that they are all just as culpable. For something that has been grossly overblown. They’ve all got shit on their shoes even though there is no shit around. We are partners in apportioning blame and liability, although all our awards are for our endeavors, and our’s alone.

Now can we all move along please before I run down the curtain and join the bleeding choir invisible. I’m far too important to the world for that to happen.

Northern Health Parrot Trust – Putting Parrots First. No squawk Unheard. No Polly Ignored.

David, Goliath & Katrina

Phew. I’m just coming up for air after a remarkable two days. In case you’ve been absorbed in recataloguing your pinny drawer for 48 hours, a quick recap. On Wednesday, a cheeky monkey leaked the Mazars report on deaths in Southern Health services to the BBC. Lit the blue touch paper and…..Boom! Incredible media coverage. Trending on Twitter. An urgent question tabled to Jeremy Hunt in the House of Commons.

And quite rightly too. Over 1000 unexpected deaths not investigated. Only 1% of learning disability deaths investigated. No human rights in life. Even less human rights in Death. The phrase is often used carelessly but it really is a national scandal. I found myself in that familiar space of swinging between murderous rage and unbearable sobbing.

One thing that has fascinated me since the news broke has been peoples’ positioning. This post is me trying to make some sort of sense of it all.

The Southern Health position should come as no surprise at all. Weasly, throwaway statements about how services have improved, how lessons have been learned. But once the incongruous cliches are out of the way, they moved quickly on to their usual reputational agenda and steadfastly stuck to disagreeing with the report. With idiotic sleight of hand, we found ourselves talking about the report’s methodology, conveniently avoiding the 1000+ deaths. Thankfully, the media and the politicians (in the main) weren’t suckered.

This morning, Katrina Pearcey was interviewed and kept up the position. No, she won’t be resigning. She has her hard working doctors and nurses to lead. She apologized to people “who may feel let down”. Not, people who we let down. People who feel let down. Nothing to really do with us. Nothing to do with 1000+ deaths.

The HSJ wrote an interesting article, aligning themselves with the Southern Health cautionary position. Nobody should be leaping to any conclusions. It’s an unfinished draft (Its not. It’s been finished for months). Giving considerable space to the ” expert” that Southern Health have commissioned to review the review. Little empathy shown to the 1000+ families dealing with this bombshell. I couldn’t understand this positioning. Surely it’s not tied up with HSJ giving KP their CEO of the year award a couple of years back. They were handing out their gong smack bang in the middle of the period the Mazars report covered.

Yesterday I was invited to an event at the House of Lords to celebrate International Human Rights Day. I was booked to talk for 15 minutes about the Get Steven Home story. Travelling on the tube, I wanted to mark the breaking news in some way. Partly it was because it is such an obvious human rights story. Partly it was to honour Sara, Rich and Connor. Still undecided, I turned into the main building and bumped into the Labour MP who had tabled the urgent question, two hours earlier. That felt like some sort of sign, so I changed my script. It got a good response.

As I was leaving, a chap who’d been in the audience caught up with me on the stairs. He congratulated me on my “bravery” over Steven’s story but then said: “I hope you don’t mind me saying but do you think you were rather previous mentioning the disputed report?” “Previous?”I replied. ” Yes. We only have a small portion of the truth. I think we need the official picture and not just an outraged group”. I was gobsmacked. We continued our exit in silence and then went our separate ways. I don’t know who he was but he was obviously establishment. He wasn’t outraged about the 1000+ deaths. He was outraged at the affrontery of the leak. He was outraged because I hadn’t played cricket.

One of the other speakers was a home affairs correspondent from Channel 4 News. He wasn’t talking about the Mazars report but he said some interesting things that I think apply here. He talked about how the public love  a David & Goliath story but it has to be presented in exactly the right way. The public are intolerant of David’s turning into Goliaths. The establishment have a huge investment in David’s remaining David’s. But the David profile is pretty limiting so it requires a skilled tightrope walk to navigate it. And we have to remember that lots of people are welded to the David position pre-slaying and don’t want an active David to reveal this. It’s a minefield. But I believe that all this has been going on over the last two days. The third speaker was Imran Khan, the barrister who represented Stephen Lawrence’s family. He said that the world can cope with the Lawrence’s as “brave victims” but step outside that profile and the world becomes tense. That made a lot of sense to me and mirrored what I’d been experiencing the last two days.

My apologies if you feel this post has been too long. Nothing to do with me or my blog writing methodology. I could have posted the abridged version, calling on the expertise of Private Jones:

“They don’t like it up ’em”.