State sanctioned cruelty

Posted on July 8, 2016 by sarasiobhan

Rich and I were back on the bus to London at lunchtime to meet with Norman Lamb and the Health and Safety Executive (HSE). Brilliant sunshine on the walk from Victoria to Westminster. People going about their daily biz. Three years and three days after LB died a preventable death in the care of Sloven Health. 266 days after a jury determined LB died through neglect. And still no accountability.

The meeting, at Portcullis House, largely involved discussion around the length of time the HSE investigation has taken so far as detail couldn’t be discussed.

Our love for Norman Lamb has been a constant since the curry night when we first met him. He was instrumental in getting the HSE to investigate LB’s death. Writing to the CEO after the HSE originally decided not to investigate. I’ve not seen him in action up close before today. He was deeply impressive, carefully questioning the HSE trio throughout the meeting. Sense, clarity, knowledge and sensitivity. Pinning down timings, process and progress.

Why did the HSE decide not to investigate originally?

I assumed when I was informed there would be an investigation it would happen straightaway.

Why is it taking so long?

Why did you not work in tandem with the police?

This is not being given the seriousness it deserves. I can only conclude it’s an indication of how learning disabled people are seen as less than human…

It amounts to cruelty to take this long. It isn’t complicated what happened.

I don’t understand why it is taking so long.

Where does the failure lie?

There were mixed answers, some contradiction and non answers. The back story is that the HSE originally decided not to investigate because they decided (no idea why) that LB died as an outcome of a clinical decision. [Howl]. After Norman Lamb’s intervention five HSE people reviewed the decision and, with particular focus on the Verita report, decided to investigate. Apparently there was some blurring over investigative responsibility while the police were still involved and the HSE took primacy for the investigation after LB’s inquest in October 2015.

The HSE inspector finished her report in February and it then got stuck in some interminably slow process of internal checking for around five months until this week. It’s now been sent to legal advisors and next steps are expected to be announced at the end of October…

It’s taking so long because these things can do, it depends on the complexity of the particular case, because there was a lack of clarity over responsibility. It most definitely is not related to LB being learning disabled or (slightly less emphatically) because an NHS Foundation Trust is involved.

On the bus home, I had a look through recent HSE press releases. Three bath related investigations since December 2015.

Joseph Hobbin died in June 2013. Ark Housing Association pleaded guilty and were fined £75,000. [December 2015]

A patient died in April 2008. NHS Kent and Medway Social Care NHS Partnership Trust pleaded guilty and were fined £107,000 plus £25,000 costs. [January 2016]

A patient died in August 2011. The European Healthcare Group pleaded guilty and were fined £100,000 plus £50,000 costs. [June 2016].

Blimey. Should never have happened. Well documented risks. Legal duties…

Same old same old. An alternative re-run of Sloven related inquests over the past five years. Lesley Steven, Medical Director, popping up to say lessons learned/changes made and the CEO in hiding. A grotesque and macabre dance around death. Dripping in (meaningless) and lengthy bureaucratic processes. A fine and a non rap over the knuckles. Disconnecting and siloing. No linking between instances of shit care. To enable the wheels to keep turning.

Meanwhile families continue to be brutalised.

We know LB should never have died. We knew before we walked out of the John Radcliffe A&E into blistering sunshine that July morning. He was completely failed by the state who had a duty to care for him. Since then, evidence of Sloven failings have been unprecedented. Both in volume and the extent to which they have led to no action.

Norman was spot on when he said this is a form of cruelty. State sanctioned cruelty. With no end in sight.

4.7.16

Posted on July 5, 2016 by sarasiobhan

Approaching the third anniversary of LB’s death…

Death anniversaries involve different layers of sadness to the everyday living with unexpected bereavement. More frequent gut punching, breath stealing moments. Additional anxiety and irrational irritation/rage. Intense sadness. A constant thinking back (to three years ago). An almost compulsive recounting and counting down of last times:

Seeing, hanging out with, talking with, going to [London, the Aziz for Sunday buffet lunch, the farm, Trax…], photographing…

Trying to quash the horror of those last few months.

It’s odd how this date is so important. More significant than the day LB was born. More important than Christmas, Easter, birthdays, holidays. And the days in between…

I’m beginning to think 4.7.13 dominates on the date stakes because it holds a key thread. Between life and death. Between what was and what is. At 10.18am on that boiling hot July day LB’s life officially ended. Our lives changed irrevocably. I (still) find it impossible to make sense of this. Up to that moment LB was. We were what we were. A few words, spoken by a kind A&E consultant, and we were no longer.

The lives of family, friends, colleagues, acquaintances and layers of people we didn’t know changed in different ways and intensities.

Maybe we just don’t know what to do with this thread.

I dunno.

4.7.16

Nearly 9pm. Feeling dog tired. Relieved the day is nearly over. Good to hang out with family and friends over the last few days. Too much food, drink. Late nights. Tears, music and laughter.

We waited at the bus stop earlier this afternoon. To catch the 700 to the cemetery.

Close to where I took this pic of LB on the way to his interview at Helen House in February 2013. When life had a different shape, colour and texture. And a sort of assumed certainty it turned out not to have.

The challenge (still) is trying to work out what life after LB’s death is and what it means.

With the constant and unrelenting shit storm of Sloven related crap this is almost impossible.

Final thoughts:

Thank you for the messages, tweets, thoughts, best wishes and love today. These are remarkably comforting.

Please read Chris Hatton’s reflections about Tim Smart’s judgement. [With a colourful and insightful illustration from Ben Hatton…]

A powerful piece here by Rachel Hepworth for ITV Meridian in memory of LB. A refreshing focus on My Life My Choice champs who cut through the crap. As always.

I’d forgotten LB asking why a friend from Springfield, Illinois, wasn’t yellow back in the day.

I miss him.

Tears, rage, disbelief, frustration and utter bafflement

Posted on July 2, 2016 by sarasiobhan

Tim Smart made his judgement about the Sloven board on Thursday morning:

Graham Shaw managed to summarise this statement in less than 140 characters shortly after it was published.

Needless to say there have been tears, rage, disbelief, frustration and utter bafflement in the Justice shed. Richard West produced a powerful statement on behalf of families and patients (drafted in the early hours of Thursday after we’d pretty much worked out that KP was not going) summarising key failings and articulating our collective incredulity. [The decision to transfer Oxfordshire provision to Oxford Health was made months ago…]

In a (farcical?) twist, Smart arranged to meet some families with Alistair Burt just before his statement was published on Thursday. Their response (with evidence of contemptuous Sloven behaviour) surprised him and he said he needed to think further/hear more. This explains Alistair Burt’s statement on local news that the issue of Sloven governance wasn’t concluded.

I’ve got a lot of time for Alistair Burt (and never thought I’d say that about a Tory MP). Here he is, a few weeks ago, at the extraordinary Sloven debate at Westminster House:

On Wednesday, the day before Smart’s announcement, the inquest into the death of another young woman in Sloven’s care was held. The coroner reinforced Alistair Burt’s concerns as lack of communication, ignored care plans and records changed retrospectively were revealed. Again. Lesley Stevens, in her full time role of attending inquests and producing worn out platitudes dropped the ‘lessons learned’ crap this time. That ship has well and truly sailed. Sadly, and incomprehensibly, the Sloven CEO was not on it.

It’s worth revisiting Alistair Burt’s words about Tim Smart and NHS Improvement from the Westminster Hall debate here:

I think many of us disagree that ‘the right person is (was?) in place’. Smart, for whatever reasons, failed inexorably to cut effectively through Sloven murkiness. Despite the clear evidence trail laid out for him online. An example of the dangers of crusty (and arrogant?) senior bods dismissing social media without having more tech savvy colleagues provide them with a summary of what has gone before. Or perhaps Smart knew and chose to ignore this beyond damning evidence. After all, he pulled me up on the language I use on this blog when I met him.

I can tell you, Mr Burt, (and I know you heard this in the meeting on Thursday morning) the (non) actions taken by Tim Smart have not gained the confidence of people. Quite the opposite. And there seems to be little quality in the actions he’s taken. We’re left asking how and why the person ‘leading’ an organisation that cannot keep certain patients safe (while her focus has apparently been overly focused on operations) remains in post? Despite demonstrating no understanding of patient care, humanity and appallingly little competence stretching back over four years (and possibly longer).

I could pepper this post with swears. My brain has swears careening around it at the speed of sound. Rich and I have become even more randomly sweary since Thursday morning. If that’s possible. But I won’t. Instead I’ll leave you with a photo of a Playmobile figure I dug up in the garden earlier. LB died three years ago on Monday.

The judgement

Posted on June 30, 2016 by sarasiobhan

Tim Smart makes public his judgement today. Smart was sent in by NHS Improvement, on the back of the findings of the Mazars review, of failing CQC inspections stacking up since 2013. Of clear warnings about safety issues flagged up as far back as 2011. Sent in on the back of (and only because of) the actions of people who have campaigned relentlessly, stepped up and refused to accept typical NHS (public sector) whitewash/cover up.

This has been an almighty battle. It too often is when the NHS fails. With the enduring culture one of deny, bat aside, ignore, obstruct, deny further, smear and obliteration. We have a series of NHS scandals (followed by reviews, well meaning but ultimately empty recommendations and rhetoric) to draw on. So much evidence. So little action.

The Sloven story, like any story, has many versions. The focus and attention of the post apocalyptic reviews conducted by Tim Smart, the improvement director (forgotten his name… Clive summat?) and the independent consultants brought in to review governance will all use different (but I suspect similar) lenses. None of them have engaged with families.

After a late, late night worrying about what is to unfold I’m left thinking If the people who died weren’t learning disabled or didn’t have mental health issues, none of this would have happened. If it had, to non disabled people, the CEO and board would have left Sloven pastures long ago.

A simple and damning as.

A Child of Our Time

Posted on June 28, 2016 by sarasiobhan

Another dirty day down Sloven way

Posted on June 26, 2016 by sarasiobhan

L1020197

Got the background details (via a Freedom of Information request) about the commissioning of the study into families’ experiences of Sloven’s serious investigation process yesterday. I’ve written about being invited to take part in this study. And of Lesley Steven’s defence around the magic wand stuff.

It turns out Sloven decided up front that this study should take the form of an Appreciative Inquiry. David Snowden offers a critique of this approach which includes:

Snowden

It ain’t a big surprise Sloven like this approach. They don’t engage with their failings at any level or allow patients or families to express how they feel. Setting aside the criticisms identified by David Snowden, Appreciative Inquiry ain’t an appropriate approach for bereaved families. Unilaterally choosing an approach that only focuses ‘on the bright side‘ when looking at patient deaths is simply wrong. And risks causing more distress to people.

It turns out that the consultant who got the gig was recommended to Lesley Stevens and commissioned on the basis of a couple of emails and meetings:

Shudder. At the March board meeting, in response to mention of the commissioning of external ‘work’, Mike Petter, then Sloven chair, quipped: This is a company we haven’t worked with before – there is one out there. No joking matter. We know the sizeable chunk of Sloven expenditure over the past few years spent on commissioning ‘consultants’ or legal professionals to help dig them out out hole after hole after hole.

The cost of this latest venture? £27,000 for 40 days work. Yep. Really.

Sloven have rules (like any public organisation) around the spending of public money on external services. There has to be justification for why there is no competitive process. Any spend of more than £25k has to go to the next Audit Committee for review…

The £27k agreed for this gig includes VAT so I assume the £22.5k (excluding VAT) figure (handily) means it doesn’t make the Audit Committee bar. As for the lack of competitive process… the excuse is presented on the Single Tender Waiver form here:

waiver

Ah. Bloody hilarious. Though it ain’t of course. Recommendation about the supplier is surely the reason procurement rules were implemented. Recommendation by whom? [Handily redacted in the FOI info]. Pace required following Mazars and CQC..? Sloven first got sight of the Mazars review last summer. Not much pace here. Lesley Stevens gifted the job to the consultant in February 2016 after it must have (eventually) dawned on senior Sloven muppetry that the CQC inspection did not go well. So competitive processes to protect public money are swept aside because of continued Sloven crapness, denial and arrogance… A circularity that makes my brain weep. And for the record, alternative suppliers are plentiful/Appreciative Inquiry philosophy ain’t essential. Quite the opposite.

What’s particularly chilling? (I dunno, running out of words/thoughts here, it’s all so utterly shite) is that Sloven think this ditsy review is an appropriate response to either the Mazars review or CQC inspection.To commission it in such a shoddy, careless and piecemeal way underlines how unfit for purpose the Sloven senior team are. It’s actually flagged up by Katrina Percy in a letter to NHS Improvement (who she still calls Monitor here) as progress on their enforcement undertakings:

Further demonstration of how devoid of understanding, ability, empathy, willingness, whatever the senior team are. As if any more is needed. These people simply shouldn’t be running this organisation. There’s a superficiality so obvious, documented so publicly and repeatedly, leading to such serious failings it is extraordinary.

Getting a colleague of a colleague, a mate of a mate or whatever combination to write some nonsense, bypassing processes in place to make sure public money is spent with caution and transparency and demonstrating a complete lack of understanding about bereavement is so wrong it almost defies words.

Work on this ‘review’ is due to be finished in the next week. I don’t suppose for one moment the consultant has been able to do anything approaching what she outlines in communication with Lesley Stevens. I hope Victoria Keilthy reads whatever puff that reaches her with a sharp lens and reflects on the commissioning of this crap. This is a public body.

L1020183

The JT Show

Posted on June 23, 2016 by sarasiobhan

For some time now, we’ve had a bit of a beef with Mencrap in the Justice Shed. Not least because they continue to make the extraordinary claim to be ‘the voice of learning disability’. A claim so inappropriate I don’t really know where to start. I’ll just leave it at their failing service provision (details of which are buried deep on their website…)

Well, and the ludicrously extravagant Strategic Executive Assistant to the CEO post currently being advertised to do the work that the CEO should probably be doing herself.

George has written about her experiences of working for Mencrap and, more recently, of daring to challenge the organisation on live television. Post Victoria Derbyshire, there was further approbation from a couple of parents on twitter. Including a baffling post about ‘Two mums’ that seems to accuse #JusticeforLB of being the equivalent of a Young Ones tribute band. Ho hum.

Anyway. Back to today. The Telegraph (I know) ran a spread about Mencrap CEO, Jan Tregelles (JT). This coincided with Mencrap’s Learning Disability Week and was published in their Lifestyle/Women section.

What did we learn from this article?

JT dined at the Sloane Club that day (a reference for typical Telegraph readers) and “Mencrap’s about giving people with learning disabilities the opportunity to experience life to the full”. She doesn’t mention it but I hope the learning disabled people she took with her enjoyed the “posh lunch with the great and good”.

The new Mencrap campaign faithfully reflects JT’s vision for learning disabled people. Such power and omnipotence. Blimey. I hope she’s using it well….

How are you using it JT?

Oh boy. This generated some sandwich related mischievousness on twitter. Not surprisingly. From the Sloane Club to cheese sarnies down a well in the space of a few sentences*.

JT could not peg her true colours to the learning disability gravy train she is riding more openly. Empathy? What about empowerment, autonomy, civil and human rights… ?

Sadly, the article doesn’t end there. It rattles through clothes, grooming, family, number of marriages and volunteering at Citizen’s Advice where something (not revealed) ‘clicked’ and bounced JT to Mencrap where she became PA to the ‘director’. From there it was PA to CEO.

And a series of statements so blinking depressing/enraging:

I just wanted to do something that I wanted to do.

I would have done it for nothing.

I could do support work now though.

Why, when you get on a bus and there is someone a bit odd are you instantly fearful.

We need to equip people to see someone with a learning disability as a person…

Now Jan. I know you’ve blocked me and you ain’t interested in anything #JusticeforLB has to say but seriously, if you really want to make a difference, you are going totally arse over ‘immaculately polished’ tit about it.

Public attitudes really ain’t the main problem. The establishment, including Mencrap, is.
In Learning Disability Week the focus really ought to be on learning disabled people.
You should have a look at Learning Disability England. This fledging organisation has a more legitimate claim to the voice of learning disability already.
I really wouldn’t do support work if I was you. I’m not sure you’d be very good at it.
There are some serious issues around what Mencrap as an organisation do. Not least the services you provide. If you need the support of a Strategic Executive Assistant perhaps the focus of this role should be less about public relations, media and project management objectives and more about actually improving people’s lives.

But what do we know?

Postscript: To those who think it’s heresy to critically challenge ‘the voice of learning disability’, I say do one. After you’ve done the sums.

*Turns out sarnygate was freeloaded from this Brene Brown Tedtalk… (thanks to FionaQuigs for the sharp spot).

Task and finito… my arse

Posted on June 22, 2016 by sarasiobhan

Apparently, John Beaumont, the Sloven governor who made the deeply inappropriate and offensive comments about LB became a governor in Feb 2016 so wasn’t in place when I sent the letter to the governors in January. My mum emailed the Council of Governors later that month too. I assume John Beaumont didn’t see her email either*.

Apparently the governors set up a ‘task and finish’ group [I know] to draft a response to letters from ‘complainants’ received in January. The proposed draft reply by Mark Aspinall was shot down in flames by a certain, er, John Beaumont, at the April governors meeting. You can hear him here [at 2hrs 29 mins though it’s worth listening beyond his apoplexy to hear some sense from John Green for the following few minutes]. [So blinking rare].

Mark mentions this dispute in his letter of resignation as a governor a week or so later:

I eventually received a reply on behalf of the Council of Governors in May 2016. Yes. May. A terrible reply that says crap all. Ongoing enquiries apparently… Of course.

My mum just received acknowledgement that her email was circulated to the governors. But what does she matter?

*Communication between the Sloven board and governors is a little bit, shall we say flakey? Arthur Monks, another governor, was told a copy of the Holder report was available at Sloven headquarters (an 80 mile round trip) when he asked for a copy.

Leadership and contact traces…

Posted on June 21, 2016 by sarasiobhan

L1019565-2 […or chandelier and glitziness]

John Sutherland, police commander, has written a cracking post identifying 10 things he’s learned about leadership. Sloven CEO, Katrina Percy (KP), wrote a piece for the NHS Leadership Academy in August 2014. In this brief (under 400 word) piece she flags up her maternity leave and the problems she returned to. [No mention that these problems were an outcome of the (non) actions she took before maternity leave]. In the same month she wrote a letter to me in which she further elaborates on her “leadership” style.

Here I meander through Sutherland’s 10 points (summarised in italics below) and the Sloven approach to “leadership”. It ain’t a pretty read.

I. It’s people stupid

Leaders who don’t care about people aren’t leaders at all. They might be bad managers, but that’s really not the same thing. People are precious and rare and extraordinary and brilliant and brave and creative and resourceful and kind. They are also thinking, breathing, feeling, bleeding, sometimes flawed souls who, every now and then, need a helping hand. Great leaders understand these things. They understand people.

KP doesn’t understand people. Though she talks a good ‘staff’ game. Notably the ‘thousands of staff I lead’ [shudder…]. These are the people she is ‘keen to support and promote wherever and whenever they do’ things brilliantly. Services and families are below staff ‘and partners’. Patients don’t feature. Tim Smart, interim Board Chair, clearly gets the people bit. He was open about this during the meeting with My Life My Choice.

II. Every contact leaves a trace

Every time two objects come into contact with one another, an exchange takes place – fingerprints found at house that’s been burgled; microscopic fragments of broken glass found on the clothes of the burglar. Every time two people come into contact with one another, an exchange takes place. Spoken or unspoken, for better or for worse. Great leaders understand not only that what they do is important – but that how they do it is equally so. Because every contact leaves a trace.

Since the Holder report (2012) there has been more contact trace in Sloven dealings than in an entire box set of CSI. The Sloven CEO and board have consistently failed to recognise this. Contact trace is even more important (in a non criminal context) where this trace can be circulated and re-circulated on social media. Since Smart’s appointment there have been some traces of fresh air through Sloven corridors. Not least the mediation agreement, statement and subsequent inclusion of LB’s pic on the Sloven front page for four weeks.

III. Leadership is service

The first responsibility of a leader is to serve. Before anything else, to serve. If the pursuit of my own ambitions has become more important than the cause we all serve, then I have lost my way. If my promotion matters more than your progression, then I am in danger of losing myself.

The words ‘serve’ and ‘service’ were clearly replaced by reputation, dosh, ruthless ambition some time ago. Down Sloven way.

IV. Everything can’t be a priority

If everything is a priority, then nothing is. Leaders have to decide what matters more. Leaders need to be absolutely clear about what’s most important – particularly in a world of limited resources. And they have to be consistent about it.

In her letter to me, KP argues

good leadership is founded on a determination and deep commitment to do what is right for all parties concerned, not necessarily what might be either easiest or most popular at any particular moment in time or demanded most loudly or persistently by one group or interest than another.

This self defeating and clumsily constructed statement is yet another attempt to stick the boot in. In fact Sloven do prioritise. Their reputation. They always have. Sutherland should perhaps revise this point to capture effective and reflective prioritising.

V. Two ears, one mouth

Great leaders are great listeners. And they understand that there is a difference between listening and hearing – and between hearing and actually doing something about what’s been said.

KP’s letter is an exemplar in not listening. A bombastic exercise in ‘me, me, me…’, brutal in callous delivery. Statements like it was ‘absolutely right’ for us to (4 mentions), ‘I believe/strongly believe’ (8 mentions), ‘deeply proud’ (1 mention) and ‘absolutely confident’ (1 mention) are breathtaking in both number and emphasis in a two page letter. Ally Roger’s analysis of KP’s communication further explores her use of language and what it reveals. Contempt and disregard basically.

VI. Leadership requires bravery

Having courage doesn’t mean that you never feel afraid. It means feeling afraid and doing the right thing anyway. It is both physical and moral. Great leaders stand for what is right, even if it comes at personal cost. Great leaders stand against what is wrong, even if it comes at personal risk. Great leaders have difficult conversations (with people, not about people). And they do these things constructively and positively and professionally – because bravery and bullying have nothing whatsoever in common with one another.

I suspect KP thinks she’s brave. She’s refusing to step down, insisting she needs to steer the flotilla out of the darkness. This ain’t bravery (see IX below). It’s a combination of arrogance and complacency (and stupidity?) She’s not having difficult conversations with people. Audio recordings of Sloven board minutes make it clear there’s little ‘standing against what is wrong’. Little of anything at all.

VII. The difference between activity and progress

Being busy and making a difference are not the same thing. I played a game in my younger days that involved placing my forehead on an upright broom handle and spinning round in rapid circles, before affording my friends the opportunity to have a good laugh at my attempts to walk in a straight line. Plenty of movement. No progress whatsoever. I know a lot of busy, dizzy people.

The Sloven leadership has nailed talking the talk and making no difference. From burying the Holder report, to repeatedly not ‘learning lessons’ at inquests and failing CQC inspections. They must be dizzy at the sounds of their repeated (and meaningless statements).

Chillingly, in the 26.1.16 board minutes (around 3hrs 36 minutes) in response to James Younghusband’s mother asking KP about the Holder report and identified ligature risks, she responds that the Holder report is archived and they’ve only found the process documents not the ligature risk report. Eh? Those old contact traces? What did KP say about this back in 2014…

Firstly, openness and transparency are fundamental when things go wrong…

VIII. Leaders must be dealers in hope

The more challenging the context, the greater the responsibility that leaders have to deal in hope – to tell the kinds of stories and to paint the kinds of pictures that get people up out of their seats and cause them to come, running. It’s not the critic who counts.

Hope schmope. The Hansard transcript from the recent Westminster House debate details the lack of hope being generated by Sloven leadership. The NHS Staff Survey similarly illustrates increasing staff disillusionment with working there:

Hopeless.

IX. Leadership is about character

It was the American General, Norman Schwarzkopf, who said: ‘Leadership is a potent combination of strategy and character. But, if you must be without one, be without the strategy. Who I am matters. What I believe in and what I stand for matters. Great leaders ask you to do as they say. And as they do.

When the latest shedload of contact (CQC) trace hit the fan in May, KP (again) disappeared. Lining up sidekicks to face the barrage of press interest (badly) and without apparent support. Again, the ghost of the Leadership Academy trace (ironically called ‘When the going gets tough’) shows KP arguing:

Visible leadership is crucial, for both staff and patients.

X. Legacy

Great leaders provide the shoulders for others to stand on. To adapt a quote from the journalist Walter Lippman: ‘The final test of a leader is that they leave behind them in others the conviction and the will to carry on.’

Not sure about number 10 in Sutherland’s list to be honest. I suppose we will hope KP leaves so we can tell what’s left behind.

There it is. Leadership. And nothing like leadership. In a Sloven nutshell.

The duck boat and turning tides…

Posted on June 15, 2016 by sarasiobhan

It was the launch of Learning Disability England yesterday afternoon. In the House of Lords. With afternoon tea. I came out of Westminster station with the streets flooding and the London Duck Tour waiting by the lights. Ooof… One of those moments. My mum and dad took LB and Tom for a day out on the duck boat in the holidays. Years ago. I’ve not seen it since (thought it had been disappeared).

Another sign, I thought. As the sign bucket overflowed.

On to the launch. And Learning Disability England. Guts, passion and punch also by the bucket full. A membership organisation for pretty much everyone (£12.00 a pop for membership for individuals), democratically run; e.g. no big decision will be made unless 1/3 of the vote is from learning disabled members… Wow. A wow moment that so shouldn’t wow in 2016. Underpinning principles; challenging, empowering, being creative and putting learning disabled people first. Wow…

The various pieces of LDE are just brilliant. Colourful. Random. Expert and passionately committed to improving people’s lives. The rain stopped…

After nosh, tea and chat, the ‘speeches’ (brief, to the point, heartfelt and led by Gary Bourlet) included Jane Campbell who held her hands up in acknowledgement and recognition that the UK disability rights movement just didn’t think about learning disabled people back in the day. (Physically) disabled people were too busy fighting the civil rights fight.

It was an emotional event.

I remembered another afternoon tea at the House of Commons type jobby. Way back before the duck boats were recommissioned. The Mencap Breaking Point report launch. A small group of (uppity) families travelled by the train from Haddenham. We got through the day, kept a lid on the excitement, stopped a stampede on the cake table and managed to calm down a cab driver on the way back to Marylebone after LB announced there was a bomb in Big Ben… We were very much the mint chocs that come with the bill that day. Meaningless and typically tasteless trimmings.

Hearing Jane Campbell put her hands up to an omission of non inclusivity (everything about us without us…) in a diverse crowd of people, made me think how far we have come. Then that blinking boat went past on the river. Twice. In one day. A reality check.

Bring it on Learning Disability England. We will be supporting, cheering and challenging.