Secrecy, transparency, purdah and the illusion of candour #ADASSspring #JusticeforLB

Earlier this week Sara posted a blog post titled State agents and lives on hold. In it she updates on the tiresome slog to get accountability and answers around her son’s preventable death, in an ATU. LB drowned in the bath, something an independent report found to be entirely preventable, fourteen months ago. Still no accountability for that. She also shared on twitter this week that there had been yet another delay with sharing findings into a second, broader investigation, into what happened. This delay is apparently due to purdah, and sensitivities around sharing information.

OK, so what’s purdah and why does it matter?

Screenshot 2015-04-15 15.04.38

Yup, in case any of you weren’t aware, this term that is being bandied around the 2015 General Election is about as offensive and oppressive as they come. In the pre-election period it is used to ‘describe the period of time immediately before elections or referendums when specific restrictions on the activity of civil servants are in place’.

OK, so why am I banging on. Well, I believe that the General Election has been known about for years now, the date was not mystically plucked from the sky a week or so ago. To that end it was well known when the General Election would take place, and therefore any sensible person could ascertain that a period of pre-election clamp down would happen before it. So, when NHS England commissioned the second investigation into LB’s death and the circumstances surrounding it, it was reasonable to assume and anticipate the General Election getting in the way. Except no-one did.

An increasingly fragmented and fragile grieving family, pummelled by the technocratic and bureaucratic machines of the NHS and state systems, were delivered another punch to the throat last week, when they’re already gasping for breath. The subtext goes something like this:

No sorry, you can’t hear what we now know until after the election, wouldn’t like to upset the voters. In fact let’s be honest, we’d rather you disappeared behind that curtain over there, stay out of sight and stop kicking up a stink. It’s terribly unbecoming you know. The NHS is on its knees, social care has an even bigger funding gap, we don’t need your type causing trouble.

LB_dude

Leave that there and skip ahead to today.

The 21st Century has made it to ADASS Spring Seminar, a gathering of a hundred or so Directors of Adult Social Care, I’ve no idea if John Jackson, the Director for Oxfordshire will be there, but no doubt if he is there will be much consoling of what a difficult job it is to deal with grieving and complaining families.

Who am I kidding, no-one/few there even know about LB, or what happens, or would care.

Thing is when you’re at the heady heights of Directors you genuinely are faced with challenges and errors and tragedies* like this all the time, so why would LB matter? He’s just another, not fully human, faceless young man with a learning disability.

*Preventable deaths aren’t tragedies, something that shouldn’t have happened and could have been stopped wasn’t written in the stars and caused by cosmic alignment

After the Winterbourne View panorama, ADASS and many others of the great and good signed up to a concordat to ensure things would change, then…. tumbleweed. An impossible job, too big a task, unclear leadership – so many excuses offered and so little change.

The reality is of course, I understand, really I do, at least some of the challenges of being a Director. I have skirted on the edges of social care for a number of years, sat in meetings and workshops, attended the aforementioned Spring Seminar on several occasions and even had the privilege of shadowing the simply awesome Peter Hay a few years ago (and a better example of a Director you’d be hard pressed to find).

I believe it’s a hard job and most work incredibly hard at it. Pop along to any Social Care Curry (we’ve had 80 now) and you’ll get a sense of the commitment, passion and belief throughout social care.

I’m reasonable enough to understand the benefit of a commiseration/consolation/letting our guard down opportunity where grieving and difficult end users are kept behind a metaphorical curtain. I just don’t see why my taxes should pay for it, or for the time of people attending, and particularly for the NHS England CEO to attend. It’s not even like there will be much challenge, as David Brindle so brilliantly recalls:

When sector leaders last met in force, at the National Children and Adult Services conference last autumn, they seemed to get a bad case of stage fright and swallowed most of the home truths they had sworn to tell ministers to their faces. Health secretary Jeremy Hunt and communities secretary Eric Pickles must have felt as if they had entered a lion’s den only to be savaged by poodles.

I am not anti-Directors, anti-ADASS or anti-NHS England, but I am anti-secrecy and cover up and every day I become a little bit more fervently anti-oppression and destruction and technocratese. I am reaching peak candour level, where cover up and hypocrisy are close to tipping me into new realms of honesty and ranting!

I can not express in words the damage that is being done to a family I care about, and we’re not talking about the original pain and grief (I can not imagine what that must feel like) but this is ongoing damage, pain and new harm. Seems to me like some of the NHS England processes need safeguarding alerts raised about them.

Where does ADASS come in? ADASS are keen to point out at the moment that they are a charity, their charitable aim is to:

We are a charity and the association aims to further the interests of people in need of social care by promoting high standards of social care services and influencing the development of social care legislation and policy.

If ADASS are about furthering the interests of people in need of social care they have a long way to go on this issue. ADASS and social care more generally have been woefully silent on the issue of #JusticeforLB, with notable exceptions especially amongst some providers. Perhaps they’re busy listening to families thoughts on why they are ignored. ADASS are holding their Spring Seminar get together, in this pre-election period, and Simon Stevens, the NHS England CEO, the same one who is apparently doing everything in his gift to ‘change the services learning disabled people get’ will be speaking.

So suddenly those pre-election rules that prevent a grieving family finding out what happened to their son, can be relaxed for a bunch of Directors?

Seems we’re light years away from transparency and candour being things that are embodied, as opposed to words that are kept somewhere in a policy document on a dusty shelf, behind a curtain out of sight so as not to bother people. Not sure whether it’s hypocrisy, double standards, innocent oversight or something altogether different, but one thing I am sure about is that it leaves a bad taste in my mouth.

Why exactly should adult social care directors be privileged over a grieving family?

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