On Thursday I received an email in response to my ‘access to records’ request to Oxfordshire CCG and local authority:

I would be grateful if you could provide me with proof of your identity; a photocopy of the relevant page of your passport or driving licence and a recent utilities bill would be acceptable. I would also need consent from or proof that you are the personal representative of Connor Sparrowhawk to allow us to be able to release the above details. Please let me know if this causes any difficulties.

The rest of the day, in between the Oxford Mail photographer pitching up (twice) for a ‘sad’ photo shoot (picking among the dog shit in the back garden), a shortened chat with a BBC Ouch journalist, and a visit from the NHS England chosen lay representative on the Serious Case Review, was spent raging/howling on the phone to the NHS Central Southern Commissioning Support Unit about this request.

“You’re all (fucking) NHS at the end of the day? Why can’t you join the dots?” I raged. [Without the swearing].

I tried to explain my distress;

Our son with epilepsy was left to drown [howl] in the bath in a heavily staffed, hugely expensive, specialist unit over a year ago…

Nothing has happened in response to this. Despite an independent investigation and CQC inspection providing evidence that the place was appallingly run…

… and no. I am not prepared to go to a solicitors office and get an affidavit to ‘prove’ I’m his mum [their suggestion] to send with our leccy bill to release these documents.

Meanwhile, in the sunshine world of the NHS (according to all things Bubb) we received the response to a collective letter written to the chair of a Royal College of General Practitioners (RCGP) Inquiry into person centred care in the 21st century. We’d written to say that the inclusion of the Chief Executive Officer (CEO) of Sloven on this panel (I know) was questionable given the ongoing investigation into LB’s death.

At a fairly basic level, if you are putting together a panel of experts, why include someone who is in charge of an organisation with an unfolding of set of failures around learning disability provision? Especially when the pool you could choose from ain’t that small.

Katrina Percy, CEO, didn’t have to account for herself in this exchange. There were no demands for utility bills. Or broader questions around legitimacy/credentials. Instead, a shutting down of any discussion;

The incident took place less than a year after Katrina took over responsibility for the service – and during a period when she was in fact on maternity leave.

Wow. Championing Katrina. What a defence of the individual rather than the role. Astonishing. Maternity leave simply ain’t relevant here. And the introduction of that little known construct of ‘practice CEO’ when all bets are off in terms of accountability for a year after acquisition. Wow. The world of the NHS certainly works in mysterious, opaque and chummy ways.

And no, I ain’t sending a futility bill or proof of birth. I quipped on twitter I’d have to send a bit of umbilical cord and someone replied ‘umbilical cord and a bucket of tears’. Yeah. That just about captures it.

Been getting a bit weary in the last few weeks, partly because of this Bubb thang, partly because of Sloven delay. Delay has characterised the Sloven response this past year. And I know it’s been the same for Nico’s family. They take an age to do anything (other than pitch up for award ceremonies). Sloven delay;

about to or in the process of doing something with no end point in sight. And no whiff of urgency.

We are still waiting to hear the outcome of the staff disciplinary investigations. It’s over a year since LB died (he died?), and five months since the independent report was published (they had to wait for that, apparently). And still nothing. How long should this process take? What the fuck does it involve? And are six or seven members of staff really still suspended on full pay?

There is also a growing stench that any staff disciplining may only involve the Nursing and Midwifery Council. No whiff of a clinician or two getting a rap across the knuckles here. Nah, that ‘responsible clinician’ label is stuffed in a cupboard, next to the out of date oxygen tanks, quicker than you can say ‘HSJ Inspirational Leader’ when something goes seriously wrong.

Sloven have always paraded their staff as their main concern. Right from the get go. Patients schmaycents. No support for LB’s peers when he died such a nasty, preventable and public death. Being the non human types they were (and clearly still are). But oodles of concern about staff wellbeing. Same with the independent investigation. Layers of staff cosseting while we were left to wait. And wait. The final version of the report further delayed as the Slovens decided, at the last minute, to let staff comment on it. They delayed sending a full set of LB’s notes until two days before the report was due. They obstructed (may turn into delay when I get my arse together to complain about this) disclosing mention of me within Sloven towers by sending a set of black pages.

Delay is a quietly cruel and inhumane tool in this context. I can’t describe what this process is like because there are no words, but I do know it has been made so, so much worse because of these delays. Completely unacceptable but seemingly unmonitored.

In thinking about the treatment of family members when there has been a catastrophic incident resulting in serious harm or death, one of the simple actions NHS England? Monitor? CQC? Someone? could do is make sure there is no delay. Through effective sanctions.

As always, it really ain’t rocket science.

Under a Freedom of Information (FOI) request, we received the full file yesterday of the CQC inspection into Slade House last September. A delight to receive (largely) unredacted documents, unlike the pages of black received from Sloven. At the same time, a harrowing and distressing read. The published inspection report necessarily providing a precis of the appalling provision found there. How could they?

Among the 39 documents received, was a letter from Sloven to the CQC (Sept 24th) saying, amongst other shite, that they had “agreed with commissioners and the Local Areas Teams (NHS England) to upgrade the incident involving the death of a patient at STATT in July to a Level 2 SIRI“. (Becoming a bit of a dab translator of Sloven speak, I suspect this means they were told to change this grading.)

NHS guidelines around serious incidents can be found here. On p.23 it states;

• Initial incident grading should err on the side of caution, categorising and treating an incident as a serious incident if there is any possibility that it is.

Classy old Slovens went for the natural cause grading initially. Chucking err on the side of caution out with the defibrillator battery (and giving it a tick on the matron walkround sheet). Astonishing. They didn’t even deign to properly investigate the context of his death and the services being provided in STATT in July. Stating in the same minutes (23.7.23) that due processes were followed. Tick. (Bit like the local authority/commissioner visit to STATT in June last year where senior staff were asked about restraint; “Face down restraint Guv? Us? Nah. Never”. Tick.)

Level 1 investigations (p.37) are;

incidents involving No Harm and Low Harm and/or where circumstances are very similar to other previous incidents.

Now as LB died, the first two criteria don’t apply, and unless Sloven have a habit of letting patients drown in the bath in their provision, the latter isn’t relevant. So it seems extraordinary his death wasn’t judged to be worthy of a Level 2 investigation. I can only think, that, under a Sloven lens, any death of a learning disabled person is.. well a death of a learning disabled person. Kinda irrelevant really. Very similar to all those other deaths (4 in 10 learning disabled people die prematurely).

LB’s death finally became the serious incident it always was after a regulatory body found the unit he was in a shit hole and the commissioners/local authority stepped in. If this isn’t evidence enough that no NHS Trust should conduct an internal investigation into the unexpected death of a patient in their learning disability/mental health provision, I don’t know what is.

Footnote: I don’t know how much I have to spell out that not only was LB’s preventable death scandalous, but it is also completely unacceptable that we are having to nip at the heels of a sloppy, careless (or worse) and completely disregarding Trust (and other relevant bodies) to make all this shite visible and demand accountability. Every interaction with the Slovens has involved delay, prevarication and nonsense. And NOTHING has happened yet. Does Katrina Percy/senior management team have someone overseeing their actions or can they do what they like? [And on that note, if someone could bung this under the nose of Simon Waugh, Board Chair, that would be helpful. I don’t have time to write to every fucker who might actually have some influence to do something. Not after a whole year of this nightmare]. 

Got back from Nottingham this evening after a couple of hectic days away at a conference. And eventually picked up the blue folder again. The covering letter explains what it contains. Turns out I made a cock up with the dates on request two. My original request asked Sloven to provide copies of all emails/letters/reports and telephone transcripts that ‘refer to me’ between March 19th 2013, the day LB entered the unit, and the date I made the request.

I called Sloven information provision people in May after receiving the two emails this had turned up. I was told they’d searched for my full name and that was what I’d asked for. After a conversation during which my phone melted with incredulity, I agreed to put in a ‘supplementary request’ to include the various permutations of how I might be referred to in Sloven communications (a non-exhaustive list);

All personal data referring to me (to be searched as any combination of the following words ‘Sara Ryan’ ‘mum’ ‘mother’ ‘family’ ‘CS’ ‘Connor’ ‘Sparrowhawk’ ‘SR’ ‘Mrs Ryan’ ‘Connor’ ‘Sparrowhawk’)

I specified between March 19th 2014 and the current date.

Oh my blinking blimey. I dropped a ball there. And the Slovens ran with it.

I can only dream of getting a call back from the information disclosure people. Quickly refashioning my phone into a usable shape to take the call. Gathering my breath. Pinning the relentless tears into a ‘will defo catch up with you later’ space enabling me speak.

‘Just checking whether you’ve possibly made a mistake with the dates specified because the time frame is a bit odd really… did you mean 19th March 2013? We’d like to get it right given the circumstances.’

There is no tear ‘pen’ space with this bunch of fuckers.

Rosi Reed, mother of Nico, who died nearly two years ago now about ten miles from here, has decided to talk openly about what happened to her beautiful boy. A summary of this has been written by Gail Hanrahan. A terrible, shocking and heartbreaking story. Another wasted life through disregard and indifference. As Gail points out, there are some striking similarities between what happened to Nico and LB. But also striking differences in our respective treatment by the Slovens. These differences underline the complete fakery of the Sloven way. And how they really don’t have a clue.

After the CQC failed inspection of Slade House published in November, Sloven shut one unit rather than improve it and banned baths in the remaining unit. Returning inspectors found a continuing lack of therapeutic environment and staff still locked in offices. Now if like me, you avidly follow the Sloven board minutes, you will be well aware they have a new learning disability action plan (or pathway) they are pretty excited about. They employed some swat team of experts to help develop this plan.

How they can, on the one hand, be developing a ‘plan’, while at the same time leaving known crap provision to remain, er, crap is beyond me. It demonstrates how fake this whole process is. And that’s because it’s all about process and not about people. If they thought, for a second, about the people left to fester at Slade House, their priority would surely be to make improvements there. It ain’t rocket science to provide a therapeutic environment (it’s a treatment and assessment unit with a team of professionals, costing £3500 per week, FFS.)

Fran, our advocate, made a complaint to the Slovens about her son James’ transition meeting recently. This meeting was an absolute shambles. Particularly shocking given James’ horrific experiences in an out of county placement a couple of years ago and that he was meeting one of the psychiatrists involved in LB’s (non) care. Despite LB’s death, despite the CQC inspection findings, despite the presence of the swat team of experts in the vicinity, Fran’s complaint ran to around 26 points. 26.

KP responded personally in a letter which includes seven ‘apologies’, one ‘sincere apology’ and two ‘sorrys’. Given that Fran was pointing out a level of inadequate care that makes you wonder if she’d actually gone to the local sorting office instead of a hospital, the number of apologies was probably warranted. Thirteen action points were produced from this letter. 13.

KP thanked Fran for pointing out these failings. (no words)

Meanwhile, Rosi ain’t been courted by KP.  In the response to her complaint about not being informed about the internal investigation into Nico’s death, not being allowed to see the report and having to return Nico’s diaries to the Slovens, KP wrote pages of ‘self excusing prose’ (three personal ‘sorrys’ and one sorry on behalf of another staff member). She included the following recommendations arising through Rosi’s complaint:

Can you imagine receiving this after the death of your child? Does KP have a heart? She writes as though she’s responding to a complaint about milk being left out of the fridge.

Nico doesn’t feature in the Sloven minutes (unlike LB who rose to lead feature in KP’s recent report). An independent inquiry wasn’t commissioned into Nico’s unexpected death. KP wasn’t pulling every trick in the book to meet with Rosi and her family either.

Because till now, Rosi wasn’t making a noise. And that’s how it rolls in the world of learning disability, unexpected deaths and the NHS. You can chuck the candour manual in the nearest skip when push comes to shove. The real process is a quick and dirty internal investigation typically by some close colleague of the unit/ward/home being investigated and not worth the paper it’s written on. What a pile of shite. Particularly when you have a trust as leaky as the Sloven’s, with a Chief Exec who is all about style over substance, awards over decent provision and doesn’t have an ounce of understanding what this experience is like.

So, LB died. Nico died. No staff member has been formally disciplined. The learning disability provision remains shite and failing. CQC and Monitor are regulating. And nothing has actually changed. Rich and I bounce this question backwards and forwards to each other, regularly:

“Er, what do you reckon would have to happen before something was actually done?”

Answers as always, on a postcard. £1 each towards fundraising to cover the legal costs of battling this bunch of muppets. You couldn’t make it up.