Summary of a 4615 word letter about what happened to LB below sent [to anon] by an Oxon Commissioner in 2014, forwarded to our legal team just before LB’s inquest. Beware the wrath of middling/senior public sector figures if you want to publicly document your experience of public sector provision is clearly the message here. An illustration of the toxicity of local authority/CCG practice. [Rage warning.]

A tale of mother blame.

Deference to a bereaved mother means that she has been able to tell a partial story.  This is frustrating. I know through inside information that not all that’s written on the blog is accurate. I mean LB’s recent diagnosis of epilepsy was the least of the family’s worries. The children’s team told me this. His mother  often rejected support only to come back wanting it immediately. She accused social services of harassment and told the social care manager she should have read her Facebook page to know she wasn’t coping.

It’s my understanding that his mother was the one who pushed for admission. She didn’t want LB home and was pushing for a supported living service that can’t be magicked up in a few weeks. [Christ]. She refused an increase in LB’s direct payment package and never made a complaint which was obviously the sensible thing to do. 

It was clearly a difficult time if you read her blog however not everything she reported was accurate. She frequently took lines out of emails people sent her out of context and posted them. And wrote things staff disputed. A colleague was trying to get LB out of STATT but because Sara Ryan didn’t want him home, they didn’t push it. In hindsight, they should have just discharged him.

I’ve read the minutes of the Care Programme Approach meeting where bathing was discussed. There were no minuted objections from the family to the idea that he should be left alone in the bath. He hadn’t had a seizure for a year so although in retrospect, 15 minute checks look unsafe, it may have been a reasonable risk assessment at the time. His mother and her friends tried to make the CPA meeting person centred and this was why vital things could have been missed. You can’t really have person centred planning fitting with clinical health processes. [Tsk].

I know that Sara Ryan doesn’t think this but the majority of STATT staff are very caring. People cried all weekend after LB died and still people are shaken and upset by it. The huge amount of negative publicity that has been generated continues to cause them immense stress. Sara refused to speak to anyone except via her sister and has made it difficult for open honest communication.

Once STATT was closed, and SR was banging on in social media land about stuff, we’ve been unable to do our jobs properly. Patients have nowhere to go and we’re too scared to say anything because of that pesky blog. I still believe that the worst services were always outside of Oxfordshire. The trouble is that SR’s anger is unproductive and her blog is causing problems. She names and shames people and causes illness. One friend was off work sick for two days as a result of one post.  I believe her campaigning has done a lot of damage.

I originally thought LB could have died anywhere but I now know [after publication of the original Verita review] that Sloven were responsible for his death. Despite SR refusing to speak to anyone, Sloven did themselves no favours by retreating. We usually do a quality visit after an unexplained death but the police and HSE were investigating. We asked the local NHS England team for the highest level of investigation but it wasn’t until SR spoke to David Nicholson that Verita were appointed. We argued for a family advocate but weren’t listened to. We didn’t visit STATT ourselves because a lot was going on and before we were able to review the unit the [pesky] CQC pitched up. They used a new form of investigation looking at stuff they wouldn’t usually look at (medication storage, clinical waste, batteries in defibrillators and so on). The CQC inspector gave us mixed messages and I certainly felt there were some wider politics going on.

I was really shocked by the Verita findings and had no idea that LB was experiencing increasing seizure activity or that risk assessments weren’t being conducted. I believe we at OCC had no way of knowing that we weren’t being told the truth by STATT staff or that Sloven weren’t checking on things. It’s the STATT team who will have to live with LB’s death for the rest of their lives. 

I do think in hindsight we could have perhaps followed up on the blog  and done some more checks in recognition of the fact a new organisation was taking over, but we were so stretched, I don’t think we could have done much more than that.

I know LB’s death was horrific and upsetting and I know his mother will never get over it. But you can never guarantee 100% safety and it’s not good for people to be continually checked. I’m fairly confident we’d have picked up STATT’s deterioration at our next visit (we do it all the time) but sadly it was too late.

I feel immensely sorry for Sara Ryan, it is terrible she has lost her son. However, I believe bloggers have a duty to be honest, and accurate; and some of the effect of her campaigning has made things difficult not just for professionals but for other service users and families. My hope is that she can find some kind of peace with this, and that one day, she might be able to move on.

Oh fuck right off.

[I’ve never met this person].

Another failed CQC inspection for a unit on the Slade House site (across from the (now closed) Short Term Assessment and Treatment unit in which LB died) this week. Nah. 824* days after LB died and Sloven still can’t provide a service worthy of the (at least) £3500 per week they are paid to look after each of the four patients? Surely not.

This was a re-inspection, the unit having failed to reach adequate standards in August 2014. And, on return, in August 2015, the inspectors found failings. Still. They found understaffing, inadequate record keeping, a lack of supervision and lack of leadership. The care provided was of a good standard, it’s the processes and leadership that are failing. One professional said;

as a service they seem very focused, but I don’t think they are helped by what goes on above them, it just doesn’t really seem to know what’s happening.

Nah. That couldn’t be clearer. Sloven are simply shite when it comes to learning disability provision. We all know that. It’s been demonstrated in the various investigations into LB’s death over the past two years. They are all PR, shiny awards, faddy nonsense and wasting big bucks on novelty crap.What’s it going to take for someone/organisation to step in and do something??

Meanwhile, Oxfordshire County Council (who couldn’t organise a piss up in a brewery clearly) have extended the contract for Sloven services in Oxfordshire for another two years. To enable a safe transition to new service providers. No idea what they were doing between early 2014 when they decided to pull the plug on the Sloven contract and now. Arsing around commissioning and responding to a craphole ‘independent’ report to contribute to the ‘toxic mother collective‘, led by Dr M, Dr Crapshite and Anon (ex-commissioner) perhaps.

Oxfordshire County Council are stumping up enormous sums of cash for flaky provision. My brain melted when I read that understaffing meant the on call staff member was up to 40 minutes away for emergency overnight medication provision but generic emergency services were nearby. £3500 a week?

Is it all just a joke? All talk, no improvement and a group of patients whose lives simply don’t matter? It doesn’t make any sense to me.

*I counted the days this morning when I realised I’ve woken every morning since LB died thinking about him.

Been sadly puzzling about my blog today. And the persistent theme of mother blame across LB’s inquest. It turns out the Band 6 nurse received a call from Sloven on the Saturday before LB was admitted warning him that LB may be admitted. Kind of astonishing given the community team (good old Oxfordshire County Council) hadn’t told us at that point that the unit existed. (Well they never told us actually). The nurse was also warned I wrote a blog which was critical of the Trust.

In his evidence, he said he thought the blog coloured the care LB received. A horribly distressing and harrowing thought. Both the community psychiatrist (Dr X) and unit psychiatrist (Dr Y) seem to dislike me with a chunky dose of intensity (Dr Y speaking on behalf of Dr X who didn’t give evidence). Other Sloven represented staff included (coached?) comments about how difficult I was in their witness statements. These weren’t sustained during the inquest.

“Dr Ryan called Dr X DR CRAPSHITE in her blog…” Dr Y’s barrister said with incredulity at one point. To an audible (and cheering) response from the public gallery. Sitting, pinned in a sort of clenched, beyond stressful hold, about a foot from this ‘cheery’ guy (as I was for the two weeks), I thought how LB would have forever after asked me with beaming delight, “Mum? Is she called Dr Crapshite, Mum?”

Just before the inquest we were sent a copy of a letter written by a then senior commissioner at OCC to a disability activist. 4615 words of background, attack, excuse, vitriol and considerable billy bullshite. Both Dr Y’s evidence during the inquest and this letter present a picture of a difficult and ‘damaging’ mother who didn’t want her son home [howl] and staff terrified of appearing on partial and inaccurate blog pages. Dr X apparently refused to treat LB in the community because I was so toxic.

Wow. Wow.

I only met Dr Y a few times in meetings with several other people when LB was in the unit. I met Dr X once in January (briefly) with LB and Rich, and we had two telephone conversations. I never met the OCC bod. Of course we wanted LB home. I can be difficult at times. I was ‘difficult’ the Friday before LB’s admittance (on the phone to the crisis team) because I was terrified, desperate and was being told to contact an on call GP. An inappropriate suggestion given the circumstances. I also have a job, loving family and friends and interact, pretty cheerfully on the whole, in various settings with all sorts of people.

Katherine Runswick-Cole wrote an ace post about mother blame back in the summer for 107days of action. Most mothers of disabled children appear to experience this (toxic) blame at some point (several, numerous, sometimes continuous points) across their kid’s lives. Particularly when their children reach adulthood. I’m now wondering if you chuck in social media activity, the blame intensifies and becomes something else. Professionals seem ill equipped to deal with the (possibly public) scrutiny social media offers families. It’s experienced as unsettling, upsetting and disrupting. Sloven and OCC clearly remain unable to deal with (what was originally anonymised) scrutiny. Unable to embrace the immediacy of ongoing feedback, commentary and opportunity for engagement with services and support. Instead trying to hold onto archaic and outdated systems.

[Note to any local authority/NHS Trust… people/parents/family members will quite likely bite your hand off at the sniff of any genuine engagement/conversation around the provision, quality of support, potential future of people’s lives. Love typically underpins all these actions and responses.]

The defensive and ridiculous responses by senior professionals and officials during the inquest and over the past two and a half years, chills me to the core. That, in some way, these responses might have contributed to an obstruction of LB’s basic care and denial of our expertise/knowledge (while these pages were being monitored by the Trust) is so unspeakable, so hideous, so awful, my heart, body, brain, being freezes into something unreachable and unrecognisable.

There seems way too much focus on self interested concerns, protection, status, hierarchy and reputation among senior staff. With this blog as a central feature.

I’m not sure frontline staff were aware of or gave a shit about it.