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.