I’ve been off work since November with ‘mixed depression and anxiety complicated by grief and trauma’. The thoughtful and consistent support I’ve received has involved focusing on doing very little in order to regroup and recover before the General Medical Council (GMC) decision on the fitness to practice of LB’s responsible clinician (Feb) and the judgement in the Health and Safety Executive (HSE) prosecution of Southern Health NHS Foundation Trust (March). 

Doing very little has been a revelation. After early days of intense agitation and wondering ‘What the actual fuck…?’ I’m getting good at it. I can wash a pan or sort out a small pile of crap (untouched since 2013) with unprecedented attention and a (non) speed that would beat the slowest of slow lorises. Disrupted/nightmare-filled sleep is more manageable when you can decant from bed to settee with a blanket during the daytime. Reducing panic attacks to moments of breathlessness/fear is something else.

I’m shocked now that Rich and I returned to work so soon after LB’s death in 2013 (with no pressure from either of our employers). But of course back in the day we had no idea of what lay ahead. 

“Who supported you after LB’s death?” asked the mental health team a few weeks ago.

Supported us? In the wake of LB’s sudden, brutal, unexpected and utterly preventable death? Like a police liaison officer? Ah. No. LB died in the NHS. There’s none of that stuff. Respond offered us telephone counselling via social media. 

We didn’t know…

I think we probably thought at the time that work would be a distraction from intense pain while the wheels of justice and accountability turned in the background. With the odd nudge from our newly appointed legal representatives.

We returned to work in the early days of the dirty tricks game the Trust and local authority were playing. All we knew at the time was that the Trust pegged LB’s death a ‘natural cause’ death in online board papers in late August. We didn’t know about the behind scenes activity; the briefings and secret reviews; the twists and turns, lies and obstruction. We didn’t know these processes would drag on for years or how much of an enormous collective effort would be necessary to gain accountability.  

This was and is our ordinary. In the extraordinary space of public sector related preventable death.

As it is for so many other families. Many of whom have endured more than the 4.5 years we have, while others regularly join this liminal space. There’s little change. There’s little support for young people who struggle and teeter on the brink of admission to inappropriate settings while their loved ones do everything they humanly can to pick their way through the paucity of appropriate care. It simply ain’t good enough.

A new National Director…

Ray James, the newly appointed NHS England National Director for Learning Disability tweeted earlier today.

James is, of course, one in a long line of people charged with the task of reducing the scandalous number of people incarcerated in assessment and treatment units. We’ve witnessed a series of awkward and sometimes embarrassing failures in trying to do this, not least the Winterbourne View Joint Improvement Programme/Concordat and Stephen Bubb’s big breakfast. I don’t doubt James’ determination and commitment to the task he faces. What is concerning is the disappearing of everything that came before. A snapping of lines.

Another day, another face, another resolution. While people continue to live heartrendingly miserable existences.

No #Learningfromdeaths

Rich was appointed as one of two family representatives on NHS England’s Programme Board last summer for the Learning from Deaths programme (work commissioned as an outcome of the Mazars review). He received an email from a family advocate who said that families would be reassured by his involvement in the work. The first event he attended was a two day gig at the Oval in November. He walked out after two hours. The meeting opened with two apologies from NHS England – not for the fact that 75 bereaved families had to be in the room in the first place – but that no work had been done for last ten months and for the shoddy organisation of the original meeting. As the meeting unfolded, Rich felt he could not validate the process.

In December a further event was held in London with Jeremy Hunt and the great and the good. The unofficial erasure of any focus on the premature mortality of learning disabled people was completed during this meeting. Two years pretty much to the day from publication of the Mazars review. Hunt ploughing ahead with his misplaced belief that improving the process of investigation for patients more generally would improve the investigation of the deaths of marginalised patients. 

What about the work relating to learning disability related deaths? I and one other family member tweeted during this event.

“Ask NHS Improvement or NHS England” replied the Care Quality Commission. “They’re tasked with taking forward the recommendation relating to learning disabled people.”

We did. Neither responded. 

Certain people don’t count. Or worse.

They never have.

A full circle…

We woke this new year morning to the news that Toby Young has been appointed to ‘help lead’ the Office for Students (OfS). 

There is so much so wrong with his appointment… a quick search on twitter will reveal his appalling views, ill-informed commentary and actions while he tries to (ironically and pointlessly) disinfect his own timeline through a heavy handed programme of deletion. Relevant here is his apparent distaste for disabled children and associated flag waving for ‘progressive eugenics’.  (Improving the ‘genetic stock of the least well off’ in an attempt to improve the overall national stock…) 

Eugenics is, of course, eugenics as @Education720 points out: 

Woolf’s diary entry was written in 1915:

… we met & had to pass a long line of imbeciles. The first was a very tall young man, just queer enough to look at twice, but no more; the second shuffled, & looked aside; and then one realised that everyone in that long line was a miserable ineffective shuffling idiotic creature, with no forehead, or no chin, & an imbecile grin, or a wild suspicious stare.  It was perfectly horrible.  They should certainly be killed.

There are long, long lines that can be traced here. Plentiful dot joining between the desire for the ‘improvement of the British breed’ (Churchill, 1899) and the eugenics movement. The continuously poor treatment, neglect, bullying or abuse of learning disabled people in whatever setting – long stay institutions, the community, inpatient hospitals, home – by a range of individuals and professionals over the last century. And Young’s support for ‘progressive eugenics’.

Complex and complicated strands are interwoven into and between these lines; ignorance, maliciousness, systemic and structural processes, cronyism, fear, power, gender, economics, culture, power, politics, stupidity, greed, elitism, narcissism… the list goes on and on.

‘Progressive eugenics’ is a deeply flawed and harmful ideology that denies any recognition of the humanity, creativity, compassion, love, diversity, joy and brilliance people bring to society. I miss LB with an ache that hasn’t diminished in over four years. My heart contracts and eyes well up in a split second whenever I think about his gentleness, humour, generosity, curiosity and straightforwardness. Contrasting his obvious qualities with the bile that Young (and others like him) spew, with nonsensical reward and little censure, is unspeakably grotesque.

How is it possible that not one person, in a long, long line of influential people who can and should speak up and call this for what it is, ever does?