Long lines…

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?

 

16 thoughts on “Long lines…

  1. I don’t know what I can say really Sara, except that I am angry … for you, Richard, all your family but especially for LB and the complete and utter disregard you and he have been shown.
    As for Toby Young … he has put in to words what this government really think … like employs like after all.

  2. Home rest seems like a good thing with so much still to face in this long struggle. I hope you are able to gain some strength back physically and mentally in this time. There’s s madness in expecting going back to work so quickly would be ok but I think it’s something people do when deeply traumatised often as it’s just a very crazy reaction to something unbelievable.
    Your description of the men in line and that bastard saying those words brought every horrible picture I have of fascism and brutality to mind. It made me shudder violently
    Who is this recently appointed second person? I am confused slightly by that. I would be in total fear if anyone with that mentality being in any serious position anywhere
    They should be in prison for incitement to hatred.
    Take care Sara
    Much love ❤️

    • I think Sara slowing down is a necessary phase to becoming stronger again. I’ve read about stages of grief, am no expert, but have had days where I couldn’t get up, and I haven’t even experienced total loss, though it’s a different challenge existing.
      I feel sure the mind needs to heal by detaching from the rat race and normal working life stop at least temporarily.

  3. Perfectly put. Horribly true. It seems like the world is slowly going mad, or in reverse. My daughter is 21, acutely vulnerable, at home with us. I want her future to be wonderful, not limited, confined or degraded. I wish you all the best in your ongoing battles, and will do my best to push for excellent care to support fulfilled lives.

  4. Sara you have not only lost your beautiful irreplacable son, you have campaigned and written and consoled and disabused so many people about the treatment of the learning disabled. This is a remarkable thing to do at a time when most people hide themselves away to grieve. And make no mistake your efforts will not go unnoticed – in years to come, the information you have so openly given to the world will be recommended reading.

  5. NHS Immune from Prosecution? Unbelievably, ‘The Guardian’ published an article last year suggesting Crown Immunity be returned to the NHS. This would render the NHS immune even from criminal prosecution in medical negligence and other cases. The implications of this are dire: one hopes there will be no sympathy for this idea amongst our political masters – of whatever hue.

    See details with links and leave your views at: https://999crash.wordpress.com/2018/01/07/three-up/.

    • Yes, I read this too. It suggests no accountability would be possible, which is against everything that’s good in this country, re it’s ideas of fairness and justice. And, it would affect every one of us, so there’d be a backlash immediately. How could the idea possibly work??

    • Jane – depending on the context, your comment is very harsh and upsetting for those who have lost loved ones with learning disabilities. I think you should explain!

      • I’ve read Dr Ryan’s book and have been reading her blog since it came to my attention a couple of years ago. At the time of his tragic death, Connor was an informal patient so had no restriction on his coming & goings from the dreaded unit.

        I understand that had he asked to leave then he could of, however the nurses could have held him under section 5/2 until a Doctor could have been called to “assess” (not that the Doctors at that unit could assess their arse from their elbow) Connor and a decision made from there. It appeared from the book that Connor presented no real danger to himself or others, so to hold him under section at that point would not have been in his best interest.

        As a mother to someone who has a learning disability the book resonated with me. Halfway through the book, I was filled with a sense of despair at the lack of knowledge, care, empathy or even basic human decency the staff at the unit provided and I remember saying out loud “Why didn’t she just take him home?”

      • Even if you thought it, there was no need to engage in mother-blame directly on the bereaved mother’s blog.

        Also, even keeping a loved one at home, didn’t guarantee safety when Sloven was involved. In one case, Sloven provided overnight respite care at the home of a 17-year old lad with Dravet Syndrome – he would have one or more seizures every night. The carer had not even received Basic Life Support Training and was probably not epilepsy-trained either. Read more at:
        https://999crash.wordpress.com/2017/04/29/epilepsy-rage/.

  6. Hi Jane,

    This is a question I’ve asked myself a 1000+ times. It’s a brutal question (as Geoff says) with broader issues:

    The consistently low bar that exists around the available support and healthcare provision that families are forced to accept and expect. In tandem with the learning disability trump card which allows, generates, sustains or obscures this low bar.

    Why such a subversion of expected practice (that someone becomes ill, needs and receives medical intervention) is enabled by the label of learning disability. A label which generates both so much and so little.

    How rarely anyone would be asked (in the event of a preventable death of a patient) ‘why they didn’t bring a family member home’ instead of receiving NHS treatment.

    And (even sadder?) questions around what if Connor had come home? Would STATT still be open and providing crapshite provision?

    I don’t know what else to say about your question. Of course I should have brought Connor home.
    Sara

    • Sara, at the time, your – entirely reasonable – view was, that bringing Connor home without first ensuring that the supports he needed were in place, would risk pitchforking him back into the crisis that took him into STATT in the first of it. That doing so would put him at risk of getting swept into the hugely risky criminal justice system. You didn’t know that STATT was functioning more like an incarceration facility than a health one. Whatever your suspicions after the tongue-biting/Bonjela incident, you didn’t know that, from the Irresponsible Clinician down, the staff’s professional knowledge of epilepsy was entirely lacking. The level of breezily unconscious incompetence was and still is, mind-boggling and barely believable; neither you nor anyone else could have suspected how ignorant – in all senses of the word – the whole establishment was. Nor were you anywhere near nasty enough a person yourself, to suspect that the person in charge could be so vindictive as to dismiss information that was clinically relevant to Connor, just because the information came from you and she had conceived a personal dislike of you. Requesting Connor’s admission to STATT, and enduring his stay there until home supports were set up, were both actions taken out of love and in desperation to swerve dire consequences. You weren’t to know that STATT’s incompetence would lead directly to the worst possible outcome. Nobody outside of STATT and its directing bodies – who, as it turned out, were sitting on a lot of relevant information as well as their hands – could have anticipated that. The workings of the institutions were far too opaque.

      I don’t think that you even *could* have brought LB home. Given the reluctance of staff at certain points to facilitate visits and contact, it’s impossible to imagine that an attempt to spring Connor wouldn’t have ended in some sort of disaster. Re-sectioning, or Neary-style proceedings to extinguish family involvement and bring Connor wholly under the aegis of the State.

      And with ‘could’ off the table, ‘*should*’ doesn’t even enter into it. You can wish with all your heart that you had just gone and got him. God, we all wish that, so hard it hurts. But ‘should have’? No. At that time, and in that place, liberating Connor wasn’t a real-world, do-able option. You knew it, and we know it. Not your fault. No ‘shoulds’. x

  7. Sara

    My son is an excellent hospital, has been since before Christmas. I have stayed with him every day, bar a few days. I live a distance from the hospital. He recently sustained an injury on the ward – an accident – which will delay his recovery for some weeks. He did not know that the excruciating pain he experienced was caused by a mishap with a hoist, and was not part of his treatment. I only discovered it when he told me, for he had told no one else, when I came back to hospital.

    When our sons and daughters come into any hospital they need people around who know them,. In a very busy ward of very poorly people, this cannot happen. Had a learning disability nurse been visiting my son, she could have gained his confidence, and he would have received treatment for his accidental injury much quicker.

    I could not and would not have taken him away from this excellent hospital, for he was/is treated there with competence and kindness . But, he now has two splinted legs. Where he initially only had one.

    Even with the best of care, our sons and daughters need help to understand what is happening. And where there are no parents or specialist nurses present – there will always be a degree of danger for them.

    Which in part may explain some of why so many middle aged people with learning disability, who have no family left to help them when they are ill, can die far too young ? .

  8. The ‘if only’s’ that plague mothers and fathers when their loved one’s care goes drastically wrong belongs in the dustbin.

    Parents whose learning disabled loved ones are in crisis need to have total help and understanding, not nasty digs at their reasons for asking for help. God knows how we beat ourselves up about the word ‘abandonment’. We need no more ‘judges’ for we already harshly judge ourselves. We feel helpless because we cannot put this right ourselves within the family and we need the help from professionals. In Sara’s case the ‘professionals were not doing what they were being paid for and it all went tragically wrong.

    Sara is courageous because although she was in pieces she fought back and her legacy is that more people are now aware of the NHS’s wicked underbelly. Almost mafia-like in the way it interacts with the grieving. Closing ranks instead of weeding out the wrong doers.

    She deserves more praise than judgement.

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