Days are passing. Slowly. Grindingly slowly. Helped by family, friends, colleagues. Helped by cards that continue to arrive, flowers, messages of support, daily dog walking by lovely tinies, E and M (despite comedic ‘hide-under-the-sofa’ or ‘run-home-at-any-opportunity’ Bess actions). The shared experiences of similar, or related, (harrowing) happenings both ongoing, or historical. Outrage upon outrage on social media.

And the funny stories (LB was seriously, seriously funny) keep coming. They all make me chuckle;

On another school trip to an outdoor pursuit centre, we were all sat on the minibus early in the morning, moaning how tired we all were. LB sat at the back being really cool, pipes up in a silent moment: ‘ I don’t think I’ve been this tired since the last time I went bed’.

The dude was a refreshing antidote to tired, taken for granted, stale and often pointless ways of being and doing. What an oversight (mistake, loss, tragedy?) to channel him (as so many young people like him) down a path characterised by deficit, disregard and (non) care/health jargon. A complete failure to recognise and value what he could contribute to society. The loss we feel as a family, underpinned by the collective sense of outrage by others, underlines how wrong this all was.

I received the set of social care notes today. Another version of events. One in which I’m a right old problematic mum. There is more recorded about my interactions with the various staff members than LB’s care (or complete lack of). My rage, frustration and distress jotted down clinically with no sniff of engagement or reflection. That’s another dimension to the lack of care documented in this blog. Where is the basic humanity? Where is the thinking, feeling health or social care member reflecting on what I was actually saying? Imagining what the experience must be like? Thinking about us as a family rather than LB as an atomised being? It’s as if the space for thought or thinking (and common sense) is obliterated by the weight of engaging with (non) care plans, risk assessments and nonsense processes. And staff, at whatever level, sign up to this model. The bunch of bloody sheep model.

14 thoughts on “So.

  1. My daughter spent a long time in an adolescent mental illness ward and I had the same problem with staff seeing me as the problem. I think your analysis is right: the system dominates their thinking, and very few of them had the insight to recognize that you were just an ordinary loving (and very distressed) parent. I found it so frustrating that if you talked to them about their own lives you would find they had kids of their own, and you had a lot in common, but they couldn’t seem to make the mental leap to imagine what it would feel like if they were in my position.

    Try to look after yourself: long journey ahead I fear.

  2. I keep getting drawn back to the old sociology of professions stuff and thinking how much this jargon is a result of the under/non-valuing of learning disabled people and social care more widely. The lower status the profession, the more jargon they invent to make what they do sound more impressive than it actually is. Then it becomes a habit. Then, as a professional, learning the lingo is the way you prove you ‘know’ (even if you don’t know anything). I wonder what would happen to the jargon if we all started to value LD people more?

  3. I’m glad you were sent the notes, even if they were just another disappointing piece of the jigsaw.

    I know a (biggish) handful of really dedicated, ‘go the extra mile’ social workers who love their kids (not ‘caseload’). They’re usually keen, passionate students or just genuine people who manage to wade through the crap and hold onto their humanity. Then the rest of the time I spend baffled, listening to the jargon, hearing a children’s home where children spend years of their lives being referred to as ‘the unit’, and hearing professionals moan about parents who care too little or care too much. Then they let 16 year olds move into ‘independence’, in flats of their own in areas of the city that you wouldn’t want to walk alone in as an adult. And then wonder why they don’t turn up for their GCSEs.

    It doesn’t make sense. I know they work hard, paid too little probably and they have too big a ‘caseload’. But at what point do you lose the compassion and empathy enough to forget you’re working with real people? And if you do, maybe it’s time to move on.

    • When my 29 yr old son died in hospital “for his own safety” (ironic eh!) The police were not called, there was no investigation and his possessions were returned to us in a black bin liner marked “NHS Household Waste” …so managing to get notes is progress! I was refused an investigation by PHSO as “Not enough notes”….isnt that the investigation? WHY? 8 YEARS later the circumstances re the “avoidable death” of my son remain unresolved! Compassion and Empathy appear to be in short supply!

  4. As someone who has worked in health care services for years, but who also has very personal experiences of the failings of the system, I have seen, in great detail, both sides. The ‘good patient syndrome’ mentality – be quiet and get better, NOW – is wide-reaching, not just in LD services, but in mental health, physical health and substance misuse services. I think it has many levels and depths, and although I know your experience has been on the receiving end of this treatment and of a greater personal depth than staff will experience, I also credit you with the intelligence and compassion to understand that working as hard as you can in circumstances that you know fall well below what you came into this job to try and achieve is both demoralising and depressing. And if you fail to comply – or to submit to ‘good staff syndrome’ – you are shown no mercy. Believe me, I have tried to battle systems and bureaucracy for years – and bureaucracy won. The complaints I put in about horrendously poor standards of care got me labelled as a trouble-causer and banned from working in certain environments; when I raised the issue about the unfairness of the commissioning process, which meant that I had an unsafe number of people under my care while other workers had less than one fifth of my caseload, I was told by the people at the top of the tree to keep my head down and my mouth shut if I wanted to keep my job. The system is crushing, and not only are the patients and their families expected to conform, the staff are too.

    Despite this, however, I like to think I never lost my compassion and humanity. It may have meant I had less time, and possibly became frustrated more quickly, but when someone asked for my help, they received it whole-heartedly. Unfortunately, compassion is difficult to assess in a job interview. Especially when the people interviewing don’t understand the concept themselves.

    I have to say, the worst case of this I have encountered was a client of mine whose daughter had an eating disorder. By the time the GP acknowledged there was a problem, she needed an emergency admission to a specialist unit and had to be fed through a tube. Part of the disorder (you would expected them to have known this) is to fabricate, lie and deceive – and the main target was mum – and so the unit not only banned family visits but referred the family to Social Care under safeguarding procedures. After an awful few weeks of being investigated, having to defend herself, and being allowed no contact with her very poorly teenage daughter, it was proved that the girl had been lying to try and get back at her mother for putting her in the unit instead of condoning her behaviour. Again, there was no compassion, no-one was listening – and the presumption that the medical staff knew better than the girl’s own mother meant that the family were silenced, devalued, and their views ignored.

    I don’t know what the answer is, Sara. Working in healthcare is hard, so hard that, despite years of training and it providing the only income I have, I am getting out. And believe me, I am no push-over. The way staff are treated means that the care that is passed on to patients is often sub-standard. Families that have an opinion cause more work and so their views are minimised. Tokenistic ‘service user involvement’ exists only to tick boxes – no-one wants the extra work it will generate. I am so glad that someone as intelligent as you is here to expose the system for what it is. I just wish you hadn’t had to lose LB to do so.

  5. Why, oh why is the ‘accredited expertise’ of practitioners privileged over the ‘lived experience and expertise’ of parents? It’s time to stop sidelining those who know and love their children and want what is best for them.

    Equally, it is time to stop sidelining individuals because they are seen as deficit in today’s society – just how boring would be a society made up of clones or Stepford Wives!

  6. Couldnt agree more! I have been “a stakeholder” “an end user” “a depressive” (when I was seriously ill via misdiagnosis)….and this triggered my sons MH condition! Who listens to those that know and love their children. It takes courage to stand and speak and it also takes courage to sit and listen! Show some courage NHS!

  7. What you’ve said about the notes sadly doesn’t surprise me. The notes written about my mum, when she was assessed for NHS funded care by social workers, were very similar and rather distressing to read. Most of the notes were not about her clinical needs (which they got woefully wrong, suggesting she had a mild stroke, as opposed to being in the advanced stages of progressive MS), rather about my Dads “Irish temper”, my mum’s “Irish temper” (she was in pain a lot so this was actually due to her condition!), our immorality (because we didn’t ‘want’ to look after her – actually having struggled alone for twenty years and being at the end of our tethers we did what you did and refused to have her discharged until a proper care plan was put in place), how we had and continued to neglect her… name it! It was all utter shite. Amazing that you can base life-changing decisions on this rubbish that can not be challenged as you know nothing about what is being documented until long after the fact (i.e. the consequences for us were the local authority trying to take our home away when my Dad died, the consequences for you much much more terrible). We did actually win a legal case firstly against the local authority to retain the house, then we took the PCT to court for the above. It turned out my mum was eligible for funded care all along and they had to pay everything back….and we were put through three years of hell for nothing. They never apologized though.

  8. keep holding those thoughts of the real LB Sara, the LB who wasn’t a ‘patient’, ‘service user’ or ‘serious case review subject’. He was never theirs to label.

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