Of rage and light…

Overwhelming (and kind of surprising) support in response to remaining angry. For productive rage. That’s cool. Just got to keep up the brilliance stuff too. Luckily this seems to fall over itself. Truly extraordinary… For another week, the #JusticeforLB quilt is on display in Aviles, Northern Spain. With the #JusticeforLB bus and this exquisite piece of artwork by Maurizio Anzero.

No other words.

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20 thoughts on “Of rage and light…

  1. Yes, anger can’t be bottled up, and much as we don’t it, it’s normal and right and must happen.
    I know professionals who are angry about colleagues and services that fail us.
    But, yes, the brilliance is that there’s light on all of this.

  2. Yes and Yes.

    Over these long years while the repeated hideous stuff is happening, and all is being salted well – with the added vinegar of the very personal soul bashing – the barely tolerable ‘go away we are bigger than you’ crap – so steadily dripped on to families (mother usually ?) who ‘object ‘ on behalf of son/daughter……..precious relationships – all life’s delights,all creativity and all joy can get dropped over the side.

    Being so deeply in that toxic trench for so very long, without respite..nose down pushing that pea .and we don’t notice that we have none left.

    Anger comes and goes accordingly. Fresh abominations light the anger torch again….or it kills us off.

    Sharing here and on Mark’s blog, help us find space to rest a little..helps us share with people who listen and connect with us. Validate us.

    After communicating, here..for a while, we can be. who we are.

    Be who we are.. in all our colours.. – and ,,,,we can retrieve our anger.

    To carry on.

    Ready……etc..

    • Bear in mind this section from the Oxfordshire County Council Commissioner (now moved to other, religious, worthy related pastures) in the 5 page letter written to a couple of disability advocates:

      “I believe the blog is encouraging people who are distressed about a bad incident to put their story out in the public domain and I do not believe that is helpful to them. As it is, a small vocal minority are bringing up every bad story that’s happened in the last few years, and these are often misrepresented. I believe the blog is encouraging people who are distressed about a bad incident to put their story out in the public domain and I do not believe that is helpful to them. (I know at least three stories that have been on the blog that are partial to say the least) I find it frustrating that a blog can be used in this way as OCC takes the view that we shouldn’t comment, but it means things that are not true are being retweeted as fact.
      I do know that Connor’s death was horrific and upsetting, and I know his mother will never get over it. All that professionals like us can do, is to try and make improvements to avoid another death like this happening again. But I can say that, whilst you can minimise the chances, there are simply not enough resources for people to be constantly checking on services, and to guarantee 100% safety. And it’s not good for people to have their services constantly checked, or putting so many restrictions in place they can’t live the life of their choosing. And things can change really quickly in an organisation and it only takes a few minutes for something to go wrong. All we can do is to have as many mechanisms in place to pick up on problems and deal with them as soon as we are made aware of them. 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.”

      Sigh.

      • Let me just say this that in all the years my disabled son has been under the umbrella of the NHS, and the LA’s social services, honesty has never been one of their attributes.

        I have met wonderful people and I am still meeting them but you will find that in any safe guarding issue, they will circle the wagons and shut you out, even the lovely ones.

      • Well Sara I am happy to say that it was your blog that inspired me to start blogging about the dreadful happenings in the mental health services in north Wales over the last thirty years. My blog is now starting to build up traffic as I publicise just what has been going on. And I will continue to do so – particularly as yesterday an inquest into the death of yet another mental health patient in north Wales referred to the ‘many, many failings’ of the Health Board and the Board admitted a serious breach of care. And this happened after the Board was put in special measures in the wake of yet another mental health scandal – how many more have to die before the Welsh Govt admit that we have a really big problem here that penetrates deep into all parts of the health and social care system? As far as I can see your blog is a good deal more ‘honest and accurate’ than any of the deceitful nonsense produced by the many ‘regulatory and professional bodies’. I hope that my blog will be honest and accurate too – I certainly hope I never tell as many lies as have been told regarding the ‘care’ available to mental health patients in north Wales by those in positions of power…

      • Of course a commissioner would say that, as commissioners are the very people who do or don’t improve the system.
        Well, I think there are enough facts for a few Channel 4 documentaries or BBC Panoramas, for this case not being distorted or hearsay, and Winterbourne now feels like the tip of an iceberg.
        The whole case re Connor has been expertly presented by the injured party, month by month, directly and using legal channels, so denial that there was unacceptable bad care by one commissioner is .. odd.
        Of course there are resources to fund care, if you look at the huge payments for placements. So why were staff not available or attentive, or why was there no assistive technology where there was a known risk? And why were staff inattentive for much longer than ‘five minutes’? Are these ATUs not specialist places after all?

        Why does conference after conference on poor care waste money and make no positive change in quality of care? It’s because people don’t fundamentally care about others’ children – they might intend to, but they aren’t programmed to. So tragedy will happen. The sense of urgency isn’t there.
        So parents must be equal partners with MDTs, etc., 50:50. Parents must be decision-makers. I would always choose my parents to be.

        Did CIPOLD not say, that without significant people (family) present in the lives of people with disability, they were more likely to die slow and painful deaths?
        Family would have been at Connor’s side.
        People in ATUs need their families’ care, actual or advisory.
        I left my son’s care in an ATU’s hands, and he has new disabilities because I did not have my eye on him. Unpaid as I was, I would have seen what no paid others saw.

      • if ‘stories’ are ‘partial’ it is because people have held back on disclosing the most harrowing details.
        Those that feel able to do so will hopefully continue to openly and accurately give their witnessed accounts of grievous failures in health and social care resulting in harm done and wholly preventable death . Those comfortable to deny the severity of the failures by duty holders will voice obnoxious comment about ‘finding peace and moving on ‘ , until prosecutions take place

      • This is beyond belief. We need all our anger and everything else there is to fight such – again words fail me . – words fail me

  3. …sorry me again but.it .is important..

    For I must add, that now and again comes joyous respite, from a resolute professional or support worker.

    They are stars – all are dogma free – have sound common sense and true humanity. They meet my son and his family as peers. They want to know him and us. And they battle hard on his behalf. Where they can.

    They all recognise my son – and get on with doing their job, With the resilience needed. We are partners.

    But they leave us far too soon. They all do. Bless them.

    I will never forget any of them.

    If asked, and given time..by an honestly interested person (he has been round the block) ..my son can – with a huge smile -and – a joy filled story – illustrate, and name everyone of them.

    And if asked similarly safely – he will still bravely name and recollect all of the others he has met – .- sadly..and without the smile.

  4. And…(am on anger renewing roll…….)

    recently received…response letter… from most recent complaint to LA – LA that in the past – silenced him – brutally neglected him and more – for years – damaged him forever. Ignored chiding advice from Ombudsman while his ink still wet – and did much of it all over again.. .for years.

    This complaint – re yet more dodgy assessments, yet more neglect – numerous ignored crises – care plans long unmet – leaving most of support to family – and the numerous (ignored) legal interventions,,,,,

    And more.

    Offended response – read as lion to the about to be eaten Christian.- ..’ you would not be here if you had learned to be nice’.

    .

    • Yes. I recognise some of these experiences.
      Perhaps also, like me, you’d never sought attention and don’t want it even now, but there is no other way. Silence achieves nothing.
      Thankyou for describing so clearly.

      • FF2016

        I am terrified. Really truly terrified.

        ..they are really really scary. Yes I am terrified …and I am running out of time.

        Could be the flu.

  5. Weary mother, it’s normal to be terrified sometimes, especially if you’re ill and fluey, and it’s night, but in the morning my mother used to say it always feels better. She’d say that to you if she was here.
    You gave the example of Christians and lions, but look at who won in the end there šŸ™.

    Professionals are vulnerable too – there’s no them and us ultimately. None of us knows what tomorrow brings.
    I see ex-professionals in my work all the time, with dementia, etc., and they might think I’m powerful.
    This blog is about doing right for everyone.

  6. Sara: mother bashing: In the public domain: Mr Justice Charles’ Order October 2007 under the Mental Capacity Act, Court of Protection “SB shall be FORBIDDEN from discouraging MB from going to the Wincroke Unit or from co-operating in his transfer and his assessment and treatment there. SB be FORBIDDEN from criticising to MB the staff, facilities care and/or treatment at the Wincroke Unit” and another three forbiddens. “These Orders shall have a PENAL NOTICE attached to them.”. The Wincroke Unit was run by the Ridgway Trust, prior to Sloven. Martin was about to be sectioned under the Mental Health Act, and to be taken by force to the Unit if he refused to go voluntarily. Paul Bowen was present when these Orders, and the penal notice were put on me. The Win Croke Unit held none of Martin’s medical notes, and had no concept of what epilepsy is. I obeyed this Order.

    • Sara –
      Have just seen your tweet about nurses being coached to say that they were ‘scared’ of you in statements. This has happened to me repeatedly in my battles with the mental health services in north Wales – and some of the people who later claimed to have been ‘scared’ of me had actually had a very good relationship with me. And people who had never met me also claimed that they were ‘scared’ of me – well of course they were because they had been told repeatedly how ‘dangerous’ I was by people against whom I had made serious complaint. It was the senior people in the dangerous failing service who were actually scared of me, because I had constantly raised concerns. I know everyone else who contributes to this blog is coming from the perspective of being a parent of a LD child and it is clear that mother-blaming was rife when you have all tried to raise concerns – but exactly the same allegations and techniques were used against patients complaining about the mental health services in north Wales. On one occasion I said to a close friend ‘how have they got the nerve to do all this?’ And he replied ‘because they’ve done it all before and it’s worked’.
      There are clearly tried and tested methods of discrediting complainants – its almost as if there’s a handbook somewhere providing the guidance…

      • Yes, such common practice. For mothers, it’s embedded in the medical/social care notes from early on too. I was shocked to learn parents were surveilled by the staff in the ‘play room’ at a week long assessment we took LB too each year when he was a tot. I thought they were just there to help keep the kids entertained. Just awful.

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