A bunch of pests… and humanity

Chatting with Rosie earlier. She reflected on how, after 2.5 years of (relentless) campaigning, things had really started happening over the last two or three weeks. Various people also sent emails/messages to the Justice shed today, including Andy who wrote…

What a bloody brilliant thing to see front page of The Guardian. So just to reflect – in the space of about 10 days you made front page of The Guardian and The Mirror, loads of lead stories on all the big BBC hitters (and the ITV ones), triggered an urgent parliamentary debate and, most importantly, brought together 337 hand-crafted colourful, brilliant gingerbread men to remind everyone that this is lives we’re talking about, not statistics.
Not too bad for a bunch of pests eh?

guardian front page

Yep. It is bloody brilliant. And we have been relentless. It has been a relentless campaign. Luckily dotted with laughter, spectacular contributions, solidarity, magic and more. At the same time, instead of (hideously, over complicated, inefficient and costly layers of) quality assurance/regulatory processes uncovering this scandal, it took ordinary people to just say ‘Eh. There’s a strong whiff of something wrong here. It needs investigation.’

It’s obscene that  we’ve had to fight so hard to get this far. It ain’t our job to do this. Far from it. We should never have had to have spent the countless (countless) hours we have working to get some sort of accountability and justice. None of us. I can’t imagine what the collective salary is of staff in Sloven (and other Trusts), NHS England, the CQC, Monitor and the Department of Health who should have spotted that people were dying way too early, with no investigation into the cause of their deaths. [Howl].

Why didn’t they? The findings of the Confidential Inquiry into the Premature Deaths of Learning Disabled People (CIPOLD) was a pretty big red flag in 2013. The government decided to ignore the key CIPOLD recommendation and didn’t set up a national body to examine these deaths. A cracking decision. Leading to the eggy faces we’ve seen in the last week or so. With plenty more eggs lined up. 

Mmm. This was after the public outcry about Winterbourne View and that embarrassingly expensive and ultimately pointless work programme that unfolded, painfully across a few years and then disappeared digitally after the election this year. Ouch. So many organisations/charities signing up to the ‘glory’ back in the day. And little or no public reflection on this collective failure… Astonishing. Meanwhile, people continue to live non lives (or worse) in these hell hole units.

Here in the J-shed we’re pretty battle weary, scarred and totally fucked off by the combination of a lack of integrity and guts, arrogance, dismissal, closing of ranks and suffocating overriding superiority that seems to circulate around the senior levels of the various public sector organisations and government*. The battle to publish the Mazars review just one example of this. Detailed at length on these pages.

For any of these salaried staff, particular those at senior levels, [excluding Katrina Percy and the Sloven Board who clearly ain’t human] there is no mystery here. As Tommy said in The Tale of Laughing Boy, it’s not rocket science. There’s a lack of understanding and recognition that people are just people. And that certain people shouldn’t die (conveniently?) years before other people. Stripped of humanity, dignity, love, respect and value. In both life and death.

The answer? I dunno. A good starting point may be to get over yourselves. Go and hang out with people who ain’t the same as you, your family and your mates. And start to recognise colour, diversity and difference.


*There are clearly some brilliant people in these roles. Just many more who ain’t.



12 thoughts on “A bunch of pests… and humanity

  1. I truly admire your strength, bravery and determination. You have worked soo hard and I hope that no one will have to face such agony again. You are my heroes and you have shown that people with learning disabilities are human and deserve respect and dignity. In fact, due to their disabilities, they have the right to be protected and should be treated with even more care not as second class citizens!

  2. As you say it should have been spotted much sooner by those paid to investigate.
    It has been great to see all the press coverage over the last few weeks, down to the dedication, hard work and sheer determination of the grieving families. I have to admire people who at one of the worse moments of their lives find the strength, courage and determination to fight so hard for the truth and to stop it happening again. It is amazing that after all of the heartache, stress and pain of the fight to find out the truth about why a loved one died that you and the families continued to push for meaningful change.

  3. Still nothing from OCC which I find odd. So much for LA`s being made to be more accountable for the services that they commission, so say the CQC. They must be feeling a tad sick by now, if not just plain embarrassed.?

  4. ….and what we certainly do not need is any more public money being spent on reviews.

    They do not change the lives of people with LD. How many health professionals will change their attitude to people with a learning disability because of a review? How many LA’s will suddenly have the money to commission more care? The only people who get any value from a review is the people being paid to write it. The Winterbourne View saga is a perfect example of this utter waste of money. There is something obscene about the big boys being paid big bucks while the people they are writing about still languish in unsuitable unsafe non meaningful care situations without an ounce of quality to their lives.

    No, sod the reviews and let the government put their money where their mouth is and start giving money to the organisations and the good people working for them that are trying to improve the lives of people with an LD. They are out there.

    • Pauline – not sure throwing money at the problem is a good idea unless you can guarantee that it goes straight to the good people: otherwise it just gives the recipients more money to waste. Reviews have their place (would we have got this far without Mazars?) but only if followed up by removal of those found at fault (KP and LS), law enforcement by the police and robust, effective regulation.

  5. I’m not surprised you are completely burnt out by this experience. There is such a strong feeling of outrage now; I wonder whether this could be extended nationally with local groups of LB Billers. I for one would be keen to meet with like -minded individuals in my local (and largely semi-rural) area in the hope that we can hold services to account on a local level whilst you guys in the core-group focus on a national level.
    Sending you a big fist bump and hopes for a peaceful Christmas x

    • Excellent idea, Ever hopeful.

      Can we be sure the good people are still there? Or are they ever going to be permitted to be the people we need them to be?

      Billions of pounds are tipped into the Public Sector every year in consultancy to loose the grip of the current oligarchy. Not a chink.
      Partly because all the professions are very POWERFUL and protective of their self allocated right to measure their own performance.

      The Services are a grave yard full of the careers and the health of the many good, paid and un paid, people who have spent their lives learning new ways to approach this cemented in intransigence.
      Every new expensive piece of learning, aimed to improve lives of vulnerable people, is immediately morphed into a POWER bog of language securing in the status quo.

      The answer is to give real influence and POWER to people still motivated to clean out the current very dirty top stable. That is the ‘old boys and girls’ revolving recruitment door of passing the POWER parcel from pal to pal.

      The people responsible for permitting the neglect, abuse and the killing our sons. daughters, and mums and dads, brothers and sisters and their friends, (however this happens) should be tried in court. If they are innocent they will suffer no penalty?

      Why are they permitted to decide to stay stay in post? (KP) Or creep away with a fat pension to do it all over again some where else ? Justice is not seen or served by a ‘sorry learned’ letter, in any other context.

      If things are to change we mums and dads,granny and grand dads are in it or the long haul, and we need to to support each other in any way we can.

  6. I make you right Weary Mother.

    It seems to me that these people who have jobs that give them power have a warped sense of right from wrong. It is different from the rest of society. Southern Health knew they were failing but learning lessons was not on their agenda. The lives of the people concerned were viewed as expendable. However, because they believed all the other health trusts were doing the same (accordinging to their get out of jail card) then that exonerates them from any blame. Just like the MP.s expenses scandal. Everybody is fiddling in Parliament so that makes it right? Lets all go with the flow then no one gets held to account. Both these examples shows the utter contempt they have towards the ordinary man on the street.

  7. Pingback: Trust(s) and scandal | mydaftlife

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