What a fucking shambles

Jane Cummings has responded to Bubbgate today. Turns out the Plan isn’t a Plan after all. Well not one that says ‘We’re going to do a, b, c and d’. Eh? She rapidly counteracts Bubb’s posturings. One by one. Awkwardness on awkwardness. Has someone hacked the world?

So continuing with the complete failure of anything Winterbourne, we’ve now had the wastefulness of Bubb’s play breakfast meeting in which fuck all was achieved other than capturing in the headlights the CEOs of the big charities who should know better.

How could you sit round that table?

How could you?

Meanwhile Jan Tregelles is working the room, trying to pick off various vocal tweeters and schmooze them in private. More fucking awkwardness. Or maybe just typical spin action. Just out of interest Jan, where were you when LB died? No sniff of getting in touch then. I despise this action aligned with self interest that completely ignores the pain and suffering of LB and countless others, and their families.

It’s time this mess was brought out from behind closed doors and dealt with openly, transparently, and with learning disabled people and families on an equal footing. In a Bubb free setting.  It’s clear, given we’re three years on now from the Concordat fanfare, you don’t have a bloody clue. None of you. And if you did, LB would be travelling in that limo right now, heading for his leavers prom. Enjoying his turn on the red carpet.

I’ve had enough. I don’t want to feel such utter and abject pain anymore partly because a bunch of overpaid, overly self important and ultimately ignorant people can’t stop performing, prevaricating and spinning such complete bullshit.

You make me sick.

26 thoughts on “What a fucking shambles

  1. Well said Sara!! I totally agree….100% It’s time this mess was brought out from behind closed doors and dealt with openly, transparently, and with learning disabled people and families on an equal footing. *parity of esteem”and all that! We aint going away!

  2. I could not agree with you more. I see this every day. I have stood by people for many years much to the anger of many so called professionals. We have found solutions by being decent and thoughtful about people. When people are really off their scale they need some damn good people around them to give everyone time, space and masses of understanding.
    It’s no use trying to explain the mean and cruel letters and actions they take. Even now to Lynne over her beloved son Chris, just so cruel, reminding her where the power lies.
    I’m with anyone who us saying fuck all this load of complete shit and for Gods sake can’t some people, who are willing to give their time for nothing, get together and sort this damn ridicules load of procrastination and arse wipe out. Swearing has really helped!

  3. Yes he should be in his Limo tonight, yes he should be walking his red carpet laughing sharing drinks with friends, Just another reminder what has been taken from a lovely guy! Swearing does help and we are walking right beside you.

  4. I was best man at my brothers wedding while LB drowned it the bath. I have my own autistic dude and when I read what had happened I wasn’t just incredulous but devastated and totally amazed this hadn’t immediately been a widely reported tragedy but then, why would it? as you say, disabled abuse/deaths/crimes are non events, below pet level. You are amazing and are speaking for all of those who don’t have the wherewithal to speak up, whether that’s dudes, dudettes, or their parents, I can’t bear to think about the ones who have accepted the word of those in charge and thought their children died natural deaths whilst in the ‘care’ of professionals. I recently had to have a meeting with a parent of a bully who assured me he understood special needs as his son had a bout of alopecia, yes, alopecia WTF?! says a lot about autism awareness. sadface.

  5. Thank you Sara I follow your blog and every time I attempt to leave a comment words fail me I have my own beautiful dudette I have fought for her rights and quality of life for twenty eight years and having to deal with the system has been unbelievable they are all an arrogant bunch of arse wipes we had one decent social worker who really knew her stuff and supported us well. The word personalisation really gets to me the way awards are handed out to the so called “care industry” I would like “them” to spend an unannounced day or two in some of these hell holes. My daughter would I am sure welcome any one of them to afternoon tea when all the residents are in and arrive unannounced to give a true picture of the chaos that would drive any sane person mad yes there are some good examples out there but too many shite ones. These dudes have personalised plans “what’s working and what’s not working” choices are limited by availability of regular staff and whether there is a driver available it all looks great on paper but rarely happens out to day service and then back home for a good long spell of afternoon and evening tv. Always agency staff at week ends who may or may not know the person they are supporting well. Why do they have problems recruiting and training and maintaining good staff it costs twice as much to have poorly trained agency staff! You can be sure of a well rehearsed performance when family visit. We have been bringing washing home for almost three months now as the washing machine broke and as yet has not been replaced the housing association charges the tenants for white goods even when they are not in place! A whole year with no gardening services all tenants were charged for this non existent service when you ask about this and other outstanding repairs you are fed utter garbage why should these dudes have to put up with this? Both the housing association and care providers have own prestigious awards for their outstanding service to learning disabled people and specialise in support for people with autism. Their CEO is apparently passionate about personalisation and has written an award winning book about this topic I would like him to visit unannounced and stay for a couple of days and give me some feedback. Things will never change whilst people at the top lack the evidence and experiences of the people we care for and love I am with you and LB every step of the way we must have change for all the dudes.

    • Hi Vicki,
      That sound pretty crap, but tenants have rights ( The Real Tenancy test). Or if not a tenant as such, The Care Standards Act has to apply.????

  6. Sara I can only write about LB to say that he is now part of my life. As for the rest of it- what do we do??? I have just received a psychiatrist’s capacity assessment for Martin which doesn’t have a swear word that covers it. However I do have permission to publish, along with the accompanying order. I am going to need everyone’s help. For the record Martin has Lennox Gastaut syndrome epilepsy and is in a residential home in Cardiff, costing £2400 a week. I think I need the BBC or a newspaper to help with a campaign. GodI am tired

  7. Shirley. There are so many people in this terrible situation. Are you Welsh because Cath Dyer is also in Swansea fighting for her daughter. I have started a page called I do not need to be locked away I have Autism to try and make these awful situations more public. If you want to email me I’m hayneknight2@me.com. We must join together to fight all of this.

  8. These stories need to get out there. The next generation needs to hear them loud and clear.
    Those of us who are are strong need to support those who are going through this shit as we know that is where any of our own young people can end up and it could be us in the same position. Those of us with the resilience have a responsibility to come together and challenge the authorites. We need to be driven by the fire in our bellies to break down the complacency that is around us.

  9. Boy do I agree with what you say… It is a never ending fight and the new Care Act is going to do sod all for Carers and families. The legislation has “Parity of Esteem” the regs consultation however has so many escape causes for local authorities its a freaking colondar and Carers will continue to bear the brunt of the support net needed for this country with tokenistic claps on the back saying how respected we are..

    I said to Lord Fraud one day had he got a broom so I could shove it up my ass and sweep the streets as a job while I attend meetings to help them (unpaid), Volunteer for local Healthwatch, and be a full time multiple carer for my family (all in all about 80 -100 hours a week.

    What they do then – make me freaking liable for a 25% bedroom tax deduction from benefits which equates to about £2 per week for food.

    The so called know it alls representing the major charities have not got a clue or reality and are only trying to get their noses in the trough as much as the corrupt MPs – families also have an agenda – we want to work with other families and people who do know what they are doing to get this right.

    My brother was we believe sexually abused whilst in the care of the local authority for respite decades ago – when reported to the police we found that there was no record of him ever going to the home ever. He not only went about 20 times over a 2 year period a social worker tried to force him to go back there 5 years later and he was so terrified he pushed a female worker over in his terror to escape the place. He ran out of the building to the social workers car. He refused to get out of any vehicle for many years that parked within a mile of the place in case people tried to force him to go there again. Recently a young domiciliary worker started to support him but he was so terrified we had to ask the agency to replace him – we think it was potentially that he resembled the person that had hurt him over 20 years before.

    We cannot leave the planning for our people in the hands of so called professionals whether the statutory or third sector (they only care about the money) it has to be co-production to get things right for individuals and while I have breath in my body that is what I will fight for.- we have to get it right for all including the families that are supporting someone who needs their support..

    • Mencap and charities like them have abandoned us. They are receiving money from the government under false pretences, They do not care about their members, they only care about themselves. How many people who helped to draft the White Paper ‘Valuing People’ have interests in the third sector that are cashing in in the new social care system? It would very interesting to know.

      We need a champion who does not care about their image. An organisation that does not believe in cronyism (the Bubb breakfastst club). An organisation that does not cherrypick who it helps, so that they can use them as ‘success’s’ in their advertsing blurb. An organization that does not demonize day centres and the families that still want them. Finally we want a champion that listens, listens and listens.

  10. Yes – sadly the great and good trying to re-shuffle the playing cards won’t hack it, but it’s what they keep trying to do. I was incredulous to see Bubb’s appointment but then to read his blog was insulting. It too often feels like those with power trying to retain the power, but it feels like abuse. We have to believe it can be different and the more people won’t let people get away with it and continue to speak out TOGETHER we have a chance. We have Sarah and your networks and the campaign that has increased awareness – need to mobilise; we have CHANGE and their ‘Voices, choices and freedom’ conference demands to the DOH, Minister etc; People First England’s voice and inclusion at the Party conferences; we have the Campaign for a Fair society’s call for action; H&SA’s “There is another way”. We need to make sure we all connect – we do speak with one voice on the need to close institutions, bring people home and stop more people being sent away…is there a chance with an election on its way to get any political will behind this – there have to be votes in us!

    • My thoughts exactly, and have posted comments accordingly but I think people are to overwhelmed with their situations to be able see the wood for the trees in all this, could discuss further if you are interested rgcamgb@hotmail.co.uk

  11. Pingback: Hail and Farewell | Who By Fire

  12. Sara, Rosemary,all
    I agree.
    I am a very old oldie. We oldies have climbed the Social Care Everest over and over again, without oxygen or Sherpas. And we had to learn and relearn the ever evolving ‘Tibetan’ of Social Care speak. As a twenty year old in the mid sixties, with a newly born ‘mongol’ I was offered the Hobson’s choice of the costly, to the state, institution. We had a choice of bin; all in timely fashion exposed, discredited and shamed….and then expediently sold for loads of cash! We mums and dad’s built all the something better, from nothing at all. At the same time we studied, and studied some more. We raised money, we built and funded group homes ourselves. We researched and researched and learned and hoped to have earned enough to be heard and seen.

    Now today, we have the ‘joy’ of looking at two of the newest bone starkers of all the naked kings: a myth called personalisation and brazen cost cutting wheeze, called ‘non building based’ services. Personalisation means us/mum and dad doing it all plus the admin on fewer and fewer pennies, and the other naked wheezy thing thing is a seat in the park in the rain for the loser and a self funded seat and bacon butty in a greasy spoon, with an equally bored zero hour agency worker, for the winner.

    And we are still outside, unworthy of membership of the ‘club’ set up in our son’s and daughters names.

    My son too was dreadfully damaged and hurt (for years). I was invisible and unheard. He will never recover, nor will I. I I failed him. …..in all the empty process’s, for the end point of no justice or change for the better.

    One big hump alongside all the rest remains for us very oldies who have campaigned and fought our LA’s all these years. That is fear of repercussion on our sons and daughters, for us being such a long term pain in the LA’s arse. We are on the edge of a high diving board looking down, fearing the hurt to them if we jump publicly. But jump we must if we are to do this together.

  13. Margot yes the LA will get back at us through our son’s and daughters. They will go to any lengths, including stopping contact. And the Court will uphold them. I had a penal notice put on me by the Judge if I “influenced” Martin. I hope to publish the judgment next week

  14. One of the scariest things I read was a CoP judge who said: ” I have no reason to doubt the Social Services account….” (which was wildly at odds with what the parents were saying.) Maybe not, in that case, but how many of us would share that view so easily? Parents and other carers too easily cast as the problem. Why?

  15. Lizzie I said above – they are all corrupt beyond imagination. LB died and “they” said natural causes, and Sara has to deal with it, and after a year we have the above blog. Its something to do with power, but I have heard rumours that the LA are “trained” to always win. The Court of Protection is supposed to protect ha ha bloody ha

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