Todays #justiceforLB advent dedicated to older parents got me thinking. Why don’t the main charities involved in the work around closing ATUs sign up to a ‘ditch the bullshit’ model? The Winterbourne Concordat in its various guises achieved nothing. Stephen Bubb and his brekkie chums achieved nothing. This week yet another CQC inspection found brutal and inhumane practices at Calderstones NHS Foundation Trust. [Sharp tweeters picked up instantly that Calderstones actually bid for the Ridgeway but were pipped at the post by Sloven, both miles from Oxford…]
That this latest CQC report barely reached the British media is no surprise. But it did generate a Guardian piece from the holders of learning disability wellbeing in the UK; Mencap and the Challenging Behaviour Foundation. Now I have no doubt that both organisations provide invaluable services/support for families/learning disabled people but I increasingly think the bland and repetitive statements that they trot out, relating to Winterbourne type stuff, do worse than achieve nothing (I’ve added a list of selected lowlights at the end of this post).
[Oh my fucking gawd.. what is she doing in the Crimmy break criticising Mencap/CBF???
Bear with me. These organisations shouldn’t be above challenge and should really encourage it…]
I have three particular issues with their latest missive which characterise their typical offerings.
1. The positioning of these organisations as having some particular expertise/knowledge that no one else/organisation has. This is nonsense and I don’t think charities should big themselves up.
2. The framing of this latest travesty as a ‘sharp reminder’. No ‘sharp reminder’ can possibly be necessary given the list of atrocities that have occurred and to suggest it is, kind of hints that some question remains about this.
3. Meaningless, throwaway statements. Most people have probably never given this a thought. Many are probably unaware that such barbaric provision exists in this country. And I’m sure many couldn’t give a stuff. And it must be that many of those involved in current provision (either providing the care or commissioning it) think people are receiving ‘good care and support’ (for them).
Given the high profile of M/CBF, and the almost impossibility of getting any coverage of learning disability related issues in the national media, wasting opportunities to raise awareness about the latest shite exposed with such nothingness is off the scale of unacceptable. There is a consistent lack of understanding, information and making connections in M/CBF missives in this area that means they completely fail to pack a punch (or do anything really). Dunno why, given the resources they have to play with.
It wouldn’t have taken much, for example, to go back and see that Calderstones was actually under a Monitor enforcement notice after abuse was uncovered in 2013. The Trust was forced to take action and had a management change in December 2013. This makes the findings in this latest CQC report (the inspection was conducted this summer) even more horrific. And makes the bland engagement and nonsense knowledge claims by the key charities in this area even more unpalatable.
So how about ditching the bullshit and spin. Stop releasing press limpments ‘calling (urgently)’ for this, that and the other. And actually do something.
What you are doing at the mo clearly ain’t working.
mydaftlife 
Charities are big business, and highly political, the executive/ directors are ex social services/ quango etc, usually labour,lex council leaders.
In 2011 their average salary was over 80,000- at least. 20, paid over 100,000,
Charity accounts are now more opaque than ever, via the Charity Commission website.
In 2010 the sector was worth more than 183 billion in income and assets , all tax free, and all unaccountable.
You cannot sue a charity for its services, or provided they comply with the accounts rules, their use of money.
All is effectively for profit, just recycled. Many are now incorporated associations limited by guarantee, they are big business, just not quoted on stock exchange or AMT.
Check out the little I could manage to get published on their subversion, and control by government in 2006,when the Charities Act, purported illegally, to give the Charity Commission , rather than the courts, the power to decide charitable status,allowing them to destroy ad hoc, by removal of status,, any non politically correct charity. See Charity Matters in NLJ on web.
Their patrons, check them out, are similarly political, Cherie Blair is Scope.
Scope paid its executives 620,000 per annum by closing downScope homes in 2009, and spent millions on PR, rebranding- they love logos, and advertising- it increases their visual profile, and therefore fundraising..
Barnardos abandoned all those thousands groomed in Rochdale etc, for the lucrative world of adoption, and now have jumped on the bandwagon of counselling those they were created to protect, as government money is available, as a sop to the horror of the abuse.
NSPCC is a huge government mouthpiece and educator..
Charities go wherever the money is, spend it top down, and then look for more.
NAS were the 8 th largest charity , Huge amounts were ploughed into them by Blair. I wonder why ??
I can speak from experience, 18 years of it, They do nothing for the autistic, except make money out of them. It was getting a bit dodgy for them in 2008, and as a member, I was constantly cold called, by high octane pressure people..
So their being able to build, and run independent living uniits, was a godsend, as a guaranteed source of income for the life of an autistic, making big profits, on the backs of poorly paid care workers, when the Mental Capacity Act 05 recently implemented, forced all autistic to live in them by court order.
They made over a million on my daughter’s enforced, abusive care, with no deduction in their 177,000 per annum, for the third of the year, she spent at home We got 20 per week, and had to pay for her clothes and pocket money— all is commercially aware..
They charge/ed £2 for a card you can show to show your child is autistic, ,
The purpose now of’ ‘charity’, the small decent ones are starved out, is to hijack a cause, for their own purpose, which is mainly to help themselves, and implement, and promote government policy.
I believe Royal Mencap cherry pick who they want to help. Usually it is the cause that has been in the media. Jump on the bandwagon, it’s good publicity!
When day centres were being scrapped and ‘out in the community’ services were being introduced, they shut their ears and hearts to the people who could not accept changes to their lives. Their response was quote ‘we cannot be a critical friend to everybody’ In other words bugger off and let us get on with building our empire.
I agree that their claim to have special knowledge of cases of abuse and neglect is unjustified. I was also pretty surprised when they claimed to be supporting you after LB’s death as I remember they were quite unresponsive.
I find it hard to understand what these (and many other) charities have become. How gave they turned from passionate campaigning organisations to corporate structures paying ridiculous salaries. If a CEO is really passionate about his or her charity how can they bring themselves to accept such huge salaries and so take money away from the charity.
I don’t know why everything (except the LBBill) – long may it continue – has ground to a halt. It’s not just the ineffective statements but the winterbourne group and now the Bubb report. It’s like there is a constant steady drip of stultifying glue in the background – is it psychiatrists warning that people are too difficult? no-one being willing to foot the bill? the increasing fragmentation of the NHS? people just shrugging their shoulders and saying it’s all too difficult to do?
Sorry rather incoherent post – it’s like looking into fog.
It very simple, its about venture capitalists, making money out of mental health.
Winterbourne was owned by a private venture capitalist/ private equity group, was it not ?
They would be getting at least 3,500 to 4,000 per week, for such deemed difficult patients.
The huge flaw, and conflict of interests of care of autistics for profit, is that the worse they are made by inappropriate care, the more they earn for the carer.
We know Leo’s son earns 4,500 for ST Andrews in Northampton , and in the sunday times first sunday of November, NHS Englands leaked report, suggested, unbelievably, cash incentives be paid to encourage the NHS doctors, to release the 900 autistics, kept long term, who have only been highlighted, because an audit revealed, that no one knew, which authority they came from, and should pay their bill.
So much for ‘do no harm’..
Norman Lamb in 2012 after Winterbourne, in a financial column, warned the private care investments would take a hit.
The interest in the Bill, l think, is because, as is usual government modus operandi, an apparent laudable reason, to move the autistics to from the NHS hospitals, to private independent living units or similar, so venture capitalists, can invest in them, and get the 4,500 paid per week, or maybe slightly less,. This, just for effectively drugging a person, and having them escorted everywhere by 2 zero hour agency workers.
We also have to consider, the huge use of, and advantage of the autistic as pharma cows,- as no one has a clue about autism- most are already on enforced expensive anti psychotics.
The poor girl under the chair in the Winterbourne video, had her nose pinched to insert a rispiridol tablet in her mouth.
See my blog post Big Pharma , Big profits and my next is on the horror of the Risperdol/done scandal.
This is all very obscene, as about making profit, out of the vulnerable, and the autistic are by the nature of their disorder, a huge source of income, as enforced pharma, and therapy cows,
This can only have been the long term plan, as they were included in the MCA 05, and then deemed incapable of making decisions, so anything can then be done to, or with them.
So true Finola.
I also believe that the psychiatrists who initially authorize the locking up and medicating of people with LD should take some blame too. Where was the aftercare and monitoring of their patients? Surely doctors should be looking into whether the drugs they are administering are working properly.
People with LD are getting a raw deal from psychiatrists. Who is challenging the safety or the efficacy of these drugs. Certainly not the patients. Certainly not the underpaid and overworked (or in some cases downright lazy) care staff. Where were the psychiarists when all these atrocities in Winterbourne and Calderstone were happening? They authorized their incarcaration, they prescribed the chemical cosh. Where is the aftercare?
I still find it hard to believe that this is so much about money and not good intentions gone wrong,. I used to believe that people entered the healthcare sector because they wanted to help make people’s lives better.
Reblogged this on My Blog and commented:
Not all that ‘well up’ but thought this piece both passionate and informed. Personal experience of local authorities confirms my opinion that professionals are bound by unworkable systems. I hope that recent and soon to be introduced legislation will help unblock the system and bring real choices and options to learning disabled and other people who need health and social care services.
Sadly not much hope.
As the professionals are gaining from the present system, and huge profits are being made out of this system.
No one is or appears under these complex privatised systems to be able to be made accountable- deliberately so..
And all the legislation, and systems for this were in place nearly 10 years ago by a labour government, now implemented by a conservation one, so not much hope on change of government .
As it looks politically, more power is to go to LA, and they appear even more unaccountable, than the governmentt , there does seems little hope for changei
I too take strong exception to the fatuous notion that ‘everyone agrees’ on learning disability care. Quite apart from the massive majority of the indifferent, many of those who have taken thought about the issues agree no such thing.
There are the Dawkinsesque eugenicist recommendations for termination of any ‘defective’ pregnancies, backed by compulsory or near compulsory antenatal (more like anti-natal) testing. There are even some who are prepared to propound infanticide, and not just cracked Cornish councillors; there are serious proponents of what they prefer to call ‘ post-birth abortion’ (have a topping of euphemism if you find eugenics indigestible). There’s a huge swath of official thinking that frames all disabled people as resource-gobbling wastes of effort, and there’s a wide spread of popular opinion, given most prominent voice by some comedians in search of cheap edginess, but widely espoused sub-rosa, that agrees. There is the section of the right to die campaign that seems to want to impose a duty to die, by way of a duty on doctors to kill where the *doctors* – not the patient – feel the patient’ s life isn’t worth living.
‘Everyone agrees’? I wish.
But meanwhile,. private corporations, can make millions, together with the pharma industry, GPs and the ever expanding groups of professionals, and under MCA 05, regulations, the learning disabled, can even be used as laboratory rats, for any drug or therapy, they wish to make money out of promoting..
At any time . after this very expensive care and drugs, have painfully destroyed the disabled, and all the horror needs to be covered up, the state can decide, if they had capacity, the learning disabled, would not want to live, as their quality of life was so poor, and kill them under the Assisted Suicide Bill.
No questions asked, no inquests. No reason for death, other than legal suicide.
And then they can even use their body parts under the MCA.
That really is making the most profit, of the learning disabled, True commercial awareness.
I think “a fog” is just about the best desceiption – impossible to really know what is going on, or who, exactly is to blame. We are all, I imagine, familiar with the argument that high salaries are ESSENTIAL to attract good people at the top of these organisations – it is far from obvious that it works that well in practice, and certainly doesn;t seem to apply at the other end of the wage scale. It is also obvious (to me) that charities having to toe the Government line to keep funding (to keep expensive buildings and expensive executives and expensive media campaigns going) isn;t that helpful, either. What gets a lot less clear is what would work better. Hints that our chrages can be “cash cows” worries me rather a lot, but how do we get to the bottom of what is going on? Is there no profit to be made in looking after them properly?
My daughter has cerebral palsy. I have never found anything that Scope does even slightly relevant to her life. I had no contact at all with Mencap until she was 18, because she was not, until that age, regarded as having LD. In the years since, I have found myself more and more confused as to what, exactly, that label is supposed to describe. I am not very happy that the line between “Learning disability” and “mental illness” seems to be getting a lot more blurred. Yes, the behaviour of someone with cognitive/developmental problems can sometimes be bizarre or difficult. If I were to behave like that,then it probably would be caused by some kind of mental illness or breakdown, because I have been socialised to know it is inappropriate – but I don;t think it should quite so easily be assumed that LD=mental disorder in that sense.
Mencap did seem to me to have a higher profile than Scope, and to be doing some useful things. But is there an assumption in the general public that they can be left to do it all, and they need not concern themselves? In my experience people do tend to assume that the State, or someone, provides a lot more help and support than is actually the case, and that neglect is rare, parents are respected and included etc and that shutting someone away is sometimes the only, last resort, option.
I am as be-fogged as everyone else, and don’t have any answers, just a conviction that the questions need to be continually and noisily asked until some better answers are forthcoming, or more people hear.
The news that the Motability guy got a very large bonus on top of a generous salary for a service getting worse is an outrage.
Mental disorder is about control. They decide who is mentally disordered, And it is never them.
It all stems from America, and their corporate bodies hot house UK.
US now have created 300 different disorders.
And they can be medicated for profit and used for absolute control.
MCA allows them, to take away all a disordered person’s, decision making, and enforce medication.
Care orders allow all children to be removed, and adopted for £28,000 per child, from the mentally disordered parents.
All is based on the empheror’s clothes, all social/ psychological control
They decide, what is ‘appropriate’ behaviour . It will never be them, who behaves inappropriately always us.
It is from USA, and Tavistock Institute London University.
It is and has been hidden and insidious in its execution , so that we accept what they are doing, without dissent, until it is too late.
Most people naturally via towards wilful blindness, and accept authority per se, and then feel they have no chose.Fear and impotence now rule our society.
Insidious ‘divide and rule’ , deflection, acting in our’ best interests;, the latest of the need to cut budgets, etc is profered, The media is effectively a brain washer as is now education.
All must be looked at objectively, on the real facts, which are often difficult to find.
But generally no one does what they say on the tin, all are going through the motions, and those at the top, plan and control everything, to preserve themselves, their wishes, and to make money. And they are all connected. There is no autonomy or any individual professionals, or workers, just top down policies, and absolute systems, put in place to follow ‘them’ like robots.
Individualism, accountability, and information, are their enemies.
There is one action we can take. We can start to challenge the use of powerful antipsychotic medication given to our loved ones. They actually cause more long term harm than cure and can make their behaviour worse.
When is an antiepileptic drug not an antiepileptic drug? When it is a mood enhancer. Mood enhancers given to patients that are not depressed actually make them depressed and mentally ill when taken over a long period of time.
When psychiatrists dish out this toxic drugs without warning parents of the dangers of long term use they are doing them a grave injustice.
The GPs, as in US, along with nursing homes, etc are given kick backs for their use.
I was shocked to see either Mencap or Mind paying for the pictured instructions for children who are precribed it.
The manufacturer sponsers MAKCAN cards for the autistic.
There is no informed consent, just by the side effects mentioned in the leaflet.
The manufacturer Jansen/Johnson, HAS had to pay the largest federal fine is US history, for misrepresentation about it, and kick backs to doctors, nursing homes ,and a harvard prf ,was giving presentations to jansen executives, saying how he could diagnose bi polar in 3 years olds to justify respiridone use, and how his research, would aid them, he was paid by them. See all arts from New York Times 2013 tweeted last week by me.
Bio polar as a disorder has effectively been created for antipsys, like anxiety and sef harm treatment.
10 years ago all the money was being thrown at bi polar.. so now huge amount of it. see book referred to later
American drug agency statistics show nearly 10 % deaths for off label, under 18 s in 2001- 2009 Even more had very serious side effects.
It is merely a sedative. Cosh, and shrinks the brain..
Yet, despite all this, it is the only medication for autism. And NAS says there is substantial evidence for its benefits in its website, when there is not. The research that exists is very dodgy just over placebo, and sponsored by manufacturer.
It is a huge scandal Read Joanna Moncrieff;s blog. She tells how in the last 2 years there have been 2 large studies, showing how dangerous they are, and how little they benefit, but the Royal Pharma Soc doesn’t want to know.
Reading’ the bitterest Pills’ by her from Amazon worth getting. Will write some blogs on it, as the truth is shocking ,and never published anywhere.
Sorry forgot.
If you do challenge your child’s medication, you lay yourself open, to the very real threat of a care order to enforce if 16 or under, or MCA removal on grounds of incapacity and enforced medication .
This is the power and must be fought by legislation.
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