A bizarre bit of journalism popped up in the Sunday Times last weekend. About Lisa who was locked in a room for 9 years in an assessment and treatment unit (ATU) until she was ‘discovered’ by the Challenging Behaviour Foundation (CBF) ‘expert by experience’ on a CQC inspection. Much is made of the role of the CBF in this short piece. Not sure we need Viv Cooper, CBF CEO, to point out this is ‘deeply concerning and shocking’. It’s also a bit bizarre that the Sunday Times ‘can reveal’ this horrific story when it was published by the CQC last summer in their 3 Lives report.
But that ain’t all on the bizarre menu.
The story moves on to discuss Stephanie Bincliffe who died in an ATU (privately run by the Huntercombe Group) aged 25 and weighing almost 26 stone. Her inquest is ongoing. Why someone who died [died] and is (well should be) currently ‘news’ is mentioned after Lisa (who should have been but never was) is baffling.
But that ain’t all that is baffling.
Other than The Sunday Times, there has been no media coverage of Stephanie Bincliffe’s death despite the inquest being a public event. She was locked in a room for seven years (like Lisa). The Sunday Times reports:
Two women. Two rooms. And media interest worthy of a local break-in in a disused warehouse in a disused retail park (earmarked for building a new, large scale, residential facility for learning disabled people perceived to be bothersome).
I can’t stop thinking about Lisa and Stephanie. I’ve really struggled with LB’s 107 days in STATT. 107 days. Howl. I battered Rich’s ear yesterday trying to remember what holidays we had in the 9 years before LB died. How could someone be locked in a room for years? In a health unit supposed to treat and assess? Howl.
Both Lisa and Stephanie had their ‘care’ commissioned. Both were sectioned which should involve a whole raft of built in processes/checks/regulation. Involving health and social care professionals and commissioners.
When I first heard Lisa’s chilling story at the CQC event back in February, David Harling who talked about it, used a photo to illustrate what a suite at the Ritz (or some other swanky London hotel) looked like at a cost of £12,600 per week.
I’ve googled and found this little baby for comparison:
The money is irrelevant in many ways. We’re talking people’s lives. But it isn’t. The story woven around these bothersome patients who need ‘care packages’ so off the scale of expensive must involve collusion across a whole range of health and social professionals/NHS/private providers. £12,600 a week? Really?
And, ironically, the real cost of the (anti) care provided (a bit of hatch opening, pill pushing, hair brushing from a distance and a staffing ratio of .001? to 1) costs fuck all.
It stinks of a win win situation financially for the provider (NHS or private). A level of ignorance on the part of commissioners. A further battered health/social care budget for learning disability provision and a complete lack of care or interest across the board.
People who have committed no crime but are such a menace that locking them up for years is ok, even when they, er, die. Aged 25.
Moving quickly on because there really ain’t nothing to see in this room….
What role do key charities (in this case those originally set up by families to improve the lives of their kids) actually play? And what do they actually do? And why?
Tumbleweed.
Or worse. Clearly.
mydaftlife 
Mark I just recently had involvement and thankfully she has moved, with a young girl who apparently “chose” to be locked away. I cannot go into detail as I was told in confidence by a very good person who has got her out after so much effort. I don’t think this is as unusual as we woukd imagine. It’s barbaric. To be honest the apathy and open mouthed fly catching no marks who are involved in making these decisions look as though they have been drugged up or are on something. They are the people who should be receiving treatment if anyone deserves it. They need to experience what they put others through. I’m getting so that I can’t think if any other way to make them realise the agony they inflict. I’m tired tonight, really tired, and the last situation that I have been forced to share by the sheer neglect and indifference of others resulting in again, an unnecessary death, has worn out my soul but my God, after all we had worked for together and tried to achieve his poor mother is now completely torn apart.
Not good times
Charities hijack causes and make billions tax free and activities are unaccountable.
They also serve as misinformation, and propaganda for the state , which is often their main source of income.
NAS has built the independent living units where the autistic will be encaged for life at an income of some 2,000 per week.
My daughter would have gone straight from her enforced NAS residential school to one of these next door at 18, had she not, at 7 stone, bald, with two rotten death and a pooh impaction, refused to go back after a weekend home in february 2013.Read my blog post The Love of Money and Isabel’s Future Care.
That is why NAS etc allowed the MCA 05 and 07. They needed the future funding.
All mentally disabled, but particularly the autistic, are now huge cash cows and pharma cows.
Those who are often illegally deemed to lack capacity, like my daughter,under MCA, can be used for any drug trial, or behaviour therapy .
The state would make all her decisions.
The Assisted Suicide Bill may next year be law, this allows, those who the state decide lack capacity, to be be legally killed, if their quality of life,is deemed so poor, that they would end their own lives, if they had the capacity to do so.
Under regulations under the MCA, even my daughters body parts could then be used as NHS wish.
This is my nightmare and that of all parents of the mentally disordered and autistic.
And we are all powerless, terrified that our children can be taken at any time.
I emailed Norman Lamb in January 2013 about the abuse in NAS home, and CAMHS wanting an illegal 12 WEEK ASSESSMENT centre stay, and he said it was not within their remit I must try to put on my blog.
I found out from an agency worker, who had worked with Issy in her NAS home, that because of my daughters aggression, caused by PTSD, a restraint,two rotten teeth and an impaction, they put her food through the window.,
She did not come out of her room much, except to go home at weekends for 18 months, after a 48 bruise restraint, all blamed on self harm.
NAS charged the public purse 177,000 at least, per annum, with no deduction for her third of a year at home we had to fight for.
And we will never know what happens, or might happen, in independent, cut off from family living.
Can visualise these rooms. Friend locked in one at the back of a psychiatric ward for week at a time – for losing a tiny amount of weight (anorexic) – bare white walls, sealed window – but apparently was OK because door wasn’t actually locked – just that there was no handle on the inside.
No communication from anyone else on the ward allowed. Solitary used as a punishment.
Solitary confinement is a cruel and inhumane way to treat fellow human beings. I expect people over the years have just shrugged their shoulders and said “It’s the only way ….” For safety…..”A temporary measure …”The door isn’t actually locked ….
You are completely right Sara and if I had a magic marker pen of truth and morality ( heftily loaded with outrage) , I would underline every word. V
The thought of third parties having rights of life and death over people with severe disabilities is horrifying. How can anybody conclude that ‘this person would end their life if they had the capacity to do so’? The most one can say is, ‘I think if I were in this situation, I would seek to end my own life’. That does not seem to me to be a sufficient basis on which to decide to put an end to someone else’s existence.
Some people do find the idea of choosing when to end their lives comforting. There are others who, despite having the means to hand, would not choose to do so even in extremis. The point is, they have a choice. Prematurely ending the life of a person without capacity by making a choice *for* them can’t possibly be called ‘suicide’, which is defined as deliberate self-killing; it’s aliucide, deliberately killing another. Conventionally, surely, known as murder or execution?
Did you see the episode of ‘Born to be Different’ where Shelbie, the child with Trisomy 9p, was in hospital and the doctor was trying to persuade her mother, Vicki, that it was ‘time to think about letting Shelbie go’? Vicki, who was sobbing, said to the doctor, “What would you do,if you were me?” And the doctor said, very gently, “Oh, I would have let her go a long time ago.” And I thought, ‘No, you wouldn’t. You may think you would have, but you are utterly wrong. If you were Vicki, you would love Shelbie as much as she does, and you would do *exactly* what she is doing – fight for every chance that you could possibly wrest from fate, from the NHS, from your own slog and exhaustion and adrenaline-fuelled terror, to keep Shelbie anchored to life for as long as you could.’
Liz, I thought I’d heard Machiavellian casuistry, but that takes the entire barrel of biscuits – ‘the door wasn’t locked, it was just that there was no handle on the inside’. For economy with the actualité, that’s going to require some beating. Good grief.
Pingback: A rotten culture | The Small Places
In the nineties I was asked to be a trustee for a profoundly learning disabled man who lived on his own in a 24 hour staffed house. The man had no living relatives. I had pretty wide experience in the field but none of being a trustee. The first thing that shocked me was the huge massive (to me) amount of money coming into the account for the care of one man, at a time when community services were being trimmed back…I could not see where management of the care team, care or the account was monitored or when the mans needs and costs had last been reviewed.
I discovered that the cash came from NHS hospital discharge funding passed on to LA.. A somewhat bemused social worker from the LA was found at my request. Had friendly non illuminating chat and off he went again. I asked for independent audit…
My motives for the audit were not to find irregularities in use of cash or care, but to find out who was actually responsible for all this money and for protecting this very vulnerable man. The trustees appeared to have had a ‘social’ role; trustee in name only.
Although LA was responsible (on paper) and the man was on their alive SW list, no one from NHS or LA appeared to monitor either the cash or the care. All was done by machine. Cash came out from a NHS standing order and passed similarly into LA account ….mechanically.. and then slipped onwards not touching sides .. into the service provider’s bank account …. End of story. I moved house soon after….
I wonder how much has changed?
Words fail me. Keep up the good work Sara, but it is not enough. What would be enough? What was the tipping point for closure of the NHS long stay institutions? Scandals, yes. Cost – in part, it would have cost too much to bring them to an acceptable standard. New idea like normalisation. Yes. Problems of staffing the Hospitals. In some places, yes. Research. Partly. So what will it take today to turn the tables. The Winterbourne scandal was not enough. We are short of money but not for this sort of thing it seems. More research? Maybe, we only have anecdotes, but I am not convinced, and anyway who would fund it? 38 degrees recently championed the cause of a ma with Downs Syndrome at risk of deportation. Maybe social media mass movement? Any idea s out there?
Jan
At least 3 Org PETITIONS, one to have public enquiry into deaths of autistic 4 last year in 8 months in st andrews, from being full of pooh and forcefeed antipschotic medicine which causes constipation.
2.. for a Central check/audit on drugs given to those in care/NHS , as loads of yellow cards to NHS for deaths from medication over years and still no central check left to discretion of reviewing GP, CAMHS in care and indi living-2.NICE guidelines needed see my comment on LB blog.
3. Review of all autistic retained in NHS hositals for more than 6 moths.and guantee return to home/residential within certain time.
I’ll think of more put this gets publicity on issues. Busy at moment but can draft a few and info will shock if we can get some research on figures et al.
This is all makes big bucks, and they are privatising NHS,particularly mental health to turn it into a pharma cow, that why we have 300 mental disorders, and MCA allows anyone to be rendered incapable, and used as pharmacows, and for trial big money– So just prey labour get a majority with Red Ed BECAUSE they fear him as he is not third way.
If we continue with this coalition we are really doomed.
Jan, it is up to us, again: Social mass movement, great idea.
Took ages for the hospitals to shut down, and the cash capital to be released and too many vulnerable people were inappropriately handed over to any one who would take them, just to speed up the cash release process. Too many still stuck in horrible places.
All the reasons you describe are totally accurate. A lubricating power and energy was added by us parents who were becoming better educated in how to enforce change, and were refusing in numbers to institutionalise our learning disabled babies and young children. The numbers needed to make these horrible places viable were dropping off, fast. Social Policy was the principle driver; plus the sites were valuable to short term NHS managers keen to drop the sale capital into the hole in their budgets. Promises to keep up the huge initial level of discharge revenue funding were made. All this ,,,,,
Now with potentially more accurate prenatal testing, abortion is an offered option. Babies are born many weeks early and can have multiple serious disabilities. Both have changed the demography of learning disability care. We all know this.
We parents were the wheels of change and service improvement in the 60’s 70′ and eighties and we kept those wheels moving…while the money (and perhaps political will?) was there.. But we went to sleep for a bit, when cash benefits, community based services and the right to education were introduced for our sons and daughters. Charities that we built and fund raised have gradually changed their focus? We need new people led groups. No need to call them charities?
For far too many choice and ‘Personalisation’ is a bone stark naked king. We proud oldies have now to beg our ‘betters’ for at the very least ‘please’, some safe’ish care for our increasingly age disabled sons and daughters… …….and for when we are no longer here.,,,,,,
It is up to us again. Old and surviving (just). Mums and dads who did it before join with other parents whose sons and daughters are suffering now, and alongside those grieving and fighting for justice. Our sons and daughters all, are facing a really horrible future…if we do not?
Wonderfully brave courageous Sara and Mark, the LB bill etc etc etc….now where next? We shut the old bins down, we have to stop worse being built.
Pingback: The difference between institutionalisation and independent living is the difference between abusing human rights and respecting them. | Making rights make sense
Independent living does not ensure human rights.
One new care assessment by a new assessor can remove safe support.
Many (have nor family) cannot contest where care and support has been cut back to dangerous levels. Day care (and safety oversight of it’s members) for many is gone, and very vulnerable people can be seen everywhere wandering unshaven in the city centres, exposed to ridicule and other dangers. Others sit in loneliness in their room. Advocacy, where offered, too often still not ‘independent’ Advocates (short term intervention only) still potentially hamstrung by purse holders?
Microwave meals and coca cola diet, and obesity. Wrangles between NHS and LA’s about who is responsible for the health care chain from need, – to supported health care/cure etc. Who should do (pay for?) what, in relation to health care and required, can look like two sulky teenagers sniping over kitchen table at present?
Agencies recruit inexperienced people (the very good, bad and downright awful) on zero hours contracts (15 minute calls in some places). Potentially different one very day.
People whose now dead parents managed their correspondence money etc, find now ‘independent’ they are in debt and benefits stopped (their home at risk) because they cannot read a birthday card far less comprehend big fat forms. Welfare rights support? What welfare rights support?
Then the biggy, the potentially cruel isolation of individuals where they can be manipulated and disrespected and very much worse. Biggest biggy, lack of MONITORING of agencies and carers. Contracts, the letter of, cash cost and number of care calls, are counted and overseen (big mistakes are still made agency people can fail to turn up others cut calls etc), BUT continuous and competent oversight of the safety, happiness and human rights of an individual appears to be, in too many places, still totally ignored.
Independent living does not ensure human rights.
This is not the independent living, that the government is now enforcing, and the real reason why back in 2005, the Mental Capacity Act was drafted, but not fully implemented until last year under the Mental capacity Act 07, as the previous government were unable to get it through the HL as too draconian of family and disabled’s right.
This Act has already meant that thousands via Court Protection secret rubber stamped orders and illegally without them, have been encaged in independent living units, isolated from families, forced feed drugs for easy management by on message reviewing GPs and CAMHS, BOTH cash and pharma cows. Making millions for large corporate independent living providers, and care agencies and NAS.
What you describe of the DANGERS AND SHAMBLES of community living, is an advert for the use of the MCA to encage in independent living units etc , that is why it has been allowed to happen.
Social care has now only one real pathway for the disabled and vulnerable, and that is to encage for huge profit. It is also a very useful way of filling up all the new flat development in the city centers where my daughter will be encaged.
The draft LB Bill does not address this issue see my comments on their draft blog page.
Read the 3 posts I put in my blog this week about how the MCA and now Carers Act 14 do this,all by stealth of cause by googling my name.t
Reblogged this on Lorraine Cleaver.