I heard a very distressing story yesterday. A young woman with learning disabilities is currently being held at St Andrews. As you know, St Andrews is in Northampton. The woman is from Wales. The family have been prevented from seeing her since November. She is allowed telephone contact but the staff have banned her from speaking in Welsh to her family.
I tweeted about this earlier and many people, rightly, saw it as a Human Rights issue. Others despairingly asked “How do they get away with it?”
I think the answer to that question lies in their award winning programme for improved behaviour. Last time I wrote about St Andrews a member of staff proudly sent me a copy of their programme to tell me I’d got the regime all wrong. I dug it out today and I’ve reproduced it below.
Each patient is allocated a Level between 1 and 6. Level 1 is the most serious with the most restrictions on the patient’s human rights. Level 6 is the level for patients to aspire to. Speaking to families with people detained at St Andrews, moving up the levels is as precarious as wandering around a land mine site. You could have worked your way up to level 4 and then one false move and you’re back to Level 1 again. There’s no planning to it: it’s like a daily game of snakes and ladders with your liberty.
It makes total sense when you think about the years that patients are detained in St Andrews. They have to keep those £12k per week beds filled and this is the perfect model to achieve that. It’s a model that is completely random and dependent on the whims of the staff. If Steven was there he would find it utterly confusing and distressing and would seldom move out of Level 1 in his confusion and distress. I imagine it would be the same for many people with autism and/or learning disabilities.
Anyway, here are the Levels. I’ve only included 1 to 3 and Level 6 but you’ll get the picture.
I wonder what level the young woman from Wales is on?
Love, Belief and Balls 
This makes me sick to my stomach!
Where is the humanity???
[…] via Human Rights & St Andrews […]
And, as we know St Andrews has received millions from the government and it appears their mental tribunals are not independent.
And 95% of income is from NHS SO IT IS DONE in our name with our public money from a cash strapped NHS.
As you know from my blog posts, even the number of deaths and why appears unknown and their executives earn is millions.
Why should you be there just because you have a learning disability?.
But no good screaming, petitioning, anything, as nothing is being done, and the same is happening somewhere in all the other mental hospitals and ‘community living’ units.
What hell to live in, much worse than prisoners. who have a right to visitors, independent investigation into death, not to be forcefully medicated, a right to parole and an independent parole board.
Just because you were labelled ‘learning disabled’, as more and more children are being with ever earlier school assessments.
Why on earth has this situation been allowed to be created by successive governments on the watch of mental/disability/education charities by a health charity ??
Because nobody in power cares enough to do something about it. Ooooh, I mustn’t rock the boat. The vulnerable are better of dead. Let’s forget about them incarcerated ones. We won’t bother to have an enquiry in the hope that the relatives will give up and go away. Get away with state approved cruelty camps.
What kind of advocacy support is this woman getting at St Andrew’s hospital? Oh I wonder what my level would be – I particularly like level 1 and 2 – I might hurt someone – yes there is always a possible for anyone of us to hurt someone if we are pushed to our limits! Oh what do we mean by hurt someone anyway – wonder whether the levels system would meet ECHR procedural requirements under the right to a fair trail (tired so can not remember which article it is) – one that is around a person should we certaincy know how they will be treated under the law – lawyers amongst u will know what I mean! Seems to me ECHR A(3) and A(8) have been spinning in my head over the past few months with great success!!! ECHR A(5) surprising – the right to freedom has not been on my agenda interestingly as I know that has been the case for a lot of you.
Mark how did you get this level system anyway?
PS where are the Equality Act’s disability reasonable adjustments here!!!! Nothing is mentioned here – or is St Andrew’s denying that this woman is a disabled person with LDs under the Equality Act provisions – doing so would mean hospital making Reasonable Adjustments by dealing with the person’s behaviour triggers without resorting to anti-psychotic medication. And really is it down to this person’s behaviour or should we be focusing on wellbeing.
Unbelievable corrupt abusive system. Dictatorship to the nth degree stacked against the most vulnerable. The Devils are at Work.
Because nobody in power cares enough to do something about it. Ooooh, I mustn’t rock the boat. The vulnerable are better of dead. Let’s forget about them incarcerated ones. We won’t bother to have an enquiry in the hope that the relatives will give up and go away. Get away with state approved cruelty camps.
Reblogged this on | truthaholics and commented:
Another damning indictment of state-sanctioned kidnapping.
That is unbelievable. How is this meant to help anyone ever? Surely the whole thing is illegal? Individual restrictions needed for safety are one thing, but this is a reward and punishment system. And access to family and friends must always be a given.
The “rules”look like somebody read about social stories and utterly misunderstood the point of them.I hate that this is still happening.
CQC do not like these levels as they are not PBS. I know this.
Patients will or can get so anxious that they’ll do something wrong and then be punished. So, a blip can ruin everything.
It’s not PBS ie. PBS that’s done correctly which is not the rubbish PBS sometimes discussed in these posts.
So how are they still doing it anyway?
It’s like a circus.
And no home leave until level 6….. this is ridiculous. Has St Andrews’s responded?
This is shocking! My son like many others tick level one box and this will not change throughout his life. How can they be allowed to get away with this? Feel fortunate but can change overnight.
And all the covert forms of abuse of power. Where lazy or incompetent or unkind staff can sneakily control vulnerable ‘patients’ with warnings of many potential cruel punishments – for making the slightest request or for behaving like a human being.
No wonder ‘patient’ passivity.
No wonder the organisational bills of good behaviour for even the worst of providers, from a blind and deaf – CQC.
I saw these things when being interviewed for the C4 documentary (I was cut ha ha!) and was happy to tell the documentary makers these were not behaviour support plans but shit. They are compliance programmes, oppression programmes and symbolic of fucking stupid thinking and a disregard of rights. Diabolical.
The fact is commissioners are buying this. The fact is CQC are doing… honestly I don’t know.
Yes, it’s negative reinforcement or classical conditioning which is ‘behaviour modification’, which is dehumanising.
St Andrews are 40 years behind in thinking.
I get more angry every time I read this. It just guarantees failure.
How do they get away with this; I am a small provider supporting two people who would be level 1 or 2 under this system. Both of them have access to the community and to their families. I dread to think how they would survive in this system.
If I may comment on this.
This is a risk based intervention to modify behaviour, and it’s not designed to breach human rights in any way. However, it is also a very old programme for the secure units (not standardised across st Andrews), as I noticed refereeing the building that has not been in use for at least 2 years. Mark, I respect you a lot an have massive admiration for your work and representation of Steven and all those in a similar situation, but you need to get your facts right before you comment on something that you are not familiar with.
Programmes like this are only designed for people who are very risky and likely to cause harm to others. And if you think this is wrong then where is your opinion of those that go to prison and the prison regime?
I just believe we need to be balanced when we deal with information, and you being a counsellor you for sure agree that you cannot make judgments on very little information. Just because a family says this or that, as me being a family member of someone with a disability too, have my opinion about services, does not mean I am right (even though sometimes I believe I am right when I am angry towards the systems). We don’t know the real reasons why this lady has not seen her family. it could be a court order, because there are safeguards against family or it could be that family are vulnerable to her risky behaviour, or it could be that she doesn’t want to see them on the day!
P.S. naming and shaming organisations, the same way dispatches programme do, in biased and uniformed ways, is very dangerous for our loved one. If the system collapses I want to see any of you here looking after a violent person! You all talk without knowing what it is like to be beaten up half through the night during your sleep while the person is having a mental breakdown, or having hallucinations. You all talk without knowing what is like to be the victim of rape or violent assault.
After all, just because you believe is wrong it doesn’t make it wrong! There are plenty of cultural believes about what is right that is completely destroying society and putting vulnerable people even more at risk from harm.
Mike – thanks for your comments. I know of at least 3 people who have been under this regime & their admission to St Andrews was for assessment and treatment. They have autism and/or learning disabilities. The programme was being applied as recently as December and probably still is.
And a bit concerned Mike about the slightly threatening nature of “is very dangerous for our loved one”. What are you suggesting?
It is threatening the entire system. Steven is lucky enough to have you but imagine the hundreds of people with autism and intellectual disabilities and brain injuries who would be homeless or worse, in prison, if the entire system collapsed. I’ve been in the scene for longer than most to see the changes over time. Yes there are things that need improving but not by shaming and naming. Places like those serve a function, to prevent people with autism etc to go to a prison regime, like it happens all over other countries. Imagine the UK without a system and vulnerable people being sent to a life in prison just because they got into a bit of trouble. I don’t want that for anyone but also I don’t want them being homeless and abused by society or communities, like it used to happen in UK not long ago, being ostracised and bullied, because their Bastard families can’t give a toss. Don’t tell me that all families care for people with disabilities because not all families care. I know plenty of cases where families are dangerous to those with disabilities, all they want is money and control over them. Places like st Andrews can at times be a protection from those shitty families who should be there instead.
My advice st Andrews has monthly open groups for relatives. Anyone is invited and yes I’ve been there myself to see and not everyone is happy with the care their loved ones receive. However that’s a better forum to speak for people and gel people rather than slagging a place based on unconfirmed stories from people who can tell bullshit.
I’m bit dismissing the story you were told since it is likely to be true but there are better ways of investigating. My experience with st Andrews is that if you create a contact there they have an open door policy and are open to show people around. I’ve seen many of the programmes in place and that one is very old, going back to 2007.
It’s meant to say “I’m not dismissing the story” …. typing on my phone there’s a few errors. Sorry
Taken from the MHA Code of Practice:
Compulsory treatment in a hospital setting is rarely likely to be helpful for a person with autism, who may be very distressed by even minor changes in routine and is likely to fnd detention in hospital anxiety provoking. Sensitive, person-centred support in a familiar setting will usually be more helpful. Wherever possible, less restrictive alternative ways of providing the treatment or supporting a person should be found. The specialist expertise and skills of staff should be regularly audited, particularly the ability to recognise social and health needs, and specialist communication skills.
It strikes me that it is St Andrews who need to ‘modify their behaviour’.
Mike, even CQC rate St Andrews as inadequate (very serious low rating), so any awards probably come from business interest groups.
We need to use Applied Behavioural Analysis, not behaviour modification from the 50s. That’s what this is about.
The things we blog have to be said.
Mike, a criminal would go before a judge and jury before being incarcerated. If someone had food poisoning would you punish them for throwing up? Sadly I assume you are involved in the “caring” profession.
…so if – the weakest most vulnerable of all of us in society, when they weep and call out for their home and their mum and dad…we make them cry and make them weep till they are dry ? Is a cure..for?
If they are frightened..make them more fearful ? A cure?
And they if they really fail…lock them in a room with a letterbox ..only access…to the world of real people.
Till they die.. of the cure..
Brave new world..
Mark is not wrong in what he says about this girl, her name is Ayla I have known her all her life and she is autistic and has been misdiagnosed for 6 years by the mental health team. she is on level 1 and this is mainly because what should be seen as an autistic meltdown is treated as deliberate violent behaviour. which is caused by the drugs anyway, yet they still pump her full of drugs that are unsuitable for autism and the staffs total lack of knowledge about autism, they don’t even know what an autistic meltdown is.
so true Jayne – From experience! It’s all about treating the person as a disabled person under the Equality Act and making reasonable adjustments – This was proposed treatment advocated for under the Appropriate Treatment section of the MHA 1983! Once you get another mental health diagnosis because hospital/ MH system does not understand how to support people with autism then the whole medical model kicks in…
If anyone follows me on Twitter I suggest you have a look at some of the comments this post has generated. Two former St Andrews patients have related some horrific experiences from their time there. Article 3 of the Human Rights Act is about degrading, inhuman treatment. Their stories couldn’t illustrate better why this regime infringes Article 3.
I don’t have any words. Terrifying read.
In answer to one of the replies, I hope it is understood that, as family carers, we can’t write long exception clauses every time we make a comment explaining that “yes of course we understand that in some certain circumstances families are the ones that have placed their loved ones at risk and separation of some sort is required and/or that sometimes extreme and dangerous behaviour by individuals in society has to be contained and controlled in some ways that may seem excessive. But in the main I think on forums like this we are talking about our vulnerable disabled relatives who are being caused huge distress by regimes and treatment that are totally inappropriate and should absolutely not be inflicted on them and that would cause any one of us to go into breakdown, never mind someone who has autism and/or learning disabilities and/or limited communication! And we are discussing the vilification of families who advocate for their loved ones in such situations.
I think naming and shaming is rightly becoming more and more important to families as, sadly, we know some companies -just like the banks – are too big for the Government to be able to afford for them to fail. Hence those companies get away with all sorts and the watchdogs etc can not afford to openly criticise them as there is not a robust enough system to cope with the fallout if they all get closed down. Hence families suffer as they can not always expose what grossly unfair treatment they have witnessed or suffered.
Well said Kate.
My view is I am against all these levels systems, they are based on award and punishment system. Yes Mike the level system is not just a breach of a person’s human rights under ECHR Article 5 (right to liberty) and Article 6 (Fair due process) but also Article 8 around promoting dignity that comes from having a strong identity as well. What I mean is that the levels system is used to moderate an autistic person’s behaviour so they become less “autistic” and that affects their wellbeing and who they are. Also if a person is at high risk of harming oneself or to others – is this based on the assumption without having a 1-1 or 1-2 PA/Support Worker. And therefore if a person has proper levels of support then they can and must be allowed to go out in the community and for home visits (and indeed be discharged from hospital) even if they are on level 1.
Simone, I googled Free Our People Advocates, but thankyou for your e-mail address.
I value my privacy as I’ve a lot to deal with, but would love to meet with some of the people who blog here.
Secondly, what I mean by advocates being similar staff is that often advocates are arranged by services themselves, and I feel as though they aren’t independent as the patient hasn’t independently searched and contacted them. They are just the advocate that the ward uses for everyone. Some may be good, but others may be ticking a box.
I can’t concentrate on my work as this is so ridiculous.
I just re-read the levels and what hits me most is the message that ‘You can’t do this..’ or ‘You can’t do that’ or ‘You aren’t allowed this..’
It’s negative and controlling.
Are the ‘Royal Colleges’ of psychiatry, etc., aware of these levels and do they have a view?
Where is emotional support? Self-esteem building? Choice? Skill-building. Skill building is very therapeutic.
The research we have is that recovery (or management of mental wellbeing or crisis) can only happen if the person is given ‘hope, opportunity and sense of agency’.
So, are these levels a way of preventing recovery?
level 2 puts you on sanctions (looks like no visits allowed and can’t go outside) just for being new to a ward. i can’t read any more.
(ps thank you Pauline for your kind words)
the bigger issue is – levels and risk logs and god knows whatever other records all seem to focus on behaviour what about supporting someone’s wellbeing – A massive issue I raised during a CPA meeting! There is a massive difference between behaviour and wellbeing – and how someone behaves is a sign of their wellbeing. If someone hurts themselves surely that is a sign of poor wellbeing. What bit is not these hospitals getting?
Also there is a medical model of disability and the outdated normalisation approach here – its about normalising behaviour – who says what is or is not acceptable neuro-typical rather than neuro-diverse community – anyway got to get my submission done for the Joint Human Rights Committee on DOLS and PLS!
I read all the levels – it looks like the patient is not allowed to have any visitors other than family and professionals – no friends or indeed Free Our People Advocates!!!!
Where would we find Free Our People Advocates?
There are very few advocates of any sort, and while some might be good, they’re here today, gone tomorrow.
Some ‘advocates’ invited by St Andrew’s regularly visit wards, can seem a bit like staff, so it’s not the same as family, and I imagine very few people have friends who visit and support them.
I think churches and other organisations should be involved.
It’s likely that many staff are desensitised, but some good staff at St Andrew’s don’t like the system either and are under pressure.
FF2016 email simone@changingperspectives.org.uk – let’s have a chat it will all come clear once you email me – I have to be careful what I write in a public forum – usually I keep my comments to criterizing the mental health system and the law etc. Look forward to hearing from you please introduce yourself as I will noy know who FF2016 is.
what do you mean that some advocates are like staff at St Andrew’s?
Old news:
Local Authorities have fired most directly employed support staff; staff who have known our sons and daughters for years, Staff who have known and built a relationship with us, the family. Many LA’s have replaced these skilled and caring staff with the lowest cost agencies; agencies who are working on a shoe string where they cannot find experienced or caring staff – or retain staff or replace staff.
In the middle of all this chaos – too many LA’s do not monitor the support they buy…at all. They only monitor contract and cost only.
These LA’s can dissuade wary families from expressing any concern..”no point’,’ I heard again recently. Families where they exist, forced to continuously monitor and put in the missing or poor support. Against, too often, increasing rentment by the agency or orgganisation.
LA’s are at the core of this imposed neglect, abuse and misery. For have duty of care for theirvulnerable communities.
LA’s have let slip all attempt to implement, far less reinforce, their safeguarding processes
Whether posted, to a miserable existance in an ATU, (at huge cost to tax payer) miles away from mum and dad, or dumped in so called ‘independent’ living – someones boy or girl – a vulnerable learning disabled person – is neglected in full sight.every day.
And LA’s do it because they can.
These LA’s abbrogate – excuse their irresponsibility – by breaking at least 3 laws every day.
Budget constraints are no excuse for committing a felony.
….and some LA’s will only fund advocates contracted by them; castrating ‘independent’ advocacy.
Exactly, Weary Mother. The last time my son was seen by an advocate (he was in emergency respite at the time) he ended up saying ‘I gotta move house, I gotta move house’. It was mantra he said whenever he got anxious. She was useless. She made him worse. I still do not know to this day who asked her to get involved!
Weary mother and FF2016 that is a real issue IMHA and Care Act advocates are directly commissioned by the agency that provides the services – definitely not independent in real sense of the word.
Sorry for this long conversation..
I didn’t say that IMCA or Care Act advocates are directly commissioned by any service provider, as I don’t know. I’m talking about generic advocates or non-statutory that I’ve come across.
These advocates contacted or invited by service providers to hold regular visit sessions, who don’t somehow seem properly independent to me as not invited independently by the person themselves. Individually they may or may not be useful, and sometimes they get to know the staff, which is like being part of the team..
I know IMHA and Care Act Advocates and no doubt that includes IMCA advocates are commissioned directly. I know that ST Andrew’s IMHA service is directly commissioned by St Andrews healthcare. The advocacy money is given to them by no other than the NHS. I checked this our with MIND legal team and NHS commissioning. I also know that Harvery’s Care Act Advocates are also commissioned by the LA. It’s amazing wheat one learns about the whole system being a “Free Our People” Advocate!!!!! who is completely independent from the whole MH system. Thanks goodness I work for a fabulous disabled peoples rights organisation who pays me a wage so that I can get on with the work outside paid work!
FF2016 the generic advocates who u describe are invited onto the ward are the advocacy service directly commissioned by St Andrew’s Healthcare – in this case POWHER. Usually the IMHA service is normally run by POWHER and Voiceability. There is only one other org that has a few number of contracts and I know they are very good, that is WISH – they are a disabled womens lead organisation who engage in wider campaign work.
Yes FF2016, patient does not have a choice over their IMHA advocate. And if patient want a different and a kosher independent advocate who they choose its very hard to achieve. It can be done with a lot of persistence and determination. Hospital do not make it easy for both the patient and the independent advocate they nominate – I speak from nearly 12 months experience so far! This is because a hospital has an invested interest in retaining the status quo – do I need to say anything more! (with a big chuckle!
Thanks for sharing that, Simone.
I do know some very good Powher advocates, but the choice to independently access one has to be there. You can just ring Powher yourself as a patient (if you’re allowed a phone, and have the ability) or your family can.
The Advocacy Charter is clear about independence.
IMHAs and IMCAs are thin on the ground anyway, and yet you need to get to know an advocate and develop a trusting relationship..
What can I say? It’s a maze.
I think the best advocate is someone who loves you, and then the paid kind can fill in gaps, and volunteers I don’t know too much about.
You are right FF2016 (and I like you have no clue how/where/why/when advocates are commissioned and how independence – whatever that means – can be meaningful), the best advocate is someone who loves you..but then we go round full circle to the fact that when a family member challenges or disagrees with the authorities and/or asserts their loved ones legal/moral/reasonable rights, the authorities can then decide the easiest option is to vilify family, exclude them and then lock their relative up under some so called positive behavioural regime that they claim – with zero justification and breaching/incorrectly interpreting/manipulatively exploiting every code/law – is in the poor soul’s best interest…
We need some sort of system where all vulnerable adults have access throughout their lives to a choice of totally free and totally independent advocate/support manager who ensuresthat their clients wishes and needs are met (big decisions but also day to day ones), clients are fully informed, gaps in service identified and tackled, voices are heard, options made available, finances are in order, income managed, outgoings managed, family carers supported and informed and involved as suits. I think this Government can – and has in the past – funded such independent services (not for learning disabilities, but an example might be the old benefits rights services), employ its workers offering secure terms and conditions whilst ensuring that those services have complete autonomy and independence from political and financial pressures and only have one remit which is their clients’ best interests.
It is totally achievable. It is totally affordable. This Government can easily – if it chose – stop siphoning money off to its fat cat friends, close the deliberately created tax “loopholes”, fund the NHS and Social Care, stop selling bits of it and its services to crooked private enterprise, stop paying high salaries to big suits who lie and cover up wrongdoing and crush ordinary people who dare to speak out, ensure we have meaningful watchdogs and service audits and create a fair safe, happy, inclusive society.
We have got a massive fight on our hands.
Because if we don’t start shouting for all of that, they will soon be recommissioning the workhouses for our vulnerable adults and their family carers who will most likely also become vulnerable due to financial pressures, mental health and exhaustion.
Yes, Kate, that’s a good summary of this fight we have, and no advocacy without the principles of the Advocacy Charter is any good.
A4A (Action4Advocacy) was the organisation I saw 8 or so years ago produce the charter’s overarching principles collectively with as many key advocacy groups as possible. They did excellent Human Rights Act training and we had a good safety net for all of us.
So I hate all this reinventing the wheel.
I think if a different government came in, we could bring back all the tools we had. I’ve got old training materials.
All we’re saying is: Let people feel alive and wake up to a day they look forward to as other people do (as these service people who profit from misery do), stop destroying devoted families, let people have friends (for when families die or aren’t available), stop interfering with normal ordinary needs and desires.
We are shouting as it’s no secret, from the roof tops.
Kate and FF2016 and indeed all the other contributors, it is great that there are families out there fighting for loved ones discharge from institutions. There will be families who for a variety of reasons are unable or can not fight for discharge of their loved ones. Sometimes the children are placed in these institutions as a result of family experiences and therefore it can not be expected that parents would be the loved ones or offer the independent advocacy so much needed in the system. Due to confidentiality I can not spell out more here other than there is a need for another layer of support is peer support and disabled people who are fully committed to the full participation of disabled people regardless of impairment, health condition and abilities in their local communities.
Good to hear that Powher have some good advocates. So often its down to who the advocates are and sometimes the time that they can give to build the trusting relationship and ways of working.
agree totally, one of the huge factors – alongside disability, age, communication barriers etc etc – that makes people vulnerable is not having family or friends who can fight for you (which adds to the irony when family carers get such vilification from the authorities).
that’s why I want an advocate/support manager for all vulnerable adults. (yes, i want choice in who you get and a really robust recruitment and supervision system that tackles ineffective work). they would need to be empathetic, skilled and experienced, knowledgeable, understand the law and best practice, be diplomatic and respectful of their client and their family relationships sufficiently to best engage families and extract their wisdom and involvement whilst supporting those family carers too.
as it stands, I imagine vulnerable adults who can not self advocate or do not have family/friends who can advocate are in a pretty shoddy place.
FF2016 What happens if the patient is not allowed to use the phone or does not want to use the phone – how do patients access POwher’s advocacy services?
Simone, that’s the problem. Sorry, I did say that they might not be able to use the phone. But families or friends should access them for them.
I did ring Powher years ago and they weren’t useful to me or my son, but I met 3 or 4 of them at conferences and they argued things well. So there are good and bad.
FF2016 – have I understood this correctly, to access a POWHER advocate you need to use the phone. I would have hoped that the advocates (from whatever organisation they come from) would be available without using the phone – do not they come onto the ward, operate an open door system, book an appointment with advocate’s secretary or whatever.
Yes, on wards in several ATUs, as far as I know, advocates visit regularly each week, and people probably book an appointment.
I meant if you want to access your own advocate independently, it would involve using a phone (or e-mail, etc.), and the point was that if you can’t access these things, how difficult it is.
Sorry if I’m confusing.
Not quite as simple as that (with a smile) – I speak from experience where the patient had asked me to be n advocate on several occasions . I never thought about doing this type of advocacy work until I was asked by the patient. Believe me hospital make the job very difficult and frustrating.