A Whopping Big Thank You

Boom. That was the week that was. That was the week of
7 Days of Action. It’s going to take a long time to process all that has happened.

We want to thank each and every one of you for the phenomenal support you have given to the campaign. We have been blown away by the way people have stepped up to the plate and got right behind the mum’s and the seven dudes. As I write, the blog containing the seven stories has received 72,580 views. The stories have been retweeted and shared on Facebook by an incredible number of people. We are so grateful and moved by everyone’s humanity.

So many people got into the spirit of the campaign and just ran with it. All the posts and actions have been collated on the blog and will remain as an archive of the Seven Days of Action. Elaine James has also compiled a magnificent Storify of the week’s highlights which adds to the history. It’s unfair to single out individuals but I just want to mention a couple. A huge thanks to Chris Hatton and Ian Penfold who wrote daily pieces to support the campaign and it was great to get the contributions from two dudes who have experienced life in an ATU. Thank you Peter and Steven.

On a personal note, I want to thank the seven mums who bravely shared their stories. I can’t begin to describe the enormous pressure they were under from the professionals who have control of their sons, not to tell their stories. But tell them they did and I salute their courage. Thank you Debs, Eve, Paula, Nina, Leo, Jackie and Mother P.

What happens next is down to everyone. It is everybody’s campaign. There isn’t a campaign committee, it’s simply a group of determined people at their wits end. There have been some stonking suggestions over the past week and we hope these can all be carried forward. The blog and Facebook group will remain open for folk to discuss the next steps. And we will update you on the progress of the seven dudes and hope that the legal people who have come on board can bring about some happy endings.

My belief is that our biggest hope for the future lies with the seven dudes themselves. One thing the professionals completely miss in all these cases is that it is impossible to break the human spirit and will of these guys. The week before the campaign I met Jack, who two days beforehand had been released from a long detention in an ATU. He was talking about his future. He hadn’t been broken. None of the dudes featured in Seven Days of Action have. They couldn’t break Thomas’s will. They broke his body.

I think my favourite story of the whole week happened on Friday. It was Eden’s (our day one dude) review. The advocate who was acting for him reported that after 7 years detention, he is able to express what he wanted totally clearly and say what he wanted for his future. That’s will. That’s the human spirit.

So a massive thank you for sharing your spirit to Eden, Jack, Thomas, Tianze, Stephen, Robert and P. We will get you home.

Many, many thanks to everyone.

Just Want To Go Home

How are you feeling after reading all seven stories of life in an ATU? I feel punch-drunk. It is hard to credit that so much cruelty, both careless and deliberate, can be packed into a single week’s worth of posts, but there they are.

The first thing that struck me, looking back over them, was, where are the girls? According to data guru Professor Chris Hatton of Lancaster University, women make up a quarter of ATU inmates (in the light of these stories, I don’t feel ‘patients’ is an appropriate term). So we might have expected to see one or two girls alongside the lads, but no women’s stories were offered. We don’t know why no stories came in; but we do know that the stories of Claire Dyer, a Cardiff woman with autism and learning disabilities whose plight made national headlines in 2014, http://www.southwales-eveningpost.co.uk/Family-left-devastated-daughter-s-unit-switch/story-22042827-detail/story.html and Stephanie Bincliffe, who died in an ATU in 2013, have themes in common with the stories published in 7 Days of Action for ATUs.

So what are those themes?

From these stories, they seem to be:

– A failure of forward planning. The relevant authorities seem so bogged down in crisis management that they take a ‘cross that bridge when we come to it’ attitude to anything that isn’t an immediate, catastrophic emergency. Of course, the failure to plan in advance is what allows the crises to arise. Learning disabled people and their families don’t tip from totally hunky-dory to complete disaster overnight.

Eden ‘reached crisis point due to lack of the right support’. Robert ‘became depressed and very anxious’ after autism-unfriendly changes to the way his residential home was run. Jack stuck it out at college for 18 months, but his heightened anxieties were noticeable ’on the transition from school to college’. Thomas ‘started to be troubled’ in his early teens. Tianze was finding changes to his routines ever more difficult to cope with. The anonymous dude on Day 7 was hospitalised and sectioned, not because his behaviour had escalated or he was ill, but because his Mum was unwell. And Claire Dyer reacted against two years of utter boredom in a Unit in Cardiff that was not set up to support her needs as an autistic person.

– It is dangerous to ask for support, even when it is dangerous not to. Paula Rawnsley wishes she ‘never had asked for help’. Nina Ni thought Tianze’s Community Treatment Order ‘was part of a plan to help him get better and for us to receive better support’, but in fact Tianze got worse. Leo Andrade now wishes she ‘never agreed to send my son (Stephen) away in the first place’. When Mark Neary had flu, he asked for a few days’ respite care for his son; Steven didn’t come home for nearly a year. After he assaulted a member of staff at school, Connor Sparrowhawk’s parents thought that by seeking treatment for him in their local Unit, they were ‘were buying a bit of time for everyone, including Connor’. http://www.theguardian.com/society/2016/apr/02/never-thought-he-wouldnt-come-home-why-son-connor-sparrowhawk-die Connor’s time was cut short by neglect in the Unit and he never came home alive.

– Autism is not ‘curable’ and inappropriate approaches can worsen behaviour. Eden is losing his ability to speak. Day 7 dude was restrained so that the only part of himself he could move was his head, which he banged on the floor until he injured himself. Twice. Robert got stuck in a downward spiral of anxiety and frustration leading to outbursts which resulted in restrictions being imposed, which made him more frustrated and anxious, which….

– Mental health care does not, generally speaking, understand autism, which is a neurological condition, not a mental illness. An autistic person’s coping mechanisms – rituals, stimming, verbal tics – may be severely discouraged. Often, no allowances are made for a person’s sensory difficulties. Day 7 dude’s screams in the carpark were interpreted as mental illness – insanity, in effect – rather than perfectly understandable distress. Steven Neary’s quotation of song lyrics was dismissed as echolalia rather than a way of conveying meaning. Often the person is punished for behaving in the only way that their autism allows them to.

– Medication and ‘treatments’ like restraint and seclusion can and do adversely affect health. Jack had ‘extreme effects’ from the three-drug regime he was prescribed. Eden gained 16 stone in 5 years while being injected with the antipsychotic Clopixol. Steven Neary put on 15 stone in 5 years of taking the antipsychotic risperidone, and developed the agonising and life-threatening condition called nonalcoholic steatohepatitis – an inflamed, fatty liver. (Neither Eden nor Steven have a psychotic disorder). Stephanie Bincliffe gained ten stone in five years from a combination of drugs and being confined to a single padded room. She died of heart problems and sleep apnoea, aged 25 and weighing 26 stone. Day 7 dude is becoming emaciated. Thomas was given ‘cocktails of drugs’ that left him zombiefied. Stephen has ‘changed from a beautiful handsome happy smiley boy to one with very sad empty eyes’. Tianze has frequently been restrained prone, and like both Day 7 dude and Thomas, has suffered restraint injuries.

– Units are total institutions, with commensurate risks of neglect and abuse. Families, the people who know and understand the learning-disabled person best, are sidelined, their expertise dismissed, their contributions disdained or blocked, and their visiting arbitrarily cut short or denied. Stephanie Bincliffe was neglected in her padded cell for seven years. Connor’s epilepsy was not recorded or acknowledged, so that he was left to bathe alone and drowned following a seizure. Day 7 dude is receiving neither assessment, nor treatment, nor discharge planning. Thomas was assaulted by a staff-member in one care home, and suffered carpet-burns in another from being dragged along the floor. Although his mother repeatedly told staff that he had a serious chest infection, he was not treated for it and succumbed to a fatal pneumonia.

– For people with complex difficulties, leaving an ATU is much harder than entering one. As Sallowpad the Raven remarks of Tashbaan, it’s a case of “Easily in but not easily out, as the lobster said in the lobster pot”. People may enter as voluntary patients, or under Section 2 of the Mental Health Act (a 28-day detention for assessment and treatment) but if their distress causes them to behave in a way that the facility does not approve of, they may end up in long-term detention under the provisions of other sections of the Mental Health Act. Eden was admitted as a voluntary patient, but ended up on a forensic section – that is, he was detained in the Unit as an alternative to being sent to prison – because staff pressed assault charges against him. Day 7 dude is trapped in a limbo that is more like his and his family’s personal hell. Tianze’s parents’ home has been fully adapted to meet his needs, but he is still detained in hospital, two years after he was told he was going to hospital for a one-night admission. Leo Andrade reports that, ‘In the meetings about Stephen, discharge is never discussed.’

– Once Local Authorities have got someone into long-term NHS care, they are extremely reluctant to reassume the cost and effort of providing that person’s care in the community. Bromley are doing nothing to bring Robert home from Stoke, although the hospital says he does not need inpatient treatment. It is fourteen months since Hammersmith and Fulham were told Eden was ready to come home, and in that time they have done nothing with the information given them to facilitate his return. Hillingdon were keen to ship Steven Neary off to a permanent placement in a hospital in Wales. Connor’s return home, which depended on adequate community support, was first mooted on April 14. There was still nothing in place or even in prospect when he drowned in the Unit bath on 4 July.

– Your adult children are not your children any more, and if they have learning disabilities or autism, they may not even be your family members. They belong to the State. Leo has been told that her son’s data protection rights override her right as his mother to seek a second opinion in his best interests, and is being given the runaround by various organisations which each ‘own’ a piece of Stephen, but none of which actually take overall responsibility for his welfare. Mark Neary is not acknowledged as Steven’s Dad; in officialese, he is Steven’s ‘live-in carer’.

But parents do not stop caring about and for their children just because they hit a particular age. Indeed, in other circumstances, parents are expected to continue their caring roles for their competent adult children. Eldest is in Year 13 and turned 18 some months ago, as college very well knows, but if he is late to or absent from classes, I still get a text from staff demanding that I account for his whereabouts.

The truth is that people do not care about and for their family members simply as a function of their age, but as a function of their needs http://www.bbc.co.uk/news/uk-england-cornwall-35255795. We naturally spend more time looking after a very young, or a sick, or a disabled child. We look after unwell or frail parents, while leaving our healthy and energetic octogenarians to walk their dogs, run their errands, take holidays to Samarkand and generally get on with it as they have always done. When I was ill after Eldest was born, my parents came to help. My father spent his time in the kitchen, impersonating a six-foot-two Food Fairy. My mother hovered over me and shuttled E from his cot to my arms every time he woke up. “Why?” I asked fretfully, one day. “Why don’t you take a turn with E? Why don’t you leave me in peace?” Mum smiled. “Because he’s your baby, and it’s your job to look after him. But you’re our baby, and it’s our job to look after you.” I was in my 30s.

The odds are weighted – dangerously and disgracefully – against caring families. Once upon a time, autism was blamed on ‘refrigerator mothers’, http://www.amazon.co.uk/review/R29QJDQ88BLM6T who were said to be responsible for their children’s ‘failure’ to ‘develop normally’.

Parent-blaming is still widespread, as shown in the exchange recorded at 12.56 on day 7 https://whobyf1re.wordpress.com/2015/10/13/lbs-inquest-day-7-session-1/ of Connor’s inquest. Families are blamed for ‘upsetting’ their incarcerated young people and banned from visiting or have their visits arbitrarily curtailed. Visits from under-age family members are generally forbidden and such children actually have less contact with their relatives who reside in ATUs, than they would if those people were in prison.

Families’ rights to be consulted are easy (illegally) to ignore or bypass. Their legitimate efforts to act in their children’s best interest may be blocked by jobsworthy use of improbable pieces of legislation, as with the Andrades and the Data Protection Act. In an adversarial legal system, they may be given one piece of accurate but unilluminating information, yet have other, potentially helpful information withheld from them because “it’s not my job”. Or they may be treated to ignorant or wilful misinterpretations of the law, as the Neary family was. Questioning the system can be treated as a punishable act. Some families are threatened that if they make waves, they will be cut off from their loved ones, that speaking about what has happened will result in their ties being legally severed and their child becoming a permanent ward of the State. Sometimes these menaces have more to do with the perceived risk to the organisation’s image and reputation than they do with the best interests of the person supposedly at the centre of the concerns. Hillingdon clearly demonstrated their focus when they breached Steven Neary’s Article 8 rights by putting out a disgusting press release about him, “full of contentious and inaccurate information, and creating a particularly unfair and negative picture of Steven and his behaviour”, the day before the 2011 hearing into his case opened ([2011] EWCOP 1377, para 155(7)).

Even if it is not actually within the legal powers of the organisations to do the things they have threatened, families are in a multiple bind: they do not know what is true and what is not; they do not know where to start looking in order to disentangle truth from oppressive fiction; seeking legal advice for their child may be prohibitively costly or excessively lengthy via the legal aid route; and if the organisation goes ahead regardless and does whatever it intends, there may end up being no available redress, despite the illegality of the organisation’s actions, because those actions may have moved the situation to a point where it seems inescapable and the problems insoluble.

Families inhabit one of two spaces: naïveté or fear. When your learning-disabled child is small, you live in hope. People tell you about all the provision that is available and to celebrate every milestone. You learn the word ‘inchstone’ and celebrate every one. Later on, you realise that you were naïve, and you begin to worry. The more you learn, the more the fear grows. Speaking out about your fears can draw unwelcome official attention. You may even receive threats. Some families have thought about participating in 7 Days, and then decided it is too much of a risk. Day 7 dude’s family feel his story is crying out to be told, but were too afraid to do so except in conditions of anonymity.

So is there any hope?

Yes.

The first beacon of hope comes from the families who have so bravely and generously shared their stories this week. Not only are they helping to spread knowledge in the world – always A Good Thing – but they have begun a class action to get it formally acknowledged that if a person is kept in an ATU beyond the period needed for active assessment and treatment under the Mental Health Act, or when the ATU is no longer the ‘least restrictive option’ under the Mental Capacity Act, he or she is unlawfully detained and must be released. It then is the duty of their Local Authority, under Section 9 of the Care Act 2014 to assess whether the person has needs for care and support, and, if he or she does, what those needs are. Having found and assessed needs, the Local Authority has a duty to promote the person’s wellbeing and to meet their eligible needs.

The second is that the Care Act 2014 is complemented by Children and Families Act 2014, which instituted Education, Health and Care Plans (EHCPs) for disabled children and young people from birth to 25. EHCPs are focussed on working towards the best possible outcomes for the children who hold them, and they require a longer view to be taken of future needs and planning for transitions that will help the young person move towards those outcomes.

I don’t for one moment suppose that either piece of legislation on its own will miraculously make everything run smoothly. Nevertheless, families now have the opportunity to insist that their Authority thinks about, and plans for, their disabled child’s future.

The third is that there are some ‘ninjas’ out there, ready and willing and able to help. People like Sam Sly, who has a proven track record in successfully springing people from ATUs and keeping them in their communities, and who wrote 7 Days’ how-to. People like lawyer HeddEmrys, who wants to look at ‘establishing a permanent pro bono unit to deal with ATU cases … at an early stage’ (although I’d hope any ATU pro bono unit would also hit legal aid for every penny to which families may be entitled, in the interests of offering pro bono support to the greatest possible number of families). People like Paul Richards of Stay Up Late, who is running the ‘CareBnB’ service http://stayuplate.org/assessment-and-treatment-units-7-days-action/ to offer people somewhere to stay when they have to travel very long distances to visit the ATU where their family member is held.

Please, think about what you could do. Talk to people about what would be helpful and feasible. Then go and set about it, and let as many people as possible know what you are up to.

I want to finish by going back to the young man who was the original inspiration for Mark Neary, who is the person behind Seven Days of Action.

Steven Neary survived his year of unwarranted imprisonment in an ATU remarkably well for an autistic person who was pushed right out of his comfort zone for such an extended period. He persisted in putting forward his desire to go home. Whenever the Unit manager came in, Steven would sing Queen’s ‘I Want To Break Free’. https://markneary1dotcom1.wordpress.com/2013/10/24/challenging-behaviour-dry-cleaning-fluid/ And when another male member of staff was on shift, Steven would treat him to a rendition of ‘Sloop John B’.

The Beach Boys’ version of ‘Sloop John B’ was released exactly fifty years ago this month, in April 1966. Here it is, with a new lyric for Steven, for Steven, Connor, Eden, Chris, Jack, Thomas, Robert, Stephen, Tianze, Claire, Stephanie, and all the other dudes who just want to go home.

I’m stuck in an ATU

Five years after Winterbourne View

Seems like I’ll be here forever, I want to go home

The NHS say

I’ll have to ask my LA

I feel so broke up

Just want to go home.

So close long-term Units down

Take me back to my home town

Somewhere I can be safe, a place of my own

And give proper thought

To what I need for support

I feel so broke up

I want to go home.

Connor got put inside

A hundred days later, he died

His inquest found neglect, so Southern Health lied.

They still spin and hedge

Claim failings ‘alleged’

I feel so broke up

He never went home.

 

So close long-term Units down

Take me back to my home town

Somewhere I can be safe, a place of my own

And give proper thought

To what I need for support

I feel so broke up

I want to go home.

 

Verita One and Two

Mazars and Hunt’s UQ

Monitor, NHSI, the CQC

It’s painfully clear

Money’s why we’re still here

We all feel broke up

We want to go home.

 

So close long-term Units down

Take me back to my home town

Somewhere I can be safe, a place of my own

And give proper thought

To my need for support

I feel so broke up

I want to go home

 

https://www.youtube.com/watch?v=nSAoEf1Ib58

 

 

The Iron Gate

Here’s Stephen Andrade’s story, written by his mother, Leo.

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Just before he was 16, Stephen went to a residential school in Norfolk. Two years. It did not work as it did not have the services to provide for Stephen’s needs.

After two years, a multi disciplinary team comprising the doctors, the school and  Islington social services decided Stephen should go to the dreadful hospital St. Andrews. In Northampton. He was there two years. Steven became withdrawn and became a shell of the boy that we knew and love.

Then after much campaigning he was moved to a lower secure hospital in Clacton on sea, Colchester.

He has been at the Clacton Unit for almost 15 months. It was only meant to be a short term measure for assessment.

Here is a film  I took on my camera last year when I took Stephen’s younger brother to visit him at the Unit. he wasn’t allowed into the Unit and Stephen wasn’t allowed out. They hadn’t seen each other for two years.

There is no sign of Stephen returning back home.

Since he’s been at Clacton and being held there under the mental health act , it has been added one more year to his detention. The mental health section ends this June. I fear it will just be extended, probably for another year? In the meetings about Stephen, discharge is never discussed.

Stephen is having daily incidents and self harming head injuries.
Currently I am trying to get the medical team at the Unit to look into Stephen’s head where there’s this huge bump with skin. I fear it could be a haematoma. They say it’s not.

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I fear for my son’s life. No exaggerating

And I see no turning back time.

I wish I have never agreed to send my son away in the first place. Not just to St. Andrews to begin with but to the residential school also. Because if I had not, my beautiful smiley boy would be here at home and he would not have changed from a beautiful handsome happy smiley boy to one with very sad empty eyes that he is today.

It’s as if he has lost his soul.

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Stephen’s story was going to end there but Leo reported that in the past week things have taken another sinister turn. Unable to get anywhere with the Responsible Clinician, Leo made contact with the respected psychologist, PC and the plan was for Dr C to carry out an assessment on Stephen, a second opinion.

Here’s the email Leo received from the hospital:

Dear Leo,

Further to discussions with Dr D I need to advise that we are unable to provide access to any records or have discussions with Dr C in relation to your son.  All patients are protected by the Data Protection Act and clinical discussions can only be held with professionals and family/carers who are directly involved in his care.  I would therefore request that your request for Dr C’s involvement is re-directed to the CCG (Islington), who will then be able to ascertain the need, if any, for her involvement and in what professional capacity.  Once this has been established, Islington will need to forward us their request for her involvement and reasons why to justify any professional discussions to take place.

As per Tom’s email below, it is evident that the local team have worked hard in trying to find a suitable placement for S and there have been several assessments conducted at the Unit.  It is hoped that a suitable provider will be found in the near future to ensure a safe and sustainable discharge from the Unit.

I hope this helps clarify your request

We’ll end with Leo’s own words:

So I did call CCG.  They told me to call social services.

Why?  Why do these people hide behind the MHA and data protection ?

Surely as my son’s mother I have the right to get him help?

What are they so afraid of?
Why can’t they be open, and say we have nothing to hide?

Why use data protection , to stop me helping my son?
It’s my son’s human rights to have a second or third or whatever many options we wish. If Dr C can help my son why not let her ?

My son ‘s human rights are violated every day. And where is that data protection then?

Where is his protection when an alleged carer kicked him on his lower back?

Where is his data protection when he has gone to general hospital dozens of times with head injuries?

So I ask myself who is this data protection actually protecting ?
It is certainly not my son.

Is it wrong of me, to want to get my child the best care possible?

3 Days To Go

There’s three days to go until the launch of 7 Days of Action on the 18th and we thought it was a good time to remind ourselves why we are running the campaign.

Monday – Eden

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Tuesday – Jack

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Wednesday – Thomas

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Thursday – Tianze

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Friday – Chris

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Saturday – Robert

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Sunday – Stephen

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What Can You Do?

1. Share the stories. (On social media, verbally, send the links to people you know).

2. Sign the petitions.

3. Contact your local press and media.

4. Lobby your MPs.

5. Write to your local commissioners.

6. Discuss how we stop our family members being sent to ATUs.

7. Learn your MHA & MCA to stop this happening to your family members.

8. Support the families’ legal action

9. Can you offer lifts to families who have hundreds of miles to travel to visit their loved ones?

10. Can you offer overnight accommodation if you live near to any of the ATUs?

11. Lend your experience and ideas to the families.

12. Never forget. We are talking human lives.

Thank you for your support.

Life For A Learning Disabled Person 2016

Monday 18th April 2016 saw the start of a UK campaign to raise awareness of the thousands of learning disabled people currently being held against their wishes in assessment and treatment units. Often, these units are hundreds of miles from the person’s home. The average time spent in an ATU (assessment and treatment unit) is 5.5 years. The average cost per week for treatment in an ATU is £3500.

The campaign will be presenting a number of stories over the next week. Stories of people who have been trapped in their unit for years. Stories of people who have managed to be freed from their detention but still bear the scars of their experience and sadly, stories of people who have died whilst in the care of their unit.

We make no apologies that the stories are relentlessly bleak. Life in an ATU is relentlessly bleak. The stories are painful to read and you may feel like giving up on the blog. Please don’t. We feel it is important that the reality of Eden, Stephen, Tianze, Thomas, Joshua, Jack, Ryan, Connor, Eddie and Robert’s lives are heard.

They need you to hear their story.

Please check out the other pages of this blog. Watch and listen to the selection of ATU films and songs. Read a mother’s poetry. Check out Sam Sly’s plans for life outside an ATU. Absorb Chris Hatton’s ATU facts and figures and if you would like to contribute to the blog, please let us know.

And please, as the 7 Days of Action progresses and you read the stories, ask yourselves, what can I do to help these young people have the life they deserve.

Thank you.