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

 

 

Life in a Conservatory

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Jack was born with ATRX syndrome (Alpha-thalassemia X-linked intellectual disability) which on its own has its difficulties. He attended a special school and had no issues there at all until it was time to leave at 16.

Jack’s anxieties were heightened more and more on the transition from school to college. He only visited the college once and on starting there, he found things very difficult. By this time he was known to CLDT team and was put on antipsychotic drugs.

Jack managed 18 months of college before they eventually excluded him because they could no longer support him. The next 18 months support came under the social care umbrella where they threw all kinds of support charities at him. It was inconsistent, which is the worst type of support when you have needs like Jack’s.

He hated it and his difficulties got worse to the point where he would go into town alone (as he was encouraged by the social care team to do) and get into trouble. The social care team didn’t like this and tried hard to control his life, activities etc. The psychiatrist was shelling out the drugs but wasn’t interested in Jack as a person at all. She prescribed 3 different drugs that he had extreme effects from, which added to his anxieties.

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I had asked for an autism assessment since Jack left school, but it fell on deaf ears.

The events leading to Jack’s first section(2) under the Mental Health Act (please bear in mind that Jack has never been diagnosed with a mental health problem) was the professionals believed that Jack needed help. To our regret, we went along with this and left him there for 28 days.

On discharge Jack had no diagnosis (autism or mental health), no care plan or aftercare. My husband had to give up his job to support him with me. They stripped Jack of all the meds they had previously prescribed and we had to wait 8 weeks to see a psychiatrist. But by this time he was finding things even more difficult.. My husband returned to work after the 8 weeks and Jack’s behaviour became challenging again and aimed at me a lot of the time.

Social services offered a flat for Jack. There was no transition, we weren’t allowed to see it beforehand and we were given just three days to prepare Jack for the move. We dropped him off on a Sunday afternoon. We spent 2 hours cleaning what the professionals called the flat. It wasn’t a flat. It was a conservatory added on to a bungalow that housed two other residents. In the conservatory Jack had a seating area and a small kitchenette. He had a single bed in the corridor between the conservatory and the rest of the house and a bathroom at the end of the corridor. We left him with 2 guys that hardly spoke to us. That evening it was highlighted that it was the wrong place for Jack but he was kept there for a further 2 days.

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Jack was so anxious and broken in the conservatory that the psychiatrist waded in there and then and sectioned him again. He was sent to an ATU in Birmingham. We live in Gloucestershire. I was not consulted at any point but the official papers says different! Jack pleaded with them for a second chance in the conservatory, even though he hated it and was very frightened there. He didn’t get one! After being in Birmingham for 2 weeks and after a lot of history written by myself, the ATU confirmed the diagnosis of autism and ADHD. Jack responded well to treatment and now has 3 days home leave each week. He is now waiting for a care provider to produce a team of people that can support Jack to come back to Gloucestershire.

Jacks section ended on 28 March 2016 but this has been renewed because of the wait for a care package to be put in place back at home. We see the section being renewed indefinitely, not because Jack needs to be under section but because the LA are making no effort in putting a care package together. They don’t have to spend a single penny whilst Jack is in the ATU and we get the impression they would like to keep it that way.

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The hospital are now trying to undermine our experience of Jack. We dont get any problems when Jack comes home on leave, although he gets very anxious prior to a home visit in case they cancel it. A couple of weeks ago, they cancelled Jack’s weekend home and Jack cleaned the whole ward in an attempt to get them to change their mind. Unfortunately, the unit are now saying they don’t  believe our reports of Jack’s behaviour at home. I know from other families that this is a familiar tactic to discredit families, it still feels very threatening for Jack’s future.

Jacks time in this ATU has really affected him. The tribunals,  the reviews have all taken their toll on him. It will take a long time to forget. Their control over him and us is disgusting, they pull the strings and we jump! I’d like to add being taken from home and sectioned in two different units could all have been avoided if a diagnosis was offered to him here in the community, but he had to be sectioned to get it!

Jack’s young life has been ruined all because the professionals couldn’t be bothered to get to know him. Unresponsive. A cocktail of antipsychotic drugs. No wonder he doesn’t know what day of the week it is

Jack hasn’t lived yet. He hasn’t had a friend and feels very unsafe at the moment

Jack2

 

 

 

“Mum I Can’t Get The Words Out”

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The first post tells the story of Eden Norris. We chose this story to begin the seven days of action because Eden has been in ATUs for the last seven years of his life. This is way beyond the national average for time spent in ATUs.

Eden is 24. He has a moderate learning disability and autism.

Eden has been in 2 units and was admitted to the first unit aged 17. He remained there for 5 years and 4 months. It was an adult medium forensic unit which the family didn’t realise until after he had gone there. He had no criminal history. His parents agreed to him going there for an assessment as things had reached crisis point due to lack of the right support. Though Eden was admitted as a voluntary patient he was later sectioned under the Mental Health Act (section 37) following staff pressing charges after episodes of challenging behaviour. The episodes of challenging behaviour were often caused by things like staff locking his toys away.  Eden was overmedicated and secluded for long periods of time. He put on 16 stone while he was there and for most of his years in this unit Eden was kept all day long in a single room. The room had no toilet facilities, so inevitably, Eden repeatedly soiled himself. He was fed through a hatch in the door. He very seldom had face to face one to one contact with the staff.

Eden has been in a second unit since January 2015. This is many miles away from home. It is a remote location, 15 miles from the nearest town. It is a 13-hour round trip for his mum to visit him. Eden was allocated a shack in the woods for his sleeping quarters. He loves swimming but hasn’t been since being in this unit. The nearest pool is many miles away and there is never enough staff employed on a shift to support Eden to swimming. Most of his day is spent either in his room or taking long walks in the unit grounds.

Eden had an Improving Lives Team review in February 2015. Everyone was clear that discharge planning should start and an appropriate package of support be developed in the community. The commissioner from his home area met with the family and said they would start planning. However, 13 months on, no steps have been taken to do this and there is no discharge date. Eden ’s parents have made formal complaints about his care but nothing has been done.

Eden’s mum has done a huge amount of work to explore and approach housing and support providers locally and involve experts to help design a potential package of housing and support (these include the Housing and Support Alliance, Dimensions, My Safe Home and Yarrow Housing). She has found providers that would be willing to develop and provide a package for Eden if Hammersmith & Fulham LA give the go ahead. She has given all the details to the commissioner at H&F. They do not appear to have done anything with this information.

At the CPA meeting in September 2015 no proper steps had been taken by H&F in relation to discharge planning. In the last year they have had 3 meetings with the commissioner where they have discussed the research Eden’s mum has done. They went through budgets and talked about type of accommodation. But nothing has been taken forward, despite promises.

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When Eden first moved to the current unit staff communicated with him via a hatch. This was because of information passed on by the psychiatrist at the previous unit. Soon after, the current unit realised how wrong and misleading this information had been about Eden and one of the staff said “he shouldn’t be here”.

He should never have gone to the medium forensic unit. He had been living in residential care from the age of 15. The family were struggling to cope due to lack of support from H&F but he had been doing very little at the residential care placement and was really bored. He came home for visits where he would do things with his family. His mum remembers he had been out in the garden at home on the trampoline, playing swingball and going to a Nepalese restaurant a couple of months before he ended up in the unit. He had been so bored at the care home.  There had just been a little supermarket nearby. There was nothing to do. There were activities and things to do in the nearby town but it was a 2 mile walk away and there was no transport due to lack of funding so Eden was hardly ever able to access activities. It was no surprise that things got to a crisis point.

Eden is someone who can talk and say how he feels and what he thinks. But what his family have seen over the last few months is very concerning. It appears that everything is being done to stop Eden having a voice. Eden ’s mum thinks this could be a response to her trying to get help with Eden ’s case and making complaints to move things forward. Several months ago the hospital did everything they could to block the relationship between Eden and his mum’s partner, who Eden talks to and opens up to. They tried to shut this relationship down by saying he was not the biological father so couldn’t ring.

Soon after the September 2015 CPA meeting Eden’s mum was not allowed to speak to Eden for 10 days. She phoned but was told that Eden did not want to speak to her. This was very out of character. Following this, she heard that Eden had hit out at 3 people in the unit. He had not had any incidents for 2.5 years. His family think the distress of not speaking to his mum could have triggered this behaviour and are worried that this could now be given as a reason why Eden shouldn’t be discharged. The protocol about phoning has changed. His mum is now told that they can not phone him. They can phone and then staff will ask Eden if he wants to speak to them, or Eden can phone them when he wants to. When his mum visits and they get some precious time alone she supports him to phone his sister and his Gran and he loves speaking to them. He needs support to speak to those he loves. The unit should be facilitating contact with his family and prompting him.

The consequence is he is speaking much less to his family. He is naturally a lively boy but he has become monosyllabic. His medication has also been increased. When mum does speak the call is on loudspeaker. His speaking is slurred because of the drugs. He has said ‘mum I can’t get the words out’ because his face is paralysed as a side effect of the drug. The drugs are also shutting his thinking down, which makes it hard for him to make choices and ask. It is very concerning. The unit are using phrases like it is in his best interests, his choice etc. His mum is watching him sink into himself.

His mum is also concerned he is not getting enough to drink. He used to ask for a drink  frequently but he doesn’t now. It is important he drinks enough water being on so much medication. His mum has raised concerns about this. Being on the drug shuts his thinking down and may mean he doesn’t ask for a drink.

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His medication had been reduced to 200 mg of Clopixol per week, but it has been put up to 300 mg per week. (Note: Clopixol is an antipsychotic but Eden does not have a psychotic disorder). Eden told his mum that his medication had gone up, the unit didn’t inform her about this. Being on less medication meant Eden was talking more. His family fear his medication has been put up to try and keep Eden quiet.

Timing wise his mum realises his medication was put up on 25th Nov, a couple of days after the communication that, an old family friend, Rev. Rudi had sent about Eden’s experience in units. Eden’s mum thinks this could be a direct response and part of the hospital shutting things down, overmedicating Eden and reducing phone contact with the family. Following the communication from Rudi, a social worker from safeguarding in Norfolk contacted Eden’s mum about the Facebook petition they have for Eden asking them to take it down.

The family keep being put in the position where there is no action to move things forward and when they do speak out the hospital closes communication channels and she gets calls from professionals which have a very controlling, threatening feel and naturally make Eden’s mum fear things could get worse for Eden .

In the Improving Lives review in March 2015 Eden is quoted as saying “I don’t want to live here, I would give it one out of ten. I like looking after animals best. I want to live in London near my mum”. He loves the Shepherd’s Bush area. He grew up using the parks in London .

Eden’s mum was told a while ago that it might be unlikely he could come and live back in the family home (as it would need adaptations and it might be complicated to make this happen). So Eden’s mum gently started talking about ‘a house near mum’ to help get Eden used to the idea of being in his own house but still near to mum. Eden got used to this and the language moved from ‘living with mum’ to ‘living in his own house near mum’. Eden has suddenly been asked a lot about where he wants to live. This is a new question and has been confusing for Eden. He has always said he wants to live with or near his mum. H&F seem to be actively encouraging Eden to be eventually discharged to Norfolk . They do not seem to want to arrange the care package for Eden and the ongoing responsibility for Eden in H&F. There are some real concerns about what is going on and how the law is being used.

In the meantime, Eden will shortly be entering his eighth year, away from his home and family.

7 Days of Action need your help in getting Eden the home he so deserves after seven years away from his family.