News From The Past Seven Days

As promised, here is an update of the seven dudes featured in 7 Days of Action and some news on the campaign itself.

It is probably fair to say that there have been markedly differing consequences for the seven families whose stories we featured a week ago. Whilst we can announce an incredibly positive story, we are also sad to report that the threats and intimidation from the professionals has cranked up for some of the families. As a result, we will be reporting a couple of the bad things that have happened anonymously, so not to inflame the professionals who are following the campaign.

First, the most brilliant news. Robert, our day six dude, is returning home. In what was quite a remarkable U-turn by the LA, who a week earlier were still planning on sending Robert further from home to Devon, the council have now agreed Jackie’s proposal. The property that Jackie found has been accepted as being in Robert’s best interests and the new care providers have already started working with him. The final move is expected to happen in the next four weeks.

There is also a small glimmer of light for Jack, our day two dude, as well. Although no discharge date has been set and a further review meeting set for next month, the professionals have started working with Jack and Eve on drawing up his person centred plan. The plan will be geared towards Jack living back in the community. Yesterday, Jack went to see the flat that will eventually be his new home, so he can now start visualising what his life there will look like.

A couple of pieces of good news arising from the campaign. An independent documentary producer got in touch with a plan to make a short film about ATUs and filming starts on that next week. Also, we were contacted by a major university seeking permission to include the Seven Days of Action material in a new social work course they are devising.

And now for the bad news:

We’ll start with a rhetorical question. Imagine you’re a mother who is informed that earlier that day your son had been hurt whilst being pinned down, which apparently some of the staff found very funny and laughed at him. Is this an assault? Is it a safeguarding issue? On top of that, the mother is frightened of reporting the matter officially because of the way she has experienced reprisals in the past for reporting similar incidents.

Another mother went to visit her son yesterday. She was met at the gates by the security guards and was told that she couldn’t enter if she was wearing any clothes that had pockets. They said that they didn’t want her bringing her phone or camera on to the premises, so she had to leave her coat and her bag in the car. This seems to us a very punishing rule. Families tend to respect the privacy of other residents and have no intention of photographing them. But families document their history through photos. It’s how we tell out stories and pass them on to future generations. Although, this is a horrible time in this dude’s history, it is still part of his life that will have a large pictorial chunk missing.

One mother has been threatened in the last week with a gagging order. The LA, having seen the blog, threatened to go to court to place a restriction on the mother discussing her son online. Personally I feel that if the State spent as much energy as they do in surveilling families online activity on providing decent care, all the dudes in the six ATU stories would be home by now.

Nina had a CPA meeting on Monday. Expecting the meeting to focus on Tianze’s discharge, she was shocked to hear the responsible clinician announce that the period of assessment would take another 18 months. His rationale was that the previous 21 months’ worth of assessment took place in a children’s hospital. Now that Tianze is in an adult unit, the timescale for assessment has been reset to zero and all the previous data collected is void. The family fear and wonder how another 18 months away from home and from the love of his family, and being in an articial and restricted environment can be of any help to Tianze.

And Paula received the distressing news that Thomas’s final pre-inquest hearing that had been set for the 5th May had been adjourned with no date yet fixed. The explanation was that “some of the other parties need more time to assemble their case”. In the same week as the Hillsborough inquest, this raises the issue again about the disparity in legal representation at inquests. The phrase “some of the other parties” suggest that there are quite a few parties involved, all will have their legal costs paid for by the State. Paula won’t.

We’ll finish this update by reposting Mark Brown’s brilliant post
7daysofaction…and a Ninja Project?

Many people have asked the question, what happens next and it’s important that we don’t lose the momentum or support that built up over seven days. Please read mark’s blog. He makes several suggestions about the next course of action and we are very keen to receive as much feedback as possible before Phase Two.

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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

 

 

Imagining Home

Tianze Ni has been detained in ATUs since May 2014. Here is his mother’s story of that time:

tianze on leave

My 18 year old son Tianze has autism, a learning disability and sometimes behaviour issues.

We used to live happily in Fife, Scotland with Tianze, but in May 2014 when Tianze was 16 years old he was moved to a hospital in Middlesbrough North Yorkshire, over 200 miles away from home, to have an assessment. It was only supposed to be for maximum 6 week assessment.

The professionals told us that in order to carry out this short term assessment, Tianze needs to be sectioned. However, two years later, Tianze is still there and we still don’t have his discharge plan yet.  We have followed Tianze to  Middlesbrough by selling our house in Scotland. Tianze has developed self harming behaviour in hospital. Tianze has developed bedsores in hospital ,Tianze has been subject to prone restraint regularly in hospital. Since May 2014, Tianze has been transferred from Scotland to Middlesbrough, from Middlesbrough to Prudhoe and from Prudhoe to Morpeth. Tianze has lots of injury marks during his two years in in-patient services which never happened at home. He has lost weight in his two years hospital.

Tianze attended a residential school before hospital. The school was 1 hour away from our home and he came back home every weekend and for the school holidays . After breaks in his routine, he had a meltdown in his residential school in March 2014 and he was transferred to a day pupil at the school. His routine quickly broke down. We didn’t have any support workers at home to support us after the school placement broke down.

During the Easter holidays in 2014, Tianze had no respite in place. Tianze feels sometimes he needs to go somewhere for respite and often ended up in A&E. The hospital referred him to a mental health hospital in Fife in April 2014, but he was allowed to return home on leave. On 29th April 2014, a mental health tribunal gave our son  a  CTO (Compulsory Treatment Order). Then he was formally detained in the hospital in Fife. The hospital didn’t have the capacity to assess Tianze, so they decided to move him to England. I thought the CTO was part of a plan to help him get better and for us to receive better support, but what I didn’t expect was that he would actually become worse. The only strategies in Fife were to lock him up and detain him without any treatment. It is inhuman treatment .

Tianze was detained in the mental health hospital in Fife Scotland from 29th April till 6th of May of 2014 and then they transferred him into a general low secure mental health hospital in Middlesbrough on 6th of May 2014.

In August 2014 the  doctor in the Middlesbrough hospital declared that Tianze’s assessment had finished and said he needs a placement so that my son can be discharged . but there was no residential placement in Scotland ready for him at that time. Tianze‘s old residential school was rejected by LA as unsuitable, even though the school were prepared to take Tianze back. So, after finishing the assessment in August 2014, he remained stuck in the mental health hospital in Middlesbrough as there was nowhere for him to be discharged to. The hospital is not geared towards autism, so problems just got worse. In first instance, he should never have gone there.

Every week we had to travel  400 miles round trip to see Tianze. It is 12-14 hours total journey for a two hour supervised visit. Sometimes if he had been slightly agitated we would arrive to find our visit had been cancelled.

Tianze is highly homesick and misses home so much. He has written a song called “Back Home” that he sings everyday to me.

Tianze wakes up each day at 4 AM and crosses one day off from his calendar and is counting the days back home daily. He draws lots of pictures of his home but doesn’t like his personal belongings left at the hospital. That is not easy for a child to do daily for a year now !! What inhuman treatment we receive in this so called civilized country!

Since he has been away from home he has started self harming behaviour. Currently he has injury marks on both arms while before hospital there was no injury marks on his body. We discovered some bedsores in March- April 2015 due to him sleeping on the hospital floor for long periods of time! What a shock, this happened to a young boy full of energy!

Tianze also has been discovered with injury marks caused by restraint actions. We called in the Safeguarding team in 2015.

tianze injury 121

Since Tianze is in England, we aren’t entitled to any legal aid to receive any legal help in Scotland. We have contacted both Mencap and the Care Minister who both said they can’t help us because we lived in Scotland . In order to be closer to Tianze and reduce the legal confusion we made the decision to move house to Middlesbrough from Scotland. We sold our house and temporarily rented a house in Middlesbrough for six months. We have now purchased a house there.

Before Christmas 2014, Tianze was allowed home leave with us every weekend. We would go to the public parks, museums, shopping and beaches. That stopped with the move to the new hospital who now refuse any home leave at all. Tianze misses his home so much. He was so upset to see other patients can have home leave but he can’t despite the fact that we have moved home to within 5 minutes drive from the hospital.

Eventually, all the professionals decided that Tianze needed to move into another hospital in Prudhoe Northumberland which has a learning disabilities input. The professionals said that this would be short term for further more appropriate assessment and then he will be discharged with a community care package. We visited the hospital before. They showed us a music therapy room with piano and drums which we knew our son would enjoy as music is very important to him. We were shown a kitchen to allow patients to practice life skills and a big sports hall and one workshop for patients to do some handicraft. We felt happy about these facilities inside the hospital and saw this as a sign of progress. Although I still felt unhappy that it was another hospital and not a return home, we in the family are given no choice and have to agree to another move.

After transferring to the hospital in Prudhoe, Improving Lives Team came to review Tianze’s treatment and make a plan for the future. After review they recommended Tianze should be discharged back home around his 18th birthday time . They also recommended that the hospital needs to reduce IM and prone restraints in a few weeks time. I felt happy about this recommendation from the Improving lives Team and feel we had hope.

But soon it turned into nightmare again …

Before the CPA in September 2015 the professionals had a meeting and all agreed that the community care package isn’t ready now and funding is still in dispute with Scotland. Then in the CPA in September 2015 The Responsible Clinician said Tianze needs another adult hospital since he needs IM and prone restraint often and a community placement wouldn’t be appropriate whilst this need was still high. In converse of the recommendation of reducing prone restraint, the hospital has significantly increased prone restraint to him as a regular practice and we constantly view Tianze being held down on floor. Tianze has increased injury marks to his body and these injuries were caused either from prone restraint itself or his increased self harming behaviour.  We also constantly seeing them prone restraint Tianze in front of us during our visit time. After they put Tianze onto the floor they order us to leave like a fire happened and without allowing us to take our personal belongs . We feel both Tianze and us are treated like animals to be driven away and feel bullied

prone restraint drawing

Three times safeguarding alerts have been raised in 7 months stay in this hospital in Prudhoe. Once from the national clinical director of learning disabilities and twice from the charity – Challenging Behaviour Foundation.

After ILT recommended him home with support, we did all our new house adaptations. We have built a sensory room in our home. We have built a quiet house for Tianze when he needs space. We have put TV and lamps all protected .We have built a separate wall between the kitchen and the dinning room. We didn’t receive any funding support from any public organization or charity organization. We relied on our own fundraising.

As I am Tianze’s nearest relative I asked for him to be discharged. The doctor initially said it will give me a black mark in my history, but after advice from their trust solicitor he agreed that I can ask for discharge as nearest relative . But we have failed at the tribunal since the doctor reported there had been too many incidents and he is a risk to himself and to others. Nobody considers why he has increased incidents ? Why he has deteriorated since being in hospital.

After this failed tribunal in early January 2016 the professionals have decided to transfer Tianze to an adult hospital in Morpeth which is 65 miles from our new home in Middlesbrough. The CTR didn’t interview our son but recommended another year before starting a transition back into the community.

On 27th of January 2016 Tianze was transferred to the 4th adult hospital . The good news is that this hospital has a specialist autism unit and a better understanding of autism. Since Tianze has been at this hospital his incidents have reduced.

The Government promised people with autism would be given the best possible care in their communities. Instead Tianze has been severely let down by the institutions who are supposed to be helping us and he needs to be back with his family where he belongs.

We are a Chinese family, our culture is a very family oriented culture. Tianze likes to eat home cooked Chinese dinner, but suddenly he was given western hospital food which made him lose significant weight. Due to being highly homesick and not being allowed any home leave he has developed self harming behaviour significantly and enhanced biting behaviour.

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Tianze has written that he only can imagine his freedom. He has said that he can only imagine his home. So sad! What crime has he committed?

Please sign and share Tianze’s petition to bring him home. Thank you.

 

 

 

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.