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

 

 

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P

 

Our post on the final day of 7 Days of Action brings two very harsh truths about the current state of social care into focus.

This story has been anonymised. We won’t get to know the young dude’s name. We won’t get to see what he looks like. The family have received a lot of pressure not to reveal his identity. This is common. Like a court judgment, we will refer to the dude at the heart of the story as P.

Secondly, it is important to note in the story that the family weren’t having any problems at all with their dude prior to him going into the ATU. The mother asked for respite because SHE was ill. Family members’ illness is a common passport to detention in an ATU.

Here is our young dude’s story in his mother’s words:

My son is 17 years old.  He is locked away, miles from home, away from his family and everything that is familiar to him. Is he a criminal being punished for a crime? No, he has Autism, severe learning difficulties and this can result in behaviour that challenges.

He is sectioned under the mental health act in an assessment and treatment unit. The night he was sectioned was the worst night of my life. You see I had only asked for a bit of help, some respite, a short break, as I was unwell.

He had stayed late at school and I had been told respite was being arranged but it ended up with him being sectioned. He was taken by school staff who were being instructed by social services to a local adult mental health hospital, but rightly so the hospital refused to let him in as he was only 16 years old.

He was left sitting in the school transport in the hospital carpark for about 45 minutes with absolutely no understanding of what was going on, out of his structure and routine. He really doesn’t like waiting at the best of times, so after a while he became upset by just sitting there. His screams of distress echoed around the carpark.

The Social worker then called the police. They arrived, two cars with blue lights and sirens all for a boy that was upset. He was put into a police car and driven through to the back of the hospital. The police then placed him on a section 136 and he was allowed into a room in the hospital with two police officers.

He was assessed by two doctors and placed on a section 2 but had to stay where he was for the night as it was late. This meant he spent the night in an assessment room on a settee as there was no bed. He was given medication to make him sleep and the two police officers had to stay with him.

His dad, me and his auntie were all at the hospital but we were not allowed to see him. The school staff were still there too and some of them were in tears.

The next day he was transferred to an A.T.U and we were told not to visit him for a few days to allow him to settle in. When we finally got to see him he had two serious head injuries from banging his head on the floor while being restrained. As soon as he saw us he picked up his bag and thought we had come to take him home. I will never forget the look in his eyes as I had to leave him there and walk out the door.

As he was on a lot of different medication the Doctor in the A.T.U assessed him and decided to wean him off all medications. So over the next 15 weeks our life became an endless cycle of driving to the A.T.U every other day to visit him and try and maintain our family relationship.

He was discharged home and was so happy, however the support services we were given which were 4 hours a week were inadequate and after 7 weeks due to sheer boredom and a lack of things to do he ended up causing some damage at home and he was sectioned again, but this time we were told it was for a couple of weeks while a residential school was found for him.

For one reason or another the residential school plan never worked out as planned and now 7 months later he is still there, back on medications again, and effectively stuck on a section as he has nowhere to go. This is now an illegal use of a section as he is not being assessed and his treatment is complete and he has been ready for discharge for months now.

Along with his Autism he also has high sensory needs. He is in a unit that is extremely noisy, all noise echoes around the building and he walks around a lot with his fingers in his ears as a way of coping.

He has lost a lot of weight since being back in there and he does not eat the food in there as he has autism, he only likes particular foods.

Some days he really struggles there and constantly asks for his mom and he asks to go home all the time but you can’t really explain to him why he’s there and why he just can’t come home. He has not had any education for a year now and discharge planning is at a standstill because no one can agree where he should go. He has expressed that he wants to come home and go back to school but he’s not being listened to.

He spends a lot of his day pacing around the unit as there’s not much to occupy him. Sometimes he goes out to local parks and to McDonald’s for dinner.

On the unit he does some colouring or watches television. I try to visit him about 3 times a week now and I take a big bag of activities for him so he has something to do.

I would like to have him home but I would need proper support and if this is not possible he needs to be in his own home near to us as family is very important to him. The Doctor agrees that he should be near to his family too.

Social services think he would be better in an adult placement although we don’t have any of these in our borough so that would mean him living miles away.

The big concern now is staying in the A.T.U much longer will make his behaviours worse and it will do him more harm than good. This delay in discharge planning is frustrating as we have meeting after meeting and things never move forward. The Doctor has given notice that he needs to be discharged by the latest in July. Everyone involved agrees that he should not be there but no one can agree where he should be.

While all the professionals go home to their nice lives after yet another unresolved meeting, my son is struggling being stuck in an A.T.U and I barely sleep with worrying what will happen to him.

I’m hoping the next meeting we have we can work together and agree something otherwise I can’t see an end to this situation. I believe we would never have been in this situation to start with if it was not for the closure of local services due to funding being cut, as he had lived at home all his life and was happy going to school and to monthly respite. He had his moments of behaviour but they were not as frequent as they are now and that is just through the sheer distress of him being stuck in an A.T.U.

 

 

 

 

 

 

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.

family 2

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.

 

 

 

“Natural Causes”

Thomas Rawnsley died on the 4th February 2015. He was 20 years old. Thomas had a diagnosis of Downs Syndrome and Autism. He was just 4ft 10″ in height. Thomas had been in three different ATUs leading up to his death.

Here are the words of Thomas’s mother Paula.

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Someone told me at my sons funeral that time would heal. That I would never forget him but it would get easier. I don’t want to talk about his unspeakable, cruel death he suffered alone and away from me. I don’t want to think about the horror he faced in those final hours away from me. I hurt for him and me more and more every day. I fought so hard for my boy. They were always so powerful and Thomas was special to me.

I didn’t know how I was going to cope with him when I found out he had Downs Syndrome. His father and I were so worried, no one gave us any hope or encouragement but we tried so hard alone and brought up the sweetest, mischievous, loving boy ever. He loved his three older sisters and they loved him equally. We had one great family and we struggled with all the ups and downs families have normally.

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But like many children going into their teens Thomas started to be troubled. Although very slight in stature (he was only 4ft 10) he could be very strong. He also was diagnosed at this time with autism and so trying to understand what was happening to him was hard. He didn’t want to go to school and I was under pressure to get him and the others to school. I asked for help. How I wish that I never had asked for help now. How I wish darling Thomas I had kept you by my side and never let you go.

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The journey for Thomas was a darker and terrifying descent into a land of hospitals, drugs, cruelty and abuse resulting in a ‘carer’ targeting him deliberately and bending back his fingers to torture him among other means of torture and repression. Thomas had a will and stood up for himself despite his small size but they gradually beat him down and then they broke him and us with him the day he died in their non care. I knew he would die away from me. When he was finally sent away from us by a judge who said he “was getting bored and needed his tea’ I wept. I knew he would never come home. I knew it would be the end. I’d been secretly gagged by the court for daring to talk about the previous abuse in a local paper . I had nowhere to go with my problems and pleading. Thomas’s official advocate had promised to stand against the transfer to the home in Sheffield but he turned against him on the day and agreed with the courts. Thomas was bundled off sobbing and I didn’t get the chance to say good bye.

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The odds were always stacked against us. The last meeting I had with the professionals there were three lawyers in the room plus senior officers. We had a volunteer with us. We were not listened to. I told them Thomas had a serious chest infection and they said it wasn’t up for discussion at that meeting. Instead they told us it was an expensive meeting so I needed to listen to the important people. They had no intention of getting any grant money on offer to get Thomas housing. They stopped the application. It would have given us some hope and my darling boy some hope. Instead he died feeling hopeless and losing his faith in anyone to help him. The professionals at the meeting refused to let the Minister of Health Norman  Lamb have information that day or the BBC who were interested in Thomas’s story. I know in my heart that if they had not gagged us again like that Thomas would be alive today as they wanted to go and get information over the next few days.

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A week later Thomas was dead. A secret trip by a senior, and in my view, vengeful local authority officer to the court resulted in me being gagged again. I was unable to get to the people who could do something to help, and that cost Thomas his life. It was under the pretext of being in his best interests that the application to silence me was made. But it was because I criticised them for failing to look after my son properly and commissioning such appalling services. But all of those in power change their stories and have no accountability.

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It was snowing the week Thomas died. The home told me not to go. They didn’t tell me how ill he really was. I set out and turned back because the snow was so bad.  I’ll never forgive myself. I can’t live with the knowledge that I left him there in their hands. I have read reports now before his inquest that I can’t  share or discuss yet. But I lie here alone in my flat desperate and guilty that the horror of his death was avoidable. It’s not something that time heals. It gnaws, twists, wrenches and possesses me in an agony that is indescribable. I post pictures of some crazy nights to make people think I’m ok but the craziness is all in me. I’m going mad with the pain and guilt of it all.

My boy, my vulnerable boy died alone without me. They immediately said it was natural causes but a lifetime of pain, separation, cocktails of drugs, sobbing to come home, pleading to see the Judge, fell on their cruel dispassionate ears and we, his family are left to tend his grave. I had to agree to turn off the life support system of the baby who I brought into this world and that I loved for every special bit of him.

Justice for my boy Thomas Rawnsley

 

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A Request:

Thomas’s final pre-inquest hearing is in Sheffield at 11am on the 5th May. Paula would really appreciate as much support as we can gather. If you are free on that day and are able to attend, we know that Paula would really appreciate the support.