The Iron Gate

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

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

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 Steven became withdrawn and became a shell of the boy that we knew and love.

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

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

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

There is no sign of Stephen returning back home.

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

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

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I fear for my son’s life. No exaggerating

And I see no turning back time.

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

It’s as if he has lost his soul.

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

Here’s the email Leo received from the hospital:

Dear Leo,

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

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

I hope this helps clarify your request

We’ll end with Leo’s own words:

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

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

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

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

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

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

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

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

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

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

Imagining Home

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

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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.

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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

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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.

 

 

 

“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.