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

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.

 

 

 

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“Mum I Can’t Get The Words Out”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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