“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.

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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.