A New Push

We’ve decided another “push” is needed on the 7 Days of Action front. Although Robert is home and Jack has been discharged from the ATU, things are happening less fast for the other dudes.  Every day, a new story emerges of another person being admitted to an ATU.

So, inspired by a Facebook post from Jackie Stillman (Robert’s mother) about how Robert’s personal hygiene was completely neglected during his time in the Unit, we will be running another series of 7 blog posts.

The difference this time is that they will focus on themes rather than having an individual’s story each day. That way we can focus on more than 7 people but also push the awful themes that have been, sadly, so consistent since people have been telling their experiences. It’s still a work in progress but we have seven subjects that we think would capture a wide range of experiences.

  1. The Role Call of Dudes
  2. “Treatment”
  3. Exclusion of Family & Friends
  4. Loss of Dignity, Self Respect & Autonomy (Including abuse of law designed to protect)
  5. Institutionalism
  6. Impact on Physical & Psychological Health
  7. Post ATU Scars

We’re sure there are probably many other topics we could cover. We are not embedded to the seven mentioned above, so if anyone has any other suggestions, please let us know.

It seems, in order to get the best coverage we plan to hold the next 7 Days of Action in early September, after the holiday season has finished.

Between now and September we would like to capture as many stories as possible that illustrate the themes 1-7 above. If you can contribute your experiences in any way, please get in touch by email to ourstories@sevendaysofaction.net .We are quite happy to publish your stories anonymously if that is what you would prefer.

Please don’t forget to watch our campaign video documentary here

It’s time for those Ninja outfits again, we think…..

News From The Past Seven Days

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

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

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

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

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

And now for the bad news:

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

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

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

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

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

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

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

“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.

Thomas1

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.

Thomas9

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.

Life For A Learning Disabled Person 2016

Monday 18th April 2016 saw the start of a UK campaign to raise awareness of the thousands of learning disabled people currently being held against their wishes in assessment and treatment units. Often, these units are hundreds of miles from the person’s home. The average time spent in an ATU (assessment and treatment unit) is 5.5 years. The average cost per week for treatment in an ATU is £3500.

The campaign will be presenting a number of stories over the next week. Stories of people who have been trapped in their unit for years. Stories of people who have managed to be freed from their detention but still bear the scars of their experience and sadly, stories of people who have died whilst in the care of their unit.

We make no apologies that the stories are relentlessly bleak. Life in an ATU is relentlessly bleak. The stories are painful to read and you may feel like giving up on the blog. Please don’t. We feel it is important that the reality of Eden, Stephen, Tianze, Thomas, Joshua, Jack, Ryan, Connor, Eddie and Robert’s lives are heard.

They need you to hear their story.

Please check out the other pages of this blog. Watch and listen to the selection of ATU films and songs. Read a mother’s poetry. Check out Sam Sly’s plans for life outside an ATU. Absorb Chris Hatton’s ATU facts and figures and if you would like to contribute to the blog, please let us know.

And please, as the 7 Days of Action progresses and you read the stories, ask yourselves, what can I do to help these young people have the life they deserve.

Thank you.