A Snapshot

On the 7 Days of Action Facebook group, we have been collecting short but very powerful snapshots to be included during the September campaign.

The snapshot asks three questions. They can cover people who have been discharged or are still detained:

  1. How did your family member come to be in an ATU?
  2. How long have they been there?
  3. How many miles is the ATU from their normal home?

We would be very grateful if you could contribute your story to this part of the campaign.

You can post directly to the thread at: https://www.facebook.com/groups/7daysofaction/permalink/490254581144823/?comment_id=490363881133893&notif_t=group_comment&notif_id=1470171555491265

If you prefer to remain anonymous, you can message one of the admins, Jackie Stillman, Jules Hip, Julie Newcombe or Mark Neary.

You can post your story in the comments section on this blog.

You can message the official Twitter account at @7Daysofaction

You can email the admin team at: ourstories@sevendaysofaction.net

 

Thanks for your help.

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Eden Norris: An Update

Back in April during the week long campaign, we featured on Day One, the story of Eden Norris. Eden has been in ATUs continuously for seven years. The blog post attracted a massive number of views and Eden was featured on the BBC News and in the film “Stuck In The System”.

For a few hopeful weeks in April, it looked like Eden might be moving towards a discharge. Then, a minor incident happened and all those plans seem further away than ever.

We’ve asked Eden’s mum, Deb, to update us on what has happened since April……

” In April, Eden’s responsible Clinician was talking about discharge around September/October 2016. Whilst we all felt hopeful, we were nervous too because exactly the same plan was put in place last year. Eden’s hopes were raised but it all came to nothing as the LA could not find suitable housing and wouldn’t agree on a support package. Despite a year of many meetings with the LA to talk about housing and providers, nothing happened and Eden became more depressed. We were told that funding wasn’t the issue but don’t understand why the plans have come to nothing.

Eden is 160 miles from home and is cut off from me, his siblings, his grandparents and his beloved dog. As the journey is a 13 hour round trip which involves three trains, I can only visit Eden once a fortnight. Every visit begins and ends with Eden asking, “When am I coming home? Is my flat ready yet?” It breaks my heart that I can’t answer either of those questions. And as I am his mother, Eden doesn’t understand why I can’t answer them either.

Eden has autism and learning difficulties but has never been diagnosed with a mental health problem.

During April and May, Eden was allowed to have five visits out of the Unit during my visiting time. With two staff from the Unit, we went into Norwich and he thoroughly enjoyed the meals out, bowling, the amusement arcades and walking around the shops. Eden likes people and is very chatty, so naturally he became alive during these trips out.

Then one day, it all changed. We had enjoyed a lovely day out and came to the point of returning back to the ATU. We were in the town and as instructed by the staff, I went to the station to pick up my return train. At some point, shortly after I left, Eden decided that he didn’t want to go back to the Unit but wanted to come home with me. The Unit car was parked on the 7th floor of a multi storey car park and Eden refused to walk back to it. The staff called the Unit and were advised to call the police. Eden was not being aggressive but was stubbornly refusing to move an inch. The police arrived and thankfully they really liked Eden. Eventually, about 7 hours later, Eden was returned to the ATU in the hospital van.

Eden hasn’t been allowed out with us since.

IMG_0319

He is over medicated and constantly complains about the side effects of the drugs. He receives no stimulation in the Unit and is left daily to his own devices. It has been so upsetting in the last few weeks seeing how Eden is being left to rot. Literally! His Hygeine is poor and he lives such a miserable existence. Yet the people who make the decisions don’t seem to notice. Eden feels he is being punished for that day in Norwich.

I still live in the same home that Eden lived in until he was 15. Eden would love to return here. I would love him to return here. Hammersmith & Fulham council have said this is not possible and will only consider Eden living on his own in supported living or a group home. He doesn’t want that. Despite that, Hammersmith & Fulham are no further forward in finding a place or fixing up support.

Communication with the Unit is poor. Their phone lines are often down! and they rarely respond to emails. Ironically, Eden’s communication has also suffered whilst there. His speech is slurred due to the heavy duty medication. Eden has a lot of potential and it would be great if he could restart his education which abruptly stopped when he was 8.

Eden’s mental health section runs out in September. He is due to have a CPA in October. There is no plan for finding him a home. There is no plan for finding him a support team. There is no plan for any home visits. There is no plan to reintroduce the trips into Norwich when I visit. He is stuck in the system.

Please help us. Please support the campaign. All we are asking is that Eden’s right to a family life is respected and that he can restart his education.

Thank you.”

 

The One Bedroom Institutions

The focus of the 7 Days of action campaign has been on the terrible lives lived by people in ATUs and a call for people to be enabled to live “proper” lives in a home of their choosing in their local communities. This will still be the focus of any ongoing campaign work but it is also important to look at what can happen when someone is discharged from an ATU and whether they are allowed to live the sort of life that they want.

Jack was our Day Two dude from the original 7 Days of Action campaign back in April. This is an update on Jack’s life since he was discharged on 10th June.

Prior to Jack leaving the hospital, the professionals instigated a 4 week “transition plan”. This consisted of visits from the staff who would be supporting Jack to the ward. There was also a single visit from a Behavioural expert. None of the transition involved the new staff working with Jack in his new home. Jack spent a weekend at his family home and moved into his new flat on 12th June. It should be pointed out that neither Jack nor his family wanted to move into the flat. The wish for both of them was for Jack to move back to his family home but the professionals wouldn’t sanction this move.

The flat is a living room/kitchenette, a bedroom and a bathroom. There are three other flats in the “complex”, each housing a learning disabled person. On arrival to the flat on 12th June, Jack and his family found a workman fitting alarms to all the interior doors of Jack’s flat. This immediately reminded Jack of the hospital. The social worker admitted that this was an error and would have them removed.

Jack’s phone calls home are monitored by staff in the home. He has been encouraged to phone home less frequently in order to build a stronger relationship with the staff there supporting him. Jack’s mother reports that Jack regularly phones home every day around 6pm and the calls continue throughout the night until the morning, with Jack in a growing state of anxiety. It seems, although none of the professionals will acknowledge this, that a night shift begins at 6pm and lasts until 7am the following day. The residents are left to their own devices in their flats, with a staff member available in a central office.

Being a new build there have also been teething problems with the premises. The fire alarm repeatedly goes off during the night and this causes Jack great anxiety. Not only because of the long, piercing noise that affects Jack’s sensory issues but he also has the fear that he could be trapped in a real fire. The fire alarm has been a regular feature over the first five weeks. Also, it was discovered that the electric in Jack’s kitchen is turned off for 12 hours overnight, meaning that all his food in his freezer is ruined. This is clearly a health and safety issue.

This week, Jack asked whether he could go out one evening. He was feeling anxious in the flat again on his own. Presumably because there wasn’t enough staff on duty to facilitate this, his request was declined. As the evening wore on and Jack’s anxiety increased, he unfortunately hit a female member of staff. The staff on duty called the police and Jack was shut in his room for seven hours until the police arrived. After receiving several distressed phone calls from Jack, his mother went to the flat to sit with him awaiting the police arrival. His mother was asked whether she wanted to wear an alarm as she sat with Jack. It was unclear whether the police will be pursuing action or whether the staff member will press charges but Jack was terrified as he it was explained to him about having to spend time in the police cells and possibly prison.

The following day, Jack’s mother took him out for the morning for a haircut, to buy some new trainers and have some lunch.

Jack returned to his flat and later that evening, the phone calls to home started up again. Jack reported feeling very anxious again and there were no staff around to reassure him.

Jack’s experience is in stark contrast to Robert’s story (our day six dude who is also now in his own home). Jack is 19. Apart from his time in the ATU, he has never lived away from his family before but is being forced to build a new life for himself, ostensibly on his own.

Is this what we want for a post ATU life? Is it simply replacing one institution with a smaller one?

 

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…..

Robert’s Home in Robert’s Home

Yesterday, Jackie posted a marvellous picture of Robert, our day six dude, spending his first day in his new home.

Robert

It’s a really important picture because it shows the immediate value of Robert having his own space. Things that can never happen in in-patient services.

Robert has his own TV. In an ATU, there is usually a TV in the communal lounge and people’s preferred viewing has to be negotiated with the preferences of the other detainees and the staff coming into play.

Robert has a shelf unit with all his personal stuff on it. He can chose when he watches a DVD. This couldn’t happen in an ATU. When Steven was detained, he quickly cottoned on to the fact that his personal items that are of great importance to him weren’t safe. CDs would go missing or damaged, so after a few weeks, he would ask me to bring them home. You don’t want to put your valuable belongings at risk.

Robert is wearing his own clothes that fit him. In an ATU, clothes go missing and you find yourself wearing someone else’s clothes. Regardless of size. Or your clothes are hideously shrunk in the industrial type washing machines that ATUs tend to favour. Robert can now go about his business looking like a regular dude and not an inmate.

It is so heart warming.

Let’s raise our glasses to Robert, Jackie, all his family and friends who have battled so hard and to those professionals who fought Robert’s corner when the decision makers had other plans.

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.

A Whopping Big Thank You

Boom. That was the week that was. That was the week of
7 Days of Action. It’s going to take a long time to process all that has happened.

We want to thank each and every one of you for the phenomenal support you have given to the campaign. We have been blown away by the way people have stepped up to the plate and got right behind the mum’s and the seven dudes. As I write, the blog containing the seven stories has received 72,580 views. The stories have been retweeted and shared on Facebook by an incredible number of people. We are so grateful and moved by everyone’s humanity.

So many people got into the spirit of the campaign and just ran with it. All the posts and actions have been collated on the blog and will remain as an archive of the Seven Days of Action. Elaine James has also compiled a magnificent Storify of the week’s highlights which adds to the history. It’s unfair to single out individuals but I just want to mention a couple. A huge thanks to Chris Hatton and Ian Penfold who wrote daily pieces to support the campaign and it was great to get the contributions from two dudes who have experienced life in an ATU. Thank you Peter and Steven.

On a personal note, I want to thank the seven mums who bravely shared their stories. I can’t begin to describe the enormous pressure they were under from the professionals who have control of their sons, not to tell their stories. But tell them they did and I salute their courage. Thank you Debs, Eve, Paula, Nina, Leo, Jackie and Mother P.

What happens next is down to everyone. It is everybody’s campaign. There isn’t a campaign committee, it’s simply a group of determined people at their wits end. There have been some stonking suggestions over the past week and we hope these can all be carried forward. The blog and Facebook group will remain open for folk to discuss the next steps. And we will update you on the progress of the seven dudes and hope that the legal people who have come on board can bring about some happy endings.

My belief is that our biggest hope for the future lies with the seven dudes themselves. One thing the professionals completely miss in all these cases is that it is impossible to break the human spirit and will of these guys. The week before the campaign I met Jack, who two days beforehand had been released from a long detention in an ATU. He was talking about his future. He hadn’t been broken. None of the dudes featured in Seven Days of Action have. They couldn’t break Thomas’s will. They broke his body.

I think my favourite story of the whole week happened on Friday. It was Eden’s (our day one dude) review. The advocate who was acting for him reported that after 7 years detention, he is able to express what he wanted totally clearly and say what he wanted for his future. That’s will. That’s the human spirit.

So a massive thank you for sharing your spirit to Eden, Jack, Thomas, Tianze, Stephen, Robert and P. We will get you home.

Many, many thanks to everyone.