The Launch: Why, Where & How Long

We are pleased to announce the launch of the next Seven Days of Action campaign. It starts on Monday 10th October and will run for the whole week. The week will also see the launch of the 7 Days of Action website, which we hope will be a valuable resource.

The focus will be once again, the human stories of life in ATUs & In-patient services. We hope to keep the pressure on and get people into homes of their own.

We still need to hear peoples’ stories. We want to hear about the type of treatment that is given. We want to hear about how families are treated whilst their loved ones are detained. We want to hear about day to day life in the Units. We want to know what life is like after discharge – do the wounds heal?

We’ve been contacted by lots of people since April. Each desperate to tell their story and get their family member home. We asked everyone, the same three questions:

1. What led to you/your family member being detained in an ATU?

2. How long were you/your family member detained for?

3. How far was the ATU from your usual home?

For today’s launch, here is a role call of 35 human beings.  None of them have committed a crime. Some have been released; several are still detained with no release date on the horizon. Some names have been changed as protection from repercussions:

Robert:

1. Breakdown in residential home placement.

2. 17 months.

3. 230 miles.

Connor:

1. Breakdown in transition from children’s to adult services.

2. 8 months (ongoing).

3. 25 miles.

Stephen:

1. Breakdown of residential school placement.

2. 3 years, 7 months (ongoing).

3. 70 miles.

Joe:

1. Review of medication.

2. 8 months.

3. 140 miles.

Claire:

1. Breakdown in specialist autism placement

2. 2 years, 3 months

3. 235 miles

Thomas:

1. Mother requested support in the home.

2. 3 years + (Thomas died in the Unit).

3. 80 miles.

Jamie:

1. Reaction to medication changes & breakdown of residential placement.

2. 19 months.

3. 100 miles.

James:

1. Incident in the community.

2. 2 years.

3. 10 miles.

Timmy:

1. Treatment for physical condition.

2. 5 years (ongoing)

3. 100 miles.

Jack:

1.  Lack of education/support services in local area.

2. 10 months.

3. 67 miles.

Steven:

1. Went to respite for 3 days as father was ill & moved a day later to ATU.

2. 358 days.

3. 1 mile.

Alex:

1. Assessment for help with self harming.

2. 20 months (ongoing).

3. 56 miles.

Jonathon:

1. Respite whilst father had operation.

2. 5 years, 3 months (ongoing).

3. 300+ miles.

Lucy:

1. Breakdown of education placement.

2. 2 years.

3. 15 miles.

Danny:

1. Lack of local support for challenging Behaviours.

2. 4 years (ongoing).

3. 250 miles.

Asad:

1. Moved from respite whilst mother in hospital.

2. 2 years, 6 months (ongoing)

3. 15 miles

Andy:

1. Went for temporary respite whilst home adaptions took place.

2. 10 months (ongoing).

3. 5 miles.

Aiden:

1. Bespoke support needed.

2. 22 months.

3. 45 miles.

Kelvin:

1. Period of unsettled behaviour.

2. 9 months

3. 170 miles.

George:

1. Breakdown of school placement.

2. 16 months.

3. 60 miles.

Jacqui:

1. Breakdown of supported living placement.

2. 14 months.

3. Close to home.

Paco:

1. Home support agency withdrew contract.

2. 2 years, 10 months (ongoing).

3. 145 miles.

Eden:

1. Lack of education/home support.

2. 8 years (ongoing).

3. 170 miles.

Roland:

1. Breakdown of school placement.

2. 10 months (ongoing)

3. 45 miles.

Robbie:

1. Family became homeless.

2. 1 year, 4 months (ongoing).

3. 155 miles.

Arthur:

1. Supported living provider withdrew from contract.

2. 1 year, 10 months (ongoing).

3. 95 miles.

Ryan:

1. Mother was ill and asked for some respite.

2. 1 year & 4 months (ongoing).

3. 30 miles.

Adam:

1. Group home closed.

2. 3 years & 6 months.

3. 160 miles.

Connor:

1. Lack of local support services.

2. 107 days (died through neglect in the unit).

3. Close to home.

Franklin:

1. Group home closed after failed inspection.

2. 14 months (ongoing).

3. 27 miles.

Joel:

1. Abuse at supported living placement.

2. 20 months (ongoing).

3. 82 miles.

Samantha:

1. Breakdown of school placement.

2. 7 months (ongoing)

3. 110 miles.

Tianze:

1. For short term assessment to assess needs for Transition.

2. 2 1/2 years (ongoing)

3. 200+ miles.

Emmanuel:

1. Mother held in immigration detention centre.

2. 2 years, 10 months.

3. 260 miles.

Joseph:

1. Breakdown in home support package.

2. 10 months (ongoing).

3. 235 miles.

Eddie:

1. Lack of appropriate local services.

2. 4 years.

3. 300 miles.

If you want us to include your story in the October 7 Days of Action (by name or anonymously), please contact us on:

Email: ourstories@sevendaysofaction.net

Twitter: @Ofaction7

Facebook: https://www.facebook.com/groups/7daysofaction/?fref=nf

Or leave a comment here on this blog.

Many thanks.

Day One: Six Months Later Part One

We are kicking off the latest campaign today and tomorrow with updates of some of the dudes featured in the first 7 Days of Action. Each of the mothers have written a piece that graphically describes what has happened in the last six months. We’ve included the links to the original stories in case you want to familiarise yourself with the dudes:

Stephen (https://theatuscandal.wordpress.com/2016/04/22/the-iron-gate/)

stephen6

Stephens words are,

“Ste go home mummy. Ste wants London home. London. Ste go home mummy and go centre 404. Ste go laugh road”.
He gives me his home address. It’s been almost 7 years and remembers well.

Centre 404 is a charity run here in Holloway.
They have club days and they would take him out once a week two hours. Swimming. Rock  climb. Trampoline at Sobell centre here in Holloway. And cinema.

Laugh road is a respite place where they would take him to sleep every two months on his last year of staying with me at home.

Home is where Stephen wants to be with mummy and baby Joshy and Jamie sister.

He has said that over and over at his ATU for nearly 4 years. No one is listening.
On July 15 at the mangers meeting, staff said Stephen would be ready to leave by October.
By August 4th we went to CPA meeting and were told completely different. The Consultant Psychiatrist that he was not discharging Stephen and that his recommendation was yet again another hospital. A step down type thing.
We had been actively looking for community placements but it was all taken way in seconds. I was so heartbroken.
And the CR response to my questions was they were giving my son more antipsychotic meds and on top of that an injection.
His response is Stephen refuses to take his 8 different daily antipsychotic drugs. I asked the doctor if he would be willing to take so many drugs if someone was trying to give him? No. So my son is doing what anyone would.
But as Stephen tries to reject their drugs, their answer is to get 3 people pinning my son down by restraining him and the injecting  him.
And once again, the suggestion of discharge is off the agenda again.
This detention is all about one thing and one thing only. Money.
They are using Stephen as a cash cow.

Robert (https://theatuscandal.wordpress.com/2016/04/23/from-bromley-to-devon-via-stoke/)

robert6

Robert was discharged from the ATU a few weeks after the first 7 Days of Action. Robert has his own flat now and the picture shows Robert and his support worker checking all Robert’s valuable belongings. Here are Jackie’s words:

“Robert lives in a small house he shares with 4 other guys who he gets on famously with. He has made a best friend and and they go to a club 3 nights a week for a drink and a dance! He loves it! He has daily activities offered to which he has a choice and sometimes he prefers to hang out at home. Its taken him a while to adjust to normal life. He was reluctant to participate straight away for fear of where he would be taken. He used to say to staff and myself “can I stay here? Robert likes this home” He loves his room although for the first time ever, spends more time in the living room with his mates enjoying some banter. He calls me almost daily because he likes to tell me what he has done in his day as he is proud of what he can do now. His confidence is growing daily. I see him twice a week, pub lunch outing for his weekly curry treat and a day just hanging out. He sometimes tells me not to go as he is too busy! Haha! All in all he is thriving. Staff are very well trained and experienced and we have had no issues (touch wood )

Just goes to show if the staff in his previous home managed him more appropriately he would never had ended up in an ATU as he clearly didn’t need it. It was just a case of not knowing where to put him. All in all he is loving his life . Has gained a social life and slowly becoming more confident and doing more for himself. I couldn’t of asked for more”.

 

P: (https://theatuscandal.wordpress.com/2016/04/24/p/)

We have had many meetings and the plans constantly changed at each meeting with nobody ever being in agreement of where he should be placed. It felt like it was a battle of wills and P’s needs were pushed aside. His section has been renewed twice this year and we have had manager’s hearings and tribunals to attend also.

P continued to lose weight to the extent that he was classed as underweight although he has put a little weight on now. He still is upset and wants to come home and has not been sleeping well in the ATU.

He was taken to A & E in April and had 3 stitches in a deep wound on his arm, we were not told till the next day, he had the stitches removed a week or so later then had to go back to A&E to have the wound glued as it had not healed properly. We were told he had done this on the lock of his window.

This admission to the ATU is now 13 months and it is having a negative effect on his physical health as a couple of weeks ago he suffered with two seizures which he has never had before and ended up back in hospital again this time over night. He is now awaiting further tests to determine the cause but I feel it is due to a build- up of stress and not sleeping properly.

He has recently started home visits again at the weekend for four hours and this has been going well and he has enjoyed spending time at home.

Our Local Authority started Court proceedings to place him in a residential home not far from the ATU which I was not in agreement with as I always wanted him home or at least in borough.

Thankfully the CCG came up with a care provider in borough that had just purchased a 3 bed house and they assessed P and offered to turn the whole house over to him. All parties are now in agreement that he should be placed in this house so we now don’t have to go to court.

As I write this the plan is to move him to the house at the end of September and the care provider is busy getting the house ready for him and the staff have been in the ATU visiting him and getting to know him. They are even planning to turn one of the rooms into a sensory room for him.

I don’t know how he will cope moving to the house as I know he just wants to come home to what he knows. For me It’s hard too as I’m glad he will be out of the ATU as he can’t cope with that environment anymore and he needs to live a life but it’s also sad as he won’t be coming home and his learning difficulties and autism make it hard for him to understand that.

The best we can hope for is that he is kept as occupied as possible and his anxiety does not elevate too much as the threat of the ATU will always hang over us. For the last 18 months our life has been ruined and our family has been split but apparently there is no accountability for this but we will try to work through this and hopefully try and get our lives back on track.

I will continue to fight for his needs to be met and to ensure he is at the forefront of all decisions and not just part of some power game which is what I have seen over the last 6 months. Oh and also just to add after all this time he has not been cured of his learning disabilities or his autism and hasn’t really benefited from being in there all this time it’s just been containment while everyone debated what they thought was best for him and some of these people have never actually met him or spent time with him, but I hope they have slept at night because P hasn’t and I haven’t!.

Tianze (https://theatuscandal.wordpress.com/2016/04/21/imagining-home/)

tianze-home-4

 

Tianze had a very bad time in April and May (lots of prone restraints), then his behavior gradually started getting better and better.In August, he was calm and didn’t need any form of restraints at all.We also received great support by Margaret Kitching  -Chief Nurse North, NHS England since end of June. She has organized meeting and meet Tianze in hospital personally . Currently Tianze is moving in the right direction . Tianze had a successful first home leave for three hours in 14th September . After over 28 months as an inpatient in hospital, and we had to move home from Scotland to England, to be near him. We were tearful for his first home leave. Tianze was complaining that the time was so short staying home and he hadn’t finished his dinner before he was rushed back to the hospital van to end his visit . But we hope it is the start of him returning home permanently with the right community care.

I feel his behavior has getting better because they have used positive behavior support more in later stage after they got known him better> For example, if he had a van trip on leave and he refused to leave the van and didn’t want to return back his ward, they wouldn’t physically force him out of the van as long as nobody was waiting to use this van. So his van trips are always arranged in later afternoon and early evening time. Autistic people also need schedule and routine and the hospital OT has spent lots of  time to establish his routine .

We still feel he has wasted so long time in previous different ATUs which just got him worse and he suffered lots of injuries that were unnecessary. He is so missing his home with his parents. However he has to stay in the units  without Christmas,without birthday, without parents love ,but just suffering daily prone restraints. That is inhuman and against Tianze’s human rights which shouldn’t happen in this civilized country. The hospital’s plan is that he can have a home visit every two weeks now.

We wish Tianze will be soon return back home with community care and to fully develop his potential, using his skills in maths, the universe and music. We wish Tianze can, like all other young teenagers who can enjoy their freedom, to walk in the park with his beloved dog ,to walk on the beach with his loved mum and dad ,to go to education ,to have his peer friends to play football in the sunshine.

Here we thank you Mrs Margaret Kitching’s support from Northgate hospital. And Thank you for all the support from everybody include Mencap, CBF and the Seven Days Campaign and Mr.Dominic Slowie and Jayne Knight. There are lots of people helping to get Tianze back home and we thank you all.

 

 

 

 

10th October

The next 7 Days of Action is less than four weeks away.

The big day is Monday 10th October and like April, we will be featuring stories of life in in-patient services each day during the week.

We are still on the look out for people’s experiences to include. We need to set a deadline of Sunday 25th September for receiving stories, so that the blog can be written in two weeks.

We need stories about your experiences of: assessment, treatment, exclusion of families, how people become institutionalized, how people are treated as not human, the barriers that are put in to prevent discharge and experiences of what life is like after ATUs.

We really want to have at least one day which is entirely the dudes own words.

If you feel you want to contribute to the next 7 Days, please write to us at: ourstories@sevendaysofaction.net

Many thanks. 

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.

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…..