7 Days of Action (January 2016 to August 2017)

Announcement:

The 7 Days of Action campaign will officially end at midnight on Monday 21st August.

The Facebook group will close for new posts and over time, will be replaced by the 7 Days of Action Archive which may be a useful resource.

The support group will also close at the same time. In order to fulfill existing commitments, Julie Newcombe has set up a new group – The ATU Family Support Group – and existing members will be transferred to the new group.

We have been advertising for people to take over the running of the current admin team but this has prompted a lot of ill feeling and frankly, it is not our place to appoint successors. We apologise for raising needless expectations.

We believe that by ending the campaign, we preserve the reputation and goodwill that 7 Days earned.

Anyone who wishes to start a fresh campaign on the same issues 7 Days was founded on has our sincerest best wishes.

For people who are interested in projects around in patient services, Bringing Us Together are working on many of the themes that 7 Days were involved in. You Know and Respond both do great work and support in this area. And Mark Brown has been working for some time on his new project, My Own Front Door, which is a collaborative project pulling together different stakeholders.

It has been a whirlwind 18 months and the current admin team have been with the campaign from the start. The creative brilliance, energy, time commitment and oodles of love that has made the campaign so successful has been so special.

We want to thank everyone who shared their stories, developed ideas, tweeted, wrote to their MPs, engaged in the discussions. The support has been overwhelming.

The fight still goes on. There are still far too many people trapped in ATUs and we will find our own new ways of fighting for their futures.

Once again, thanks for your great support.

Julie, Jules and Mark N

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All Change @ 7 Days of Action

Since the launch of the first 7 Days of Action campaign in April 2016, the three public campaigns have been fairly successful in raising the profile of the scandal of learning disability in patient services in the UK.

Now it’s time to move the campaign on into a new era.

From 31st August 2017, the four members of the campaign admin team are stepping down and if the campaign is to continue then a new team with new ideas is needed.

The current team have put together a “job description” below. This is by no means prescriptive because the new team can chose to add or drop any of the current roles. But it is a taster of what the current admins get up to:

1. Plan, design/write and run the public campaign.
2. Manage the official website.
3. Manage the two facebook groups.
4. Manage the official Twitter account.
5. Provide online & telephone support to families.
6. Engage with other bodies to achieve the campaign’s aims.
7. Engage with the press & media to promote the campaign.
8. Research issues relevant to the campaign.
9. Keep abreast of the relevant laws (MHA, MCA, DoLS, Care
Act etc.
10. Speak at public events to teach/promote the campaign.
11. Write articles for publication about the campaign.
12. Maintain a resource centre to aid families.
13. Do the Macarena every Tuesday afternoon for 45 minutes.

If you’d like to be part of the new admin team, please message one of the current team on Facebook or Twitter, or leave a message on this blog.

Many thanks.

Hats Off

I think it is only fair that we start up a big Mexican Wave for one of our 7 Days of Action admins, Mark Brown.

Mark started the research for this week’s campaign, immediately last October’s campaign finished. He has worked incredibly hard over the past many months to make this campaign as successful as it has been.

Mark co-wrote the report ‘A Trade in People’ with academics from Lancaster University, a report that has already started to have an impact in the learning disability field.

He also wrote five of the blogs from this week, something which involved a huge amount of additional research not to mention some excellent literary skills (apostrophes notwithstanding!).

And on top of all that, Mark runs the 7 Days website, occasionally moving campaign headquarters to a tent in darkest Dorset as can be seen in the photograph!

Mark is also full time carer for his lovely son.

IMG_1125

Mark – we salute you.

The Way Ahead

Announcement

7 Days of Action ran two campaigns in April and October 2016. Both campaigns were well received by the public and media and gained a phenomenal amount of support.

We have been thinking about how to take the campaign forward and feel that to have the maximum impact we need to broaden the scope of the campaign. We have, in the main, focused on seven dudes, whilst being very aware that there are thousands more currently detained. The campaign has been closely associated with the original seven mums and Mark N and we feel this needs to widen out too. Mark N has expressed his wish to step back from the front line and most of the mums have other commitments that require their energy, so this also plays into our idea of a major change in taking the campaign forward.

We plan to change the name of the campaign to reflect the new emphasis and this will be announced shortly. The structure and roles within the campaign team will change also. The support group will still be open as we know that for many people, it is a valuable resource. These are exciting times for the campaign and we hope you will continue to give your great support. The reformed steering group are meeting on 7th February & there will be further news after then.

Above all else, we want to keep the dudes at the forefront of the campaign, get them out of in patient services into a place they can call their home, living the lives they want, and deserve, to live.

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. 

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.