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:
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 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”.
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 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.