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Original poster

My Ds has been in a psychiatric hospital for 4 years

258 replies

Sammysees · 17/02/2023 21:24

I know there has been previous threads on this topic. I thought you may have questions about what it’s like for a parent with a child (young adult) in long term psychiatric care. AMA.

OP posts:
kateandme · 18/02/2023 17:15

kateandme · 18/02/2023 15:53

Things are incredibly prescripted.especially on forensic wards.they have wards.locked doors in between areas often.there is usually the rooms then a communal dining,lounge,games room.maybe a hall if large enough.
They have to get up.medication.meals same time everyday.
Education slots.
Therapy slots.
Group slots.
A timetable the same each day.
Depending on the place free time is either I the communal areas or in rooms.sometines rooms won't be allowed for certain amounts of times.
Depending again on setup garden time can be allotted and or work to earn it.
Often privileges must be earned to a care plan but this is extremely varied depending on the patient,their condition,how they are,how long they been there etc.

Show quote history

I'm so sorry for your own struggles. It's not on.and should never have to be accepted. Uour really brave and incredible to do what you do for her. Her too for going through it. It's so f* tough.and with no support system.or one that is totally inadequate It's awfully awfully hard.hope your all OK.

Stomacharmeleon · 18/02/2023 19:42

@Sammysees I had a long running thread on here as my son was sectioned and sent to a forensic psychiatric unit at 13. He also has a diagnosis of autism and was diagnosed as schizophrenic when In hospital. He was in until he was 16. It was frightening seeing children there (at the hospital) who had been largely forgotten. I used to see my son for hour a week.... and it was a 200 + mile round trip.
I just wanted to say after being told he would never leave hospital he did (eventually) as I appealed the section numerous times and He was moved to a less oppressive hospital and slowly was allowed home. We live by the sea in the south coast and he would be shipped there and Back for every increasing amounts of time. Even when it snowed they got him back (under the terms of section)
Although he has periods of poor mental health he has a full time job and a degree. There is light on the other side.

Original poster
Sammysees · 18/02/2023 19:50

kateandme · 18/02/2023 15:53

Things are incredibly prescripted.especially on forensic wards.they have wards.locked doors in between areas often.there is usually the rooms then a communal dining,lounge,games room.maybe a hall if large enough.
They have to get up.medication.meals same time everyday.
Education slots.
Therapy slots.
Group slots.
A timetable the same each day.
Depending on the place free time is either I the communal areas or in rooms.sometines rooms won't be allowed for certain amounts of times.
Depending again on setup garden time can be allotted and or work to earn it.
Often privileges must be earned to a care plan but this is extremely varied depending on the patient,their condition,how they are,how long they been there etc.

Show quote history

I guess different places have different rules. Medication and therapies are at set times of course but my son can get up when he wants, has free reign of the Ward, the Ward garden and the grounds. It’s not regimented at all.

OP posts:
Original poster
Sammysees · 18/02/2023 19:54

Stomacharmeleon · 18/02/2023 19:42

@Sammysees I had a long running thread on here as my son was sectioned and sent to a forensic psychiatric unit at 13. He also has a diagnosis of autism and was diagnosed as schizophrenic when In hospital. He was in until he was 16. It was frightening seeing children there (at the hospital) who had been largely forgotten. I used to see my son for hour a week.... and it was a 200 + mile round trip.
I just wanted to say after being told he would never leave hospital he did (eventually) as I appealed the section numerous times and He was moved to a less oppressive hospital and slowly was allowed home. We live by the sea in the south coast and he would be shipped there and Back for every increasing amounts of time. Even when it snowed they got him back (under the terms of section)
Although he has periods of poor mental health he has a full time job and a degree. There is light on the other side.

Thank you for this. Sometimes it seems as though life will never be normal again. Your story has given me hope. I am so glad your son is in a better place. Best of luck to him for his future ❤️

OP posts:
cheerypip · 18/02/2023 21:00

Thank you for starting this thread, it is so interesting and resonates a lot. My partner is also in a forensic psychiatric hospital, he's been there a year this week. A very long year. He has made good progress and hopefully eventually will be able to come home.

I have a few questions, if I may, since you are a little further down the road than we are -

  • which came first, the diagnosis of anxiety and depression or autism? and how long did that take. Still no diagnosis here after 12 months, although there are signs of all of these.
  • how have you found the tribunal process? I guess you have been through that a few times now.
  • Has there ever been any discussion about transfer back to prison?
  • you said you provide for your son financially, is he not eligible to claim any benefits at all in hospital? (I am assuming he is beyond the end of his 'prison sentence, by now)

Thinking of you and everyone else that is in our situation. It is really hard xxx

cheerypip · 18/02/2023 21:16

And one more...

  • how much have you found you have needed to advocate for your son's care in hospital?
Original poster
Sammysees · 18/02/2023 21:16

cheerypip · 18/02/2023 21:00

Thank you for starting this thread, it is so interesting and resonates a lot. My partner is also in a forensic psychiatric hospital, he's been there a year this week. A very long year. He has made good progress and hopefully eventually will be able to come home.

I have a few questions, if I may, since you are a little further down the road than we are -

  • which came first, the diagnosis of anxiety and depression or autism? and how long did that take. Still no diagnosis here after 12 months, although there are signs of all of these.
  • how have you found the tribunal process? I guess you have been through that a few times now.
  • Has there ever been any discussion about transfer back to prison?
  • you said you provide for your son financially, is he not eligible to claim any benefits at all in hospital? (I am assuming he is beyond the end of his 'prison sentence, by now)

Thinking of you and everyone else that is in our situation. It is really hard xxx

Hi. I’m sorry you are going through this as well. I will try to answer all your questions
They were all diagnosed together. He was diagnosed after his arrest and before trial.
We have only been through the tribunal process once. They have to happen legally every 3 years. However you can ask for them annually if you want to. It is a very formal process - a bit like a court of law. The panel sit one side and everyone else the other. You can’t speak unless spoken to.
The NHS are trying to push him back to prison. Cost. Hopefully he can be discharged straight to home though.
He does receive benefits but as he is still classed as a prisoner this is only £20 per week.
Good luck with your partner. I hope he is doing well?

OP posts:
Original poster
Sammysees · 18/02/2023 21:18

cheerypip · 18/02/2023 21:16

And one more...

  • how much have you found you have needed to advocate for your son's care in hospital?

As he is a prisoner and under section I have no say, or control, in his care and treatment. However the hospital are very good and involve me in all his CPA’s. I guess it helps that I am fairly happy with the treatment he is getting.

OP posts:
NCTDN · 18/02/2023 22:02

@Stomacharmeleon that's so uplifting to read.

kateandme · 18/02/2023 23:30

Sammysees · 18/02/2023 19:50

I guess different places have different rules. Medication and therapies are at set times of course but my son can get up when he wants, has free reign of the Ward, the Ward garden and the grounds. It’s not regimented at all.

Show quote history

mmm but thats something hes worked for isnt it not all patients are allowed that. and he currently having to work for leave? his ground leave wasnt just given to him.so again him and not everyone is just automatically allowed to do that.

kateandme · 18/02/2023 23:47

NCTDN · 18/02/2023 22:02

@Stomacharmeleon that's so uplifting to read.

i would say push to no as much as you can.
at the very least make it KNOWN they have somoen advacating for them.they will NOT be forgotten and have someone who is listening into what going on, how he is being treated etc.
ask questions.
keep things moving when they need to
do not be afriad to say something is wrong
do not be afraid to make them sound weary of you. its their job to keep safet the moent precious thing in your life.
anything that needed to be done regarding progress,help,more help,and ongoing support we found had to be done by us.
the traumatic events they are also encouraged not to "burden" their loved ones with. so always make sure your person talks.talks to you about what they have seen how they are feeling.
they do not and should not have to be silent about something of the things they see or go through in these places.
they can be pressured to keep quiet so keep open diologue always, and take it all as how it makes them feel to experience it.no matter how big or small it seems.

kateandme · 18/02/2023 23:49

Stomacharmeleon · 18/02/2023 19:42

@Sammysees I had a long running thread on here as my son was sectioned and sent to a forensic psychiatric unit at 13. He also has a diagnosis of autism and was diagnosed as schizophrenic when In hospital. He was in until he was 16. It was frightening seeing children there (at the hospital) who had been largely forgotten. I used to see my son for hour a week.... and it was a 200 + mile round trip.
I just wanted to say after being told he would never leave hospital he did (eventually) as I appealed the section numerous times and He was moved to a less oppressive hospital and slowly was allowed home. We live by the sea in the south coast and he would be shipped there and Back for every increasing amounts of time. Even when it snowed they got him back (under the terms of section)
Although he has periods of poor mental health he has a full time job and a degree. There is light on the other side.

this is so great to hear.
youve obviously worked so hard for your loved one. whats journey for you all.
livimg by the sea.aaa im sure that helps no end. sea air,nothing like it.
brings back very vivid memorys of friday night traffic. and 8 hour trips and more.or running through the tube station to get home. and sunday evening "check in"

kateandme · 18/02/2023 23:51

mynameisbrian · 18/02/2023 11:36

Sadly the lack of community support for young autistic people is why we end up with our children in prison and in hospitals. There is an increase awareness now about the trauma those placed in institutions have suffered. There is a lot of work going on to upskill the work force and all hospitals are expected to complete the Oliver McGowan training. He son died sadly when in a specialist hospital. I don’t agree that hospital is the correct place for an autistic person. It may be a relief for loved ones who are concerned and I understand that as they can’t see an alternative . There is a lot to be done to change the outcome for those who are struggling due to lack of the right support

mmm families shouldnt have to be put in these positions. and almost like a threat because what else do they do.they have no options if they need to keep a loved one safe.
the failure for these conditions and mental illness angers me more and more each day.and how it never actually seems to be getting better!

OldFan · 19/02/2023 02:52

I don't know if it's something you might be able to nudge for, or something that could be arranged once he's out @Sammysees , but I had EMDR therapy in later life for the effects of bullying. I'd recommend it. Some of it was private and some with the NHS.

Original poster
Sammysees · 19/02/2023 08:16

kateandme · 18/02/2023 23:30

mmm but thats something hes worked for isnt it not all patients are allowed that. and he currently having to work for leave? his ground leave wasnt just given to him.so again him and not everyone is just automatically allowed to do that.

Show quote history

Yes I guess. I hadn’t thought of it like that. I tend to only visit at the weekends and everything is very relaxed and everyone is wandering around. You may well be right.

OP posts:
Original poster
Sammysees · 19/02/2023 08:19

kateandme · 18/02/2023 23:47

i would say push to no as much as you can.
at the very least make it KNOWN they have somoen advacating for them.they will NOT be forgotten and have someone who is listening into what going on, how he is being treated etc.
ask questions.
keep things moving when they need to
do not be afriad to say something is wrong
do not be afraid to make them sound weary of you. its their job to keep safet the moent precious thing in your life.
anything that needed to be done regarding progress,help,more help,and ongoing support we found had to be done by us.
the traumatic events they are also encouraged not to "burden" their loved ones with. so always make sure your person talks.talks to you about what they have seen how they are feeling.
they do not and should not have to be silent about something of the things they see or go through in these places.
they can be pressured to keep quiet so keep open diologue always, and take it all as how it makes them feel to experience it.no matter how big or small it seems.

Show quote history

I am lucky that my son tells me what is going on in the ward - good and bad. It is great advice though so thank you 🙏

OP posts:
Original poster
Sammysees · 19/02/2023 08:22

OldFan · 19/02/2023 02:52

I don't know if it's something you might be able to nudge for, or something that could be arranged once he's out @Sammysees , but I had EMDR therapy in later life for the effects of bullying. I'd recommend it. Some of it was private and some with the NHS.

Thank you. I will have a look into that. I have a colleague who is just starting psychedelic therapy too. I am waiting with baited breath to see how he gets on.

OP posts:
Stomacharmeleon · 19/02/2023 09:48

I wrote a long reply but don't want to hijack your thread.
I do agree with @kateandme though. Question everything. Comb over every bit of info.
There were lots of things I didn't like about his stay for example he was handcuffed to be moved and they took him to the wrong place parading him round in cuffs (aged 14). He had no criminal convictions.
I always think about the children I saw who had no one. Particularly those who were lac. It was heartbreaking and I often wonder where they are.

Original poster
Sammysees · 19/02/2023 09:59

Stomacharmeleon · 19/02/2023 09:48

I wrote a long reply but don't want to hijack your thread.
I do agree with @kateandme though. Question everything. Comb over every bit of info.
There were lots of things I didn't like about his stay for example he was handcuffed to be moved and they took him to the wrong place parading him round in cuffs (aged 14). He had no criminal convictions.
I always think about the children I saw who had no one. Particularly those who were lac. It was heartbreaking and I often wonder where they are.

You can hijack the thread as much as you like. It is nice to be able to talk to people who are/or have been through the same things. I personally don’t rock the boat because he is so much better where he is than prison. Sad but true. I think also we are lucky. It mostly is a lovely ward in a pleasant hospital.
That is shocking about putting him in handcuffs. At 14! Your poor son 😢

OP posts:
kateandme · 19/02/2023 23:58

Stomacharmeleon · 19/02/2023 09:48

I wrote a long reply but don't want to hijack your thread.
I do agree with @kateandme though. Question everything. Comb over every bit of info.
There were lots of things I didn't like about his stay for example he was handcuffed to be moved and they took him to the wrong place parading him round in cuffs (aged 14). He had no criminal convictions.
I always think about the children I saw who had no one. Particularly those who were lac. It was heartbreaking and I often wonder where they are.

yes.speak up.let them know you are there.be their ugliest reminder of how cared for and clued up on your loved on you are!!
im so sorry you had to go through that,its sad. but sadly more so becasue its not suprising.
so many things go on.
and like the op doesnt want to rock the boat.becasue there or lesser options or what then if we get on the wrong side of them?you shouldn't have to feel like that. its almost blackmailed veiled threat to let them do what they want or need.even if wrong.and the young people have that pressure too. they have that pressure to be quiet quit often.

OldFan · 20/02/2023 03:51

psychedelic therapy too

@Sammysees Good God no. Evidence based therapy approved by mainstream doctors is the way to go. If your son were to do something like that he could have a psychotic break. I know because I have severe MH problems and have a really bad response to drugs. The results of 'psychedelic therapy' Envy or any other drug are unpredictable and not worth the risk.

Sindonym · 20/02/2023 20:06

Sammysees · 17/02/2023 21:34

He has autism. High functioning so extremely intelligent. Was bullied horrendously both physically and mentally. He didn’t have a difficult upbringing and was the model son. I have a great relationship with him and visit every week. I am divorced from his dad (since he was 2). His dad visits every other week.

Show quote history

Sorry haven’t read whole thread. Has he had a CTR (care & treatment review)? I would hope so - but if he hasn’t he is entitled to one as he has an autism diagnosis .

ijphoo · 21/02/2023 10:35

OP, I really empathise with you. My son was arrested and sectioned six years ago at the age of 17. He has autism, PTSD and GAD. He spent the rest of his seventeenth years in CAMHS, and was then discharged abruptly. Fortunately, a good adult social worker found him a residential placement where he spent the next three years.. He has been living in supported accommodation since then.

Original poster
Sammysees · 21/02/2023 14:15

kateandme · 19/02/2023 23:58

yes.speak up.let them know you are there.be their ugliest reminder of how cared for and clued up on your loved on you are!!
im so sorry you had to go through that,its sad. but sadly more so becasue its not suprising.
so many things go on.
and like the op doesnt want to rock the boat.becasue there or lesser options or what then if we get on the wrong side of them?you shouldn't have to feel like that. its almost blackmailed veiled threat to let them do what they want or need.even if wrong.and the young people have that pressure too. they have that pressure to be quiet quit often.

Show quote history

I guess I am lucky that my son tells me what is going on. I pick my battles with them but yes, I do let things slide as the alternative is 100 times worse.

OP posts:
Original poster
Sammysees · 21/02/2023 14:18

OldFan · 20/02/2023 03:51

psychedelic therapy too

@Sammysees Good God no. Evidence based therapy approved by mainstream doctors is the way to go. If your son were to do something like that he could have a psychotic break. I know because I have severe MH problems and have a really bad response to drugs. The results of 'psychedelic therapy' Envy or any other drug are unpredictable and not worth the risk.

I think you get so desperate you clutch at straws. I’m well aware from the research I have done that it probably wouldn’t be right for my son. Knowing someone who is actually doing it though ….. as I said, I am desperate.

OP posts: