My Ds has been in a psychiatric hospital for 4 years

[Sammysees]

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.

Yes he has a CTR annually.

I am so glad he has got that support. It is so scary how they can just be dumped into the community ….. with nothing!

Just putting my 10pennies’ worth. I have a relative with similar issues to your son who has gone down the route of buying drugs online ( I believe a lot of them are made in China) to self medicate his autism related anxiety, social fears etc. He is totally addicted, in no way has it normalised his symptoms/ social functioning etc. I really would not go down that route. I definitely wouldn’t encourage him to take drugs.

Oh I definitely wouldn’t encourage drug use. The psychedelic therapy my colleague is undertaking is medically supervised. My understanding is they give you drugs and therapy at the same time. Then a therapy session again the day after. 5 sessions over 10 weeks. I am not condoning drug use at all. I am however interested to see how this therapy turns out as I’d never heard of it before. Will it become mainstream one day? Will it make a difference? Is it safe? So many questions.

Ah ok that is completely different from buying drugs over the dark web. Still quite experimental though and more room for side effects I would have thought, than with something like the rapid eye movement therapy. I have been listening to Is Psychiatry Working ? on radio 4 it’s an excellent series. My brother is currently on a long stay mental health rehab unit and I found listening to the series really informative. Maybe worth your while.

Is CTR the same as CPA?

I find it difficult to navigate around 'the system' - even finding someone to explain stuff is difficult. In the hospital the staff are very good at saying 'do ask if you have any questions', but it's all so new to us that we don't even know what questions to ask.

Thank you. I will have a listen.

My understanding (and I hope I am right!) is that a CPA happens every 6 months with his MDT. A CTR is annual and also involves his NHS case manager and from speaking to other parents, is only for prisoners. The people who aren’t prisoners don’t appear to have them. But I could be wrong on that.
It is a minefield! Not helped by the fact that everything is being done via Teams now so you don’t get to see people in person. Because I only visit on weekends I only get to see the ward staff - the important people I suppose get weekends off.
One thing I would ask is if yr hospital provide any carers events? We have a monthly meeting online then an in person one every 3 months or so. They are a godsend for getting information from staff and other parents.

A CTR is a care and treatment review. It has a panel of 3 reviewers - a chair, an independent expert by experience & an independent clinician. The idea is to cast an independent eye over everything.

CTRs are for people either detained in hospital (not necessarily prisoners or people under justice sections) or at risk of being detained in hospital. They are for people who are autistic or who have a learning disability. They are held every 3 months for children, every 6 months for most adults but every year for those under MoJ related sections.

They are useful because of the independent nature of them. They tend to be very person centred & can act to challenge commissioners etc -albeit this is a bit harder when the MoJ is involved. But if you want to be listened to they are a good place to have your point of view heard.

CPAs are the regular psychiatric MDT reviews - would include the hospital team & relevant community teams.

A guide to CTRs www.ndti.org.uk/assets/files/CTR-Survival-Guide-Aug-2017-1.pdf

Thank you. You explained it much better than I did.

@ijphoo we had a similar issue post release. When my son was under section they did everything by the book... until he turned 18. He was referred to adult services, was seen once (through the crack of the window of my car as he refused to get out) and then they dumped him.
I had to advocate again for him to see a psychiatrist regularly and he had a massive gap even though he is a medicated schizophrenic as well as autistic, adhd etc.

I think this is what worries me the most. How they are just dumped and left to their own devices. It’s shocking.

Check whether they are entitled to section 117 aftercare. If people are under certain sections once discharged they become eligible for section 117 aftercare funding - this means that anything that is needed to prevent hospital readmission should be funded via this funding. I can’t remember the full list of sections that are eligible. Section 2 is not (won’t be relevant in your case anyway), section 3 is. I can’t remember for the other ones but do check. It can really help in producing a really bespoke package for someone. I know MoJ cases can be a lot more complicated - but definitely worth asking.

Just remembered Mind has good information
www.mind.org.uk/information-support/legal-rights/leaving-hospital/section-117-aftercare/

You are so knowledgeable! I am a little in awe. Yes, he will be entitled to section 117 care. Just checked with your link. He is under section 47 which is covered.

You may have to remind professionals of
his entitlement but there should be a commissioner responsible for it.

I’m a bit ropey on the forensic and MoJ sections because they often have special rules and so I avoid saying anything too concrete, but one of the biggest issues can be around having somewhere safe to go on discharge that will
reduce the risks to self and others. It’s much easier if someone doesn’t have capacity because they can then have a DoLS - and so can be under continuous supervision (and support). It can be really hard to get it right for people whose risks would be much reduced by continuous support/supervision but legally you cannot impose it.

i do tend to get very angry sometimes. when all i see is how we need to help young people.the governemnt or tv programs talking all the time about how we need to step up for young people.even the pandemic was about how it ruined young peoples mental health.
and i feel so bad.because i would hsve been one of those people and of course it needs to start lots younger!
but the help for adults is horrific.no no that is putting it kindly.its way worse than that.
and i can be sat there looking at good morning britain once again mentiomning young people and want to say. "what about our adults!" what about my adult.😥
there is no help.or its highly inadequete. and so sparce.
and i have to actively stop myself thinking of those without help.loved ones.or people in their lives.all those adults who dont have others to advecate for them.god what are they doign right now? its an awful thought.
becasue there just isnt the help for adults.at all. or its abusive and manipulitive.

@Sammysees The first time I ended up in hospital for my bipolar was partly due to pot. When he comes out then any kind of recreational drug could land him back in again. He'll have to take good care of himself. But I'm sure he'll find his way. One day, this'll be ancient history.

The psychedelic therapy my colleague is undertaking is medically supervised.

@Sammysees That is not a reputable 'doctor.' IDK who/what that is but if he's a UK registered doctor, I'dve thought he'd be struck off. If it's somewhere abroad, it's still not a reputable and evidence based treatment.

Dr Ben Sessa if you wanted to google. It’s pricey. My colleague is paying £5k.

My ds would never take drugs. He hates not being in control. I thought the psychedelic treatment was all above board? There are a few places in the UK that do it.

I find it especially horrific that even after a suicide attempt you don’t get help. It seems you have to try a few times before they think you are serious. It’s pretty shocking the state our country is in.

It is horrific. My son attempted suicide 2 years ago (2 years today actually). He was physically patched up, "assessed" by camhs the next day and then discharged from the hospital and from camhs. From then on we have been on our own. We still don't know why he did it.

Oh bless you. I hope your son is ok now? I had exactly the same after my sons first attempt at 15. I slept outside his bedroom door on the landing floor for months. As soon as I stopped attempt number 2 happened. I’m so sorry you have been through this too.

@elliejjtiny 💐sounds awful. I’m sorry your family went through this.