Parents of DC in mental health hospitals.

[watchingplanesicantafford]

My son was admitted this week with psychosis. He's 17. He's really quite unwell but I have seen him everyday. The hospital have been fantastic but I have a few questions please for other parents with experience of this. Sometimes I worry that I'm ringing and visiting too often. It's a balance between wanting to see him and not tire him out. Also I've never been in this situation before and I don't know what the right thing to do is. Do most people visit every day? How long do you stay? Do you ring every day? Currently I'm ringing morning and night but is that too much because they must be busy? I'm visiting once a day for half an hour or so because he's still very unwell. The visits are supervised so is that too often to take the staff from the ward? I'd appreciate some advice please of anyone has been in this situation. I asked the staff and they said I could ring and visit as much as I want, but I wasn't sure if I'm doing too much or not enough.

This TED talk by Eleanor Langdon is excellent. It makes me emotional every time I watch it. Its her experience of psychosis.

They have removed his phone, partly because they have a contract in place for mobile phone behaviour and he is too unwell to be able to agree to that. He has access to a brick phone if he wants to get in touch with me, although he's probably also too unwell to do that at the moment.

We haven’t really been able to have a conversation about how much he remembers. I am hoping not much as the initial admission and first few weeks in hospital really were horrific. He does occasionally refer to parts of it so I know he has some memory of parts of it but he has also commented that he doesn’t remember much.

@MessEveryWhere we initially didn’t let DS have his phone for exactly this reason. We did however eventually give him an old phone which was locked to one app only so he could play his music with headphones on. He now has the same phone with a few more apps such as movies and games but no messaging or social media. This is with the support of the ward staff.

I had a long running thread on here as my eldest was in hospital on and off for all of his teenage years. He went from a hospital in London (hour and a half drive) to one in Birmingham (four hours each way) We were only allowed an hour with him a week and he was in a forensic unit. He was seriously unwell for a long time.

I just wanted to say it was a really long road for us but my son graduated, lives an independent life with a job (although still medicated) and has a child. He can access his hospital folder but as far as I know he chooses not to. He was unwell for around four years in total.

Thank you so much for posting this. I'm sure having been through it yourself as a parent you understand how important it is fortforo hear that this is possible.

That's amazing. Thank you for sharing that. You must be so proud of him.

@watchingplanesicantafford have been wondering how you and your son are getting on. My son is home now as his meds are working and whilst he is much better the road to full recovery feels like it will be a slow one. He is very tired and sleepy but he has an awful lot of sleep to catch up on.
I hope your son is doing OK and that the drs are finding a medication which works for him.

He's much the same. Still delusional and paranoid but less manic. He had his assessment for a section 3 yesterday and the AMHP declined it against the recommendations of his psychiatrist, so he's now a voluntary patient. He asked me to take him home yesterday, but his section was still in place till midnight, it's not now, so fully expecting to have to bring him home later for the cycle to continue. I'm as scared today as I was the day it happened.

I dont have advice but just wanted to wish you and your son all the very best. It must be so hard for you.

Not a parent but I used to be a mental health nurse, nobody would mind you phoning
Staff should understand you are concerned about your son, the only thing I would say is try to avoid the busier times ,ie medication rounds, ward rounds ,hand over times etc, if you need to speak to staff it can be quieter in the evenings or night shift
Does your son have a named nurse?
If so ask them about visiting,
Have you been invited to ward rounds etc where they will discuss his progress?

If he declines quickly a section 5/2 can be implemented, or even a section 5/4 ( nurses holding power)
What were the AMPH,s reasons for declining a section 3 ?

It was declined because a voluntary admission was considered less restrictive.

And what's the plan if he decides to take his own discharge ?

That he'll get support from Camhs in the community. He's been accepted by the early intervention in psychosis team and they're doing some support (haven't been in touch with me yet to say what that looks like). If he gets violent I'm to call the police 🤷‍♀️. He's made (false) allegations that I'm abusing him, so I don't even know if he still believes that to be true and means he's a risk to me.

When DD was an inpatient, she said the psychiatrist used to say to someone there on a section 2

”We got it wrong last time. We want to keep you in longer, to get it right this time!”

So, they put them on a section 3 for 6 months. The next week, the patient was discharged…and back again on a section 2, after being psychotic in a public place within a few weeks! This happened to a number of patients there - a revolving door of sections and discharges! Some of them weren’t even under the CMHT - just left to their own devices to self neglect between admissions!

OP - if DC is discharged rather than leaving of his own free will, I suggest you read the Ombudsman’s report on mental health discharges. For instance, the mental health trust should discuss the discharge with you. If you feel it’s an unsafe discharge, keep saying that on repeat (and put it in writing):

https://www.ombudsman.org.uk/sites/default/files/Discharge%20from%20mental%20health%20care%20making%20it%20safe%20and%20patient-centred_10.pdf

@watchingplanesicantafford sorry to hear you are both still struggling. It’s good that he has been accepted by EIS as you will have a point of contact going forward. My DS is also back with them now. My advice would be to take as much support as you can get. If you don’t think he is safe to come home you need to be telling whoever will listen that. For my DS the important points were getting enough sleep and stability of medication and both took a while. Wishing you lots of luck and hope he begins to improve more soon. As a pp said he can get better with the right treatment.

The psychiatrist said that to my face today, that some people are discharged and then have to be readmitted when their health takes a downturn. They clearly think that's what's going to happen here, so do I to be honest. I'm just so worried that he had to injure himself twice before his last section, what does he have to do to get someone to take him seriously.

They won't discharge too early, they've been really excellent, he will leave of his own free will. He gets his phone back at 3pm so expecting a call from him then

Sending strength your way - was on the other side of this as a teenager admitted to multiple inpatient units (psychosis wasn't my main issue but I did have several psychotic episodes when at my most unwell). Each time I was over an hour away from home (up to 4.5 hours at one point for almost a year) and so my parents visited max once a week. I did miss them a lot but the most important thing in my opinion is for you to take whatever time you need to regather your strength - the time after discharge can be really tough and you may feel you need to recover from whatever happened prior to his admission.

If it helps to hear some hopeful stories, I spent almost 10 years in and out of hospital (aged 13-22) - one of the most amazing things my parents did was supporting me to continue with education even when it meant doing exams as an inpatient. Thanks to this I'm now a doctor, happily married and completely recovered from my illness for several years now. I have one good friend from hospital I still see who is also recovered and married with beautiful children.

@Alethea2025thank you for posting and it certainly does help to hear positive stories from people coming out the other end of this. My son got ill just as he started Uni. Thankfully they have allowed him to defer (twice now) to start this time next year so he has a year to fully recover.

@Alethea2025 I think it’s important parents hear stories like yours and my sons. It can feel so desperate for all involved when you’re going through it and no end in sight. It can get Better and be managed and we should talk about it more.

What I meant to say, was that here, the psychiatrist decides one thing, in the patient’s best interests; but then bed management decides the patient should be discharged to make way for another new patient, regardless of what state the patient is in!

That is awful, however it is not our experience. In fact in my opinion the decisions made by bed management resulted in a longer stay. I do accept that they are in a difficult situation trying to manage increasing needs with fewer resources but better communication could have reduced my DS’s stay by 2-3 weeks. The problem is the fact that bed management appear to have the last word and not the professional clinicians closer to the patient.

Really sorry to hear that the section has been ended, @watchingplanesicantafford . Something similar happened to us in that my son won a mental health tribunal, so that his section was rescinded even though all of his care team thought it should remain in place. As in your case, they just advised us we would have to wait until his condition deteriorated far enough for him to be sectioned again,
Nothing terrible happened while we waited. He lived at home and was supported by the early intervention team. But it was very frustrating.
I hope that things work out a bit better for your son, and that he manages to improve even at home. If he is on the right meds, a rapid improvement may well happen.

I guess your original question, about visiting, has been a bit superseded now. I was going to answer that you shouldn't worry about taking staff resources, etc, if you want to visit. Do what is in your son's interest and in your own interest. When he is too unwell to get much from your visits, do please take some time to take care of yourself, even if that means leaving him alone for a bit. I know from experience how traumatising all this is, and you really do need to look after yourself.