Being let down by child mental health services

Family
1

Hi, sorry I haven’t posted in ages, my lad has been so much better for around 5 months.

Not now I’m afraid. Over the last 5 weeks I’ve been warning his psychiatrist that I’ve seen the signs of him going downhill again. He’s been sleeping all day, getting angry with everyone, had a few voices briefly appear, some paranoid delusions. She has increased his risperidone again, up to 2mg morning and 2.5mg evening.
This week he has been very aggressive, seeking out his little brother to start fights, saying he can hear us talking about him (we aren’t). Knows that we hate him and that he wants to police to take him away.

Monday the voices started calling him names and telling him to hurt people. They have got worse through the week, and last night he completely lost touch with reality. He was being chased by 3 headed monsters and sinkholes were opening up all over the floor. Someone kept trying to strangle me, so he was trying to pull them off me, he was very agitated.

I called the crisis team, as he is in the process of being assessed by the adult team. He’s 16, autistic and has moderate learning difficulties. He is with CAMHS, but they don’t have enough experience with sz, so they want him to be transferred early to adult services. Crisis team were excellent. They reassured me and advised me to sedate him with 1.5mg lorazepam, 353mg chloral betaine and his normal dose of risperidone. The doctor faxed details to CAMHS and promised me that I would get a call from CAMHS to take over.

By midday no one had called from CAMHS, so I’ve been chasing them all day. To cut a long and frustrating story short, no one from CAMHS LD team is available to see him till his scheduled appointment on Tuesday. Early intervention adult team say that medical responsibility stays with CAMHS, they won’t see him. Home treatment team refuse to see him until a medic can asses him and refer to them.

So I have no support for the weekend. He is still hallucinating, visual and auditory. They say call an ambulance, but they will only sedate him, which I can do myself.

Is it going to be this bad always? Is mental health services really this bad normally or have I caught them on a bad day??

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I’m sorry to hear of the problems you’ve been going throught. Don’t give up on the system - they can be very helpful but like all things - it depends on the people you’re working with and the day you catch them. We have a write up on how you can be very assertive with the health care workers - to get them to help your son.

This writeup is written with the USA and Canada in mind, not the UK - so take the suggestions and adapt them to your environment. Some will be appropriate and helpful, but others won’t.

My son/daughter or brother/sister is over the legal age of 18 and the doctors won’t share with me information on his treatment (due to current laws). How can I make sure my son/daughter is getting the best possible treatment and the doctor is well informed?

How can I help my loved one get the best care possible?

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Thank you @SzAdmin.
He got very agitated again last night, and I took the advice of the CAMHS psychiatrist, called an ambulance and he was taken to a&e. He had severe pains in his head, he thought was the monsters trying to kill him. Once there, we were sent out into the main waiting room with police, assaults, lots of noise, not the best atmosphere for an autistic person in a high state of agitation, oh and a camera crew filming for BBC.
After half an hour I asked what was happening, if he going to be seen, as the ambulance crew left us there without a word. I was told in no uncertain terms that the waiting time for triage was 2 hours, so I had no right even asking for another hour and a half as we had only been there 32 minutes.
So I called the crisis team. The call went through to a medic I know, he said to give more lorazepam then tell the doctor. By this stage he had scratched the skin off his forearm, but had stopped fighting the monsters, but was still hearing voices.
Soon after that he was called in by a paediatric doctor. She called children’s ward, who refused to take him as he is 16, and they don’t take psychiatric patients after age 16. CAMHS don’t have any weekend cover, and the adult team won’t take responsibility for him because he is under CAMHS.
So we were put in the CDU, waiting for a psychiatric consult. An hour later, the crisis team medic who I speak with regularly and who told me to medicate him in the waiting room turned up. He said to ignore the psychiatrist who told me to stop giving lorazepam because of its high level of addiction, and go ahead and administer lorazepam in crisis, even if it’s every day. It’s highly likely my boy will be in a unit by the end of his week, so he said the addiction can be dealt with there.
He tried to get children’s ward to take him, again they refused. So we came home, since by then, he had calmed down and just wanted his bed. The crisis team medic said he will phone me this morning and evening to check on my boy, and again on Sunday. He’s promised to give the CAMHS team a call on Monday and MAKE SURE they support him and put an action plan in place.
I am exhausted. He is sleeping off the meds.

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