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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Would you put in a complaint? CAMHS

9 replies

WinterisComing95 · 08/09/2024 05:37

DD is 8 and has autism. She struggles a lot with sleep, but because of where we used to live, the community paediatrician wasn’t allowed to prescribe any new children melatonin (funding issues) so gave us a website where we could buy it from legally, so that’s what we’ve been doing the last few years. I have this all documented - that it was recommended to us, etc, so it’s all above board.

We then moved to a different area, for different reasons, and was put under CAMHS a couple of years ago. They have been absolutely useless - DD is now having different sleeping issues (waking up multiple times in the night) and it’s honestly destroying the entire household, as well as getting DD in a state every night and her regularly missing school because of being up every night (she attends an SEN school and they are very understanding about this). Her previous community paediatrician said there was several medications that we could try for this but CAMHS just keep fobbing us off and saying to give sleep hygiene another go for another few months - this has happened several times now and we haven’t had a full night sleep since the beginning of the year. They were so quick to put DD on an anti-psychotic for her behaviour but are literally so reluctant to give her anything to help her sleep when it’s having such a devastating impact on everyday life.

We have tried every sleep hygiene tactic in the book and I’ve quite frankly had it, so I’ve found a private autism clinic that is run by several private paediatricians who specialise in it, and they can provide the medication that DD needs. However, AIBU to put in a complaint about how CAMHS have dealt with this over the last 2 years?

We have also never received any community paediatrician input in our new area, despite being told that it had been transferred over from our old hospital, and I just genuinely feel like DD has been let down so much - I’ve honestly been tempted to move back to our old area just to receive the right help and support for her again!

AIBU?

OP posts:
autienotnaughty · 08/09/2024 06:52

No you are not. Whilst these services are under funded and under staffed it's not fair that the people accessing the service lose out on basic care and rights. Things need to change and challenging poor service is part of that

inthekiddle · 08/09/2024 06:55

I used to work in CAMHS and I am so sorry this has happened to you. I have no idea why the U.K. is so weird about melatonin. It's bizarre. You can literally buy it off the shelf in Europe, not even over the counter.

I would urge you to put in a complaint about this. Things need to change in CAMHS and formal complaints have to be dealt with via a specific process so I think it is a good idea.

Phineyj · 08/09/2024 09:20

Yes, complain. How else will anything improve.

MassDebate · 08/09/2024 09:24

Having experienced the utter uselessness of CAMHS and their failure to offer any support to my suicidal ASD teen, I doubt your complaint will change anything - but absolutely do send it. I hope your DD gets the support she needs Flowers

hockityponktas · 08/09/2024 09:28

Yes complain.
CAMHS are absolutely useless and caused more damage than good in our case.
the people employed by them are not at fault, that are bound by understaffing, underfunding, a lack of effective management and many other issues!
It has to be put right.

ExtraOnions · 08/09/2024 09:39

Yes, complain to the Mental Health Trust. Our first experience of CAMHS was useless, complained, then finally got a decent (excellent actually) service

honkifyalikebeans · 08/09/2024 09:41

Again, yes complain. Sadly it's the only way to start improving things

johnworf · 08/09/2024 09:45

Having been through this with my son, yes, I would put in a complaint. Also insist on seeing the CAMHS psychiatrist for further advice.

Have a look at NICE guidelines (specifically paragraph 1.7.7). You can use these to argue your case for melatonin and support.

I'm fairly sure GPs can now prescribe Melatonin but please check this as I'm not 100% sure.

We were told by one doctor (before being prescribed Melatonin), to use antihistamines as these can have side effects that make you sleepy. We were also prescribed (by psychiatrist), Promethazine, which has the brand name 'Phenergan' which is one such antihistamine having a sedative effect.

Good luck 💐

Phineyj · 08/09/2024 10:00

In most areas a paediatrician or psychiatrist has to make the initial melatonin prescription although the GP can take it on.

We were prescribed it at the (private) ADOS (autism assessment) and the GP took it on.

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