CAMHs have refused to help, aibu to feel despondent?

[sailorcherries]

I've approached the GP twice with concerns regarding my DS1s (age 8) behaviour, on the second occasion we were referred to CAMHs. After recieving their refusal to help letter I truly believe that the GP who referred us did not do so accurately, as the letter stated his behaviour was within the realms of normal.
We now have no where to turn and I feel utterly hopeless. I see no way out of this. His behaviour is completely awful at times, to the point where I could happily let him live with my parents or his dad (never been together), or I could just walk out. My DP and I are due to get married next week and I'd genuinely cancel the wedding to remove that stress, if it gave us respite.

I have had similar threads about DS, but to recap -

1. We first attended the GP because some of his quirks - refusal to wear certain items of clothes due to how they feel, wearing one pair of shoes obsessively, fixating on certain things (TV shows, points in history etc. Currently it's theme parks and roller coaster construction). It was making home life difficult but the GP refused to take things further as DS was coping at school.
2. We attended a sleep clinic due to his awful sleeping behaviour. He would scream, cry, make himself sick, ruin his bedroom and so on. The specialist told us it wasn't a sleep issue but a control issue, see GP. This led to point one being brought back up and nothing being done.
3. The most recent visit to the GP. DS behaviour has gradually become so much worse. He is becoming increasingly controlling and manipulative, quite nasty to others verbally, is becoming physically violent to adults in the home including myself and my partner, has put a hole in the wall, is self harming via scratching himself and hitting himself, makes reference to killing himself. At times he lacks empathy and other times he is inconsolable because of how sorry he is. It is so completely exhausting as we never know what will set it off.

Most recently we attended the GP and I let them know that things has become worse, told them about the violence and suicide references. They referred to CAMHs and CAMHs have refused intervention because this is normal. They have attributed it to the upcoming wedding and his gran being ill. Whilst I agree this may make things worse, this doesn't excuse his behaviour and it certainly isn't normal.

Just last night we spent 2 hours and 45 minutes doing bedtime. DS decided he didn't want to sleep and that ended up in him punching himself so violently on the legs that he is now bruised, telling me he wished I was dead and he would hurt me, telling me he wished he was dead, breaking a door handle through snapping it off forcefully (from the wooden door, not the metal itself), telling my DP he hates him and so on.

We are all on our knees. I don't know where we go from here. I teach, I know this isn't bloody normal but we now have no where else to turn. CAMHs here don't do self referrals and the GP seems as useful as a chocolate tea pot. My son is suffering and there's fuck all we can do at the moment. I've always suspected slight ASD traits in him, along with anxiety and emotional regulation issues but all doors seem closed to us.

Christ that was long and I apologise. I just don't know what to do or how to help.

Can you afford a private assessme if CAMHs won’t help. You want a child clinical psychologist. Family therapy may help.

We've looked and there are none in our area, need to broaden our horizons a little but that is our next step. I'm just worried it will be more hoop jumping to get no where.

Your GP should be organising a paediatrician referral to see if there is underlying needs there - it does sound like ASD traits although I'm not a clinician, (just a Mum to an ASD teenager). Go back and ask to see a different GP. Good luck xx

You should ask to see the SENCO at your child's school as from what you have described it does sound like your child is somewhere on the spectrum. The school can also do a referral to CAHMS but they should also get him on the waiting list to see the educational psychologist that they work with or if you have your own funds you can pay privately. You'll need to be pushy. There's not enough resources and all SEND and children mental health services are at breaking point. CAHMS can be a postcode lottery.

Can you afford to see a consultant child psychiatrist privately - who is qualified to diagnose ASD or whatever else is going on with DC?

Also, get a referral to your NHS occupational therapy service, as they are the people who diagnose sensory processing problems (which may go hand in hand with something else like ASD)

Have you tried talking to his teacher about:

1. His comprehension - does he take language literally?
2. does he understand common sayings like pigs might fly or does he look out of the window, expecting to say pigs flying past?
3. when he is reading a story, while he might be able to decode the words very well, does he get the gist of the story? Can you ask him questions on the story and he can answer them?
4. If you asked him how to play ludo, or a game he knows, could he explain it to you? (Some children with communication difficulties or ASD could repeat the whole script of a tv program but cannot put language together like explaining a game for themselves)
5. Does he understand time?
6. Can he use empathy?
7. Does he just take rules very seriously?
8. Can he take turns and understand abstract rules when playing with other children?
9. What are his gross and fine motor skills like (drawing and handwriting) for his age? Can he do his shoe laces, use normal scissors, ride a bike?

All children may struggle with some of these, as they develop, but hopefully they learn these skills - although we all have deficits in our skills, thinking and personality. However, see if he is struggling with these areas at school and all the noises of a mainstream classroom - it might explain his behaviour at home, and give you a starting point to go back to the GP?

We don't have any dealings with our GP re our ASC child: we did everything through the Paediatrician. If you have to get a referral to the Paed via GP, then see if you can deal with a different GP. The Paed signposted us to various organisations, incl CAMHS, but tbh our DS has had a diagnosis of ASC since he was 3, and initially saw the Paed during the diagnosis procedure.

You could try contacting Young Minds or the National Autistic Society.

Phone camhs. Ask to talk to someone; they should have a duty clinician. Ask them to reconsider the referral. Give examples.

Sometimes you need to persist with referrals to CAHMS. Go back to GP (or another one) and ask them to make another referral. Have you been offered any tier 1 interventions or support in school? Sometimes that is the process first before referral to CAMHS is accepted.

Also agree with pp about asking for meeting with SENCO.

I'd agree you need to see a paediatrician- get a diagnosis and then seek assistance for it.

We're in Scotland so no SENCO unfortunately, the school have offered to separately refer to CAMHs but they have already stated that the ed psych might not see anything as he has no issues in school whatsoever.

We have been advised not to pursue a private ASD assessment because schools will not recognise them. Many people have advised this including CAMHS, Child Psychologists and Mental Health Practitioners. School agreed to work with our DS as if he had a diagnosis though as WL is 12 months.

You will have a senco in Scotland ime it's the depute. I think I might take him to a&e if he is threatening to kill himself and I would do it every time until I got support for him.
From what your explaining it does sound like asd. So I would keep pushing with the gp and school. If you don't get anywhere go to your mp.

Ask the GP for a copy of the referral letter to see if they have included everything you have raised. Then see another GP or move to another GP surgery.

We will go back to the GP.

DS is flying academically. I'm not just saying that but I teach the year above him and know what to look out for, he is capable of achieving everything he should this year. Has a very good grasp of language, understand literal and inferential questioning, can reason and explain (when happy) and has excellent grasp of number.

His teacher is aware of our recent struggles but also a former colleague of mine. He has said on numerous occasions that DS, as well as being incredibly intelligent, is also very artistic. Which I fully agree with.

I'm not bragging or burying my head in the sand. I just have a good grasp of where he is academically. I also know that many ASD children, or children with other SEN, present similarly. Intelligence does not go hand in hand with being neurotypical.

They don't mean his behaviour is normal, they mean 'doesn't meet their threshold'.

In my experience as someone who regularly makes CAMHS referrals, if a child is not actively trying to commit suicide, harming them self in a way that requires hospitalisation, harming others in a way that requires hospitalisation or doing something extremely unusual that is entirely preventing them from functioning normally (perseverating over dissociative thoughts etc) they will not be picked up.

It's wrong, but they don't even have enough resources for the children in those categories.

I think seeing another GP might work. Our practice doesn't have a set GP, we just see which is available.

Everyone is now in agreement that there is something underlying with DS (apart from his dad - DS masks there too and explodes when he comes home).

He might have a SEN, however he might also have a MH issue. I'm not putting my eggs in a basket and wanting him diagnosed as x/y/z, I just want the appropriate support because we are all suffering, especially him.

My child didn't have any problems at school (and only what we thought of as quirks at home) until they started secondary school. It has been a real battle to get any support. My child says they end up being nasty to us because they have to keep it together all day and it's such hard work and so that makes them a bad person. Don't give up OP, I know it's hard work.

reefedsail the letter specifically stated that his behaviour was 'normal for a child of his age' and that they only dealt with children who had 'additional needs or mental health issues'. I'm not paraphrasing. This is the wording from the letter.

CAMHS have very rigid criteria for accepting referrals IME. Dd's referral was rejected twice before being accepted the third time. My advice would be to contact PALS and make a complaint. I have done that recently and ended up with a home visit by the head of CAMHS who was actually very supportive. Resources are so stretched that I truly believe that unless you shout loudest you won't be heard regardless as to needs.

flesh I understand they are stretched, it was more the flippant way in which the rejection letter read.

There was not one mention of the suicide threats or self harm, which the GP saw with his own two eyes (DS has picked away the skin around his fingers and has little scabs on his arms where he has done the same). No it's not self harm in the 'i want to kill myself' way but he is struggling and that is his release.

Did the refusal letter from CAMHS state exact reasons why they were refusing help in relation to what the referral was made for? If only a general statement of 'within normal behaviour' was made I would phone and ask what was put on the referral letter. You could ask your GP too. I only ask as last year a friend's daughter was referred by her GP for medical reasons and the behaviour/mental health issues were not mentioned. As a result help was (quite rightly) refused. This was then turned around when school referred with the real reasons for seeking CAMHS support.

I don't know where you are I am in Surrey all referrals to cahms are via one-stop no peads anymore up can only refer to onestop. We had many many refusal letters, before my 3 were finally assessed (school helped a lot with gathering evidence through ed psyche and ot reports). After dx of asd they are discharged, you are given nas helpline number- good if you can every get through..

After begging for over a year We have finally had one appointment to cahms, it appears a young teen desperate to kill herself more than once, with anxiety so bad she can barley leave the room let alone attend school, warrants an appointment.

I have huge concerns over my other 2 children, but don't expect them to be seen by camhs until they reach crisis. It seems kids have to reach absolute rock bottom before any help is offered. I am past shock and just angry now. If your in Surrey pm me there are some fantastic drop in places for children covering all 7 days, so they can talk to a counciler.

Did you have a telephone assessment with the triage team? I'm surprised you didn't meet the criteria with the self-harm/suicide. But we were declined at first referral and our GP said this is common. By 2nd time my child had hardly slept for 3 days, was thought disordered and very confused and I emphasised their expression of suicidal ideation even more. On the advice of a friend who is a child psychologist I did not mention concerns about ASD and focused on risk. They accepted the referral.