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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

Camhs

25 replies

Sholiz74 · 27/03/2017 11:41

Hi. I wonder if anyone can help me. My son is 12 and in y7. He was diagnosed with ASD and ADHD in the summer and since then we have pretty much been left to fend for ourselves. He suffers from crippling anxiety, struggles to sleep and has very limited food choices. He is painfully thin but sees himself as fat. This morning we had a full blown panic attack over having a bath. His school are now being helpful but his SENCO has taken a dislike to me as i have questioned her approach and his pastoral manager is very nice but feels until he can get structured medical help they are just treading water. We have now been turned down twice for cahms as we do not meet their criteria, our gp is no help and my sons mental health is going down hill..can anyone suggest how to move forward? Thank you

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Original poster

Sholiz74 · 27/03/2017 21:03

Anyone?

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BackforGood · 27/03/2017 21:09

Sadly, you are finding out how absolutely lacking the provision for Mental Health issues is in this country .
I don't know of an answer, but have you thought about contacting www.autism.org.uk/cNAS, or Resources for Autism or Contact a Family ?

Many of these organisations have localised parent support, that can signpost you to local services.

OneInEight · 27/03/2017 21:16

Didn't want to leave you unanswered but not of much practical help as CAMHS have not been of much help for ds2 who also has an ASC and mental health issues. Infact the best thing we have done for his mental health is to take him out of school and his anxiety is slowly decreasing. It has not been a quick or a complete fix by any means though (he is now fourteen and been out of school nearly eighteen months). We did force an appointment with CAMHS by threatening to take ds2 to A&E after a self-harming episode but not ideal. I think to get an appointment you have to stress the mental health issues (which they theoretically can help with ) rather than the diagnosis (many CAMHS do not offer direct support for children with an ASC).

Original poster

Sholiz74 · 27/03/2017 21:26

Thank you for your advise. Foolishly thought getting a diagnosis after years of fighting would help, infact it seems to have made things worse. Financially i dont see how i could home school or if i would even be good enough to keep him up to speed. Will keep trying to get someone to listen l.

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SealSong · 27/03/2017 21:49

I know he has been previously turned down by CAMHS, but do go back to your GP and fight for a further referral - state he is deteriorating, his anxiety is severe and has distorted body image along with weight loss. CAMHS does have a high criteria but he would meet the criteria for the CAMHS service I work in.
Is he not being seen by CAMHS re the ADHD? Is he on ADHD meds?

Original poster

Sholiz74 · 27/03/2017 22:10

Hi. I have gone back to the gp but he says its not just us he cannot get anyone in. The last referral mentioned all those points but they just said he does not meet the criteria and the school should do more and to introduce sleep hygiene. How i remove everything from the room of a child and leave him to his anxiety i dont know. We are at our wits end and he is just becoming more overwhelmed and paralysed by his issues. I did call the camhs team today and they said the coordinator is in tomorrow and they will ask her to review the file but i dont know if that was just a way to get me off the phone?! Since his diagnosis we have tried on several occasions to get him any form of help but camhs have turned him down twice and the gps seem impotent.

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BackforGood · 27/03/2017 22:53

You mentioning sleep issues, reminded me that Cerebra are another charity that might be able to help.

SealSong · 27/03/2017 23:38

Ring the CAMHS coordinator back again tomorrow. Ask to see a copy of what the criteria is for the service - this should be available to the public. If once you have seen the criteria you feel your son meets it, ring the coordinator again and strongly point that out. If they then still refuse to at least offer an initial assessment appointment, put in a complaint using the official complaint process - the CAMHS coordinator will be able to give you information about that.
I'm sorry you and your son are having this experience. CAMHS services are terribly overstretched nationally, but if a child is severely anxious and distressed they should be seen. Keep trying.

SealSong · 27/03/2017 23:39

Ps the NHS hates complaints... An official complaint or the threat of one often gets things moving.

OneInEight · 28/03/2017 06:34

Other organisations you could get help from are:

Social Services - school or GP could refer you or you can ask for an assessment yourself. They may be able to refer you or your son to charities such as Spurgeons or courses such as the Cygnet course for managing your child's behaviour. They are also very good at chasing up appointments at CAMHS or helping to get support at school for you in our experience!

We have found the helplines from the NAS and Autism West Midlands helpful. They also run some useful courses on managing different aspects of behaviour e.g. sleep, eating issues that are good.

As I said above even when we managed to get a CAMHS appointment they were not much help because ds2 was too anxious to access their services. We did try medication but for him side effects out weighed any benefits but is an option. ds1 benefited from equine therapy for a while so perhaps you could see if there is something in your area like that if you can afford (is expensive - we were lucky that school funded).

Young Minds is another charity that might be able to offer support.

Original poster

Sholiz74 · 28/03/2017 07:56

Thank you all for the advice..back to the phones today

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FrayedHem · 28/03/2017 13:13

The referral for DS1 got refused twice, citing his anxiety was in line as expected for his dx (ASD). The third time was after he had self-harmed and I'd kept him off school. The GP was sympathetic but said that was the only service available and he couldn't refer anywhere else and just to keep on at them until they agreed to see him.

I would try and lead with his perception of his weight as that shouldn't be as easy to dismiss and combined with his anxiety you need professional input urgently.

Melawati · 28/03/2017 14:22

Young Minds parent helpline can be a useful resource in my experience.
We have extensive experience with tier 3 and 4 Camhs (DD1 is 14, has ASD, ADHD and severe mixed anxiety and depressive disorder).
For DD it has been helpful overall, I know others have had different experiences. To get there I did have to keep asking for help - phoning to e.g. ask for help in specific situations 'I have DD with me now and she has said XXXXXX, can you tell me what I should do to keep everyone safe?'
Can you weigh him and measure his height (easier said than done, I know)? This information will help you if you have an eating disorders service in your area. You could try calling them directly if you're finding general Camhs difficult to access.
For us, when DD was still at mainstream school the most effective professional was the school nurse, so it might help to get them involved. Also can school access Autism Outreach services from the LA to help them with some advice and strategies?

Twinkletowedelephant · 28/03/2017 14:27

I also have been turned down for cahms for all 3 of our children Asd and adhd. In fact my youngest son hasn't seen anyone since he was DX 2 years ago. Other son's clinic has closed and supposed to be transferred to cahms but had a letter saying he has no clinical need...He is on the 3rd percentile for height and weight on medikinet and just dosnt sleep.... My daughter has been refused several times as again has no clinical need... School are trying so hard for them all but the need more..... I have been invited to attend a parenting course...In 2 months

reader108 · 28/03/2017 21:37

My ds doesn't meet CAMHS criteria has a diagnosis of Aspergers at a specialist school. School question ADHD I've tried to get this diagnosed and treated Gp referred child development, but only CAMHS can diagnosis and he doesn't meet their criteria!!!!! Tried Youth Emotional Support he can't access due to lack of focus and inability to connect with his emotions!!! Going back to Gp

tartanterror · 28/03/2017 22:13

Have a look at Eva Musby's site on eating disorders. It's quite usual for ASD kids to have food issues, but the body image issues are concerning and should be an early warning for a child in a high risk group. There is a national waiting time standard in the UK since last year for eating disorders - 2 weeks for urgent cases and 4 weeks for others. Might be worth highlighting this to your local CAMHS when they try prevaricating. BTW that is 4 weeks from GP/first point of contact to first appointment with a specialist eating disorder service! Where are you in the UK? My DS has big problems with eating (no body issues) and we ended up at the GOSH feeding disorder team - it took 16 weeks. I badgered and badgered our local CAMHS to refer us through even though we easily met the criteria. Keep going!

tartanterror · 28/03/2017 22:14

If you are in London you can self refer to the Maudsley Hospital for eating disorders in children

Waitingforsleep · 29/03/2017 15:05

Is the maudsley the best place for my Dd? Camhs say anxiety but I'm unsure if something else is causing it like asd?
Or should I go gosh or great ormond street?

Original poster

Sholiz74 · 29/03/2017 19:26

Thank you everyone. Finally spoke to the CAMHS coordinator today. After 45 minutes she decided to rescind the decision and we will get an appointment in 6/8 weeks. I think she just wanted me to go away in the end but its a step forward. She did however end the conversation with 'it wont be the answer to your prayers you think it will be'....maybe not but its a start. X

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tartanterror · 29/03/2017 22:20

well done Sholiz - good luck

SealSong · 29/03/2017 22:54

Excellent, well done.

Melawati · 30/03/2017 08:35

Well done, keep pressing them. Every time DD had a crisis while we were on the list, I phoned them to ask what to do. It really helped them understand the extent of her difficulties before they met her.

youarenotkiddingme · 01/04/2017 12:30

Jeez - talk about needing to get in the final word! Hopefully she isn't the person you are seeing.

Well done on getting the appointment though - I know how draining the fighting can be

Original poster

Sholiz74 · 01/04/2017 12:53

Seriously did not know how hard it would all be..between school, doctors, juggling work it just takes it toll. X

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Rose1981 · 07/06/2017 22:29

Hi- not sure if this will help but with the school they have to help any child with a SEN with or without diagnoses. Section 6 of SEND Code of Practice highlights this. Does he have a ECHP? The school should be able to look into getting external help if they don't have the expertise. You may have already done this but SENDIASS or KIDS can provide advice and guidance and can tell you in more detail your child's rights. It's irrelevant what the senco feels about you she has a duty of care and guideline she is obliged to follow. Good luck, hope you get the support you need.

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