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To be getting pissed off at being shoved from one place to another?

(18 Posts)
coffeeisnectar Fri 08-Jan-16 15:57:44

Back story is that dd 2 was referred to CAMHS where we lived previously when she was 5 and was seen on a regular basis for assessment. We moved 450 miles away in 2012 and they did a referral to CAMHS in this area. I have a copy of the letter which states dd is likely to be on the spectrum and needs to be assessed further as she is still young.

CAMHS saw us for 30 minutes, talked to me while dd lined up every toy in the roo. In height order and refused to talk and then we got a letter saying there's nothing wrong and removed her from the list.

I have been back to the GP many times asking for another referral. We were assigned an outreach worker who was at a loss and said we need to go back to CAMHS.

Finally saw a nurse at the practice who did a referral. We waited, got the appointment and both dd and I filled out forms about her and I went to the return appointment where I was told she needed a referral to paediatrics but I need to do a parenting course first.

The waiting list for the parenting course was months and I was offered a place this month. I'm having surgery in two weeks which means I'll be laid up for 2-3 months. So I was offered a home course but the waiting list is much longer.

I went back to the GP in November last year and asked for something to help her sleep. I was given two weeks of sedative but when I asked for more on another visit was refused. They did say they would refer to paediatrics immediately rather than waiting until I've done the parenting course though.

I got an appointment through for June this year. Today dd has come from school with a letter from paediatrics saying they don't want to see her as CAMHS would be better placed to deal with this.

I want to fucking scream. Four years. Four fucking years and I've got precisely nowhere. Dd does not sleep. She is transiting on endlessly even as I write this. The obsessions, the talking, the anxiety, the fucking talking, the not sleeping. I'm reaching the point of totally breaking down.

How do I deal with this?? Who do I complain to? Because I feel failed by everyone.

coffeeisnectar Fri 08-Jan-16 15:59:54

Rabbiting not transitting. Sorry for long post.

bigbluebus Fri 08-Jan-16 16:18:37

I'm sorry to say but your experience is not uncommon from what I have read on MN - especially in SN Chat. I know CaMHS is in a mess in our area too - can't seem to keep staff and families are being left high and dry instead of making progress with a diagnosis and getting the help they need. It is a national problem - the Govt has put an extra sum of money into improving CaMHS services but these things take time.

They will no doubt tell you the parenting course is part of their Pathway to assessment for pathway read delaying tactic. There doesn't seem to be any way to bypass the flow chart.

Do who know who runs the Camhs service in your area - is it the NHS Community Trust - google it and look up their complaints procedure on their website and file a formal complaint.

coffeeisnectar Fri 08-Jan-16 16:32:37

That's a good suggestion and I've now got the information so will send an email later this evening when dd is out at swimming with dp.

I just feel so utterly worn down. I know dd is probably not their highest priority but she is mine. I've been begging for help since she was 2 and used to smash her face off the floor in frustration. I always get told "it's a phase" and recently got patronized by a child masquerading as a doctor who asked whether I'd thought about trying to get her into a good sleep routine. If he'd read her notes he would know. If he'd listened to me instead of just nodding he'd know.

She is not my only child, I have a 17 year old who I've not had these issues with.

SnowyBumbles Fri 08-Jan-16 16:37:52

I knew before I clicked on your thread this would be about autism/cahms. The services across the country are shockingly poor. Which nhs trust are you in as I'll see if I can direct you to a support group? (Dm me if you prefer). There are nice guidelines about the pathway for autism referral which the services are supposed to adhere to, have have you got school onside? You can make a complaint to pals but in my experience they don't hold much weight with cahms especially as they are so understaffed.

bigbluebus Fri 08-Jan-16 16:54:11

Oh the joyful things Doctors say to parents coffee.
DD was in A&E in the summer after havng a seizure - stopped fitting in the ambulance on the way. A very fresh faced Doctor came in and asked me if DD "had any medical history?". DD is in her 20's (although only the size of an 11 year old) has multiple obvious physical disabilities as well as severe learning disabilities and her very obviously bespoke wheelchair was next to the trolley. A child of 5 could have guessed that she had a medical history which runs to 3 very large boxes of hospital notes. You do wonder what they teach them at med school sometimes.

ghostyslovesheep Fri 08-Jan-16 17:02:50

you say 4 years so I am guessing she is at school - what do they say? Have they got the Ed Psych involved? They might be more helpful.

Sadly Mental Health services in this country have been cut to ribbons and childrens services are the poor relation of adults ones

At one point our CAMH's would only accept referrals for young people in psychosis - they had no capacity for anything else sad

Parent Partnership might help (they have a new now in most places) and check out your LA's Local Offer to SEND children - there may be link to advocacy and support services there.

coffeeisnectar Fri 08-Jan-16 17:05:28

We are in Dorset so any pointers would be great snowy. I'm just so frustrated. I'm going to ring CAMHS on Monday and insist forcefully on an appointment asap. After that I'm not sure what else to do.

School are definitely onside, they are brilliant and her teacher and the SENCO have been very supportive since she started there in September.

Bjgbluebus, that's awful. I hope your dd has recovered but I'm sure these trips are regular things for you. A friend of mines son has dravets (sp) so she's forever in hospital with him. I feel for you, epilepsy is horrible.

ghostyslovesheep Fri 08-Jan-16 17:11:40

ghostyslovesheep Fri 08-Jan-16 17:12:40

coffeeisnectar Fri 08-Jan-16 17:15:33

Thanks ghost, I will read up about that too and see what's here locally. Finding it hard to concentrate with her home!! When she's in school is the only time I get anything done.

ghostyslovesheep Fri 08-Jan-16 17:20:20

I sympathise - I was referred to CAMH's when my eldest was 4 - we where back and forth for years - referred, knocked back - until things got really bad and SS became involved due to her self harming and running away (due to hearing voices)

They where then brilliant and very supportive - DD2 has also worked with them - both girls present with aspects of ASD but have no diagnosis (I think due to them being girls) but they are classed as extremely bright, prone to anxiety and stress and needing support coping with stressful situations and transitions.

It's a tough old battle xxxx Good Luck xxxx

GeoffreysGoat Fri 08-Jan-16 17:48:08

coffeeisnectar Thu 03-Mar-16 16:14:40

Just to update that we've been back to camhs and surprise, surprise, are referring us back to paediatric for an asd assessment.

I made it clear to the lovely nurse, very politely, that if we get referred back again I will be going down the official complaints route. I feel like a ball bouncing between paediatrics, camhs and the GP.

plimsolls Thu 03-Mar-16 18:01:23

Awful situation for you, I'm sorry.

Try asking your school to get their educational psychologist involved. Ed Psychs can't usually diagnose ASD but they can and will provide support in terms of advice/strategies/intervention for school and home which will be effective regardless of whether your DD has an official diagnosis. Sometimes an Ed Psych is "inside the system" and can vouch/advocate for you in terms of getting CAMHS or paeds to proceed. There may also be ASD outreach workers (and similar services) who can provide support and advice on interventions for school and home- sometimes will provide this before a formal diagnosis is made.

Sometimes school systems can get a bit stuck waiting for an official nod from CAMHS to say "yes this child has ASD" whereas actually the changes to support and intervention can happen straightaway.

Good luck.

plimsolls Thu 03-Mar-16 18:02:52

Nb: I don't mean for the above to happen instead of a diagnosis, I mean for it to start straight away whilst you're waiting for the (often slow) diagnosis wheels to turn.

yorkshapudding Thu 03-Mar-16 18:45:53

"I made it clear to the lovely nurse, very politely, that if we get referred back again I will be going down the official complaints route."

Where I work, an ASD assessment has three stages. 1.) An assessment by the Paediatrician to confirm that there is no underlying medical explanation for the child's symptoms. This has to happen even if they're previously been seen by Paeds 2.) an assessment with someone from the Neurodevelopmental CAMHS team and 3.) a school observation. So if you get sent back to CAMHS after the Paediatric appointment they're not necessarily fobbing you off, it may be that they're just going through the assessment process.

coffeeisnectar Fri 04-Mar-16 00:32:49

Dds school are brilliant. We saw the senco before she started there and I'm amazed at the support put in place for her.

We are seeing the school nurse (paediatric school team) a week on Monday as there were a couple of issues in school so they feel further support is needed.

My friend said her ds had to be assessed in the child development centre which hasn't even Bern mentioned to us. We have been assured that the hospital paediatric dept can do an asd assessment.

I guess it varies so much through different areas but where I lived previously it would have been camhs who did it. It's a minefield. And I'm lost in it!

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