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Something has got to change - but no-one cares.


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CAMHS appointment two weeks ago now and nothing. I get the impression they got the appointment in to meet their targets and now its back on the waiting list.

Things continue to get worse. I dont know if its all related but its moving away from OCD onto general behaviour which apparently is everyone elses fault.  I would say 6 days out of 7 we have him screaming at us. He refuses to do a thing even pick up dishes hes used. He just kicks off.

Its starting to affect the health and wellbeing of the rest of the family if I'm honest. His 4 year old sister is scared to go near him. My wife who has Fibro is in bits (a lot of Fibro is stress related) and I just cant wait to get to work to get away from him.

Mental health provision in this country is appalling. We've tried and tried but no-one is interested in helping. I tried to call the primary care people  the other day (not CAMHS but someone else he had an appointment with). They promised to call me back - took them THREE WEEKS to call back.

I can't help thinking no-one will listen until theres a death or serious injury to someone. Seriously considering taking him to A&E kicking off, refusing to take him home, and let them deal with him. It might focus attention.

I just can't believe that months down the line hes had NO treatment. All we've had is oh yes, I see, nothing else. OK they've made recommendations but as I said before, son is not interesting in listen to anyone and now its our fault. I just find it appalling that hes not even seen a psych to even diagnose him properly or consider medication or even a treatment plan.

Don't ever tell me the NHS is great. Its not - its appalling. If I lived in the USA and had health insurance, we'd have been seen my a psych months ago. Its like living in a 3rd world country in the UK.

Like I said, I am so worried that nothing will ever get done until something serious happens - I just hope its not that serious that its going to affect everyone involved for the rest of their lives....

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Hey, was your sons last appointment with CAMHS an assessment? If so, my son had 3 assessment appointments and then had a break of about 6wks before his therapy while the best course of action was considered and then he was allocated his therapist, once this was done he has had regular therapy, at first it was every 2wks but then as she got to know him she changed it to weekly as he was struggling a lot. I totally agree with U on the NHS sadly, it’s not their fault but it’s ridiculous the amount of waiting, personally I had to wait a year on my own therapy when I was incredibly ill with ocd and depression, even then I only got seen when I did because my family were so worried my mum rang and rang until she spoke to the top dog and told him how awful my situation was, sad. I think taking him to A&E may well be the best course of action, it’s unfortunate but he is in an emergency situation mentally, I’d take him and see what they can do for him. Good luck xx

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9 hours ago, Wonderer said:

Hey, was your sons last appointment with CAMHS an assessment? If so, my son had 3 assessment appointments and then had a break of about 6wks before his therapy while the best course of action was considered and then he was allocated his therapist, once this was done he has had regular therapy, at first it was every 2wks but then as she got to know him she changed it to weekly as he was struggling a lot. I totally agree with U on the NHS sadly, it’s not their fault but it’s ridiculous the amount of waiting, personally I had to wait a year on my own therapy when I was incredibly ill with ocd and depression, even then I only got seen when I did because my family were so worried my mum rang and rang until she spoke to the top dog and told him how awful my situation was, sad. I think taking him to A&E may well be the best course of action, it’s unfortunate but he is in an emergency situation mentally, I’d take him and see what they can do for him. Good luck xx

Yes initial assessment. Appointment every two weeks jeez. I know they're short of funding but there seems to be no rush at all with anyone. You can see how kids commit suicide etc - there is no-one there to help them. He did see another place before CAMHS - primary mental health. I phoned them a few weeks ago  and said it was getting urgent. They pretty much didnt know what to do  - it looked like a case of well we've met our targets seeing him thats the end of it. I insisted we urgently needed help and they told me someone would call back.

THREE WEEKS later they called back. He could have committed suicide, been dead and buried before they got around to it. My wifes a nurse so I hear stories of some people in the NHS. Its not just funding - there are a lot of people in the NHS who don't deserve a job because they just want to take the money and do as little as possible- thats part of the problem. Some of them I wouldn't trust to look after the wellbeing of my hamster.

With CAMHS, to be honest, the family is not going to last that long as a unit and before then its going to cause damage to his education. 

Whereas counselling/CBT has its place, I'm still surprised that he has yet to see a psychiatrist. Surely someone needs to decide if he needs meds or something?

I think I'm going to have to pay privately. And they say the NHS is good? Give me a break its not even fit for the 3rd world - if we lived in the USA and had insurance we'd have had a diagnosis months ago.....

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Spoke to CAMHS this morning. "We'll call you back shortly". That old chestnut - I've heard that one before it'll be weeks before they call back.

Sometimes I get the impression they're a bit lost when you ring them. As if they don't know how to handle things - like "oooh we've met our targets and performed the initial appointment but someone is phoning up saying theres a problem - not sure what to do now!"

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Things came to a head last night. He got very angry and violent, threw things around etc. Its so obvious that this is not him and is caused by his frustatraion with everything building up.

We had no choice but to go to A&E last night. Waited hours - nothing. Come back tomorrow. Spoke to CAMHS - some of these people don't deserve a job - they refused to help. They said they can only help with OCD and anything else I need to call the police or social services and maybe we need to look at out parenting methods! I've heard it all.

Back to A&E and at last a doctor who understood that his behaviour is affected by his illness and he does need help. Best he could do was get camhs to agree to an appointment in 5 days time.

Deffo going to bite the bullet and pay for private psych now.

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Wow, sorry things have come to a head but glad u finally found a doctor that understands, I find it odd that CAMHS fobbed u off, we were told to ring their crisis team at any point if our son became worse, although he was saying things like he wanted to kill himself, more out of anger and frustration than actual suicidal but still CAMHS were concerned enough to tell me to ring if I needed to in between appointments! I really hope ur son gets the help he needs soon, I know it’s frustrating for everyone involved but as a fellow sufferer of OCD what I can tell u is like it’s being locked in a permanent hell and extremely debilitating, it’s a horrible and cruel illness and a tough nut to crack so it may take quite a while before u see any improvement in him. Good luck xxx

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3 hours ago, Wonderer said:

Wow, sorry things have come to a head but glad u finally found a doctor that understands, I find it odd that CAMHS fobbed u off, we were told to ring their crisis team at any point if our son became worse, although he was saying things like he wanted to kill himself, more out of anger and frustration than actual suicidal but still CAMHS were concerned enough to tell me to ring if I needed to in between appointments! I really hope ur son gets the help he needs soon, I know it’s frustrating for everyone involved but as a fellow sufferer of OCD what I can tell u is like it’s being locked in a permanent hell and extremely debilitating, it’s a horrible and cruel illness and a tough nut to crack so it may take quite a while before u see any improvement in him. Good luck xxx

From CAMHS I had, "We can treat his OCD but hes got to wait for appointment". "The violent outburst - you need to speak to police or social services. Nothing at all to do with us. Also, you need to look at your parenting processes".

Fuming to say the least! I KNOW that this is a knock-on effect from his initial problems and I am disgusted with their attitude. By that rationale, anyone who misbehaves must need locking up or taking away and its the parents fault! 1970s flash back!

Considering making a complaint about this.

And I forgot - "don't phone us all the time we can't help"

Edited by paulfoel
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Oh my goodness that is a shocking attitude from CAMHS, trust me, my sons therapist k owe his outbursts are to do with his anxiety and nothing to do with our parenting! They can’t make snap judgements like that before even really getting to know ur child! I would definitely put in a complaint, I would ask to speak to whoever is in charge and tell them how u have been spoken to! Unbelievable! X

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14 hours ago, Wonderer said:

Oh my goodness that is a shocking attitude from CAMHS, trust me, my sons therapist k owe his outbursts are to do with his anxiety and nothing to do with our parenting! They can’t make snap judgements like that before even really getting to know ur child! I would definitely put in a complaint, I would ask to speak to whoever is in charge and tell them how u have been spoken to! Unbelievable! X

Exactly. He has had a 2 hour assessment with them but, of course, hes just sits there and its quiet and polite. We've had months and months of seeing it. Surely you don't need to be an expert to work out that if an adolescent that is having issues its going to have a knock effect on his entire behaviour.

To be honest, hes not entirely blameless - he wont engage or listen to anyone, and, of course, he is a teenager but this is all made 500% worse by his issues.

Sad thing is this was the manager of the unit (and not even one of the people who'd seen him). Her attitude was, we've seen him, hes not that bad, not our problem.

Wife was very very upset as you can imagine. I will make a complaint which I expect she will deny but Im going to do it anyway. Hopefully it will make her think twice next time - if no-one complains nothing changes.

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Really feel for you at the moment as your family are clearly having such a tough time and I can totally relate to everything you are going through as we are in the same boat with our 12 year son.

We have had to watch our son get worse day by day waiting an eternity for the CAMSH assessment only to be told he needs CBT treatment but there is another long wait list for tr treatment. We couldn’t wait a day longer as our family unit and are at breaking point so we have gone private but still had to wait 4 weeks for a psychiatric assessment and now waiting for treatment to start. At least things are starting to happen which was my biggest frustration with CAMSH. If you can somehow afford to go private do it. My biggest regret is that we didn’t do this ages ago before my sons problems got so bad, as now there are so many more issues to unravel. 

The mental health services within the NHS are a total disgrace!!!

 

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12 hours ago, Living in hope said:

Really feel for you at the moment as your family are clearly having such a tough time and I can totally relate to everything you are going through as we are in the same boat with our 12 year son.

We have had to watch our son get worse day by day waiting an eternity for the CAMSH assessment only to be told he needs CBT treatment but there is another long wait list for tr treatment. We couldn’t wait a day longer as our family unit and are at breaking point so we have gone private but still had to wait 4 weeks for a psychiatric assessment and now waiting for treatment to start. At least things are starting to happen which was my biggest frustration with CAMSH. If you can somehow afford to go private do it. My biggest regret is that we didn’t do this ages ago before my sons problems got so bad, as now there are so many more issues to unravel. 

The mental health services within the NHS are a total disgrace!!!

 

To be honest, the people who work in CAMHS in our area are a total disgrace and dont deserve a job emptying bins let alone helping vulnerable kids.

After we phoned them to say it was an emergency they didnt phone back. Even when we went to A&E and eventually spoke to them the "manager" said it wasnt their problem, I should phone police or social services, and maybe we needed to look at our parenting skills. Oh and we shouldnt have taken him out of school that day because it would upset his routine.

We've got another CAMHS appt now but it looks like we're NEVER going to see a psychiatrist if we wait for them. They know full well that just counselling has done nothing for him in the past (we paid for that privately) but thats all they're willing to look at.

He does have a private appt this week with a consultant psych. It was not easy to find one. In our area  (south wales) there was only one option - £900! Which seemed a bit steep. We considered an online webcam consultation but that was £150 for 1/2 hour parent, then £300 for 1 hour child. In the end, we did find one in Bristol (About 40 miles away) for £220 initial appointment. Not too bad. £170 for follow up but hopefully not many!

Hoping we can at least get a proper diagnosis and a treatment plan to take back to GP.(i.e meds if they think appropriate). Hoping that then this will then enable us to take things forward with GP.

But yes, its scandalous the services in the NHS. With so many young people commiting suicide etc its just appalling that departments just dont seem to take it seriously.

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Well he had the private appt yesterday. Brilliant - well worth the money. Even though he does have to go back for follow up - £170 more so its going to be £400 all in.

Hes been prescribed Sertraline and disagnosed as OCD and Aspergers. Well worth the money. At last someone who could look at the big picture and come up with a plan. So he is continuing with CBT but at least we've got a whole approach.

Its so annoying that the NHS can't rprovide this and we have to pay. Fortunately, for me the £200 is a days pay for me. But obviously, not everyone could do this. Absolutely scandalous to think that there are families being left high and dry like this.

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On 16/11/2017 at 09:13, paulfoel said:

Well he had the private appt yesterday. Brilliant - well worth the money. Even though he does have to go back for follow up - £170 more so its going to be £400 all in.

Hes been prescribed Sertraline and disagnosed as OCD and Aspergers. Well worth the money. At last someone who could look at the big picture and come up with a plan. So he is continuing with CBT but at least we've got a whole approach.

Its so annoying that the NHS can't rprovide this and we have to pay. Fortunately, for me the £200 is a days pay for me. But obviously, not everyone could do this. Absolutely scandalous to think that there are families being left high and dry like this.

Hiya, so glad things are looking up for ur son now, my son also has aspergers as well as OCD! I’ve also just been given the prescription for sertraline as well, although  it won’t be ready til Monday, Hoping my son responds well and doesn’t have any side effects, how’s ur son doing on it? X

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On 17/11/2017 at 14:54, Wonderer said:

Hiya, so glad things are looking up for ur son now, my son also has aspergers as well as OCD! I’ve also just been given the prescription for sertraline as well, although  it won’t be ready til Monday, Hoping my son responds well and doesn’t have any side effects, how’s ur son doing on it? X

Just been a few days so far. Trouble is he cant be trusted to bother to take them so we have to check all the time.

Todays "drama" - head of year from school phoned. Hes not been doing his homework and looks like hes been hiding letters/school reports.  We leave him in the house alone and he can't be trusted either - we've got lock on our bedroom door otherwise hes in there looking for handgel. Every time hes home something gets broken too - toilet blocked. batroom flooded or yesterday, kitchen door pulled off hinges. I dont know how he manages it.

Its very wearing that its becoming obvious that we are going to have to watch him a bit more. I know to a certain extent its his illness but we just cant trust him at the moment. 

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  • 3 months later...

Paul I totally feel your pain! Have exactly the same thing with our son. Installed locks on living room and bedroom doors to avoid outbursts, had police round, tried Camhs and A&E etc. We're at our whits end now and I fear something's going to give. It's almost like OCD combined with control. You sound further along than us and I know you have a diagnosis now, may I ask how you are all getting on?

 

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  • 3 weeks later...
On 16/03/2018 at 19:27, LukeR said:

Paul I totally feel your pain! Have exactly the same thing with our son. Installed locks on living room and bedroom doors to avoid outbursts, had police round, tried Camhs and A&E etc. We're at our whits end now and I fear something's going to give. It's almost like OCD combined with control. You sound further along than us and I know you have a diagnosis now, may I ask how you are all getting on?

 

On 17/11/2017 at 14:54, Wonderer said:

Hiya, so glad things are looking up for ur son now, my son also has aspergers as well as OCD! I’ve also just been given the prescription for sertraline as well, although  it won’t be ready til Monday, Hoping my son responds well and doesn’t have any side effects, how’s ur son doing on it? X

Hi Luke - Yep its tough. We;ve been there. CAMHS useless, A&E useless, not tried Police yet. 

But he is getting more violent. Threw a mobile phone charger battery (house brick size) at me yesterday. All over a silly argument that he didnt agree with. I know its wrong but I did go nuts myself. Its hard sometimes - he's taller than his mother and hes also got a 4 year old sister (that hes been rough with in the past). What do you do?

We;;ve got OCD diagnosis and hes seeing CAMHS.. We paid for private psych and hes on medication too. Psych suspects 99% aspergers as well but no diagnosis yet.

Sick of people criticising me when I lose my temper with him (like the battery throwing,). Its hard. I've got the rest of the family to think about and protect too. I've had my mother-in-law recently criticise me because she'd seen a programme on TV (yep ONE programme) about how you had to be patient and remember the person had an illness. Jeez what can I say?

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Hey, we’re only human, I’ve shouted at my son too when his outbursts have gotten too much, we need to discipline as well, we need to set boundaries too, although realistic ones because we really can’t expect them to be able to handle certain things. I’m not going to be much help at the moment as my own son is going through a nightmare of a time at the moment too and I’ve not been able to do much to help him as he’s definitejy a bit more severe at the moment that he has been at times. Sertraline didn’t work out for my son and made him really ill so we’re med free at the moment.xx

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I also feel angry that CAMHS is in such a shambles like this, totally unacceptable.  It is hard work parenting a child who has OCD as it is.  My 13 year old is struggling with no support at the minute, we have 2 young kids which know something isn't right because sister no longer wants to play and if that's not enough my mum has severe mental health issues relating to OCD that wasn't treated quick enough.  When you really need a service to take of the pressure, say yes I know whats wrong and here is the plan to get her back on track, back in school ect.  I'm accused of being the over anxious mum that's not helping with her issues - too right i'm bloody anxious coz until someone sits up and listen my baby could be like my mum, attempting to commit suicide.  Can't do much about my mum now sadly but NHS are putting my daughters future at risk and i've every right to be anxious.  A **** parent wouldn't give a **** and rather than them trying to pull me down its about time they step up with their services.  What is a mental health practitioner in CAMHS? Thats who she seen last time and he is useless, said he was not there to make a diagnosis and she could go on a waiting list for group therapy.  She has a further appointment next week with the same person, after requesting someone else.  I think she finds it hard to relate to him and a lady with a more gentle approach would make her feel a little more at ease.  Doctor seems to understand her better and she has referred her to a pediatrician now but I am still very dubious of whether their support will ever meet what my daughter needs, especially when I read posts like this.  We are trying to find a private psychologist and they are also hard to find.  One is booked up for 6 weeks so didn't want to book me in, voice mails left and no call backs. I've sent two emails tonight to the same people I left voice mails for so waiting to see what comes of those. 

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On 03/04/2018 at 21:43, Wonderer said:

Hey, we’re only human, I’ve shouted at my son too when his outbursts have gotten too much, we need to discipline as well, we need to set boundaries too, although realistic ones because we really can’t expect them to be able to handle certain things. I’m not going to be much help at the moment as my own son is going through a nightmare of a time at the moment too and I’ve not been able to do much to help him as he’s definitejy a bit more severe at the moment that he has been at times. Sertraline didn’t work out for my son and made him really ill so we’re med free at the moment.xx

Yeh thanks wonderer. Thats just it - we've been able to pick our battles with him but I feel that violence is way crossing the line.

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On 04/04/2018 at 01:00, Orchid2016 said:

I also feel angry that CAMHS is in such a shambles like this, totally unacceptable.  It is hard work parenting a child who has OCD as it is.  My 13 year old is struggling with no support at the minute, we have 2 young kids which know something isn't right because sister no longer wants to play and if that's not enough my mum has severe mental health issues relating to OCD that wasn't treated quick enough.  When you really need a service to take of the pressure, say yes I know whats wrong and here is the plan to get her back on track, back in school ect.  I'm accused of being the over anxious mum that's not helping with her issues - too right i'm bloody anxious coz until someone sits up and listen my baby could be like my mum, attempting to commit suicide.  Can't do much about my mum now sadly but NHS are putting my daughters future at risk and i've every right to be anxious.  A **** parent wouldn't give a **** and rather than them trying to pull me down its about time they step up with their services.  What is a mental health practitioner in CAMHS? Thats who she seen last time and he is useless, said he was not there to make a diagnosis and she could go on a waiting list for group therapy.  She has a further appointment next week with the same person, after requesting someone else.  I think she finds it hard to relate to him and a lady with a more gentle approach would make her feel a little more at ease.  Doctor seems to understand her better and she has referred her to a pediatrician now but I am still very dubious of whether their support will ever meet what my daughter needs, especially when I read posts like this.  We are trying to find a private psychologist and they are also hard to find.  One is booked up for 6 weeks so didn't want to book me in, voice mails left and no call backs. I've sent two emails tonight to the same people I left voice mails for so waiting to see what comes of those. 

Yep CAMHS are useless. We waited and waited and waited. Then when he started to get really violent, we ended up in A&E. They phoned CAMHS who said it wasnt something for them. Not sure who else there is?

They're advice - "you need to look at your parenting methods" - I nearly exploded.

Or call the police. I'm sure the police are well happy to hear from parents of children with "issues" like this. What are they going to do?

Edited by paulfoel
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  • 2 weeks later...

CAHMS employ temporary agency workers.  The one my daughter was assigned to knew nothing much about OCD other than checking windows for 3 hours a day. He kept telling me diagnosis is an ongoing process and he needs to gather lots of information. He was working from a book at her last appointment. Thank god they realised he wasn’t the right person to be assessing her at their last meeting. She has now been assigned a new therapist who is experienced with OCD and things appear to be moving in the right direction. She is feeling happier knowing that finally there is some understanding of what she is going through. 

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Update - hes seeing CAMHS now for his OCD so its a start. Limited use I fear though.

Hes a bit calmer on his medication now (when he takes it!). No thanks to the NHS for that one - we had to pay over £400 for a private psych to get that prescribed. We've even asked CAMHS if they can get a doctor to see if he needs an increase in meds (rather than go back to private one - another £200 kerching!) They just looked at us as if we'd asked for £1000 in cash!

Nothing on Apergers diagnosis - its been almost two years now. Although private psych is 99% sure.

Apparently, we are now waiting for some referral form from the school - how've had it  months now. Lets just I was not impressed this week to receive a letter from the school saying his attendance was below the norm. Time to do this but not time to help solve the attendance issues by pulling your finger out!

Luckily, we can afford the psych fees and, in the past, private therapy fees - probably over £700-£800 so far (just about afford!). Not so good if you can't pay this but, of course, our NHS is brilliant, isn't it? (NOT!!!!)

 

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  • 2 weeks later...

My daughter no longer goes to school and is due to start afternoon tutorial sessions with the schools special educational needs teacher in the library once a week.

If your son totally drops out of school his school should refer him to SENCO. Sadly there’s more support available for total non attenders than those that even attend just a few hours a week.

It doesn’t surprise me that you had to pay out for an assessment for medication. My daughter is starting her CBT in less than 2 weeks, every week to begin with but been offered no medication at all despite her becoming depressed with her OCD. I’d like to think she will engage in the therapy and it works but I suspect it is trial and error with the NHS. Down the line I think they may realise they have to put her on medication to help her fully engage in the therapy. 

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I don’t understand why CAMHS haven’t offered medication, when my son was really down his CAMHS therapist made us an appointment with the CAMHS psychiatrist who prescribed medication, it didn’t work out for us but she has monitored him every 4/6wks since October now to see how his moods are and wether we want to try meds or not again, she also liaises with his therapist in between appointments to see what she thinks, extremely supportive...Xx

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