Orchid2016

She doesn’t just have OCD either, it’s been identified that the underlying problem is GAD. So two anxiety disorders, but problem is with GAD it doesn’t display noticeable behaviour like OCD. I believe the therapist is right with what she said because I have GAD to but SA instead of OCD. I think my daughter will get there eventually because she will get the right combination of treatment eventually. Once we become adults all they want to do is offer us 6 weeks talking therapy and tablets. Not really enough for a 25 year life long condition, shocking. In my view tablets are basically a plaster which make the problem less a problem so that it’s easier to deal with, hence why they can work well with therapy for some people but It’s the therapy that would substain the results. So really doctors shouldn’t offer tablets without therapy but that is what they do to adults, yet for kids they offer therapy alone because of the risks of suicide.

My daughter is 14, yes it is frustrating. I so wished I had paid out for her to see a private psychiatrist the start of this year, had I known what I know now about the long winded process I would have done as I knew she needed to be on medication as well. She was referred onto see a psychiatrist a few months back due to her stalling with therapy. She still drinks little water each day, all the therapy has done is helped her return to school but what now? Her therapy has been suspended because she’s had about 40 sessions and the therapist manager will wonder what is going on if she had anymore. She can’t see the psychiatrist until February but unable to see the therapist again until she’s been on medication for 6 weeks. It’s been passed onto the school nurse to help mantain the progress she made in CBT until she can have the appropriate treatment. It’s going to be about a 6 months wait for us from referral point by the time she is seen. Had no idea they had waiting lists to see other medical professionals. No wonder it takes to long for CAMHS to see children for first appointment as there’s children like my daughter have extended therapy to bridge the gap due to the shortage of Phychiatrist, that said her treatment has been messed up/delayed because she’s had what is seen as the maximum sessions.

My daughter had been having therapy now since around the middle of May this year. Thought at the time she was real bad and could do with tablets and therapy together. Anyway she’s been having therapy mostly every week but she hasn’t made enough progress, well she was very bad and still really struggles. The therapist is keen to get her better and said with the type she had it is not so effective to treat with therapy alone. So around the end of last month, over 4 months into her therapy we are at plan b medication and therapy (told you so months ago!) However its another waiting list and the therapist had no idea how long it is. She said she will push it as an urgent matter. What a farce. Therapist great but naff set up. Has anyone else got any experience waiting lists for medication assessments?

Daughter had been seeing therapist usually once a week, when she doesn’t see her one week she gets worse. She has managed to get back to school, a struggle but she isn’t able to do any homework. I predicted when she first started seeing her therapist 3 months down the line after a trial, the medication talk would come and bingo. However we’re on a waiting list for her to see a Phychiatrist despite her stalling with therapy. Her therapist is very keen to push it as urgent so she recovers ASAP (doing GCSES now) but I’m sure there’s other urgent cases to. She also said with her type of OCD it is harder to recover from therapy alone. So if I’d have seen the same person as Paul did they would have prescribed her meds from day 1 but CAMHS would not have done despite any private report and would have made her wait for 3 months or therapy before plan b of medication and therapy anyway *sigh* this is what gives NHS bad name, so slow to act on things as they have targets and framework to follow.

My daughter is sad all the time and we have to put up with crying episodes every day, multiple times in some cases. She gets hysterical and shouts at my 4 year old. I have told this to CAMHS and because her therapy is starting next week been told to give that time and if it isn’t working they will review treatment options. I think it’s very much a postcode lottery to how CAMHS operate and your experience shows the inconsistency in treatment. Unfortunately there’s no way of knowing which medication is right and how they will respond to it, all trial and error. Perhaps the NHS are afraid of giving out the wrong medication or just haven’t got the resources for many children to see the psychiatrist so have to limit it for those who are suicidal or had breakdowns. My daughter is a nightmare to live with right now, it’s made it a very unhealthy environment to bring my 4 and 5 year old up in but due to postcode lottery I guess we have to ride this out until the NHS give her the medication she needs. Hopefully she doesn’t have a breakdown before then.

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.

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.

Thankyou for your reply. Sorry to hear about your son. Sometimes the NHS don’t understand do they and it all depends on if your lucky to get the right person. Which has been our problem all along. The mental health practitioner she was under didn’t know much about OCD. You would think when a child is presenting symptoms of OCD they are assigned to someone with the appropriate skills. He was just a temporary worker from an agency that had recently joined their team. They now know he isn’t upto the job of assessing what’s going on and treating her and they appear to be doing what they can to get her the right support. She’s been assigned a new specialist who is experienced with OCD and should be starting an OCD therapy course next month. At least for now my daughter now feels understood and hopefully we won’t need the private report.

We are having issues with CAMHS. After my daughter telling them she has OCD and her thoughts stop her from eating they have been exploring eating disorders. Correctly ruled them out but still haven’t diagnosed her with OCD. Not sure what they think she has then? We was told last time diagnosis is ongoing and was given the impression it was going to take quite some time. I have found someone who can do a private diagnosis for her. If we got her diagnosed privately, can we take the report to our doctors/CAMHS for them to step up and give her appropriate treatment? Or would they use this as an excuse to withdraw their services?

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.

Hi Thanks for the reply. It was helpful and made me think about the situation from another’s angle. I thought perhaps they would have put therapy in place before tackling with the issues. Anyway ive decided to follow the advice including with drinking and meals. The result has her been doing nothing for herself including no eating and drinking. Only if she is so starving more than the pain of her thoughts. 36 hours without any intake and down at the doctors all morning. Doctor is basically doing everything possible and made referral to peadiactrician. So much for being told it’s not severe OCD.

Sorry to hear of your problems with CAMHS. Have you managed to find a solution. We are in the same boat and I know how frustrated you must feel. My daughter has ended up dropping out of school. Have you managed to find a way forward yet? We are looking for a private psychiatrist in the Nottingham area for a professional diagnosis. I am sure if she sees the right person she she should get heard correctly.

My daughter had an assessment with CAMHS and today we have been informed that she has been referred to their in house support team called Anxiety Gremlins. What exactly is this? When I asked if this was CBT I was told it was something similar? Has she been given some watered down form or counselling? He also told me not to do anything to help her anymore, like with help getting dressed, eating ect. I've decided to take the advice to some degree but I will have to help her eat and drink. As for getting dressed it means she won't be able to do this herself due to her anxiety being so bad and unfortunately it means her dropping out of school. What would you do if it was your child? I have been helping her as a way to support her in getting to school as much as possible but if she doesn't go she has more time on her hands to have thoughts. I suspect we haven't really been heard properly at CAMHS, he said the referral only came from me despite the fact school had been in contact and also made a referral to them. Apparently they have no record of it? Something also that I disagree with is he is suggesting his team of experts believe it to be anxieties related to home as that's when she carries out the rituals mostly and he saw no evidence of OCD. He says not chronic OCD as she isn't doing it all the time. She does it out the house as well, my mums seen her do it at her house and also she does it at school but not as much as she hides it from people at school. Her problems started when she moved school and has had to drop out of History due to the thoughts she has been having. Things are so bad a home, i've been having to everything, dressing her, cleaning teeth, feeding her, helping her get a straw in her mouth, walking her to school on days she can get up, the list is endless. If its not chronic OCD, its chronic something because she isn't going to school anymore and only made it into school 3 hours last week despite my efforts with her. Has anyone got any suggestions or experienced similar issues with CAMHS? I've been in contact with my MP and school have been made aware of this problem we have had thrown onto us. I suspect its a lack of funding and CBT must be rationed for the lucky few.

My 13 year old daughter is suffering from what appears to be a very severe form of OCD, she had an assessment this week and were waiting for the outcome. The last month she has been very down, crying alot, missing alot of school and I am having to do everything for her. She is unable to brush her teeth, get dressed, do her homework, walk though door entrance into another room, get in and out of bed, eat food or drink water. It is really bad, she is totally taken over with what ever is going around in her mind and almost Zombie like. She says she has to keep thinking her thoughts until she gets a good thought. Is this a case of severe OCD and depression, or is something else going on. Its really strange. She said her OCD started when she moved to secondary school and most her thoughts seem to centre around bad events she has learnt in History. Shes had this for over 2 year but since she spoken to CAMHS to self refer and had time off school for half term shes been on a downhill spiral. I have noticed that the more I helped her, the more she seems to struggle with. Shes been told she will be placed on a waiting list for CBT and someone will visit her at home in the meantime. Shes had a far better childhood than I had, spoilt in some ways and i'm taken back that things are so bad with her. She says her thoughts stop her from doing things, is this a severe case of OCD or is something else going on? What if anything can I do to improve the situation? Things are so bad at home and we've been left to get on with it so far. Its a really hard situation to have been thrown into having two very young children that are very reliant on me.