OCD Specialist Centres - help for my 16 year old

This post has been thanked 1 time. 28 January 2020 - 11:08

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Hi. I’m new to this forum. I have a beautiful 16 year old Daughter, who for well over a year developed OCD with intrusive thoughts.  It’s been the toughest part of my life watching what has and is still affecting her. She was eventually seen by CAMHS last summer, she has a therapist and a Psychiatrist. Her therapist has told me her OCD is severe. I don’t want to go too much into detail (it’s draining), but my daughters onto her 2nd round of CBT Therapy and currently takes 75g of SERTRALINE daily. Although she’s a little calmer, the OCD is very much present and she hasn’t engaged in therapy. I was thinking of using the template letter on this site to ask for a referral to a OCD Specialist Centre and wondered whether I should write the letter from me (the parent) or my Daughter.  I wondered whether it makes any difference who is asking for the referral. If anyone has any advice in constructing the letter and tips/pointers, I would be so grateful for it. I’m feeling very desperate and can’t see light at the end of the tunnel. Thanks x

 

18 February 2020 - 1:09

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Hi Cocoa,
I sympathize greatly with your situation as going through the same thing with my 20 year old son who has severe OCD for almost 5 years. He has had 2 lots of CBT and 2 changes of meds.
Specialist OCD unit is out of area so psychiatrist has to apply for funding to something called an oats panel. We have been waiting for 3 months to find out whether he's eligible!
As well as letter from psychiatrist, I sent a letter explaining how it effects the whole family and my son added a paragraph about how he felt.
No idea when we will hear, it is so frustrating! He is completely stuck but we've done everything we can now. Just hoping he can push himself to make small steps forward or he won't manage to go anywhere for treatment!
Hope you have some luck. Keep pushing forward.

7 June 2020 - 8:31

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Hi Cocoa and Peace seeker, I have just joined this forum and am in a similar situation with our 19 year old son whose ocd is severe right now.  He has been suffering with varying degrees of symptoms since the age of 3.  He has been taking setraline and quetiapine since last year, not really helping, needs reviewing.  Just reading through a few topics to get to know the site and yours caught my eye.  I wondered if either of you had an update to your situation or if the pandemic has halted all the support available?  I have not heard of o.c.d. specialist centres and wondered how you heard about them?  

Where we live there is a 24 hour mental health crisis line which I had to call yesterday as the situation at home is so stressful.  I had to ask for more support by phone for him.  He hasn't seen a human being since December.  There are no face to face appointments of course, but I am hoping they might be doing online appointments via zoom or WhatsApp.  Also feeling desperate and exhausted!

 

 

 

11 July 2020 - 8:35

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Hello Fedupmum55 ,
Sorry it's taken so long to reply. I haven't been on the site for some time. Sadly nothing positive has changed for my son. His case has been referred to this OATS panel by the psychiatrist which is done to secure funding to go out of area for treatment. I used the bones of the letter on this site to support the psychiatrist's referral. That was back last November and we've still not heard anything even though I've chased it up!! Since then he's only had one telephone call from the psychiatrist which again I had to request. It is a totally inefficient service to say the least.
I am now at a stage where I am looking into private therapy ( I have been recommended Balanced Minds) which will have to be on line as he won't leave the house now. The longer we wait the more complex his problems become so I totally understand your stress.
To be referred for funding out of area your child needs to have had at least 2 changes in medication and 2 cycles of therapy and exhausted all local services. The Bethlem hospital has a specialist centre. At 16 your child should be getting help from CAMHS it is not too late so push hard! Once over 18 they are no longer seen by CAMHS and it is a very poor service. If you go privately check the qualifications of the therapist. You could also contact Youngminds charity who give good advice/ information.
I hope that you can keep fighting and receive the right treatment for your child.

11 July 2020 - 20:04

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Hello, I am an OCD sufferer and I have been for as longas I can remember.  I sympathise with you all as I know what my family (when I was younger) and what my husband has been through.  OCD is very draining and if help is not given it is so hard to do on your own.  There are lots of self help books that could help and also YouTube has lots of videos that can be good.  I got my help from the mental help charity MIND.  My husband wore me down to contact them and it is the best thing I have ever done.   I am currently having ERP treatment which I am surprised none of you have mentioned.  It is incorporated with CBT and is the best therapy for OCD.  It is now known that just talk therapy is no good for OCD.   I am doing really well and can actually see the end of the tunnel getting closer after many years of suffering.  

I hope things get sorted for you all soon.  Good luck.

1 August 2020 - 0:49

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Hi Fruitcake Areyou still having treatment during the pandemic? If so how are you accessing it please? Thank you.

 

14 September 2020 - 11:52

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Thank you all so much for being honest in documenting these situations.  Our young adult daughter has newly diagnosed OCD with severe contamination worries - for her and everyone around her being contaminated. After two months of progressive intensity of symptoms culminating in hours washing and showering, day and night, and hysterical behaviour if the routine or order is not completed.  We are at the start of  the procedure of a short in-patient assessment with medications and hopefully CBT very soon, thanks to a good GP and Community Mental Health Services. However, she or we have not yet seen an OCD specialist as they seem to be very few and far between and we are in the hands of psychologists and psychiatrists. It is so hard for us to know how or what boundaries to set when she comes home, as no-one seems able to advise us or her and we feel very much in the dark.  This is such a cruel disorder and, as said by others, one that you can have no real knowledge of until it hits you or your family. It is all made even harder with Covid and no face-to-face appointments.  How on earth can someone gauge an OCD sufferer's level of panic and fear without seeing them.. it's easier to hide your emotions and expressions on a small screen than face-to-face!  Sending all of you best wishes and that you can get the right help and stay strong enough to cope with it all.   

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