Hi. I’ve posted about myself in other communities with an unrelated issue- but can anyone help with this I wonder?
Nearly 3 years ago my then 15 year old son was diagnosed with OCD. He had kept most of it secret for a long time. His main issues were spitting hundreds of times a day, various rituals taking up a lot of his time, habitual skin picking, intrusive and disturbing thoughts, coughing, clearing his throat, and many many others. His compulsions and anxiety make him regularly very depressed.
As soon as I realised, I took him to the GP who agreed to refer him to CAMHS, but said there would be a 3-6 month wait. As I was so worried about his mental health I used my company private health insurance to go private. He saw a really helpful psychiatrist who prescribed medication and CBT. The medication helped initially, but he found it difficult to engage with the CBT. The. The effects of the SSRI started to wear off. He had 4 sessions of CBT and the psychiatrist spent the next year trying different SSRI’S plus Aripiprazole, none of which had much effect. After about 18 months he suggested he should be referred to the adolescent OCD unit at the Maudsley in London, but that referral would need to come through CAMHS. So we went back to the GP for a CAHMS referral and waited. In the meantime we had a private consultation with one of the consultants who work in the OCD unit who agreed he would benefit from referral there.
When we eventually got seen by CAMHS they said they couldn’t refer him without having had any treatment through CAMHS yet. So I said fine, treat him then, we’re happy to wait and give it another go. Six month wait for CBT. 😡. So while waiting my health insurer covered 10 CBT sessions for him privately.
He came to the top of the nhs CBT waiting list and has now had 6 further sessions of CBT, none of which are helping him even though he is trying hard with it. They also keep cancelling his sessions and only offering him one every few weeks, so all of this is taking ages.
Fast forward till now. He is 17 and a half and no further forward. I asked the lead clinical (psychologist) for the third time about referral to the Maudsley OCD unit, only to now be told, oh, at his age we would now only refer him to adult services, which in this case would be a local OCD Clinic run by Health In Mind, which I don’t think would help him at all. I don’t think she had contacted the Maudsley. I think she had made up her mind not to refer him. After saying he needs to go through CAMHS treatment before we can even think about funding a referral into the specialist unit, they are now saying it’s too late. I’m utterly fuming and feel they are trying to fob him off because he’s 18 in 4 months.
I don’t know where to turn next to help him.😢 I might try contacting the Maudsley myself to see if it’s correct that they won’t accept a referral for him.
Well done if you’ve make it to the end .
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Chris1802p
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It's particularly difficult getting treatment for a teenager, as CAHMS is even more overstretched than mental health services generally, and when they are eighteen they are transferred to adult services anyway, which can be very disrupting just when they need continuity and stability. I think that clinicians and administrators do their best, but they system works against them. But I'm not surprised you're frustrated and angry.
CBT isn't the easiest of treatments, and it involves a lot of input from the patient. It can be upsetting to confront your OCD head on. As for medication, SSRIs don't normally wear off, but they aren't usually enough on their own without other therapy. I too take sertraline, at a high dose of 300 mg, along with a low dose of aripiprazole of 5 mg, and it is good for me. But it doesn't work for everyone.
It might be possible to get a referral to Springfield Hospital in Tooting. Their OCD ward takes adult patients so your son would qualify in a few months. A typical stay is four to six months, and patients are able to go out and about, and can go home at weekends if they want. I had four months there a few years ago and found it very helpful. They take patients from all over the country.
It's not good to have to fight for your son's treatment while dealing with his illness. If I can learn any more about how the system works for teenager I'll let you know. It's such a stubborn disease, OCD, and treatment isn't always easy, but it can greatly alleviate it.
Here's a PDF of a leaflet put out by Health in Mind. I don't know if this is the organization your son has been offered treatment with. It might be worth checking out anyway.
It sounds like you have been messed about a lot, so I do hope you can get something positive out of it. It's a horrible illness, and difficult for family as well as the sufferer.
Chris, I applaud you for your absolute dedication to helping your son! Despite his serious illness, your son is very fortunate indeed to have such loving family support; so many other young people struggle on their own, in silence -- with sometimes catastrophic results. When I was your son's age many years ago, I had absolutely no one to help me when my OCD first manifested. It would have been unthinkable to discuss it with my parents who would have immediately dismissed my distress as "looking for notice".
I would like to suggest that you also take care of yourself. Having an ill child can be all-encompassing and draining. There are support groups for parents of mentally ill children with excellent suggestions on how you need to take care of your own needs and live a happy, satisfying life yourself. Here in North America we have NAMI - National Alliance on Mental Illness. They have an excellent family support program; they also have some excellent online resources. May I suggest you try their website nami.org. Best of luck to you and your son. Sheila
I agree! It's fabulous that your son has good family support and he is lucky to have you. I had OCD for years before I even found out what it was. I have tried the patience of friends and family over the years and they have, on the whole, been brilliant.
it can easily happen that your life revolves around the person you're taking care of so I agree that you need to take care of yourself as well. It must be exhausting trying to get your son the help he needs while dealing with his illness yourself.
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