Liverpool OCD Support Group Discussion

[Jayne6]

Think I've posted this too late 

[Ashley]

36 minutes ago, Jayne6 said:

Hi, I'm quite new..my name's Jayne. Is it ok if I just listen? I'm the carer for my daughter who has OCD 

Hi Jayne, Dave and Catherine have logged off now but I'm around tomorrow. I'm more than happy to offer any input if I can. Did you have any specific questions? 

[Jayne6]

Hi Ashley, lots of questions really! My daughter is 16 and has severe OCD and BDD (diagnosed 3 years ago) and is currently working on exposures but she finds it so so difficult.  Just this week she has managed to delay some by up to 1 minute. I worry about this so much. Just about how long the road to recovery is and how much of her life this has already taken (she hasn't been able to go to school for almost 3 years and doesn't see any friends).  She is afraid of so much. As a parent who sees the daily struggle I feel helpless a lot of the time. Can you give me any good tips to support her? I try my hardest not to give her reassurance but it's not always easy.

Questions are always popping into my mind!

Thanks Ashley

[Zoe]

Hi Jayne, I hope you don't mind my replying to you, Ashley had asked me to. My name is Zoe and I am the project leader for the parents project. 

I am sorry to hear that your daughter is struggling with her OCD, and that things are difficult for you too. Is your daughter currently having any therapeutic help? Or had any previously? As you say, it isn’t always easy not giving reassurance to someone you love, so try not to beat yourself up about this, it is normal to want to reassure someone who is in distress when you care about them. Have you tried any healthy reassurance techniques? When she is feeling like she cannot achieve her exposures use positive emotional reassurance such as:

• You can do this
• We can do this
• We are in this together
• Together we are going to beat OCD
• Together we are stronger than OCD
• I believe in you/I am here to support you

This isn’t reassuring the OCD but reassurance to your daughter instead. They may sound so simple but they are great for motivation and courage to try. I understand that you might not see this now, but recovery is possible and there are many people proof of that. OCD may damage parts of someone’s life but it doesn’t shape the future. My advice to your daughter would be to be compassionate with yourself, don’t beat yourself up for having a setback, but don’t let it stop you from trying again tomorrow. Focus on now, today, but not tomorrow as this can be overwhelming. Any progress is heading in the right direction, whether it means that instead of a delay of up to 1 minute, it could be 50 seconds, this is still progress. Also in our experience, the snowball for making progress does move swiftly, so 1 minute soon becomes 10 minutes. Keep encouraging your daughter to ‘choose’ to challenge herself.

Hope this helps Jayne

[Jayne6]

Hi Zoe

(I typed a reply and thought it had sent but it appears not!)

Your reply absolutely helps, thank you. Its great to have support for both of us. Yes my daughter has had lots of therapy, with camhs  and this will continue. At the moment she is having a therapy break to concentrate on exposures. We have both always been positive of a recovery. We find it helps, as you say, to take one day at a time.

Thanks again for your advice Zoe

[Ashley]

1 hour ago, Jayne6 said:

At the moment she is having a therapy break to concentrate on exposures.

Sorry switching between Zoe and I at the moment, but just had a quick read before I log off for the night and saw this Jayne.  Was that your choice to have a therapy break?  If so, fair enough  but I do get sceptical when therapy services try and make out like they are doing patients a favour to give them a break to work on exposures, when arguably this is the time patients need the therapist the most.

I guess the point is, if you feel your daughter needs more support, do seek it.

[Jayne6]

Thank you Ashley, I will. Freya's OCD is a lot worse at home. A therapist came to our house for 6 weeks to support her with exposures here. They said they want her to focus on them (especially given the virus situation). When things get back to normal she will have a review. I agree with you and I will certainly be pushing for further therapy at this review. 

One thing they did say, during a phone call last week, when I asked about further CBT sessions was that she has had all the CBT she needs (she has been with camhs for 3 years) and has learnt the strategies etc but that an alternative therapy would perhaps be looked at. Freya also wants to "dig deeper" because she has a lot of unresolved issues from the past that she wants to deal with that are at the root of her OCD-they said she would have therapy surrounding this too. Can I ask if you think this all sounds reasonable?

Thanks again

[Ashley]

3 minutes ago, Jayne6 said:

One thing they did say, during a phone call last week, when I asked about further CBT sessions was that she has had all the CBT she needs (she has been with camhs for 3 years) and has learnt the strategies etc but that an alternative therapy would perhaps be looked at. Freya also wants to "dig deeper" because she has a lot of unresolved issues from the past that she wants to deal with that are at the root of her OCD-they said she would have therapy surrounding this too. Can I ask if you think this all sounds reasonable?

Zoe is back in tomorrow afternoon so she may have a different thought on this to me, but my view is I am hearing a lot of excuses by the CAMHS, perhaps for the fact Freya is still struggling.   In my experience it's not usually the 'therapy type' that is the problem, but the therapist delivering that therapy. So I would be inclined to change the therapist, not the therapy.

I think unresolved issues will be contributing to the OCD, but sometimes dealing with unresolved issues doesn't change the OCD much. I don't see any reason why a good CBT therapist could not explore those unresolved issues whilst still helping the patient (Freya) engage in CBT at the same time. 

That's not to say another therapy type could not help Freya, but if OCD remains a big problem, I would stick with the evidence that suggests CBT is the best we have, and perhaps seek out a different CBT therapist. 

Are you in Liverpool Jayne?  It might be worth pushing for Freya to access an NHS OCD specialist?  There are a couple of clinics, the Maudsley Children's clinic in London, but the issue there is with her being 16, if it takes a few months to get the referral sorted and she turns 17 the window for discharge at 18 is shutting.

The new Oxford clinic does take on people of Freya's age, and because it's an adult clinic there would be no issue if she still needs a bit more therapy when she turns 18.

But, ultimately what your local CAMHS propose may be right, and you have to do what you think is best for your daughter

 

 

[Jayne6]

I know you've been very busy today so I really appreciate you replying to me, thank you. You have certainly given me a lot to think about. Yes, we live near Liverpool and I have heard of the Maudsley Children's clinic but thought we lived too far away. The Oxford clinic is new to me. Would that be a referral from camhs do you know?

Freya had a wonderful therapist (psychologist), she was an OCD specialist with camhs, but she left to go on maternity leave last year and since then I feel Freya has stayed the same, with lots of dips, but no movement forward.  Her old therapist is due to return at the end of April and I have asked her care coordinator a few times if Freya can have therapy with her again but I get the feeling that's not going to be the plan. I have lost a bit of faith in camhs to be honest but I haven't known what to do and I wouldn't be able to afford private therapy.

Thanks for your help Ashley