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Ashley

Your feedback wanted - Supporting parents better

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The parents and family of children with OCD are often the forgotten amongst therapeutic interventions or frequently left to manage their child’s OCD without any support whilst on long waiting lists. OCD-UK want to do more to give parents better support and address some of their needs in a collaborative project next year.  In order to ensure we meet your needs, we’re looking for input from parents and/or families of those who have a child (under 16) with OCD.   

So as a parent (or family member) of a child with OCD, thinking about all the problems and questions that you had/have managing and supporting your young person with their OCD, what are your top three priority areas you would have welcomed help?  Please list up to three:

  • First Priority.
  • Second Priority.
  • Third Priority.

Some examples of common areas of interest that parents reach out to OCD-UK for help, which might be some of your own priorities (or you may have others of your own).

  • A NHS/OCD-UK workbook for parents whilst waiting for therapy, (offering OCD education and preparing the child for therapy).
  • Regular (monthly) opportunity perhaps in a brief group drop-in to ask questions of NHS therapists, especially whilst waiting for therapy.
  • Opportunity to share with other parents (support group like the forum but in other format)
  • More information and guidance about OCD from a parents perspective about how to handle various OCD situations... like a Q+A section on the website.

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It is fantastic that OCD-UK are considering doing this project next year to offer more support to parents coping with a child with OCD.  

This is exactly the sort of help our family have so desperately needed over the past year whilst going no where fast with the NHS and CAMSH system and in that time having to watch your child’s symptoms escalate out of control. It has been devastating for us as a family and also nearly impossible for us (as a family) to live with at times.

My first priority - advice and direction to parents how/where to seek help.

We wasted months in the beginning going round in circles as our GP fobbed us off and told us the school needed to do a referral to Early Help to access CAMSH and the school said the GP needed to do this referral.  Also guidance as to how to access therapy privately would be helpful which is what we’ve had to resort to now. If only we had realised what the CAMSH wait time was going to be like as we would have gone privately for therapy months ago.  

Second priority - An NHS/OCD-UK workbook for parents of children awaiting therapy would be fantastic.

How to support your child without feeding the OCD!! Our sons OCD has probably got 50 times worse (whilst we were waiting in the system) and despite our best intentions, our actions have probably inadevertently allowed this as we did not had the tools or understanding to prevent this. 

Third priority - a regular local support group or drop-in service with NHS therapists would be invaluable and these forums are also very helpful.

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We have only recently embarked on our OCD journey with our 6yr old son, so I don't have the answers to all these questions. But my first priority would echo above: advice and direction to parents how/where to seek help. 

In September I started to think that the challenging behaviour we were facing with our 6yr old was anxiety related and started looking for help so as I could help him manage this anxiety so it wouldn't get too much worse. Three months later of seemingly shouting into the abyss and reaching dead ends with the GP, CAMHS and his school as well as an incident of bullying, and his anxiety, anger and OCD are now out of control. And even now, with clear symptoms, a more helpful GP and the start of private therapy, I still feel unclear how to support him as a parent. 

Another priority in our case would also be some information to help parents of very young children with OCD (under 8s). The leaflets designed for children are helpful to a point but often include language or content which is difficult for a 6yr old. 

I'd also appreciate some guidance on what I should be documenting and what is the best way to document our journey in order to best present it to CAMHS / school / other professional bodies. 

I'm sure as time goes on we'll have many more opinions on this! But thanks for undertaking the project. 

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Thanks for your feedback both.  This remains one of my priority areas for 2018.  Our funds are limited, so we may not be able to do everything but we will do something :)

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This is a great idea. I’m a long-term sufferer of OCD (often in different ways to my daughter) and a parent of a child (since the age of 4) exhibiting ocd symptoms. We’ve been under CAMHs with our youngest for some time. We’ve done a lot of graft at home applying what I have learnt from my own therapy (CBT) with our daughter and her ocd has transformed enough for CAMHs (alongside other reasons) to currently refuse to formally diagnose her. We’ve been blessed with excellent school support with teachers willing to read OCD UK’s Jolly and Grump and put a school plan in place for her. I’ve felt very lucky that my own need for therapy (high intensity with IAPT) gave us a toolbox we could use at home or we’d have been at a loss. In the end it is the parents who are mostly the ones on the frontline in dealing with a child’s ocd and I think training them in how to use CBT for ocd is the best approach - the parent is then the available therapist. The parent is also the common link in the chain - the one that sees the child’s teacher, GP, CAMHs, etc., and with that training they can advise the school and so on. Maybe an online course for parents where they can learn the basics and an interactive forum where any creases in applying that new knowledge could be asked about.

 

 

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Living Inhope I had to check I hadn’t written this myself. The whole gp school thing is exactly my experience. We eventually got to camhs because my daughter did a self referral through a youth club. She is now on a waiting list for CBT. 

My priorities would be

how to seek help whether that be through go/camhs or privately 

how to support the child (teenager) whilst waiting for help. How to not accommodate their obsession but also try to reduce anxiety and manage things to try to maintain normal family life

 

how to get support at the child’s school. My yr 11 child has been refusing to go to school because she can’t cope with expectations. School are now trying to help but only because of her attendance and her target grades have dropped from 8’s to 3’s. However, I don’t think they understand her difficulties and although we have support from family services and camhs I have still received a letter threatening prosecution for poor attendance with ‘no satisfactory reason ‘

a booklet for schools might be helpful 

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