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Some exciting personal news to share with you this Christmas Day. 

A few weeks ago I was approached and subsequently commissioned to write a new OCD book from a service users perspective. The FAQ book of answers of living with OCD (and how to start the recovery journey).

My co-author Zoe (and with contributions and help from Gemma) and I have all waived our author royalties, so 100% of royalties from sales will go to OCD-UK when the book is published in early 2023. 

We hope the book will become a great resource for those newly diagnosed and for those still with questions on their own OCD journeys.  It won't be a self-help book, but answers to questions we have all had about living with OCD. Such as 'Do I need to tell the DVLA I have OCD', 'How do I find a trustworthy private therapist', 'do I need to tell an employer I have OCD?', 'when do I tell a new partner' etc.

And we want YOUR help! 🙏  We hope you can play a part in this book by submitting questions, even if you now know the answers now. What did you want to know at start of your own journey with OCD? or what do you still want to know?  

Submit on this thread, or email faq@ocduk.org or tweet to hashtag #OCDfaqbook

(all questions will be used anonymously).  We may not be able to use every question in the book, but we will try and ensure each individual gets some kind of response/answer in due course.

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Hi Ashley

A generous gesture. Thank you. At the moment we could turn into festive quiz even though some answers are not straightforward. I certainly do not know all the answers.

How long does a diagnosis remain on your medical record?

How does an OCD experiencer/sufferer know what is a ‘reasonable adjustment’ under the Disability Discrimination Act.

A few years ago hoarding became a separate category but there is still the concept of OCD hoarding. What is the difference?

Can a person with a diagnosis of OCD receive social care from a local authority?

How does IAPT work in England? Do the other U.K. nations have similar provisions?

What is the best medication for OCD?

Are there types of OCD?

How do you separate OCD rumination from depressive rumination?

What are the centres of treatment excellence in the U.K. How easy is it to get referred and receive funding? Can you privately fund to go to one?

What is better a OCD therapist or a private therapist?

I’m sure people with have loads of questions. You might need to do some editing!

Edited by Angst
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Wow, these questions from @Angst and the example questions you put in your original post are all really great - I hadn't even thought of them yet now I want to know the answers!

I think this book is a great idea, really admire you and just wanted to send congratulations!!

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Thank you everyone and yes great questions from Angst.  We are limited to words of course, and we have to provide a mixture of short, medium and longer responses across the book.  So part of the challenge will be selecting a shortlist of questions to include that will inform and help guide people.

I want it to be a mixture of (accessing) therapy and actually living with OCD such as dealing with subjects like dating, insurance, driving, employment, medication and pregnancy etc. 

The publishers have promised some complimentary copies for us to distribute and heavily discounted ebook copies for OCD-UK members/forum users and we will be able to choose a handful of the questions/answers to freely reproduce on the website.

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That's brilliant news - and will fill a real gap in the OCD recovery book shelf! Hearing from people who have been on the frontline of OCD is always inspiring and makes me feel less isolated.

I think my questions would have been - Do you have to get formally diagnosed as having OCD or is it ok to self-diagnose (e.g. using the Obsessive Compulsive Inventory (OCI)? Will I always be on an OCD spectrum (like diabetes) so I may be able to manage it/recover from it, but might need to susceptible to it coming back if my external environment changes/life events, etc? Is there a relationship between PMT and worsening OCD symptoms? [I bang on about this all the time, and from what I'm finding in Google Scholar in peer-reviewed literature, the answer is yes]

The context for my questions is that I self-diagnosed as having OCD at a peak of distress after identifying with what I read about it, having been treated (with medication) for depression, stress, anxiety, etc. several times over the years and always having the nagging feeling that how I was experiencing life, wasn't "normal" but not understanding what was wrong. The GP (not my usual one) said "yes, I think you probably have. Do you already have access to a counsellor? (yes)" and gave me some anti-anxiety meds to help me cope while I got to work with my counsellor who I had a long-standing and trusted relationship with, on understanding and tackling OCD. I think if I hadn't educated myself already about OCD, I don't think I would have known how to explain myself to a GP or realise what it was important to disclose to a therapist in order to get the help I needed. 

Writing a book is going to be an amazing journey for you and your colleagues. Good luck.

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Congratulations @Ashley this sounds wonderful. 

May I make a request? Before I found out I had OCD, I never knew that sexual obsessions were an actual thing. The NHS website lists them, but doesn't go into great detail. But what is very hard to find is information on things such as groinal responses and what not. Would you be able to include information on these? I believe there's not enough information around those areas and I believe there are a lot of people out there who have OCD, but are extremely confused about the obsessions they have and the groinal responses. The NHS website doesn't even mention anything to do with groinal respones last time I checked. I just feel that it's important, that's all. And because it's such a taboo subject people are less likely to seek help about these types of obsessions. 

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Ashipinharbor has a great one there - I knew I had OCD and self-referred to IAPT and was given medication without anyone batting an eyelid, but it would be interesting to know what degree of OCD I have in the great scheme of things and that sort of thing. And whether I'm considered officially diagnosed now simply because I asked for medication. 

Also the bits "dealing with subjects like dating, insurance, driving, employment, medication and pregnancy etc" @Ashley mentions above would be of the most interest to me, as I've never read a book like that before, whereas the accessing therapy side is a topic that seems easier to find info on, at least in my experience. 

A question for @Darwinia, did you find it helpful working with your usual therapist? I've read that other people have found this problematic when their usual therapist is not very familiar with OCD, as talking therapy can act as reinforcement and actually make OCD worse - I read an article by a girl that found it caused her to become incredibly dependent on her therapist, and this was actually harmful to her. Just mentioning as I want the best for you as a fellow OCD sufferer :)

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I just knew there was a book in you Ashley. And with Zoe and Gemma working with you, the team will realise it.

My question is, can I download, from a reputable site, a test questionnaire that will suggest if I have OCD or not?

I vaguely seem to remember coming across these on my own journey - although in my own case I was actually diagnosed by a doctor during my firm's excellent periodic health screening process.

If there is a simple format document that will give sufferers an indication, that could release a whole lot of strain from them. 

I recall helping one of the secretaries at work. She confided in me that she thought she was going mad. She constantly worried that something bad had happened to her husband, and constantly sought re-assurance that he was fine.

When I explained to her how and why this looked like OCD, and she should have no fear about going to her doctor and explain this so as to get a formal diagnosis, the relief that came over her was just wonderful to behold.

Edited by taurean
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On 28/12/2021 at 16:19, Hedgehog said:

Ashipinharbor has a great one there - I knew I had OCD and self-referred to IAPT and was given medication without anyone batting an eyelid, but it would be interesting to know what degree of OCD I have in the great scheme of things and that sort of thing. And whether I'm considered officially diagnosed now simply because I asked for medication.

Thank you 😊 I hope you can be evaluated before too long.

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