Twitter @AshleyFulwood ashley@ocduk.org

What’s in a name?

Two weeks ago I posted a tweet born out of frustration, it was posted shortly after another call from an OCD-UK service-user who had been offered/told they must have a course of EDMR to treat their OCD (in fact as I wrote this today I had yet another call saying the same thing).  EMDR is more commonly used to treat PTSD, although I am not sure if even that is based on evidence, but what I do know is right now there is very little supporting evidence to promote the use of EMDR to treat OCD, and the fact people keep calling to say it didn’t help them suggests the lack of evidence is for a reason.  So faced with the frustration of yet another desperate OCD sufferer having to in all likelihood waste their time and therapy energy on a pointless exercise I made the following frustrated tweet.

 

What started off as a topic about the inappropriate use of EMDR to treat OCD quickly deteriorated into a wider debate, in fact the tweet didn’t generate any long discussion about EDMR at all, so this blog is not actually about the use of EDMR.   In the end the tweet went totally off-topic, mainly about the use of diagnosing and ‘labels’ after one clinical psychologist made a series of (in my opinion) outrageous claims. For example, claims like the fact that most clinical psychologists don’t believe in the flawed diagnostic system or the medical word ‘treat’.  He then went on to say he doesn’t use the flawed diagnostic system, which when I pushed he seemed to suggest that he would not diagnose someone to be suffering with OCD, only ‘obsessions and compulsion problems’ and that that our difficulties aren’t ‘disorders’.   He also went on to people can be too rigid about ‘evidence’ referencing the EMDR/CBT point.   Well of course, you know me, I didn’t hold back in my forthright responses.

For the benefit of doubt, I believe the definition of the word ‘disorder’ is:

A disorder is a set of problems which result in causing difficulty, distress and suffering in a person’s daily life. Disorders are physical or mental conditions that disturb the regular or normal functions of everyday activities and day to day life.

Well OCD causes us difficulty, distress and suffering and disturbs our daily functioning, so I don’t know about you but that certainly sounds like OC ‘Disorder’ to me!

Now I could try and be professional and debunk all of those outrageous claims, but my views are fairly well known on those matters, and I debated it all out on Twitter anyway, but for those reading that with the same level of aghast at the good Dr’s claims, fret not, I don’t believe these to be widely held views by clinical psychologists.

Whilst I exchanged a few rebuttals back and forth with this psychologist it was clear it was in one ear and out the other, he preferring to simply suggest our opinions differ and I should accept that.  Naturally I completely accept that, I have no problem with the Dr having his own opinions and views, but here’s the real nub of this blog and the real eye-opener…. When his opinions and views impact on the needs of people with OCD then should he not be reviewing his own beliefs?

Now based off my personal Twitter ramblings I don’t expect any health professional to necessarily change their view, but what transpired during our little discussion was, completely unsolicited by myself, multiple people with lived experience of OCD all started sharing their experience that for them the ‘label’ of OCD was beneficial. Those who have OCD shared how for a variety of reasons they welcomed the diagnosis of having OCD.  Which of course backs up my own belief and the many years of anecdotal evidence I have from talking to people with OCD over the last 12+ years.

Ignoring my view is one thing, but for any health professional to seemingly flippantly dismiss multiple people with lived experience was a real eye-opener and rather discouraging and concerning if those views are indeed widely held, in fact my view that makes those health professionals person a NVG (not very good) therapist for dismissing those with lived experience so easily, a view that earned me a Twitter block from the good Dr.  In fact it is unforgivable that any health professional that is meant to help us puts their own therapeutic beliefs (in this case about diagnostic ‘labels’) above the needs of the people they’re meant to serve. If people with lived experience of OCD are all saying the same thing, that the diagnosis and ‘label’ of OCD was helpful and beneficial, then surely they should be offering that?

Thankfully through my job I work with some fantastic clinical psychologists, and one of the many reasons I consider them all to be VG (very good) therapists is they seem to listen to what people with lived experience need and want (in addition to helping them recover).

Just to add a little more ‘evidence’ to my theory about the helpfulness of ‘diagnosis’, a few days ago Prof Salkovskis tweeted an image from a conference about IAPT data which seemed to suggest in services where there was a diagnosis (problem descriptor) is identified, treatment outcomes are better.

But my point scoring aside there, don’t get me wrong a label is just a label, we still have to do the hard work and ‘treat’ the OCD and that’s the hard bit!  But at least if we know what we are dealing with we can research it, educate ourselves and work towards recovery through ‘treatment’.