Getting rid of mental health diagnosis

[gingerbreadgirl]

There seems to be somewhat of a discussion going on between clinical psychologists at the moment (which I am reading about on twitter) about whether diagnosis is helpful in mental illness, or whether individuals should be treated on a case-by-case basis and not given a diagnosis, but rather a 'formulation' of their specific life experiences, etc.  

My knowledge is tiny compared to someone who has years of training and experience, but... I really feel that at least in the case of OCD it would be very dangerous to do away with the concept of diagnosis.  OCD is a very specific condition with a very specific type of treatment, and knowledge is lacking enough as it is without doing away with this and just relying on the psychologist understanding the correct way to treat. 

The argument against diagnosis seems to be that having a mental health diagnosis on your records can lead to being labelled and stigmatised by society.  But surely we should fight the stigma, not the diagnosis?

Also - I think the diagnosis is important for many people to communicate the seriousness of the problem.  If you say to someone "I have OCD, it is a recognised condition, you can read more about it here" then people are more likely to understand that than "i have these weird fears, I don't know why".  It's just asking for a response of "pull yourself together".  

I personally feel that we have to fight a lot of ignorance in society and we could do without fighting it from clinical psychologists too!

Happy to be open to debate though  

[Binxy]

Completely agree.  For me a diagnosis was important- I didn't accept it at first (or the second time, or third or...) but when I finally made the leap of faith and labelled myself as an OCDer this for me was the start of my recovery.

[Gemma7]

I've seen some of the debate too. It's a strange one because i don't understand why you can't have both as well as allowing personal choice (for the sufferer). 

Diagnosis is helpful for accessing correct therapy and for finding a community that have experienced similar problems. Stigma comes from a generalised ignorance about mental health issues and a lack of any real understanding about how they come about in my opinion. 

[gingerbreadgirl]

I agree,  Binxy. I have never been diagnosed with OCD and part of me really wishes I had been - I have been diagnosed with "mixed anxiety and depression" (way off the mark I feel).  I have learned a huge amount since then and personally I have no doubt that OCD is what I have.  However even though I am sure of that, the lack of professional diagnosis does cause me doubts and concerns from time to time.  I have never told work I have OCD (I've told them I have anxiety),  and I've never told my family either, and part of that is because they might not take it seriously (as no diagnosis).

So the thought of them taking that away entirely from people fills me with dread.  It is just begging for a response of "oh we all get anxious, here's what you should do..."

[Binxy]

26 minutes ago, gingerbreadgirl said:

I have been diagnosed with "mixed anxiety and depression"

I was diagnosed with GAD and OCD.  I'm a worrier, always have been- that's where the first bit comes from, but I have been "taught" to see the obsessions and compulsions in a lot of my thinking.  Thus the OCD diagnosis. 

28 minutes ago, gingerbreadgirl said:

the lack of professional diagnosis does cause me doubts and concerns from time to time.  I

This might not go away completely even if you do get a diagnosis.  I still doubt it some days!

29 minutes ago, gingerbreadgirl said:

I have never told work I have OCD (I've told them I have anxiety),  and I've never told my family either

I avoided telling work and family for years... until I got well and truly broken in 2014 and ended up in hospital.

I "self diagnosed" from this very website back in 2011.  I was very desperate at the time because I had convinced myself that I had done something abhorrent to my baby niece ten years previous.  I recognised so many of the obsessions that I had that other people had too on the forum.  I didn't get a proper diagnosis until 2014 (it needs to be someone who knows OCD well to give the diagnosis- there are a lot of quacks that don't qualify in my book).

32 minutes ago, gingerbreadgirl said:

So the thought of them taking that away entirely from people fills me with dread.  It is just begging for a response of "oh we all get anxious, here's what you should do..."

I agree.  This is a bit scary. 

[Ashley]

1 hour ago, gingerbreadgirl said:

There seems to be somewhat of a discussion going on between clinical psychologists at the moment (which I am reading about on twitter) about whether diagnosis is helpful in mental illness, or whether individuals should be treated on a case-by-case basis and not given a diagnosis, but rather a 'formulation' of their specific life experiences, etc.  

Hi GBG,

It's partly why I have left Twitter for a bit, it's become a very negative place in general, but this debate between health professionals is becoming undignifying and divisive at best bordering on distasteful and leaning towards vulgar sometimes.  Whilst I am more than capable of batting through and bowling a few bouncers into this debate, in general for my own sanity I needed a Twitter break. 

I have found some of the views from health professionals contemptible putting personal and professional beliefs above the multiple views of those with a disorder, in this case OCD.

 

1 hour ago, gingerbreadgirl said:

My knowledge is tiny compared to someone who has years of training and experience, but... I really feel that at least in the case of OCD it would be very dangerous to do away with the concept of diagnosis.  OCD is a very specific condition with a very specific type of treatment, and knowledge is lacking enough as it is without doing away with this and just relying on the psychologist understanding the correct way to treat. 

I agree with this.

Of all those with OCD commenting on this debate, it was 100% unanimous in that they all welcomed the diagnosis's and label of OC DISORDER, even if not always wanted.  There is so much benefit to understanding what we have is a medical condition that can be helped and treated.  It's a unique condition, with some unique problems but listing all those problems can take forever, so giving it a label is much easier and simplistic to help people understand. 

For those with mental health problems, it should be very much an individual choice if they want to use a specific label or not, and I see that some with other mental health problems are less happy about using their various labels, that is fine, that's an individual choice but for those that want to use the label OCD that should be respected.

I know some don't like the OCD label, and that's fine, I respect their right not to use it, but I hope the labels been helpful for those people to find the right help and support.

 

1 hour ago, gingerbreadgirl said:

The argument against diagnosis seems to be that having a mental health diagnosis on your records can lead to being labelled and stigmatised by society.  But surely we should fight the stigma, not the diagnosis?

Exactly right. 

Incidentally, it's something of a clique bunch that are going in this direction, and not a coincidence that they are usually the anti-CBT brigade. 

 

1 hour ago, gingerbreadgirl said:

Happy to be open to debate though

The problem is that many of those (not all), but those leading this campaign seem unwilling to engage in debate (I saw Paul having to argue to be invited on to a panel to debate) and even if they are happy to debate, some are unwilling to listen to 'service users' that want to keep the label. 

I retweeted something a few weeks back from a psychologist (I think) who had blogged about his own mental health diagnosis. It was an absolutely amazingly brave thing to do, that psychologist deserved praise and support from within his profession. But the first thing this clique did was pull him up on social media for using the label he had been given and had chosen to use.  I find that deplorable. 

GBG, I would like to explore this subject in the magazine to invite feedback, we started in the last two mags but I would like to write an article on the debate and perhaps share the thoughts of those with OCD to get the ball rolling. Do you fancy writing something for us?  it could be just using your post to get the article rolling?   Then selected comments from other users perhaps?

[gingerbreadgirl]

Hi Ashley,

I'm happy to write something putting my opinion across, but I'm not sure I'm knowledgeable enough to really do the subject justice! I don't really know the ins and outs of the argument of diagnosis vs forumation etc.  All I know is my gut feeling which is diagnosis for OCD sufferers is really important (or at least it is to some sufferers) which I think should be respected.

I agree there seems to be an element of "we know better than you" which is reminiscent of doctors from twenty years ago!

[Legend]

As you maybe aware , I have been heavily involved with the debate, and I feel the reason of dropping the diagnosis / label has come from the / onus on people In the past who were and have been poorly treated because of being diagnosed with personality disorder/and borderline personality disorders, and for some unknown reason , the clique of critics of diagnosis seem to think it’s a good to stop using diagnosis full stop ! And Ashley says the same critics who appear also to be anti cbt 

I did a small survey on Twitter, with the heading did you find diagnosis of ocd beneficial or not . 86 people replied and 97% found it beneficial 

When I was poorly , and at rock bottom I wanted to no what was wrong , and being told what was wrong (ocd) and that I wasn’t a harm to anyone, was the foundation to recovery.

Personally I don’t think you are labelling someone with ocd with Diagnosis of, I feel the label part is down to the personality disorder that made those with that diagnosis, open to further plop treatment, and perhaps seen as untreatable.

I think those that are critical of diagnosis in ocd have an agenda , that has no place in the helping of people access treatment, seek support etc. 

 

Legend .

[Ashley]

1 hour ago, gingerbreadgirl said:

I'm not sure I'm knowledgeable enough to really do the subject justice

eer you have OCD, which makes you eminently more knowledgeable than most of those debating!    Just write what your opinion is on the debate, and we can work on the opening to the article together if you like?

[gingerbreadgirl]

OK I will give it a go do you hav any guidelines or anything, like what sort of length or style etc?

[Ashley]

27 minutes ago, gingerbreadgirl said:

OK I will give it a go do you hav any guidelines or anything, like what sort of length or style etc?

Not really, I think lets write what we feel is relevant and then we can review length after.  If too large article we can run in full on the website, with a summarised version in the magazine. 

[PolarBear]

Do it gb! You started the ball rolling so carry through.

I was one who voted for diagnosis in Legend's Twitter poll.

[Binxy]

Go for it Ginger.  This may well be a good outlet for you at the mo.

[Raffles]

I've been following the back-and-forth on Twitter too. I always thought diagnoses were shorthand for clusters of symptoms that frequently occur together, to make research and treatment easier. As in, "People with groups of symptoms we describe as OCD statistically respond best to CBT and ERP treatment in clinical trials. On this basis we have constructed these guidelines and recommendations for people presenting with the same symptoms." 

Individuals are more complex than this, of course, and can experience other symptoms/behaviours. To me, a good therapist, given enough time (sadly lacking), keeps that diagnosis in mind but customises the recommended, evidence-based therapy to each patient's experience. We need to tackle stigma around diagnosis because that's all it really needs to be: a useful shorthand to start structuring treatment.

If limited to personality disorders – reading around BPD in particular is a diagnosis misused by clinicians to wash their hands of "difficult" patients, and a lot of abuse and stigma stems from it – the PTM Framework could be helpful. The difficulty is certain factions are trying to apply it across disorders, and the structural overhaul to guidelines and benefits is likely to be prohibitively expensive. It's alarming this could be considered at a time when provisions are as thinly-stretched and struggling as they are. 

[Ashley]

Very good points Raffles

I saw a little more of this 'debate' on Twitter this morning as I was on the train in to work, and I got a little irritated in some of it and how our views really don't seem to be heard, so I tweeted from the charity account, some very interesting and insightful points being made by our followers.

[Raffles]

Thanks Ashley. I think I'll check it out! It's surprising how patronising some of the comments are towards people with conditions critiquing the framework. 

[Ashley]

I am not surprised about this, but since my tweet earlier, there's been so many replies and every single one is saying they welcomed the diagnosis (and some adding that doesn't mean it defines them). 

[Gemma7]

I was glad to have a diagnosis, but there are negatives to it lets not forget. Like people thinking that OCD is incurable, part of your personality, that there is something wrong with your brain etc. 

[Ashley]

Agreed, there are problems too, but hopefully a label helps people understand it's not them going mad, that they're not alone and may lead to places like this where helpful and supportive forums users can guide and support a person.

[Gemma7]

I'm glad it's not just me that thinks diagnoses have there problems, i was beginning to think i was alone in that! 

[Ashley]

They do, but the benefits generally outweigh the negatives I feel.

I think the main one is for those with unwanted intrusive thoughts and images, being told its the OCD and not you becoming something sinister is one of the best examples of where an OCD label can help.

[PolarBear]

What you are describing as problems with a diagnosis are actually misconceptions that need to be addressed. And they can be if you have the right teacher or visit the right website.

It's funny thst this debate only seems to be around mental health problems. For decades sufferers have wanted mental health problems treated just like physical problems but now there is a group of people who want to treat mental health differently. After all, no one is advicating we get rid of the diagnosis of cancer.

[Gemma7]

3 minutes ago, Ashley said:

I think the main one is for those with unwanted intrusive thoughts and images, being told its the OCD and not you becoming something sinister is one of the best examples of where an OCD label can help.

True but this could be achieved with general mental health education society wide not for sufferers now but for sufferers in the future. Intrusive thoughts are common for all people this is widely unknown in the general public. 

[Ashley]

1 minute ago, Gemma7 said:

Intrusive thoughts are common for all people this is widely unknown in the general public. 

Yes, but we are talking about OCD, and intrusive thoughts in the OCD context can be very different in terms of frequency and meaning. 

[Gemma7]

1 minute ago, Ashley said:

Yes, but we are talking about OCD, and intrusive thoughts in the OCD context can be very different in terms of frequency and meaning. 

That's true but the relief people get from having a diagnosis would be lesser if for instance they were already aware that all people get intrusive thoughts and that was widely accepted.