OCD Action

LeedsLass
Member

Hello, I'm new to the Forum and would really appreciate some words of wisdom from anyone with a long-term chronic treatment resistant OCD.

It is my partner who has the condition and has been in and out of treatment since his early 20's. He is now in his late 30's and has recently engaged again with treatment at my request. Thankfully his GP this time recognised quickly that it was way beyond their capabilities to treat him and referred him to a specialist unit.

Having been in the system again for 6months I'm starting to see the issues he had with the medical establishment. I'm struggling to cling to a hope that we have a positive future ahead. I see medical professionals who fail at every level of care. We were desperate and were easily persuaded to try drug regimes again which didn't work in the past and are certainly not working now. Failure to deliver on basic promises and sloppy mistakes that would give Faulty Towers a run for its money.

I'm struggling to find any more excuses for their actions and reasons to see through this latest round of treatment. His trust in them is well and truly wavering. We seem to be following the NHS scriptbook again on OCD treatments which we have tried again and again with absolutely no success. We have reached a point where his compulsions are taking up between 6-8 hours every day, the rest of the time his mind is in such disarray he is unable to perform simple tasks and he is getting next to no sleep.

Does anyone out there have similar experiences? Anyone out there with a positive tale to tell? We could really do with hearing some good news stories right now to keep up the fight.

Tue Dec 13 2011 11:35:46 #
Cuthbert ffoliott
Moderator

Hiya LeedsLass -

welcome to the Ocdaction Forums! And thank you for your candid and precise opening of a thread, that's always a pleasure, even if the subject matter at hand is painful.

'Treatment Resistant OCD' - I find that a difficult label. Somehow it suggests that a patient who got diagnosed thus has been through all possible lines of treatment and has seen every true expert on the globe.

Your post suggests otherwise. And I can very well empathise with the ordeal the both of you have been going through. I myself have seen quite a number of, shall we say, not so competent professionals (some were an insult to the mental health care vocation, to be honest), who shared one prominent characteristic: to say the wrong thing at the worst moment. And I could have had proper medication about a decade earlier than I actually did - I got truckloads of benzodiazepines (sedatives) instead.

So your partner feels like being in an ineffective treadmill, that is the impression I get. Which elicits the following response in me: that must end. He should be taken seriously; and going through forms of therapy that showed no improvement in the past does not speak well of the clinicians at work.

I have become wary of experts who merely seem able to work by the 'cookbook method', who follow a set protocol, unable to vary on a theme or to improvise with some courage. OCD is highly individual, one could say that there are as many types of OCD as there are patients, with some (but not that much) exaggeration.

Now, I gather that the both of you are living in the UK (your nickname is a giveaway... ). I live in Holland and am not conversant with the way the NHS works, nor with their flexibility re: suggesting other forms of treatment, under the supervision of others. Patients have a right to know all available options.

However, I am certain that many UK members here can chime in, with suggestions and positive advice and tips.

From your post, it is obvious that your partner has a severe and very life-impairing form of OCD. If you want to, could you tell me (us) what type of symptoms (the worries and compulsions) he is suffering from? That might help in thinking things through with you. You may always send a personal message, of course.

Wishing you all the best, Cuthbert.

Tue Dec 13 2011 11:53:39 #
Tess
Member

Hi Leedslass
Welcome from me too - I have every sympathy with what you describe, I have had a bellyfull of arrogant, incompetent psychiatrists and uncaring psychiatric nurses and they do terrible damage and get away with it scot free. But there are others who are absolutely brilliant and can literally be lifesavers. You say your partner has been referred to a specialist unit but I am wondering what that actually means, it doesn't sound very specialist to me if he is getting nowhere with the OCD. I would advise you to have a good look round this website, especially the Support and Info section and the NICE guidelines which you will find under Professionals. If funding can be arranged your partner could benefit from treatment at a centre of excellence.

Tue Dec 13 2011 12:36:40 #
LeedsLass
Member

Hello Cuthbert,

I'm reluctant to use the term treatment resistant, but effectively none of the treatments he's been offered have not done anything to reduce his symptoms. In fact, the condition is gradually worsening. My partner has Trich and is body dismorphic, which have progressed to more typical OCD behaviours.

We very much feel on a treadmill of the NHS treatment book. One time or another he has been prescribed the entire back catalogue of SSRI's and several anti-psychotics some with CBT some without. Many have had short lived benefits, but the OCD seems to 'break through' every time. The typical medical response is to up the dose and keep doing this until breaking point is reached. This time we were weary and thankfully he was given the option to stop taking the anti-psychotic. Not something which he has been granted in the past!

We do get the strong impression that they would be unwilling to try alternative treatments until we have tried everything suggested. So we are again on a course of treatment which have previously been tried and have failed. Starting with the SSRI and then the anti-psychotic.... Yes Trich is difficult to treat, but there must be other options.

One aspect of the treatment I find extremely unpalatable is the appointment process. Despite having a chronic condition the onerous is placed heavily on him to arrange appointment. To see his clinical psychiatrist he must arrange an appointment through his psychologist. A man who so far failed to get a prescription in time for an appointment, then failed to drop this off as promised and let my partner going cold turkey for almost a week!, doesn't answer calls or return them! So of course, his appointment are very sporadic for both proffessionals. I won't share my thoughts on the receptionist at the mental health clinic who reprimands him for missing appointments!

Throughout the disappointment in a lack of progress we are being made to feel a sense of gratitude. My partner managed to jump a waiting list to be seen by the Clinical Psychiatrist due to the severity of his condition. A fact which they have made apparent on a number of occasions. There has been a great deal of talk so far about their credentials and how successful they have been in treating people with similar conditions but this has been nothing more than pure rhetoric so far. I find the whole process disheartening and a waste of time. If anything they are adding to our stress. Thanks for sharing your thoughts.

Tue Dec 13 2011 12:44:30 #
LeedsLass
Member

Hi Tess, My partner has been referred to The Leeds Trust's Psychological Therapy Service. I'm sure there are 'good' medical professional out there but my partner has had little experience of them so far. Don't get me wrong, the professionals treating him currently are better by a long way than previous professionals. We are fully aware of what we should expect from mental health care, the realities of insisting such is very different. Like I mentioned, we feel like we must exhaust the treatment available until his team are willing to consider different approaches. Being referred to one of the national centres seems way off at this moment in time though.

Tue Dec 13 2011 13:08:55 #
Cuthbert ffoliott
Moderator

Hi LeedsLass -

to clarify: I certainly did not mean to imply that your partner is not treatment-resistant, after all the both of you have been through, it is clear that he is suffering from very-hard-to-beat forms of OCD. I meant to say: it is not fruitful to let someone like him undergo very samey forms of therapy, that proved ineffective in the past, whilst there still may be types of treatment out there that were not tried out at all. TTM (the official abbreviation for trichotillomania) and BDD are tough types of the disorder.

My idea about the professionals: quite a lot of them don't give the impression that they do keep up with the most recent developments in their line of work. That can be hugely embarrassing. I frequently asked factual questions about the human brain, and what the action of different forms of treatment is - and oftentimes I only got a blank stare, or at best highly evasive answers, that seemed to be based on obsolete textbooks from long ago. One should think that an expert on a very high salary knows the current goings-on in his line of work. Alas, that was not so.

But well, there are true exceptions, people that really are shining examples in the world of the medical/psychiatric sciences. I wish you every possible form of luck in finding such experts; and as always, thanks go out to Tess for her practical advice.

Best, Cuthbert.

Tue Dec 13 2011 13:50:02 #
LeedsLass
Member

Thanks again for your comments Cuthbert.

No clarification necessary, I understood your meaning. It is me who has the reluctance to use the term non-responsive as it has always been my belief that there is a solution out there. We just need to find it. Unfortunately. my faith has been deeply knocked by the medical profession. We are left with no choice but to keep trying as there are no other options.

We are both pretty tired and frayed around the edges due to my partners withdrawal from another ill advised medication. A withdrawal side affect being obsessions. Beggars belief really that he would be prescribed such a medication given his condition really. He has another appointment due, alas we waiting for them to get back in touch, hopefully the next appointment will restore some faith. Thanks again for your insight.

Tue Dec 13 2011 15:27:46 #