Karen Morley blogs about her experience of seeking help for her Obsessive-Compulsive Disorder (OCD) and how finding and using Cochrane evidence was a turning point.
Without knowing what it was, I had experienced episodes of Obsessive-Compulsive Disorder (OCD) since I was an adolescent, usually when I was particularly stressed. But it was when I was caring full time for my mother, who had multiple conditions including dementia, that I had an unusually distressing episode of contamination-related OCD. When I took to the internet I was amazed to discover that the obsessive checking, washing and acute, abnormal anxiety were symptoms of an illness with a name – and to recognize other symptoms from my past that I now realised were related to it.
I read everything I could find…
I read everything I could find. I knew I should be careful about my sources, but I read fairly indiscriminately from forums, charity websites and a variety of health websites – some sensible, others less so – and that was a mistake.
I had a vague sense of stigma about mental illness and particularly about medication, so I was interested in talking therapies, especially Cognitive Behavioural Therapy (CBT) with Exposure and Response Prevention (ERP). What could I expect if I tried it? Unfortunately there were some out-of-date posts in which people described nightmare experiences: someone who had allegedly to sit for two hours with his hands in a toilet; a specialist who made his patients ‘contaminate’ everything in their house including their bedsheets; a popular self-help book with an example of an ERP goal of touching the toilet bowl without washing your hands, then all the ‘clean’ areas in your house, and then preparing a meal! The mere thought of this made my anxiety soar.
Seeking help for OCD
Nevertheless, since the OCD and anxiety were becoming increasingly hard to tolerate and making my carer’s role difficult, with the ongoing and patient support of my brother I made a ten minute appointment with my GP. I told her I thought my OCD was situational and that I understood it was usual to try a talking therapy before medication. I don’t recall that we had much discussion about this, though we did talk about respite care, something I knew my mother would hate. The GP gave me the contact details of the local Increasing Access to Psychological Therapies (IAPT) service and told me to refer myself.
It was a difficult telephone conversation that I had to arrange at a time my mother would not overhear. I described my situation, my symptoms, my feelings, my fears of CBT/ERP, I cried and I felt ashamed. The call handler talked to her supervisor and we agreed that I should try counseling first. The waiting list would be shorter at my GP’s surgery, she said; she would write a letter and I should contact them. They told me that it would take at least six months to get an appointment.
Things didn’t improve
Unsurprisingly, things didn’t improve. My Carer Support Worker arranged for some funding for private counselling: I had to find someone from an online approved register. The support of this kind, sympathetic woman was only of limited relevance, largely because my OCD was quite severe. Unfortunately she didn’t challenge my fear of psychological treatment, saying she felt CBT/ERP seemed ‘cruel’ and when I talked about medication, told me an anecdote about her sister who hadn’t tolerated it well. After ten sessions I called it off. I talked again with my brother and with a friend who had taken fluoxetine and was currently on citalopram. At the time there were confusing debates in the press and social media about the effectiveness of these anti-depressants, some of which denied their effectiveness and suggested tackling the perceived causes of depression and anxiety.
I wanted to see the evidence and know how good it was
And then I searched in the Cochrane Library. I knew what I found there would be evidence based, free from vested interest, recent and reliable.
That was what I needed. I wanted to see the evidence and know how good it was. I wanted to escape the confusion, the emotion (my own included), the forum postings and anecdotes.
I found two Cochrane Reviews:
They told me all the SSRIs in the study were known to be more effective than placebo in reducing symptoms in the short term. So they did work. The effect was described as modest but any improvement would be welcome. There might be unpleasant side effects, which was a worry, but the risk of common side effects for fluoxetine was close to placebo.
Psychological treatments derived from Cognitive/Behavioural models were more effective than ‘treatment as usual’. So they worked, too, although a subgroup analysis suggested that people with more severe symptoms might not benefit as much. Antidepressants, not psychological therapies, were usually the first line of treatment. That was a relief: I had somehow come to think I had a moral duty to slog through a psychological therapy and that taking antidepressants was a sign of weakness, but clearly that was nonsense. ERP was collaborative and the treatment was negotiated with the patient – so no-one was going to make me prepare food after touching the toilet if I didn’t want to – and really, who would?
The second review also referred to this one:
I knew I should be wary of this because my eighteenth birthday has long gone. But the study said OCD was similar in children and adults. I was interested in the finding that neither medication nor BT/CBT was superior but there was evidence that medication and BT/CBT combined produced better outcomes than medication alone. It looked as if I was going to have to tackle the Exposure and Response Prevention.
It gave me a feeling of control
I made up my mind to be pro-active, grasp the nettle and discuss treatment with my GP. It gave me a feeling of control I hadn’t had before.
Unable to get a quick appointment with my GP, I asked for the duty doctor to phone me and advise me. I was lucky: psychiatry was his specialism and he was extremely sympathetic, bypassing reception and making me an appointment at his clinic. He asked me what I already knew about OCD and its treatment. ‘I’ve read a couple of Cochrane Reviews,’ I said, casually. I was unprepared for the response. He perked up instantly and looked twice as energetic. It might have been a coincidence – he was an excellent doctor – but for the first time ever I experienced shared decision-making. It was tremendous. I felt like a partner in the consultation. He showed me where I could find information online. We discussed the potential benefits and risks of medication – it was customary to begin with fluoxetine – the dosage, the side effects, what we would do if I couldn’t tolerate the treatment. He turned his computer screen towards me so I could share the information and talked me through things as he looked them up. We discussed my circumstances, too, and what positive steps could be taken to help my mother and me.
Cochrane was a turning point for me
Then he asked me, ‘Do you think you’re depressed?’ I was surprised. I knew I was anxious. But as I went through a list of depressive symptoms, I realised I was. He already thought so, of course, but he didn’t tell me: he asked me. He was listening to me. I felt valued; I could be active and exercise control, which I found particularly encouraging in my situation. This persisted through subsequent appointments when we discussed whether and when to increase the dosage. I made another call to IAPT to ask for CBT/ERP and (after several months) had some therapy via telephone: I felt much braver once the medication had begun to take effect. And yes, the whole process was negotiated and graded.
If I hadn’t taken this route – if I had carried on with counseling – I am sure I would have had to give up my caring role, and I wouldn’t be recovering now. Cochrane was a turning point for me, and I am utterly convinced of the value of evidence based medicine.
But you don’t have to take my word for it. Try it for yourself.
Join in the conversation on Twitter with @CochraneUK or leave a comment for Karen on the blog.
References can be found here.