NHS – What it's like to have OCD

Near the beginning of the year (it’s now June), I asked my new GP to refer me to the NHS mental health services in Scotland. I had largely given up on NHS mental health services when I lived in England, but given how ill I am, (and how much money I’m spending on private therapy), I thought I would try again now that I live in Scotland. The wait for a mental health assessment ended up being 4 or 5 months after I spoke to the GP, though to be fair to them the original date I was offered was 3 or 4 months from when I spoke to the GP – I had to rearrange due to a work commitment. For any readers not familiar with NHS mental health services, this length of wait is what I’d consider relatively short.

Interestingly, I was referred to a team who work with people with serious/chronic mental illness instead of a team who work with less severe or long-term conditions. This was different to what happened in England in 2016/17 – in that case I was referred to what I believe was the higher of the two intensity levels for CBT (available through IAPT). As I’ve described elsewhere that level of treatment wasn’t appropriate for me, as I had complex, chronic OCD, as well as a lot of previous experience with different CBT-based treatments. The psychiatrist I saw this month in Scotland recognised that, based on my history, the level of psychological support I needed was the level provided by a clinical psychologist (clinical psychologists have a minimum of 3 years of training). Unfortunately the waiting list to see a clinical psychologist is about a year, so she thought my best option would be to continue seeing my private therapist. My private therapist is excellent, but it makes me wonder what other people in my situation who don’t have the luxury of being able to afford private therapy are supposed to do. When it comes to mental illness, those of us with the more serious conditions seem to wait the longest.

Medication options

I got the impression that the psychiatrist knew what she was doing, in part because she acknowledged that I have a lot of knowledge about my own mental health through the way she spoke to me. (In fact, it’s a good job I could remember the various antidepressants I’ve taken over the years, as my NHS records still haven’t got up to Scotland, more than 6 months since I asked for them to be moved.) We discussed what options might be available in terms of changing my medication. One option was adding an antipsychotic to the SSRI (sertraline) that I was already taking. Another was coming off sertraline and moving onto clomipramine. Clomipramine is one of the old class of antidepressants, which were used before the advent of SSRIs. There is some research to suggest it could help with OCD.

In terms of my medication, I started my first antidepressant, fluoxetine (Prozac) when I was 17. At the time I remember feeling that it was quite cool to be taking a medication that wasn’t licenced for under 18s, but unfortunately it didn’t do anything for my OCD. During the following years I moved between SSRIs (and one SNRI, venlafaxine), eventually ending up on sertraline for about 7 years. I felt that sertraline may have backed me up a bit when I had successful CBT in 2012, but other than that I have never noticed a definite benefit of taking it. Despite this I had struggled to come off it on my own (I did try once but my bad thoughts got stronger, so I only managed to get down to 175mg from 200mg – 200mg being the maximum dose that is typically prescribed). For some time I have suspected that this worsening of OCD may have been a placebo effect – i.e. I knew I was reducing the medication so my OCD got worse in response to this knowledge, rather than OCD worsening because of a biochemical change.

My experience has been that GPs are reluctant to do much to alter psychoactive medication. I mentioned clomipramine to a GP earlier this year, as I’d read it could help OCD, and her reaction was “oh, you’d need a psychiatrist for that!”* But because I haven’t seen a psychiatrist since about 2013, I’ve essentially been languishing on a high dose of sertraline that I suspect wasn’t doing anything useful. The psychiatrist I spoke to the other day seemed a bit surprised that no one in the NHS had directed me towards a change in medication, given that I am seriously ill and the medication I am taking hasn’t altered that fact.

The psychiatrist and I decided that I’d try to switch to clomipramine. She recommended coming off sertraline quite fast – faster than I had assumed was ok in terms of side effects – but as I say, I trusted her judgement. I asked her to write down what dates I should reduce the dose by each increment, and also asked what the rationale was for reducing it quickly. She said it was to minimise the amount of time that I am without any therapeutic-level medicine, which makes sense. In the past, when switching between SSRIs, I have always increased the new SSRI at the same time as decreasing the old SSRI, so there hasn’t been a time when I’ve come off completely. However, it isn’t safe to be on sertraline and clomipramine at the same time, so I have to come off sertraline first. This will be the first time in 13 years I haven’t been on a daily SSRI/SNRI.

The psychiatrist also prescribed propranolol (anti-anxiety medicine) and temazepam (sleeping medicine) to help me through the process. I was especially grateful for the temazepam – I’ve always had insomnia but nowadays the more important the event I need to get up for, the more my brain will refuse to sleep. I’ve asked GPs to prescribe temazepam as it helped me in the past but they wouldn’t do so, I think because it’s addictive. As a result I’ve had to do many important things (exams, long drives etc.) on barely any sleep. But that’s a digression!

I’m actually writing this on the last day of sertraline before I’m fully off it, so I know how it’s turned out, but this post has already gone on too long so I’ll let you know how it went in the next post! One last thing to add regarding the psychiatrist appointment – she said she would prescribe the anti anxiety and sleep medication on Wednesday, and on Thursday I got a call from my GP telling me I had a new prescription to collect. I was a little overwhelmed that someone was actively looking after my mental health without me having to fight for it. Counter-intuitively I actually found myself feeling a bit angry – I’ve just coped with severe OCD for so many years without stopping to fully acknowledge that the NHS should be caring for me – that’s its purpose. Now that someone within the NHS is proactively helping me, it’s given me room to feel other emotions in relation to that care. Nevertheless, it is excellent to experience high quality pro-active care, let’s hope it continues!

*Full disclosure (because I have OCD and worry about being 100% accurate) – there’s a chance I said “clozapine” instead of “clomipramine”, in which case the GP’s reaction makes more sense, as from what I can tell clozapine is a particularly heavy duty medication. But having done a quick search online I’m assuming I did say “clomipramine” as that seems to be the medication that has been linked to improvements in OCD.

Cognitive behavioural therapy for OCD

The recommended treatment for OCD is cognitive behavioural therapy (CBT) combined with medication (usually antidepressants). One component of CBT is exposure therapy, which involves repeatedly approaching the thing that makes you anxious (yes, it is a brutal form of therapy). Usually you’ll rate your symptoms in a hierarchy of the least difficult to the most difficult, then you’ll start with exposure to the least difficult, and move up the chart. The theory behind it is that when you first encounter the frightening object/situation, your anxiety will spike, but if you stay with that anxiety then it will gradually come down. With practice, the initial spike of anxiety should be lowered.

This technique works pretty well for things like contamination OCD. For example, touching a toilet seat and not washing your hands – this would initially cause a lot of anxiety, but over time the idea is that this anxiety will decrease. In this example it also allows the individual to collect evidence that they have touched the toilet seat and neither they nor people around them have dropped dead from germs. Exposure alone is not so good for religious themes, in my opinion – I could do the things that OCD tells me will send me to hell, but there’s no way for me to see that this won’t send me to hell.

The good

In 2012 I had successful CBT for religious OCD. It did involve exposure, but we spent months working on cognitive reappraisal before I attempted the exposure. This strategy worked, because although exposure was terrifying, I could fall back on my logical arguments that showed me that OCD was lying. In this case the cognitive reappraisal took the place of the “evidence” that I might have had if I was dealing with a different OCD thought (e.g. evidence that no one died following contamination based OCD exposure). It also helped that my therapist had an in-depth understanding of OCD and was a Christian, which allowed her to easily differentiate between what was OCD and what was typical for other Christians (e.g. praying for forgiveness is typical, but compulsively doing so can be OCD). This was before the NHS “reforms” really started to bite, so I was able to have quite a long period of CBT before it had to end because they were prioritising people with “more severe” conditions such as psychosis, and I wasn’t suicidal. Thankfully we’d done enough work that I was able to continue improving over the following months even though I wasn’t having therapy.

The bad (sort of)

In 2016/17 I had unsuccessful CBT for religious OCD (I had stayed well for about two years after the 2012 CBT, but had got ill again). This was with an IAPT therapist who, as far as I know, wasn’t specialised in treating OCD or religious OCD. She was very focused on exposure and not keen on me using cognitive reappraisal. I told her that beginning with reappraisal had worked for me before, and that I had had many years’ experience with CBT and knew what had and hadn’t worked (I had had a lot of less successful attempts at CBT prior to the successful 2012 attempt I described in the previous paragraph). Unfortunately she was worried that if I focused on reappraisal it would end up being rumination (which is a symptom of OCD). This is a valid concern in general, but it wasn’t appropriate in my case as I had 2 decades of experience with the way my OCD operates and 10 years’ on-and-off experience with CBT for my OCD.

I did have some success with the exposure therapy with her, but I had lost confidence in her because she wasn’t willing to adapt according to my experience, so I think that limited the success I could have had. Having said that, I remember feeling that I was working harder than I had done in 2012 when I’d actually got better, so it wasn’t simply to do with my level of effort. Eventually I had to say something along the lines of: I’m not willing to go further with exposure unless we work on cognitive reappraisal. She accepted, but by this point I had nearly come to the end of the 20 sessions that the NHS allows. I was a bit better at the end of that course of CBT than I had been before it. However, that lasted about 2 weeks(!) Shortly after I finished CBT one of my heroes died by suicide – my OCD reacted by getting the worst it had been in years, and it’s pretty much been stuck there ever since. In order to get higher-level help the waiting list would have been 12 to 14 months. Due to my work I didn’t know where I would be living in 12 months’ time. In addition, in order to access that help I was led to believe that I’d need to go via the person who had given the CBT, and I felt awkward about that. I gave up on trying to get NHS help at that time. However, I’ve approached the NHS for an assessment in the place I live in now, so we’ll see what happens. (As it turned out I did end up moving about 250 miles away for work around the time I would have reached the top of the waiting list in that area).

The ugly

Just to make the titles match up nicely, here’s a brief description of a psychiatrist providing “ugly” CBT, from around 2009 before all of the above happened. At the time one of the things my OCD was focusing on was HIV (either that I had it and would give it to others, or that I would catch it from others – it tended to switch between these two, even though logically that makes no sense). I had a cut on my finger and the psychiatrist wanted me to touch the cut to the arm of the chair I was sitting in. I told her I’d had CBT before and was aware of what level of anxiety-increase is therapeutic, and this was too far, but she insisted. I ended up doing it and then rushing in a panic to Tesco after the therapy appointment to buy plasters to cover up my cut. This undid the good work I’d achieved in leaving the cut uncovered. At one point that psychiatrist even said something to the effect of “I can do it so why can’t you?” Not a good experience of CBT.

Back to the good again!

To end the blog on a more cheerful note, I am currently having a small amount of success using CBT techniques with an OCD specialist – we’ve recently started working on exposure. My next post will talk about the CBT I’m doing right now with this new therapist.

I’m privileged that my parents can help me to pay for this private therapist who has expertise in OCD, though I feel a bit ashamed that I am accessing private mental health care when many people can’t. I partly justify it to myself by considering that my job involves improving other people’s lives, and if I can get well then I can devote more energy to my job, though this justification feels a little hollow. I hope that in the future I can pay for high quality, easily accessible mental healthcare through my taxes instead.

Tag: NHS

Speaking to a psychiatrist and preparing to change medication