NICE – Patching the Soul

Not so long ago, I asked my current doctor how he thought I would have been over the last 20 years if I hadn’t stayed on antidepressants continually. He said he thought I would have had at the least a period of in-patient care. When I asked my other half, who has known me for nearly 30 years, and remembers life before and after I had medication his response was simple.

‘You would be dead.’

Since I last somewhat reluctantly shared my views on antidepressant medication a year ago, (before that I’d kept my head below the parapet) there has been a continuing debate about them both on twitter, where I’m quite active, and in the media. My blog was paired with an article written by a fellow psychiatrist who has very different views from my own, who told the Daily Mail she wouldn’t take antidepressants even if she were suicidal. I was pleased our contrasting views went out together. Others have questioned me directly with comments such as ‘I can understand why you take them if they’ve helped you, but why do psychiatrists still prescribe them when they don’t work?’ and a little more personally: ‘well you would say they help because you’re a psychiatrist.’

When I joined twitter, I expected there would be primarily a view that medication was unhelpful and shouldn’t be prescribed. I guess that’s because that’s the message that the media often seems to prefer. There are several eminent mental health professionals who share this view and write about it frequently. Many of them are involved in the Council for Evidence Based Psychiatry and are active on social media. In fact, what I found, as well as people who share their views, was a substantial section of people who were willingly to talk of how medication has helped them. Some of them, like me, have also had psychological therapies, but many others have unfortunately not been able to access them.

NICE (the National Institute for Health and Clinical Excellence) is about to start a new review of the evidence, but its current advice is that antidepressants should not be used in milder depression, should be offered as option in moderate depression, and should be used in addition to psychological therapy in severe depression. That’s why I prescribed them when I was still practicing and most other psychiatrists and GPs, still do. But unfortunately the difficulty in accessing psychological therapy makes it hard in practice to follow the NICE guidance as we should. Many people do not get offered evidence-based treatment. If this happened in cancer it would be a national scandal, yet untreated depression, as we know too well, not only causes great suffering but can also be lethal. There are people who wouldn’t benefit from antidepressants who end up on them unnecessarily and only experience the side effects. There are others who feel there is no other choice open to them without a long wait. In severe depression, treatment which doesn’t also include psychological therapy is incomplete. Medication alone is never the solution.

I’ve stayed on tablets because, as my doctor and husband agree, I don’t think I could have managed to live the life that I’ve been fortunate to have, if at all. It’s been a productive one, but it hasn’t been easy. I’ve still had relapses: I was unwell earlier this year again and am now recovering. I didn’t cope with work stress well at all, although latterly Cognitive Behaviour Therapy helped me to find new ways to manage that; and I know that I still react badly to loss events. I have a family history of mental illness, and one first degree relative was hospitalized. My early life almost certainly contributed to my susceptibility. I’ve written at much greater length about this in my memoir, which will be published this autumn. However I haven’t been as low or completely unable to function as I was prior to taking medication. Psychotherapy helped me earlier in my life, but couldn’t prevent me having more severe episodes in my mid-thirties. Each time I’ve relapsed, my medication has been changed. Sometimes things have been added in. I’m on a combination now once more. I know there will be people who will say my recoveries are due to the placebo effect, which can be very powerful, but last time, as previously, I’ve begun to recover in the time scale predicted by the evidence. This time it was around 3 to 4 weeks. It certainly was not immediate, in fact as sometimes happens, my mood continued to deteriorate after I started the new treatment.

Medication has some truly vile side effects; I’ve experienced many of them and still do. I’ve had withdrawal symptoms too. Some people cannot tolerate them, and others feel much worse. Fluoxetine made me so agitated I had to stop it. In young people that effect can lead to increased self-harm. Medicines can help, but they can also be dangerous too. Its always about balancing the risks and potential benefits.

To suggest I would only say medication was helpful because I’m a psychiatrist devalues my experience as a service user. Perhaps it’s not easy to be seen as both at the same time. But I know others have found medication helpful too so I’m not alone. When writers suggest antidepressants shouldn’t be used, those of us who have benefited find that very scary. We know we are not weak because we need to take them, but sometimes it can feel like others honestly think this of us. All I am asking is that those who don’t want to take them respect the choice of those who do and continue to allow people who may possibly benefit (and have potential problems on them too) to make a fully informed choice. As I said previously I have never forced anyone to take them.

I have been suicidal, and I chose to start taking an antidepressant. At that point I was still sufficiently ambivalent about death to try anything that might help.

I’m still here.

On one of those occasions when I peep around the screen at what my GP is typing I see a diagnosis of ‘anxiety with depression’ at the top of the screen. I’m not sure how I feel about that. I suppose I’ve always thought about my problems as being more to do with depression than anxiety. But regardless of the idiosyncrasies of the recording system that GPs use (for the uninitiated, the Reed codes used in British General Practice don’t much conform to DSM or ICD), I think it’s probably right. In my life, low mood comes and goes, while anxiety has been pretty pervasive at the times when it hasn’t progressed to frank agitation.

This all comes to mind recently because the National Institute for Health and Care Excellence (NICE) just published its quality standard for anxiety disorders. It has information on all the different disorders neatly laid out- with specific pathways for Generalised Anxiety disorder, Panic disorder, Obsessive Compulsive Disorder, Post-traumatic Stress Disorder etc. At the same time there has been the usual and continuing debate about the validity of diagnosis in psychiatry in the twitter sphere, in which I occasionally participate.

My problem with NICE guidance is that there are so many different pathways for the different diagnostic categories of what are called Common Mental Health Disorders– which consist of all the anxiety disorders plus depression. Some mental health professionals disparaging call these ‘minor’ mental health problems and the people who suffer with them the ‘worried well’. I’ve unfortunately heard psychiatric trainees use those terms.

Warning: don’t ever use these terms in my presence, I can’t be responsible for the consequences.

If you add in the other common mental health problems in the community, use of drugs and alcohol which many use to self-medicate for these ‘minor’ problems, you have a complex bundle of guidelines for a large section of the community (around 15%) who mostly get their mental health care from primary care. In common with the main classification systems, NICE treat all these as distinct diagnoses. If only life were so simple.

The problem is that in the real world they all overlap, co-occur and change around over time much in the way that my own symptoms have done since adolescence. ‘Anxiety and depression’ is the commonest mental health problem that GPs see. Mixed in with that may be some phobic symptoms, panic attacks, obsessional symptoms along with other features which suggest post-traumatic stress such as hypervigilance. Add to this the common ‘co-morbidity’ with drugs and alcohol, and the difficulty some people with these problems additionally have in social relationships which equates to some degree of personality difficulty, we have the potential to label a person with multiple diagnoses. At the other extreme we could say, these ‘disorders’ are all part of the same problem. You are suffering from something called ‘life’.

My view is somewhere in the middle, but I struggle with it. I’m a supporter of the need for psychiatric diagnosis and anyone who doubts the need for it should first read Robert Kendell’s classic book The Role of Diagnosis in Psychiatry. But to say that doesn’t mean we’ve got it right, or that the same system is appropriate in all settings. In my work with WHO, I’ve helped towards developing the ICD-11 system for primary care, which is a good deal simpler than anything DSM can ever think up. However what is key for me is that a diagnosis is only a construct,

as Kendell puts it:

‘thoughtful clinicians are aware that diagnostic categories are simply concepts, justified only by whether they provide a useful framework for organising and explaining the complexity of clinical experience in order to provide predictions about outcome and to guide decisions about treatment.’

Clinically I have found the NICE stepped care model useful: severity of symptoms is the key to what intervention is likely to be helpful. But my approach to helping people has been to start with their life, their problems and hopes and concerns and help them to work out goals for how they would like it to be different. To work towards this by both finding out exactly what they are experiencing, and have been through, and then use a range of therapeutic tools from medication, psychological and social interventions in an essentially transdiagnostic way according to what is likely to help, both from the evidence base and their own past experience and preferences. This has been how I’ve supervised step 2 workers in Improving Access to Psychological Therapy (IAPT) in Salford where I worked for several years, to deliver care for people who might have ‘anxiety and depression’ in some kind of admixture, but had complex life problems. I’ve utilised a very simple set of ‘working’ diagnoses which can easily change over time.

I think we do underestimate the importance of anxiety, but it’s not just that we fail to recognise anxiety disorders. Anxiety pervades all of the common mental health problems except for in those people who experience depression without it. There is a significant genetic component which I can easily identify in my own family. Anxious symptoms in the presence of both bipolar and unipolar depression tend to make the outlook worse and suicide more likely.

Recently, since I gave up the day job, I’ve been feeling much less anxious. This was (unhelpfully) commented on by a colleague whom I hadn’t seen for a while who decided to mime how agitated I used to be at times. I have to admit that I was (strangely) usually worse when in his company. However this coming week I have to have more investigations for my physical health and the familiar churning stomach, sweating and tension have returned once more. Hopefully, after tomorrow, I will be able to return to the combination of exercise and mindfulness which I have recently found helpful in managing my ‘anxiety’.

Fingers crossed.