Recovery during a war on depression

 There has never been an easy time for people with severe mental illness (yes, I am calling it that) to get the help they need to recover, but at the present time it seems harder than it has at some other times in my life. The terrible impact of austerity on the provision of mental health care, combined with the redefining of ‘recovery’ as being capable of economic activity has discriminated against those who are disabled. The results have led too many people to take their own lives.

I have experienced episodes of depression throughout my adult life but I acknowledge that I am fortunate to have been able to retire from work, and to embark on what David Karp the sociologist describes as defining depression as a condition that one can get past. When I am well, as I have been for the last few months apart from a blip before Christmas (work related), I find it hard to remember just how awful I felt the last time I was severely ill. But what I’ve been working at over the last couple of years is trying to reclaim recovery for what I always originally understood it to be. Not 50% reduction in my scores on the PHQ-9, or my ability to work, but re(dis)covering the life I’ve glimpsed at times but never managed to reclaim- because I’ve learned how depression cruelly deceives you by whispering that there is nothing left in life for you. It’s so much more than unhappiness. It’s a way of being.

The current discourse about ‘depression’ hasn’t helped. I’ve spoken on social media about how there seems at times to be a war on antidepressants, but actually I think it’s more than that. I think it’s a war on what I, and many others experience as depression. There is a real sense of denial of experience- of the phenomenon (it’s really ‘misery’ and ‘unhappiness’); of the cause (it’s all about power, threat and meaning– the body doesn’t come into it- despite the fact that depression is undoubtedly experienced in the mind and the body); and the treatment (antidepressants don’t work- and anyway they aren’t antidepressant- they just numb and sedate you); and actually work is good for your mental health. Any work (no it isn’t).

Therapy has become aligned in some places with employment services and in Five Years Forward, ‘depression’ is subsumed under Improving Access to Psychological therapies only. The fact that it can have psychotic features in this setting is sometimes missed by those not trained to recognise this.

What I have learned is that first and foremost you need someone who may not agree with your view of the world, but believes you when you say this is how it is, to be there to guide you through. You have to be able to trust them. Many people find that difficult because of what they have been through in life, but so many health professionals seem to fail to understand the role they must play in engaging you.

Getting access to the right treatment for you is essential. I don’t think depression is homogenous. In my experience the part played by physical, psychological and social factors in its aetiology can change between episodes and over a lifetime. And treatment needs to be similarly tailored. When I was younger I benefited from dynamic psychotherapy in helping me to make sense of my difficult early life. Later, CBT helped me to cope with every day living. And I needed medication- and still do.

At the moment we are still in the midst of a debate between those who say there is incontrovertible evidence that antidepressants work- and those who still say that it’s mostly a placebo effect. I believe they work- for many people – but not for others. I guess one of the problems is that if you accept that medication works on depression then there must be some physical process at work in the brain- at least for some people some of the time. As I’ve said above- I think there is- but many will never be willing to consider that.

Some people experience problems with antidepressants- they can make you feel worse- I experienced awful agitation on fluoxetine. You can also have major difficulties withdrawing from them but I don’t think we yet know the true extent of this. Anecdotal evidence or internet surveys with their inherent bias, are not enough. But I believe that people experience this, and I don’t think my profession has, in the past, taken it seriously enough.

And we need better treatment for those who do not respond to antidepressants. I’ve no doubt from my own experience that people with adverse childhood experiences are less likely to respond to medication and need access to sufficient good quality therapy. The kind I had access to, longer term one-to-one, is now rarely accessible without payment. Yet I cannot see how recovery can be possible, with brief interventions only, for people who need time to build up trust because of what has happened to them in early relationships.

Beyond treatment you have to be able to rediscover living again. For me, that’s the part of the process that feels like healing. I’m still learning from the therapy I had in the past. I am rebuilding a life and finding meaning in existence again.

I am very lucky to be able to do this. It would be wonderful if those who espouse those simple absolutes about what depression is and what recovery involves might reflect on what it is like when no-one will listen to how awful you feel, and people just tell you what you should be believing and doing (what they fervently believe themselves or is economically expedient)- when that seems impossible and intolerable to you.

This is not mental health care- and if it were all I had received I would not be recovering from depression now.

Diagnosis, power and suffering

I was very fortunate in my psychotherapists. None of them tried to impose an interpretation on my experiences in a way that didn’t feel right for me. They suggested them from time to time, but they always allowed me the choice to find my own way forward. Two of them didn’t discuss diagnosis at all. However the cognitive therapist, who said that my use of antidepressants was ‘between me and my psychiatrist’ worked from the basis that I had recurrent major depression- what it says at the top of every letter from my psychiatrist to my GP- and the therapy I received was rooted in research evidence.

So it has been interesting, and worrying too, this week to watch people on social media arguing about the Power-Threat-Meaning (PTM) framework just published by the British Psychological Society. Some of its supporters have somewhat grandiosely claimed that it will ultimately replace diagnosis and that this is an ‘all encompassing’ framework. Its authors have denied this although, as widely noted, this is not what it says in the overview, where it states that continuing use of diagnosis is ‘unethical’. Nevertheless those of us, professionals and service users alike, for whom diagnosis has continuing validity, have been concerned and sometimes moved to anger by the conversation.

In my own career, I was particularly influenced by feminist approaches to therapy (especially after a memorable weekend at the Women’s Therapy Centre in the 1980s)- but my longest period of supervision was from a wonderful psychodynamic therapist who skillfully challenged me when my strongly held beliefs interfered with my ability to listen to and empathise with my patient. I can think of people I have seen in the clinic who would have found the PTM framework liberating and potentially empowering, particularly those who had experienced complex trauma in early life and had received the diagnostic label of ‘personality disorder’. But I can also think of others who would have found the idea of their problems being rooted in a response to ‘power’ difficult to understand or use in a way that made sense to them.

I didn’t experience anything like the trauma many of my patients did, but I was shamed and criticized, physically punished and experienced a degree of emotional neglect and absent parenting. The PTM framework doesn’t help me personally to make sense of that, although a therapist with a strong allegiance to it might think differently and want to try and convince me so. Neither does it help me to understand why my brother, alone amongst the members of our family, developed obsessive-compulsive disorder at the tender age of 7. I have spent my life, since my very helpful therapy ended, coming to terms with my grief for the childhood that I did not have- something which Alice Miller wrote about decades ago. I would have found the PTM framework helpful in understanding my battles with power in the NHS, and paradoxically perhaps with managers of psychological therapy services in particular when trying to increase access to therapy. But it still doesn’t explain why I amongst my colleagues was the one who got severely depressed. For that I would still argue a ‘biopsychosocial’ framework is still needed.

For me there are several principles that need to be considered:

  • All mental health professionals need to be able to work flexibly across different models in order to find what is most helpful for this person at this time in their life to understand and overcome this problem. If a therapist has too much allegiance to a particular model this can be detrimental- but I know from what people tell me that they have experienced this. Models may change over time and it may be necessary to draw from several in making sense of a problem and planning treatment.
  • Psychiatrists have power in their ability to diagnose and detain people under the Mental Health Act, but other therapists exercise direct power in the consulting room too. And we all have less power than many might imagine in the face of NHS management. It’s essential we work together effectively in teams alongside patients and service users, not in conflict with each other.
  • Diagnoses are not ‘things’ but concepts. As Robert Kendell, with whom I was a medical student in psychiatry, wrote:

‘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.’

  • The need for diagnosis is not going to disappear whatever the most evangelical adherents of new models might think. Diagnosis is used worldwide, for clinical work, epidemiology and research because it has utility. Psychiatrists are the first to admit that the current systems are problematic. I was involved in the ICD-11 for primary care, and met some of those working on DSM5 firsthand. I’ve seen how unsatisfactory the process can be. But across the world the vast majority of people with mental health problems don’t receive any mental health care at all, and if they do it is not from a highly qualified psychological therapist, but in a primary care setting. In helping doctors in many different countries to recognise the commonly occurring experience we call ‘depression’ (which exists the world over) I’ve tried to do my part to promote better care, and I certainly don’t think that is unethical- indeed quite the opposite.
  • It would be foolish to think that ‘good’ ideas don’t have unintended consequences. The libertarian wing of antipsychiatry described by Peter Sedgwick in Psychopolitics was perfectly in tune with the Thatcherite reduction in spending on mental health care in the 1980s. We must beware that statements that ‘mental illness doesn’t exist’ are not taken up by those seeking to further persecute people who are suffering terribly in the current social and politic climate. Because people are suffering.
  • And people who are suffering have a right to be ‘ill’. Cassell (1998) talks about the importance of understanding the nature of ‘suffering’. Suffering is experienced by persons, not merely by bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity. Suffering can include physical pain but is by no means limited to it. It is crucial that we respond empathically to address that suffering whatever we call it. To call it ‘illness’ does not necessarily suggest a biomedical aetiology. The ‘sick role’ has its benefits and it allows us time out of life and additional support and help in order to recover,  and if everyone’s response is ‘normal’ then why do some suffer so much more than others do?

Because there are undoubtedly those amongst us in our society who are more vulnerable and need our help.

According to those who are at the front line in the fight for social justice for people with mental illness in our community,  diagnoses are required (regardless of what it says in the PTM framework) along with deficit based descriptions which fit mental health problems with every day tasks such as difficulty in eating, bathing and dressing. Follow this link for more guidance. Med_Evidence_WCP_Guidance_final_14dec

 

We have plenty to do together to work for better mental health care. The PTM framework will be enormously helpful for some, but not for others.

Please lets not not forget how we all came to be here- to try and work together to improve the lives of service users and patients.