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.

 

The diagnosis

It is only 6 words.

‘I think you have polycystic kidneys.’

But there is nothing simple about being given a diagnosis. It means interaction with a new world of people and initiation into a different way of life – the doctors, nurses, therapists, surgeons, technicians, and the places you will find them in- the new hospital clinic you haven’t been to before, the x ray department, the laboratory, each with their own particular perspective on your illness and what is going to be best for you- body and/or mind. It is about learning how to speak in a different language. It is also about your own memories, ideas, worries and expectations of what that diagnosis means to you, and all the other things you will have to do in your life, or have done to you, that you have never experienced before and hoped that you never would have to. And all those things that you hoped to be able to do, but now perhaps never will.

I don’t have much memory now of how kidneys should work. Blood flows in and urine flows out- and the kidney works some kind of magic in between. The first patient whom I cared for long enough in my first job as a doctor to get to know as a person, and who I then saw die, had kidney disease. It was very different from my own. He had diabetes and came into hospital when a viral illness sent his damaged kidneys into failure. I listened in the ward office to the renal team as they decided against taking him on for dialysis, which unlike now was very unusual for patients with diabetes as they ‘did badly’. I watched from the door of the single room where he spent his last few days as he said goodbye to his wife and children. He was a young man- no more than 40. And I felt even more helpless as his wife screamed out in agony at the sheer unfairness of his sudden, and so unexpected passing. A phrase, ‘The Renal People’ uttered by the surgeon, a very kind and well-meaning man, evoked a particular and unwelcome memory for me.

Despite feeling fitter than I had for years, it felt as though my body had let me down. Something was happening inside me over which I had no right of determination. For the first few days after the surgeon delivered his verdict I felt numb. Then, like many people, but especially doctors, I spent hours on-line researching the subject until the rational part of my brain was exhausted. I collapsed onto the easy chair in my study and burst into tears. I sobbed until my throat was hoarse, my chest was tight and my shirt was wet with tears. John put his arms around me and held me. I knew I was beginning to grieve for the loss of my health, and the hopes I had for the future. And it all seemed so terribly unfair. Just `at the point that I had given up the work that was gradually killing me, and was prepared to restart that life I had postposed for so long, I had to find out that something else was going to do that anyway. The sociologist Mike Bury talks about the biographical disruption of chronic illness- how it necessitates a fundamental re-thinking of one’s biography and self-concept. The timeline of my life has been fractured and it is still physically painful.

Now I know that I have a genetic disorder of the kidneys that I’ve had for many years, but didn’t know about before, and which is going to get worse as I get older, at a rate as yet undetermined. There is a possibility I will eventually need to have dialysis. My kidneys and liver contain within them cysts, which have been slowly growing in size, squashing the healthy tissue into destruction since my childhood, or that is what the Professor of Nephrology had told me.

‘It is something you have always had. It isn’t new. Its autosomal dominant so you have a 50% chance of developing it if one of your parents carries the gene, but in about 10% of cases it’s a new mutation.’ He couldn’t understand why investigations carried out in my early thirties hadn’t revealed the problem then. As the years passed the timer on my kidneys had been ticking away silently inside me and I had been completely unaware. It had been programmed into me at birth and was probably running quite slowly otherwise it would have been noticed much sooner. But I suspected that the other problems that my family genes had contributed to- a constant sense of anxiety and periods of severe depression, would have been even harder to bear if I had known. Neither of my parents had been diagnosed with kidney disease as far as I knew before they died, but my maternal grandmother had collapsed in the street and died suddenly in her thirties. I’ve always believed that must have been due a brain hemorrhage, and brain aneurysms are a possible complication of this disease.

It may be impossible to ‘recover’, in terms of restitution to my former state of ‘health’, in mind or body and I have no idea what will happen in the future- other than I hope I can manage my mood more effectively than in the past, and that it is possible I may need renal dialysis at some point. I can no longer make the excuse that I am still waiting for the future to arrive before I have to reclaim the life I always wanted to live if I just had the time. The ‘future’ is now and I will have to discover how I can make the most of it.

My latest book, a memoir of psychiatry and depression, The Other Side if Silence is available now

 

 

 

A diagnosis of anxiety

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.