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.

 

Damage

‘Mentally ill young woman killed herself hours after NHS staff called her a ‘f**king waste of space’

Sometimes a few words that catch your eye in a newspaper keep coming back to you. This  was from the Mirror a couple of weeks ago. I’m not going to say anything about the details of this particular case, but it set me thinking about the damage that is done to people in the name of care, often by the very people they are told to trust.

Many of you will say, quite rightly, that mental health care has been damaging people for years. I remember a patient of mine who had survived a leucotomy and the half-life he had lived in a long stay ward ever since. I’ve known many who have experienced awful after effects of ECT and medication and I bear responsibility for some of this myself- I was trying to help and sometimes I was successful- but not always. I have given tablets to people, which resulted in them feeling worse than they felt before they started them. But, just like we are now beginning to realize with psychological therapies too, treatments can do good but they can sometimes do harm. But how can verbal abuse by any definition of the word ever be justified as ‘treatment?’

A few days later I read the article about a well know TV presenter and his daughter who is recovering from anorexia. The original is here, (sadly behind a paywall) but it was picked up elsewhere too. He tells how she had felt suicidal after a regime, which

included an expensive regime of forced feeding, no exercise, accompanied lavatory visits to prevent them throwing up the food consumed, and monitored sleep to make sure they didn’t exercise while in bed”.

His daughter resisted and threatened to kill herself.

What I hated most about my job was treating a person against their will. It changed the nature of our relationship, sometimes (but not always) damaging it irreparably. The power inherent in my ability to engage with and forge a therapeutic relationship with a person was, for me, one of the most important and personally satisfying parts of my work. I wanted to work with a person, not against them.

In my years as a consultant I cared for quite a few young and older women with a diagnosis of anorexia and they told me what life was like in the units they had been treated in. Some experienced the style of care they were provided with as ‘punishment’, and for others I have no doubt that is what it was. What I’ve heard recently from people I’ve spoken to who went through some of those strict behavioural regimes (now strongly advised against by NICE) has confirmed that.

So what has this got to do with ‘damage’? Well I think we really do need to consider the long term harm that is inflicted every day when people are told they are ‘dependent’ because a service can only offer short term care, when what we know from attachment theory is that for a person who has never experienced secure, loving relationships, another rejection is the last thing they need. We need to consider how, when young people are sent to beds a very long way from home, this must seem like endless punishment for something they have done wrong but no-one will tell them what it is. We need to think about therapy that ‘does’ to people rather than ‘with’ them (in my experience that doesn’t work either). We need to think how it feels to be asking for help because you feel life is too awful to carry on with, but you are simply told to go away and have a warm bath. When the trauma you went through in childhood or later is simply confirmed by the way in which people treat you now. You are told ‘we have nothing for you,’ or ‘you pose too high a risk for us to manage’ or even ‘You are a f**king waste of space.’

Articles about designing our mental health services utilizing what we know from attachment theory – that the things that have happened to people early in life will affect how they behave and ‘attach’ in adult relationships, have begun to appear. Penelope Campling has talked about the need for ‘intelligent kindness’ from those working in healthcare. Yes, this costs money, and it is much harder to do it when money is short and the system is under such pressure. But some of us have long memories. Attitudes and training of staff were not necessarily so much different when the finances were healthier. Money may help but it wont solve the problem of the how the way care is provided can sometimes do much more harm than good- and the cost may be even greater than doing it differently.

I wonder what happened now to the many young women who ‘resisted’ treatment in the wards where I visited one of my most severely ill patients with anorexia. Who is caring for them now? What long term impact did a rigid unforgiving approach doing things to them rather than with them have on them? I hope that many have recovered but I cannot help wondering if some have been diagnosed with personality disorder for being ‘difficult’ and/or rejected from the system. Resistance in therapy is something to work through with a person, not punish them for.

At the end of the article the TV presenter’s daughter talks about how she was eventually helped to recover, in an NHS day care programme. Her words have stayed with me this month.

‘I had a key nurse who really understood me and saw the Maddy without the demons. She made me realize that inside me was still laughter and joy. I was lucky, but mental-health treatment should not be a lottery. The kind of unit that eventually helped me is all too rare. I feel desperately that things need to change and now is the time for action. Otherwise it will be too late’.

Maybe I am too idealistic. But I’ve resisted being damaged by the system too.

Borderline Traits

A recent reviewer of my memoir about depression and psychiatry has noted that in describing the emotional mess of my early adult years and on-going struggles with low mood, I ‘courageously come close to defining traits of Borderline Personality Disorder’.

I really don’t mind her saying that- indeed part of me is actually surprised that she is the first person to do so. I purposefully included a description of my difficulty in relationships, mood swings and problems in trusting others alongside a description of similar problems in one of my own patients. I wanted to show not only the variety of ways that people can experience what we commonly call ‘depression’, but also how my own problems mirrored those of my patients, such that there was very little distance between us.

By this time, in my early thirties, I had already had quite a long period of psychodynamic therapy but was still having problems:

 I didn’t know how to begin to contain these frightening feelings when they took hold of me. There were times when I felt low in mood and physically exhausted, as though there was a weight bearing down on my chest, which prevented me from moving. On other occasions, it seemed as though anything and everything was possible. At those times I did seem to lose control and retreat from reality. It was then that the suicidal thoughts would return, although by then usually only fleetingly.

Nevertheless, I recognised only too well the persistent state of emotional chaos that Elizabeth Wurtzel described in her book, Prozac Nation. I particularly empathised with her when she talked about wanting a therapist who could help her to learn to be a grown-up and to show her how to live in a world where the phone company didn’t care that you were too depressed to pay the phone bill.   (From The Other Side Of Silence: A psychiatrist’s memoir of depression)

 I’m well aware that there are features of my personality and behaviour that could well be called ‘borderline traits’ and it’s interesting that no one else has mentioned this. Is it because I am a Professor of Psychiatry? Is this the kind of thing one shouldn’t  say to me?  Most people have been incredibly supportive about my honesty, but others- including one or two mental health professional colleagues, have seemed a little embarrassed by my openness. Some will have been on the receiving end of some of my irritability and anger in the past- which is always much worse when my mood is going down. If so, I can only offer my apologies, but might add that in my experience some mental health services can be less than sufficiently understanding of the emotional problems of those whom they employ.

As time goes by my views are changing, despite having written on the topic of Personality Disorder in the BMJ; and this largely because of my anger at the lack of access to appropriate therapy for people who need and deserve help, rather than abuse. I’ve always been aware that people like me who perhaps have ‘difficult’ personalities (I prefer to think there are also times when I can be very warm, creative and caring too) are often dealt a bad deal by mental health services, when they get depressed. Our difficulties with early attachments both make relationships difficult to cope with, and predispose us to longer periods of more severe depression and anxiety as well. I have considerable sympathy with the view put forward by Peter Tyrer that Borderline Personality Disorder is ‘neither borderline nor a personality disorder’. People given this label describe ‘symptoms’ for which they desperately seek help, and don’t demonstrate persistent and inflexible ‘traits’. Their problems are not necessarily lifelong (which I understand personality traits as being), and they can be helped to change over time.

My mood is still unstable at times, but not to degree it was before I had the right kind of therapy to help me comes to terms both my past with how to survive in the world. I also need medication to stop me from plunging down into prolonged despair- with all the associated physical symptoms of anxiety and depression.

People who have problems with their mood don’t fit into neat boxes. As I’ve argued before, diagnoses have their place in terms of research and predicting likely response to treatment, but they should be used alongside a plan that addresses their main presenting life problems, range of symptoms and underlying aetiological factors that may be maintaining the status quo. Some will call this a formulation, but it’s not simply a psychological one- it addresses all three of the key areas- biological, psychological and social.

We need to design the treatment around the person- looking at what they need, not excluding on the basis of a diagnosis that has become for many, a term of abuse. I know many will still want to use the term ‘borderline’ because it can help get access to the right kind of therapy; but we need to acknowledge that the difficulties some of us have with managing certain aspects of everyday life (without, for me, a little drama on occasions) are simply degrees of the extraordinary diversity of humanity- differences that we should learn to celebrate not abjure.

PS- my husband proofreads my blogs- and says life with me has always been a bit of a roller coaster at times- but he wouldn’t swap me for anything.