How support became a dirty word

When did the term ‘support’ become a dirty word? Has it slowly become tarnished or only recently tossed into the dustbin of healthcare?

When I was talking with a group of mental health workers a couple of weeks ago, we got on to discussing their concerns about the tremendous pressure there is to discharge people back to their general practitioner. Many of the service users they work with have ongoing severe mental health problems in need of considerable support. However, unless they are apparently still in receipt of identifiable ‘treatment’ they can no longer be under care from specialist services. Presumably treatment here refers mainly to a psychological therapy of some sort. I’ve also heard from people on twitter that even when medication has just been changed, they can still get sent straight back to their GP – before their psychiatrist can ‘support’ them through the first couple of weeks change in meds – something I always thought was important given the potential for concerns about side effects and other risks. Indeed, one person tweeted that their psychiatrist had been threatened with disciplinary action for failing to discharge patients. Who by, I find myself wondering? – but I know actually- those within the system who have no clinical responsibility, and no formal professional accountability other than financial. Yet this is a question about quality of care and safety, rather than cost.

But what happened to support itself as a therapeutic intervention in our health care system? Do we, as a society no longer value it? Of course we do. A support is something that helps to bear the weight- to give assistance- material or emotional. We still have people who are called ‘support workers’ but I expect they too are expected to deliver some kind of ‘intervention’. Everyone else certainly is. Don’t get me wrong- in the past I witnessed people just getting a cup of tea and a chat when they might have actually benefited from formal psychological therapy. I used to ‘support’ people to a point where they might be able to engage with it- be willing to actually go and talk to a therapist. And when they came back too- and tried to get on with everyday life. I guess that would be called ‘promoting recovery’ now- except you have to see the recovery team to get it, and it’s time limited. For many of my patients it was ‘supportive psychotherapy’ that kept them alive: engaging, listening, empathising, encouraging, promoting self-esteem, kindness, always providing hope. And caring. I suspect I would be ‘strongly discouraged’ from continuing to do that now unless I could provide a justification other than ‘to support’- even in taking medication.

It seems that what is done to us now as patients must be measurable, time-limited and provided in a transactional, instrumental manner that subtracts what is human from the equation. Especially the building of those life-saving relational bonds with someone you see regularly and who knows you. A person who recognises when you’re not your usual self. A person who phones when you don’t turn up when expected and calls round to check you are okay. And this denigration of support isn’t only happening in mental health care, but in physical health care too. As people develop more and chronic illnesses, services are under increasing pressure to discharge.

It’s hard to put a value on ‘support’ but have we really though through the consequences of devaluing it? Many of us value our independence, even as we grow older (and frailer), but self-management has its limits. Instead we have a creeping culture of a peculiar pseudopsychological theory of uncertain origin that denigrates anything potentially leading to ‘dependence’ and calls workers who demonstrate kindness and concern ‘rescuers’. Throughout our lives we are all dependent on others with whom we develop those powerful bonds that keep us going. They support us and keep us alive. Many of us take that for granted. Don’t allow them to throw away the support needed by many people to survive.

And please, let’s not just take it lying down.

Defeating Descartes

Two weeks ago, I stopped taking the antihypertensive drug, amlodipine, which I had been prescribed 3 months earlier for high blood pressure associated with my polycystic kidney disease. Before then, my mood had reached the point where I had once again begun to feel that the world would be better off without me. I was also exhausted, aching all over and unable to walk any distance without pain in my legs. The crunch point of realisation something was really wrong came when, on arrival in Amsterdam, one of my favourite cities in the world, there was no sense of joy or excitement at being there. All I wanted to do was sit down, drink tea and look forward to getting home.

I wouldn’t have connected the plunge in my mood with taking the medication if I hadn’t known that certain antihypertensives can cause depression. I take my pills reluctantly. I was already on one for my high blood pressure and wasn’t keen to take another. Maybe it’s my way of denying the reality of chronic physical illness. My consultant, seeing my raised bp last time we met in the clinic, fixed me with his eye and assured me, ‘most of my patients are on 2 drugs.’ I wasn’t clear whether it was a reassurance or a challenge, but I gave in – and subsequent readings improved considerably. My ankles stayed the same diameter, (‘when they put me on that I had swelling up to my knees,’ a friend had informed me over dinner in Edinburgh), and I was also curiously calmer- I had stopped worrying about my health.

I first noticed a change a few weeks later. My joints were becoming stiff as though the arthritis promised to me by my family genes had finally caught up with me. Then, while on holiday the anxiety resurfaced again- with some force. I began to worry about everyday disappointments and focus on them -blaming them for how I was feeling.  Except that’s what they were. Not major life events but ripples on the surface of an otherwise much more settled flow of life than I’ve had for many years. Nothing at all in comparison with what so many people have to deal with daily- or what I’ve coped with and overcome before. I told myself I was simply jet-lagged. Only as time passed the exhaustion got worse, not better.

I have a history of recurrent depression but for the last year I’ve been ‘in remission’. There are several reasons why that might be- but one possibility is that the urinary infection which, in retrospect, had probably been there for a couple of years despite negative investigations, finally resolved after a rather grand finale performance- with copious bleeding, pain and then admission to hospital with sepsis. Since the treatment with the heavy-duty antibiotics required to save my life, those pesky unexplained symptoms have disappeared completely. My psychiatrist, who is an academic researcher in the field, thinks that the chronic inflammation caused by an infection may have had a significant impact on my mood- which was extremely fragile over the same time span, prompting some subsequent jokes about gentamicin as a cure for depression.  Can bodily inflammation lead to changes in the mind? Some think so- others vehemently reject a link between mind and body in mental ill health.

Earlier this year, when my essay In Defence of the Biopsychosocial Model  was published it was attacked from both sides- by the critical psychiatrists who reject the role of biology in mental illness (and suggested I had misunderstood what Engel’s model was actually about); and also by those writing in defence of people with a diagnosis of ME who reject psychosocial explanations of their illness. However, given my recent experience with the psychological side effects of medication for my blood pressure I am more than ever convinced of the importance of not separating mind and body. Was this not a ‘real’ mental experience because it was caused by blood pressure medication? It felt exactly like every other time I’ve been down, except I was also much more physically incapacitated too. But then, when I get depressed it is always an intensely bodily experience- the heaviness of limb, the feeling that there is a weight pressing down on my chest, the lack of energy and drive. Those familiar demons were all there- along with the guilt and self-reproach in spades for allowing ‘life’ to get me down again as my mind found endless problems about which to ruminate.

Except these problems were almost certainly not the cause of the depression. They were simply the foci my mind coalesced around in an attempt to make some sense of my mood.  The worries have receded into the background now I’ve stopped the amlodipine. The aches and pains are disappearing gradually too. I can go for a long walk again.

But I do wonder how many other people are waiting for therapy- or working through it without benefit- while struggling along with the same kind of symptoms I experienced. Many therapists don’t pay much attention to physical health problems and medication because they are trained, and work, in our Cartesian systems where mind and body are treated separately and retain their familiar disconnection. What potentially treatable physical causes for their problems are being missed aside from the common ones most professionals know about, such as thyroid disease?

Meanwhile we all remain at risk of falling through the ever present gaps, between services and professional ideologies, as we try to retain our health and sense of wellbeing.

Product Placement: Out of Sight and Out of Mind

This is such a powerful piece of writing and says so much.
Trigger warning.

The Diagnosis of Exclusion

This is jointly written by Keir Harding @keirwales and Hollie @Hoppypelican.  Please stay safe reading this.  It contains descriptions of self harm and restraint and allusions to abuse.

It’s taken a long time for us to put it together but we think its something that needs to be heard.

A story…

She places her hands against the cold window and peers through the grill into the twilit garden; the grill that traps her, obscures her view of the outside world and reinforces her cage.  The reds and pinks of dusk bleed across the manicured lawn; the progression of day to night being the only consistency amidst the chaos she lives within. Along the corridor someone is still screaming.  She knows the staff have tired of it because she hears the shouting and clattering of the care starting.

She remembers arriving; the initial feelings of safety, respite and containment that disintegrated…

View original post 2,194 more words

The keeping of stories

When I was a doctor I was a keeper of stories- and I don’t mean just the person who entered those stories into casenotes. As Danielle Ofri says in her memoir of life at Bellevue Hospital in New York, Singular IntimaciesI often felt the weight of balancing so many patients’ stories within me. I remembered what people told me, the expressions on their faces, their pain and anguish, the events of their lives, and the impact that what had happened to them not only had on the person telling their story to me- but how it affected me- the listener.

From the general practitioners, psychologists and psychiatrists who have seen me through episodes of depression to the nephrologist I visit every year for my kidney disease there are a small number of people who know my story of ill health. I used to be able to count the ones who have been important on one hand but as I grow older it now takes two. There aren’t very many because most saw me for many years, through periods when I was very unwell, and much less frequently, in times of good health too. We knew each other. It was such a relief that I didn’t have to repeat my story each time we met. When my mood deteriorated, they remembered how I could be, what I had achieved in my life, and helped me to distinguish the person that I might really become from the one beaten down by the overwhelming impact of depression and anxiety. Over time, I was able to develop sufficient trust in each one to allow them to help me. I believed that they cared what happened to me, and the hope that they held for me each time I became unwell acted as a lantern to light the way on the road to recovery. They have been the keepers of my story.

Seeing the same health professional over time, something we call relational continuity of care, really matters. It is particularly important in primary care, where person-focused rather than disease focused care is far preferable for people with multimorbidity- older people like me with sometimes several different conditions. A recent systematic review led by Professor Sir Denis Pereira Gray, a veteran advocate of continuity of care who consulted in the same house as both his father and grandfather, has shown that it saves lives. Being able to see the same doctor really is a matter of life and death. Yet our policymakers have prioritised fast access over continuity so that it can now be increasingly difficult to see the same GP.

Continuity is also crucial in mental health care. When, at the recent Royal College of Psychiatrists International Congress, a mother told an audience the story of how her teenaged son had seen nine difference consultant psychiatrists in one year, many of us were shocked. How could such fragmentation of care have been allowed to come about in our mental health care system? How could the impact be anything less than highly detrimental? Yet it is clear from the reaction of so many people with whom I’ve discussed this in the last month that this story is so far from unusual. Nevertheless there is evidence that continuity of care is associated with better quality of life for people with severe mental illness. Another more recent study that compared mental health care systems based on continuity or specialisation pointed towards reduced length and number of hospitalisations, and faster or more flexible transitions between services in continuity systems. And both patients and staff (unsurprisingly) preferred continuity models.

This is not however to say that the old ‘sectorised’ model of the past, with one consultant overseeing a community, was without problems. Sectors were often too large, with one consultant perpetually overstretched, and there was limited opportunity for choice when the relationship between doctor and patient broke down, or a sector consultant had particularly strong views about certain diagnoses, or treatments. When I arrived to take up my first consultant post in general adult psychiatry, I found to my horror a ‘blacklist’ of patients my predecessor had refused to see or admit to his unit- most of whom I eventually managed to engage and help. I saw many for second opinions from within and even outside our organisation. The NHS was more flexible then and extensive paperwork was not required. Later, working side by side with a colleague across one sector, we were able to provide our population with more choice, and between us a range of different expertise and interests.

Now service users and patients are shuttled from one functional team to another – from community to crisis team, to in-patients, to recovery, back to their GP and then back again around the circle- each with a different consultant. Add to that the problems with staff retention in both mental health and primary care and the savage cuts to services and I fear we may have a generation of doctors who no longer know both the pleasure, and responsibility, of the keeping of stories. Instead they have become, like those who saw me in hospital last year, the anonymous faces who struggle to piece enough information together to get through the day safely, relying even more on patients, if they are able, to fill in the necessary gaps. We seem to have forgotten that it is the power of the relationships that are forged between us – professionals and patients- that matter, not the number of ‘contacts’ we have notched up; and these sustain not only our quality of life- but life itself. For me as a doctor it was the power of those stories and my ability over time to make a difference in how they ended that fulfilled me, and sometimes prevented me from moving on even when other things in a job were getting difficult. How much is lack of continuity, and the increasing sense of anomie accompanying it, not only caused by failure to retain staff, but fuelling it?

And, most of all, we patients feel increasingly unsafe  too.

Anonymous, anxious and wary as we wonder: Who is the keeper of my story 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.

 

The invisible patients

I had been essentially bed bound for 5 days, catheterized, cannulated and weak as a new born, in a ward for the elderly which I will call ‘ward A’, when the first senior nurse I had spied came into the 4 bedded room in which I lay. She chatted and giggled for ten minutes or so with the nursing assistants, who all stopped what they had been doing. I couldn’t hear much of what was said as I wasn’t wearing my hearing aid, but I picked up the gist that it wasn’t work related. Then, picking up her paperwork, and after a cursory glance through each of us patients as though we were invisible, the senior nurse departed again.

Five days earlier the highly professional doctors and nurses in the Emergency Department and medical assessment unit saved my life. I was diagnosed with sepsis secondary to pyelonephritis, given iv fluids and antibiotics and admitted initially to the medical assessment unit. There I was cared for by a pleasant final year nursing student, who told me her name and explained that I would be transferred forthwith to another ward for on-going care. Sadly, that was when things took a downhill turn.

If I hadn’t had anything to compare it with (see below), I might have thought that the care I received in ward A was the best on offer. On arrival I was left in a metal wheelchair in a corridor for 2 hours, with nowhere to rest my head other than a table-top and the body of my husband standing next to me. I’m 61 now, but I was by far the youngest in ward A, and I wondered if that played a part in some of the nurses apparent perception that I didn’t need any help- even though I was acutely ill, apparently rambling at times, and receiving intravenous antibiotics for the antibiotic resistant e-coli bouncing around my circulatory system that I had acquired in another hospital after a routine cystoscopy. Each morning I was expected by the night staff to get out of bed and sit in a chair with no pillow for 2 hours even though I was septicaemic and unable to support my own weight, while I waited for the day staff, a couple of whom chewed gum all the time, to ‘come and do the beds’. After 2 days I rebelled and crawled back onto the bare mattress but they didn’t come any sooner and left me until last. While lying there I heard the lady in the next bed who was barely conscious referred to as a ‘bed-blocker’. Then I refused to get up altogether at 6.30 am and my increasingly stained sheets were left unchanged for 3 days while the dressing on one of my bilateral cannulas, left in for almost a week, began to discolour and smell.

Neither the nurses nor the ever-changing doctors who visited each day introduced themselves and I couldn’t read their name badges as I didn’t have my glasses with me. I gradually learned which nurses to ask if I wanted something, and which ones would ignore me or get inpatient if my request didn’t fit with their all-important routine. Two of the staff nurses and one of the untrained nurses showed me considerable kindness- they told me that they had been hospital in-patients too and knew how important it was to be provided with information. Another left me for 2 hours in acute pain. Three days into treatment I was mistakenly given my medication orally rather than IV, but even this didn’t warrant a conversation with the lead nurse. When I made my first unsteady foray out of the room and down the corridor, fortunately without falling, I couldn’t resist a cynical snort when I saw a poster all about ward A’s dedication to providing high quality patient centered care.

Halfway through my stay, as I began to recover I was transferred to another ward, which I will call ‘B’. I was immediately greeted by the senior nurse who expressed horror at the sight of the tube hanging from my arm and insisted on its replacement. This was a surgical ward, and it was quieter, but only at first, and it soon filled up completely with post-operative patients and quite a few people as disabled as those I had shared a room with before. Everyone there introduced themselves with ‘Hello my name is’. I became visible again- as a person who was sick and needed care and assistance. Each day my bed was remade and I was able to get back into it if I needed, as I was still utterly exhausted. This was the NHS that I recognized but it felt as though I had been moved to a different hospital – not just to another floor. The mattress was even more comfortable (this was not a halo effect- my lower back no longer required a supporting pillow!). I was assured that beds were the same, yet it seemed to me that the people most at risk of pressure sores were sleeping on the oldest and most worn in the hospital. I also realised that the floor of ward B, unlike that in ward A, which had caked on dirt by the side of my bed, was actually clean.

I hate to criticize the NHS. I spent my life working in it, and I do believe it is the best health care system in the world- but I don’t think that means we should assume that all of its failings are related to lack of money and understaffing. I’ve worked in and researched health care long enough to know that isn’t true. From treating NHS employees with mental health problems who were bullied or excluded by managers and staff cliques, I know how much culture and management play a part in how effectively a unit operates, and how leadership style is crucial. That I only once saw a senior nurse in my time on ward A- and I and my fellow patients were invisible to her, was, I believe a contributing factor in why ward A was failing to provide the care it aspired to. In ward B the senior nurses were regularly seen around the unit and were approachable to patients and relatives.

After 2 weeks, I was discharged home where I am still slowly recovering. My bruises are disappearing and my desire to do something to change things has returned in force. I’m not good at being invisible- it’s a life long problem. I will be writing to the Chief Executive of the Hospital Trust … and also suggesting that if any of the Board are in doubt about the state of the beds in ward A they should be invited to spend a night (or two) in them.

Too much brain and not enough thought?

I sometimes have difficulty getting to sleep- but if you put me in a warm room, turn down the lights and start showing me pictures of brain scans I can guarantee that I will be snoring in five minutes- particularly if its after lunch.

You have probably guessed that I didn’t become a psychiatrist because I was fascinated by how the brain actually works. I was one of those medical students who wanted to spend time trying to understand what people I met were experiencing, and to find the right words or images to describe them. People with mental health problems are just like you and me (and I have them too), but with different ways of making sense of life, which can be sometimes be (for them and those around them) distressing, engrossing, terrifying, or engaging- to name but a few of the infinite possibilities. As a doctor I tried in turn to draw a person into a conversation, and then provide help and care.

What I am not, could not, and would never choose to have been was some kind of clinical neuroscientist. As you might expect from my problem in lectures, I’ve never found the intricacies of neuroimaging, neuropharmacology or neurophysiology, to name but a few of the specialties with that prefix, very exciting. Perhaps it’s because those subjects were so poorly taught to me. I get lost very quickly when I listen to someone who is talking with enormous enthusiasm, for example, about the genetics of mental illness, because sooner or later they go into minutiae that seem so far away from the ‘person’ that my brain moves to its economy setting then switches off completely.

However, young doctors who are beginning their training now in psychiatry are going to get a much better education than I got in neuroscience, and hopefully will be able to appreciate- and understand it-better than I did. This is indeed considered to be a golden time for neuroscience with many important breakthroughs. One of the recent winners of the Brain prize was a British psychiatrist. Perhaps its time has finally come and we will begin to see real benefits for patients in terms of more effective treatments.

Perhaps this will all happen, but possibly not as fast as some might believe.

When I started training in 1980, world psychiatry was moving out of what Leon Eisenberg called its ‘Brainless’ phase, dominated particularly in the USA by psychoanalytic theory, into the ‘Mindless’ era, where biological explanations took over to the point that the ‘medical’ for many became synonymous with the biomedical approach- although many of us remain firmly ‘bio-psychosocial’. Sometimes it feels as though the mental health world itself is split into those (especially psychiatrists) who are determined to show their psychosocial credentials and others who feel the need to defend against the onslaught of biomedicine. One of their favourite battlegrounds is on twitter, where blows are regularly exchanged.

I have certainly met some psychiatric colleagues who are remarkably single track in their biological view of mental illness. One or two of them were eminent neuroscientists whom I would dearly not wish to consult as a patient as it was clear they were yearning to get back to the lab where they could have a closer relationship with a sliced up brain than a living one. But I have come across many others over the years that were keenly determined to try and find new ways of helping people and demonstrated considerable empathy for their patients – even if they were highly skeptical about the role of psychotherapeutic interventions in achieving recovery.

However one of the major problems I have with neuroscience is that despite the amount of money that has been poured into researching the brain there is still so little to show that is relevant to patients. I started training more than 35 years ago, and we have been repeatedly told that the day when this investment will result in real clinical improvement is somewhere just over the horizon.

Psychiatrists cannot simply become ‘clinical neuroscientists’ or even- as some have suggested, neurologists for several reasons. Clinical neuroscience is not yet ready for clinical use. There is still a great deal to do before that point will be reached and the brain is an infinitely complex organ. Furthermore we mustn’t forget that the person who inhabits that brain is very complex too, and lives in an increasingly complex world. I have spent my life trying to help others achieve change, facilitate health care systems to change, and grow and change in my self. None of these were straightforward and I often failed.

Recently a group of eminent American psychiatrists concluded in the British Journal of Psychiatry:

‘our mental health research funding neglects immediate public health needs to focus on future discoveries, reflecting the drive for technological solutions for disorders that are unequally distributed and partly socially determined. Time frames for such payoffs have previously been consistently under- estimated’

Neuroscience may ultimately provide us with some of the answers, but I often feel when I’m in one of those lectures that I would really like to hear more how we can link up a little more across the multidisciplinary divide – and try to understand the interactions between the person, their environment and their brain. Because any real solution is always going to involve some thought about the first two of these. Instead there is so much research (and treatment) still going on in (sometimes idealogical ) silos.

Perhaps the new emphasis on neuroscience will attract more students into psychiatry, as it provides some tangible ‘medical’ credentials of a very high order (close as it is to neurology). But there is always the risk that too much of this will deter those, like me, who were fascinated by what people said, and wanted to be a doctor who listened, thought carefully about the options, discussed them, and then tried to help using every avenue available.

So I think we still have plenty to think about.

I don’t want your sympathy

Please don’t be offended, but when I’m not feeling well I don’t want your sympathy.

I know that I get depressed. But when someone is being sympathetic towards me it does feel rather like he or she is really thinking more about what they would feel like if this awful thing happened to them too. People can sometimes be really very kind to me when they are feeling sympathetic, and I appreciate that. I can see they do want me to feel better. But that warm feeling only lasts as long as I don’t do something to upset them- like shout at them or start arguing and tell them to go away. They can lose all sympathy for me then, because they really can’t feel very positive about the new angry version of me- and you need to feel ‘good’ about a person to have that warm glow of sympathy for them.

But when I lash out at others that is me too. That is how I can be when my mood gets low. I am irritable. I can remember a couple of times when I’ve seen pity in the faces of people around me. I’ve made them feel uncomfortable and embarrassed. But I don’t want your pity either thanks. Sometimes that has come with the implicit suggestion that I should be able to control myself better, even though I don’t think I can at the time.

What I want is for you to be curious about my life and who I am. To make a connection with me by trying to imagine exactly what it feels like to be me, in the situation in which I find myself. To be empathic. You don’t have to like me to feel empathy for me- you simply have to try and understand how and why I feel and behave the way that I do. To do that you have to have a conversation with me. When a health professional talks to me as though I am a real person we both experience something more meaningful. We meet as human beings- what Martin Buber called the I-Thou interaction. But the way that mental health services operate now, it sometimes feels impossible for anyone to get to know anyone else very well. You might be constantly being assessed as to your suitability for a service and be shuttled through many places for which you don’t seem to be ‘quite right’. No connection is made because it will only be broken again- the professionals retain their detachment. You become an ‘it’ to be processed in the system rather than a person, and you don’t feel helped either.

Some mental health professionals must, I am sure, think this is a better way of working because it feels safe and organized. But ultimately it is damaging and dehumanizing to everyone, both you and them. Sometimes they say they cannot help because you are not yet severely unwell enough- other times because you are simply too hard for them to cope with. Once again, they offer you their pity but nothing else.

Compassion has become a bit of a buzz word in the last couple of years, but I fear it is at risk of becoming commodified like so many other important qualities of health care. When you have compassion for someone you ‘suffer with’ them and you have a desire to relieve their suffering and help them. Personally I think its hard to have true compassion for someone unless you have time to get to know who they are and what their problems are- to have an ‘I-Thou’ rather than an ‘I-It’ encounter with them. There are few truly altruistic people who are universally good and willing to spend their lives helping everyone, regardless of what they know about them. The philosopher David Hume wrote that as humans we are characterized at best by limited generosity; especially on a Friday afternoon at 4.30.

So I fear unless you can truly make an empathic connection with a person rather than simply feel sympathy for them, the extent of your compassion will be limited. It will disappear as soon as they disappoint you. I’ve seen this happen to so many people with ‘troublesome’ behaviour with whom caring professionals have not made that important attempt to understand a life from a different perspective than their own. I have felt it from colleagues when my own behaviour was no longer within ‘acceptable’ limits for ‘depression’.

I think mental health professionals must take time to reflect on what motivates them to take up their profession. Many seem to want to maintain their ‘professional’ distance rather than get emotionally engaged and I fear this is all so easy to do in a fragmented and overburdened system like the one we now have. I have met many who retain the ‘I-it’ perspective as a cloak of (imagined) superiority. Some seem more driven by a feeling of pity for those of us who are more unfortunate in their lives, or move no further than sympathy- which I have indicated above has serious limitations. They do this rather than risk finding out that patients and service users are human too. For if you do that you have to admit the possibility that their ‘afflictions’ may not be unique to them. You may even be susceptible too- and then you would definitely not be satisfied with mere sympathy would you?

My memoir, ‘The Other Side of Silence: A psychiatrist’s memoir of depression is available in bookshops and on Amazon UK here. USA here.

Therapy

I know many people have enormous difficulty accessing therapy for depression- but as someone who has benefited for it, provided it, and supervised others, I realize how fortunate I’ve been, and how important it has been personally for me. Antidepressants have helped me with many of the symptoms of depression, but I still needed to sort out the conflicts and problems in my life that had contributed to the emotional mess in which I found myself. We keep hearing how there will be medication tailored to suit each individual some day, but I don’t think there will ever be a tablet labeled ‘take two a day to come to terms with how you feel about your mother.’

Over a period of about 12 years, during my twenties and thirties I underwent psychodynamic therapy, something in which I had also had some training – with 3 different therapists. Two of them helped me but there was one with whom I simply could not ‘gel’. Finding a therapist with whom you can make some kind of emotional connection is essential. I was able to learn how the problems in my childhood and the dysfunctional relationships I had with both of my parents were still affecting my adult life. I’m quite sure that, at the time, that was the best type of therapy for me. There were some major unresolved issues from my childhood and adolescence that  interfered with my ability to make stable, trusting relationships. I had also spectacularly failed to grieve for my father, who died when I had just qualified as a doctor. There was a period of a few years in my late twenties when my emotional life can only be described as chaotic. With therapy I was able to access the parts of my personality that I had been desperately trying to keep under control, but sometimes the new and more assertive me who emerged from the chrysalis of therapy was more of  an abrupt and outspoken moth still seeking the light of day, than a perfectly finished social butterfly. Nevertheless talking therapy helped me to address some of the difficulties that I had in the major relationships in my life and embark on what has been a successful second marriage.

Later, when undertaking a course of cognitive behaviour therapy (CBT), I found ways to begin to manage the way I ruminate about being me in this world and to cope more effectively with people in day-to-day life. Therapy was anchored in the present, not the past and I began to learn much more about how my mind actually worked. I could identify my previously unspoken, but very difficult to live up to,‘Rules for Living’ from David Burn’s book the ‘Feeling Good Handbook’, and I began to understand how attempting to live up to my internal very high but often conflicting standards, led to experiencing anxiety in everyday life. It is six years now since I completed that last course of therapy and I am beginning to realize just how long it can take for it to work. I still continue to have new insights into why I am the way I am, and what triggers and sustains those periods of anxiety and low mood, as life goes by. Life is a ‘work in progress’, or at least that is how it has seemed for me.

What most people get offered now in the first instance now is brief therapy, mostly based on CBT principles. For many people that will be very helpful- and when I was supervising a primary care based team of therapists, I saw how effective it could be- particularly if the behavioural aspect of CBT – behavioural activation- was employed first. CBT is very much about ‘doing’ things to feel better. Like setting goals for activities that you may have stopped doing. Or actively trying to address the depressive automatic thoughts that can both trigger and maintain depressed mood- both with the aim of getting you out of the shadow of depression to which you retreated when you lost the energy to fight anymore. In some ways the conceptual basis of brief CBT based therapy isn’t all that different from medication- in that both seek to ‘activate’ either your mind or your body. You get going and take up your life again. You are ‘fixed’ at least for the present as your deficit, of either serotonin or self-esteem ,has been addressed, as Alain Ehrenberg in his book on the sociology of depression, ‘The Weariness of the Self’, clearly describes. And in today’s climate you must of course take responsibility for helping yourself to get fixed- through self-help or presenting yourself at the doctor’s office.

CBT helped me when I was struggling with  my depressive ruminations and it was the right therapy at the right time. But when I was younger, and I couldn’t make sense of who I was or wanted to be, I needed time to build up trust in a therapist, and work on the complex problems from my past that actually interfered with me engaging in therapy in the first place. As I wrote recently, the simple ‘fix’ doesn’t work for a significant number of people who are depressed- particularly those dealing with painful conflicts and the impact of trauma- and we realistically should not expect it to. They need what I was fortunate enough to receive, but it is less available than ever- not only because of cuts, but the prevailing view that depression in primary care is something that can be ‘fixed’. Some people need time to engage, to trust and to work out how to discover who they are and learn how to forgive themselves for even being alive. Some who don’t respond to the simple fix are labeled as having borderline personality disorder- and their anguish is downgraded to ‘distress’ but they too are experiencing something that is only one aspect of the many faceted but hard to define experience that we call ‘depression’. I can assure you that it is real and those who suffer from it kill themselves.

Those who need more than the quick fix are  just as deserving of our attention- and our help.

 

Going North- the problems of trying to lead a disciplined life.

It is high Summer in Orkney, and I am back again in Scotland once more.

When things are difficult in my life I’ve always headed North. I don’t mean the North of England. That’s pretty much where I come from now. I’ve lived and worked there long enough to be a real ‘Northerner’. When I go South to London I like to broaden my accent a bit for the hell of it. But for most of my life the real North has only existed somewhere in my imagination- a magical place that never seems entirely real until I arrive there- and when I do it isn’t because I’ve reached some point on the map. Its more than that, it’s the sense of peace that infuses first my limbs and then seeps through my body. My heart rate slows down. I can feel the blood pressure in my arteries falling as the valves that constantly drip adrenaline into my system and contribute to my persistent feeling of anxiety are closed down one by one. Not by medication, but by nature. I can stop moving. My skin begins to tingle and itch as the wounds beneath, the invisible ones I’ve carried around most of my life, begin to heal.

Recovery isn’t just about absence of symptoms. Researchers who deal in the currency of symptoms talk about how in depression we pass from ‘normalcy’ (whatever that is) to the experience of ‘disorder’ followed hopefully by ‘response’ to the treatment, ‘remission’ of symptoms (in which they lessen or disappear) and then ‘recovery’, but many of us have ‘residual’ symptoms which wax and wane over time. Similarly psychological therapies are not designed to achieve a ‘cure’ in medical terms. We have to find ways of living with from day to day with our symptoms, problems and unresolved psychological conflicts. Health professionals rarely ask ‘How do you get through the day?’ yet that is such an important question. Every morning when you finally get out of bed, you have to face several hours of being, doing, feeling and interacting before you can get back under the duvet. For me, how to survive this daily experience is central to the process of recovery.

But I’ve never been very disciplined and in many ways I am still a rebellious child. I dislike going to bed. Without my husband to get me up to bed I can sit lost in my thoughts, reading, surfing the net or watching the TV for hours. I can lie in bed half the morning like a teenager.

I have this intention every time I come up here that this time I am going to get myself into some kind of healthy daily regime. There is so much information about the kind of lifestyle I should lead if I am going to learn how to manage my recurrent downswings in mood and loss of energy, which are the first signs that I might be becoming more severely depressed again. I know there are some things I can do to stay well. The list is endless and I know there is some evidence for all of these things: taking regular exercise, getting sufficient sleep for my age, avoiding alcohol and other ‘substances’ and eating a “Mediterranean diet” (not always easy in Scotland- never mind if you are on a low income). I also know that, given my propensity for relapses I should stay on the medication I have taken, in one form or another for more than 20 years, as well as the other tablets I have for my physical health problems. Keeping my mind on track is essential here as I am alone most of the time. It’s a great place to practice the skill of allowing the boxes containing ‘difficult thoughts’ to pass across on the horizon of my mind without having to unpack them. I know there is a lot of rubbish in them that really needs to be thrown out. If I allow a worry to take over my mind here its quite difficult to elude it. My mood soon begins to spiral downwards. These are the skills, based on Mindfulness I began to learn in the Cognitive Therapy I underwent a few years ago, to help manage ruminative thoughts.

I must get to bed before midnight and up before 8. Eat healthy meals that I have cooked myself. Take some exercise every day. There is a voice inside me saying ‘if you do these things you will not only be well, but you will be good’. But why do I have to be good? I find it impossible to be good all the time. Can anyone truthfully manage that?

So I cannot tell you a satisfying tale of how I did all of these things that I know should help me and they did. I can only say that when I am able to do them, they do.

I am gradually learning to forgive myself for failing to always live up to the targets I set myself for each day. I made them, so I can break them. I don’t have to spend every hour doing something useful- where does that idea come from? I have a choice. It doesn’t really matter if I don’t get any cleaning done until just before I return to Yorkshire. The North is a place where I find it easier to be me because it reflects something about what is inside me- I can see myself reflected in the lochs, the moorland and hills- a little chilly at times and not to everybody’s taste, but perhaps worth discovering. We all have to find a place where we feel we can be ourselves. I need to learn how to carry the essence of it back South with me. The longer I am here, with each visit, the easier it is becoming.

My latest book’The Other Sides of Silence- A psychiatrist’s memoir of depression is out now and also just published in  USA