Category: Mental health care

I’m a psychiatrist and I live with depression

lindagask29 Comments

I am a psychiatrist, and I’ve had depression on and off for most of my adult life. I’m now retired from practice. I’ve written about depression in a book, and people are saying how brave I am to ‘come out’ and say it. Yet if I had written about having arthritis, or some other physical condition, no one would have described my ‘coming out’ in such terms. Why should it be such a surprise that a a person who worked as a consultant psychiatrist for almost 25 years, and has spent her life researching and teaching the subject, should have first hand experience of it herself? Probably because, in the health professions, the last thing we usually want anyone to know, particularly our colleagues, is that we too are vulnerable to exactly the same stresses and problems as our patients. We like to see ourselves as strong; indeed maintaining our position on the career ladder often seems to depend on that. There is stigma related to having depression, even though mental health workers profess that they are always ‘fighting’ it. Depression is something that others suffer from, not us.

It is exactly this ‘us’ and ‘them’ attitude that I set out to challenge in the book. It started off as a memoir of my own fairly extensive treatments for depression, both with medication and psychotherapy. However as I began to write it, the close parallels between my own experiences, and those of the people I had tried to help throughout my professional life just became more and more obvious to me. There certainly wasn’t a clear boundary between my own experiences and those of my former patients. We all had complex lives- experienced loss, grieved for those who have gone from our lives, felt lonely, wanted to be loved, and sometimes felt compelled to self medicate with alcohol to ease our distress. Some of us made the same mistakes in our relationships over and over again. Many of us wanted or even tried to end our lives. The stories I tell in the book are taken from my own work as a psychiatrist but have been extensively altered and merged to create people who are true to life, but not ‘real’ case histories. However my own story is very real indeed. It wouldn’t have been appropriate to have been so open when I was still practising- when people came to see me the focus was rightly on their problems not mine. When I was unwell I withdrew from seeing patients until I was recovered. I’ve never tried to hide my illness from colleagues. I’ve just never been quite so public about it.

So far, I’ve had some interesting reactions. As I mentioned above, I’ve been described as brave by some, but others are still clearly unsure what to say to me. When I’ve talked in the past about treatment, in particular the fact that I’ve taken antidepressants now for the last 20 years, I’ve certainly picked up from some of my colleagues that ‘this isn’t the sort of thing one talks about’. Why not? Isn’t this exactly what mental health professionals talk about every day? How can we challenge stigma in society if we cannot face up to our own tendency to stigmatise both our colleagues and, even now, our patients?

I have listened to junior members of staff describe people with depression who are not actively suicidal, or psychotic as the ‘worried well’. I’ve been told that depression is not a ‘severe’ mental illness warranting more investment of psychiatric and mental health nursing resources. I’ve read articles written by my colleagues, which describe it as ‘medicalising misery’. Only people who have never experienced the pain, despair and hopelessness could talk about depression in such terms. I’ve spent my life challenging such attitudes. I made it as far as being a Professor of Psychiatry, despite repeated episodes of depression. I know I’ve had better treatment than many people ever receive and my aim has always been to improve access to, and quality of care for depression. I’ve managed to live with depression and found ways of coping with it- though that has been far from easy. That is also what my book is about. I refuse to be ashamed of it.

Nobody should be.

My book, ‘The Other Side of Silence: A Psychiatrist’s Memoir of Depression’ is published this week by Summersdale.

Fear of flying

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Last week I had one of the most frightening journeys I’ve ever experienced in my life. I flew back into Orkney in the middle of the ‘weather bomb’ that hit Northern Scotland. Despite the forecast, it was surprising calm as the Loganair flight left Aberdeen, but after we had been served the customary tea and Tunnock’s caramel wafer I always look forward to, the wind began to buffet the plane violently, not only from side to side but also up and down. As we came out of the clouds towards the islands we turned on dipped wing into a curve that I soon recognised as the familiar holding pattern.

“Sorry about this,” came the calm voice of the female co-pilot, “there’s a snowstorm at the airport in Kirkwall so it’s going to be a little while before we can land.”

For the next fifteen minutes or so, it may have been longer I lost track of time, we jerked through troughs and peaks of stormy shades of grey, occasionally illuminated by a flash of lightning. My hands, cold and clammy by now, gripped the armrests. My stomach rose up into my throat as I shared false smiles with a woman seated across the aisle. Behind me, another passenger lost the contents of her stomach. As I caught occasional glimpses of the flinty sea just below I began to have those familiar thoughts: ‘is this where it will end, after all?’

A few days before I had been working with fear of a different kind as novice therapists I was teaching about suicide talked about the anxiety which comes with not knowing how to cope when you, as a mental health worker, are faced with someone who might want to end their life.

From my early days in psychiatry I had to try and learn how to cope with uncertainty. I often meet doctors, nurses and other health professionals who quiz me about what is the ‘right’ thing to say or do in a particular situation; as though we can always be prepared for whatever we have to face in a consultation, and handle it ‘properly’. As if, by some magic, we can always find out exactly what the chances are of a person seriously harming themselves by asking them the ‘right’ questions, and manage any situation by being ‘ready’ with the ‘correct’ words and interventions. So that they will be safe…and we will of course not be criticised.

The problem is that it simply isn’t possible for any of us, therapists, doctors, patients or service users, to be sufficiently primed to deal with everything in work (or life) beforehand. There are too many different permutations possible. You have to learn how to use the knowledge, skills and particular talents you have and the information you can glean at that particular moment, to do the best you can to help someone in the time available. In talking to a patient, a mental health worker has to work hard to gain a person’s trust so that the answers to his or her questions will be at the very least some reliable refection of how they are feeling. In order to achieve this the worker has to be able to contain their own anxieties; about their own performance, the safety of the patient, what might or might not happen, in order to help the patient contain theirs. If the worker is struggling to deal with their own fears, such as being simply overwhelmed by the enormity of the person’s problems, the person seeking help will not feel safe enough at that moment to share how they feel- and the worker probably will not obtain an emotionally accurate sense of what is happening for them.

Its not only novice mental health workers who find it hard to manage uncertainty. I meet some quite experienced professionals who are still very obviously struggling to cope with their own fears. For me, it indicates they need a time and place to share their worries about the job. Supervision is still sorely lacking for many workers. As a consultant psychiatrist I regularly shared my concerns with my closest colleagues but I had no formal arrangement for support and supervision. But I have seen how, if we don’t learn to cope successfully with the uncertainty and fear we face in our work, we manage it in other ways. By detaching ourselves from the pain and becoming less empathic; by trying to dissolve it in alcohol and other substances; or just trying to exert an even greater control over the world, searching for answers to those unanswerable questions I get asked at the end of lectures which always raise an uncomfortable laugh from the audience. Our fear is palpable to our colleagues as well as patients.

If we can acknowledge the limits of certainty we have a least a good chance of reaching out and helping a person to tolerate the fear they are experiencing when they begin to tell us about something awful- like their thoughts about dying or the abuse they faced in childhood. Then we can begin to give them some hope. The first step in this must be staying calm, and showing we can take it.

I used to be very afraid of flying. I suppose I’ve undergone a prolonged course of desensitization over the years, but my palms still sweat at every take off and landing. Last week they were wringing wet.

After one run at the airfield which was aborted because of a ‘build up of traffic waiting to get in’ we eventually landed at Kirkwall. I was emotionally drained and almost tearful. But I know that what helped me to contain my fear of dying in the storm was the reassuring commentary of the co-pilot. Her calm professionalism helped. There could have been panic in the cockpit. But it didn’t show.

“Ladies and gentlemen, I know it’s been a difficult flight but you’ll be pleased to know they have just checked the runway; it’s safe and we’ll have you on the ground in a few minutes now.”

I wanted to thank and hug her, but I didn’t…being British of course. So I just said ‘goodbye’ with a teary smile, and stepped onwards into the rain. Happy to still be alive.

Work

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I’m going to write about a topic I know nothing about, at least not from the viewpoint of an expert in the published research, but as that doesn’t generally stop many other people I don’t see why it should inhibit me. I have after all worked for most of my life so I’ve plenty of lived experience; and I’ve treated many people who have been struggling to get back into work, or suffering ill-health as a consequence of the toxic environment in which they work. Its eighteen months now since I retired from the University, and a year since I gave up my clinical work and drastically reduced my workload. I’ve been told that work is something that is good for our mental health, so I can only tell you that I feel better physically and mentally overall than I have for several years. People tell me I look younger. I regularly apologise for having thrown in the towel; but it has been something of a fight- to get to the point where I could be done with the job before it did for me.

Please don’t get me wrong, I always enjoyed the interactions with patients and service users, and if I miss anything, it’s the feeling of making a difference in a person’s life; connecting with them and helping them to achieve some change. However I do know that if I had stayed in the NHS rather than being able to move into an academic post quite early in my career I would have been forced into taking even earlier retirement many years ago. I didn’t find the health service to be a sympathetic employer, either in the face of my own episodic periods of depression, which sometimes required time off work, or that of my patients who worked in the system- doctors, nurses and allied professionals. Not only was the macho style of management one of the factors that made it difficult for people to return to work with some degree of flexibility, it was sometimes a key factor in a person becoming depressed or severely anxious in the first place. I personally experienced bullying on more than one occasion, which contributed to several months off work. I know I’m less resilient than I sometimes appear to be.

My patients in the private sector had very mixed experiences. I remember one man who was criticised at work for needing to take breaks to ensure he ate at regular times- he had type 1 diabetes. When he got depressed they sacked him. Another patient with longer-term mental health problems was a poster-girl for a supported back to work scheme. The supermarket who took her on were very keen to be involved, but after a few months, after the support had been withdrawn and a ‘success story’ publicised, expected her to ‘work like everyone else’. Her voices returned as she became increasingly stressed and paranoid. She lost the job. In contrast, a person who worked for a large multinational company was allowed to return to work gradually over an extended period of time, and the occupational health department regularly consulted with all of us to ensure we were all agreed with the plan. They viewed my patient as a valued employee with expertise and experience they did not want to lose. I wish I could say that the NHS generally responded in a similar way. But it didn’t.

So where does this take me? Well, now the end goal of Recovery seems to be to get into paid work. Indeed attendance at Recovery Colleges has been sanctioned in order to apparently assist people with mental health problems to do so. Aside from the fact that, if Recovery were so straightforward all we needed to do was attend a course in it (and I don’t believe it is for many people), I’m very concerned about what we are sending many people back into. Not everyone is an academic who can work flexibly and take time off without risking their employment, I know that. However many more people do jobs from which they gain little sense of self-worth or value beyond simply earning a living. I’m a working-class girl. My parents both clocked in at 7.30 every morning and neither of them would have described their jobs as particularly fulfilling. What they did get was company, an opportunity to use some of their skills at least and a pay-packet. As a student I worked on supermarket checkouts, served in a bar and waited on tables for employers who varied considerably in their attitudes to ill-health. I wouldn’t have coped with those jobs at all if I had been depressed- nor would I have been in any great hurry to return. I personally know people who would never be able to cope with the stresses of regular employment again, yet they are repeatedly reassessed with the constant threat of losing their benefits. This just acts as a further stressor- we all know its cruel and has led to suicide.

So I have doubts about paid employment being the right goal for everyone. Surely it isn’t just about ‘work’ but how we spend our day? Yes, I know we have to bring in an income, but I’ve personally met very few people who really didn’t want to work. What they wanted was a supportive plan to help them move towards employment. A plan which might also involve volunteering and further study or training to gradually help them rediscover a sense of who they were, where they were going, and what goals they could realistically achieve. Not a simple ‘course’ but a journey, which might end in a regular job, but might not if that wasn’t right or possible. A much more humane solution than we are presented with now.

So don’t tell me that work is always good for me, because I know it isn’t. If it was, I wouldn’t be sitting here, feeling quite relaxed, writing this blog. I’d be on call. Or writing another grant proposal.

Whew!

‘Misery’, moods and madness

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I find I learn what I think about something as I write about it. Composing words on a screen (I stopped writing by hand when I gave up clinical work- I have a writing corn from years of scribbling in notes) helps me to formulate what exactly it is that is troubling me. But for a few weeks I’ve had difficulty writing anything very creative other than a single blog. I’m well aware I’ve been grieving for my beloved cat; I was feeling very sad but I began to feel a little better again. Then I had a visit from a family member, which stirred up unwanted thoughts (and dreams) about the past.  I began to ruminate again about all sorts of other ‘stresses’ in my life although I’m still not sure how really threatening they actually are, and, for a couple of weeks, my mood plummeted downwards.

 

It’s become fashionable in some circles not to use the word ‘depression’ but to refer to ‘misery’ instead. ‘Depression’ is a contested concept and there is a powerful view that it is primarily a state that is socially determined, a natural response to life events that will respond to social and/or psychological intervention without the need for anything more. Particularly medication.

 

While I wholeheartedly agree that the DSM concept of a unitary ‘depression’ is simplistic and that there are, as the founder of the Black Dog Institute in Australia, Gordon Parker, has suggested, many different ‘depressions’, I really must draw the line at the increasing use of the word ‘misery’. To be described as ‘miserable’ not only means being constantly unhappy but also has connotations of wretchedness and being an awful burden to others. ‘Misery’ as an idea I can just about tolerate, but to be described as miserable because you feel down feels like yet another form of stigmatization of the ‘undeserving poor’ who are unable, or cannot be bothered, to help themselves.

 

And the question is should all experiences of depression now be lumped together as a result of social causes? This is as simplistic to me as suggesting its all down to incorrect or ‘faulty’ thinking or something wrong with the level of monoamines in the synapse. All of these are, for me, similarly discredited ideas. Surely our brains (and our experiences) are worthy of more complex theories than these?

 

What I’ve learned is that there are times when something really seems to shift in my mood, as though some unseen worker in my brain pulls a lever.  Usually this happens in response to a build up of life events (yes, social factors play a key part), and when these events are of a particular kind that holds an inherent threat to my sense of who I am (the psychological part), then my mood is much more likely to shift, and quite rapidly too. When I was working full time I could move from feeling anxious, but keeping my head above water, to quite a different state of mind, within a day. When I am there I feel quite different. I don’t only feel sad, I feel physically ‘changed’; heavy of limb, tired, unable to sleep yet also very agitated. I ruminate about things that at other times I would be able to cope with easily and I am full of ‘fear’. When I look in the mirror I am quite sure I can see it in my eyes. There are times when my fear can shift into frankly paranoid thoughts and feelings of wanting to end my life. It’s terrifying and yet oddly familiar at the same time. I’ve been there many times, and I’ve just been there, albeit fairly briefly this time, again.

 

I’m fortunate that I haven’t had depression severe enough to warrant admission to hospital but I’ve had several episodes in my life. Why does this happen to me, but not to so many others who seem to be much more resilient? If I’m just ‘miserable’ perhaps it’s because I’m just inherently weak? For me, this is the obvious conclusion I must draw.

 

What I do believe is that ‘depression’ is a complex, multidimensional experience incorporating everything from profound and painful unhappiness to suicidal thoughts and psychotic degrees of despair. As I’ve said before, ‘depression’ and ‘anxiety’ are also very closely linked to the degree that I don’t find the idea of diagnostic co-morbidity useful at all.

 

The only way I can explain why only some of us seem to become depressed in response to life events is by drawing on the concept of vulnerability. A combination of genetic factors, early life experiences and unremitting life stresses such as lack of support and long-term physical illness add to our vulnerability. Such that, when a torrent of life events come along, those of us who have the greatest vulnerability and lowest threshold for becoming depressed, will get washed away by the waves while those who are fortunately more resilient seem to remain standing.

 

I don’t find it difficult to identify all of those factors in my own life. I’ve used biological (medication), psychological (therapy) and social (retirement from a stressful job) strategies to overcome them. Most of the time now, it works for me.  But there are still likely to be times when my mood just seems to switch gear again and I begin to see an image of the world distorted through a glass, darkly. I’ve never been clinically high, but when I begin to feel better I do sometimes feel an odd surge of well-being to be back in tune with life again.

Just please don’t call me ‘miserable’.

Reassessing ‘assessment’

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One of the side effects of having more time than I used to is that I begin to brood over the meaning of the words I once used without a second thought. It particularly happens on long walks without the running commentary of the radio. In a recent bIog I talked about ‘recovery’. Now I’ve started to think about a word I would never have given much more than a second thought too as a working psychiatrist- ‘assessment’.

The problem with many words in mental health is that they can begin to assume alternate meanings. Use of the ‘active’ and ‘passive’ tense can be important too in conveying a sense of who has the power. There is something very passive about being ‘counseled’ and the act of counseling has itself taken on various meanings from receiving counseling as ‘therapy’, wise counsel as ‘advice’ and being ‘counseled’ as a form of disciplinary act.

I don’t remember as a psychiatric trainee being specifically trained to carry out a ‘psychiatric assessment’. I was taught how to master a psychiatric interview, which considered of ‘taking the history’ (which can sound and feel rather like a rather one-sided action on the part of the doctor, removing something from the patient) and carrying out a mental state examination. I soon learned that for the interview to be effective I had to spend as long actively engaging the patient in thinking I was a person with whom they would be willing to share their experiences, as asking all the questions that psychiatrists are (in)famous for. Later on, I began to research how both GPs and psychiatrists approach the ‘consultation’ as the meeting between professional and patient is commonly known in primary care. Indeed actively ‘consulting’ the doctor conveys more power to the patient than being interviewed or assessed by them. I spent hours, days and weeks observing interactions for my research. I remember the patient who, when asked by the psychiatrist whether he knew if he had had a traumatic birth quite reasonably replied ‘well the Battle of Britain was on at the time doctor’.

Somewhere along the line, the psychiatric interview or consultation became the ‘assessment’ with a list of questions to ask the patient. Changes in the examination system of doctors reinforced this, with the shorter structured OSCEs (Observed Structured Clinical Examinations) with role-played patients, that are probably fairer to the candidates, but reward marks for asking the ‘right questions’ when ‘assessing depression’, ‘suicide risk’ or ‘hallucinations’. I’m as guilty of this as anyone. I teach suicide risk assessment skills. The blurb for my latest book on depression mentions assessment too.

So what’s the problem I have with assessment? Well, when a person assesses another they are implicitly making a judgment about their suitability for something or their ability to achieve particular goals. As a patient I have been assessed for therapy. That’s fair enough perhaps when there are indications as to whether or not a person might benefit rom that intervention. Psychologists regularly carry out assessments perfectly reasonably as not everyone will benefit from their specialist expertise. But how often is this mutual assessment? Are you a person I could talk to?

And so often now I see mental health assessment as a tool to exclude rather than seek to help a person find the help they might benefit from. Its more ‘this person isn’t psychotic or actively suicidal so there is nothing we can offer them’ rather than, ‘this person is consulting me. They are extremely distressed. They don’t understand what is happening to them. How can I help them?’ In our increasingly fragmented health care system everyone is carrying out assessment according to their particular ‘criteria’ while the service user understandably feels they have been ‘assessed to death- when is someone going to help me?’

Can we move away, in mental health care, from this culture of assessment back to one of a consultation, which David Tuckett and his colleagues first described many years ago as the ‘Meeting Between Experts’?

I am the expert in what I am experiencing. You are the expert in what might be effective. In consulting you and providing you with all this very sensitive information about my inner life, I’m an trusting that you as a professional will be able not only to say if you will be able to help me personally, but also that you will do your best to help me access what I need.

I really need your assistance now to navigate this increasingly hostile system of care. I am asking for your help.

Strategies for Living

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In the last few weeks, while I’ve been largely alone in Orkney, I’ve been aware of having to cope with my mood and thoughts from day to day and reading about how people with mental health problems cope on Twitter and support each other.

I’ve also been reminded of something I read many years ago.

At the turn of the millennium, the Mental Health Foundation carried out some service user research and produced a report called ‘Strategies for Living.’ Over 400 people had completed Knowing our own Minds – a user-led survey of alternative and complementary treatments and therapies in mental health and Strategies for Living reported the findings from interviewing 71 people with experience of mental health problems in depth. This was a really positive piece of work, which highlighted the particular activities and experiences which people with mental health problems found helpful in coping with their everyday lives: from on-going survival strategies, such as the need for financial security to crisis strategies such as making contact with friends or professionals, ways of controlling symptoms such as taking medication, having therapy, taking exercise or using a Walkman (yes it is a few years old) to distract from hearing voices, to ‘healing strategies’ through religion and spiritual beliefs to complementary therapies.

Relationships with others were key. Several common themes could be identified:

• Acceptance
• Shared experience… shared identity
• Emotional support… ‘being there’
• A reason for living
• Finding meaning… and purpose
• Peace of mind… and relaxation
• Taking control… having choices
• Security… and safety
• Pleasure

Mental health services were largely absent from the accounts that people offered although some individual professionals clearly offered a great deal of valued support

Why am I reminded of this now?

How we cope from day to day is a very personal phenomenon. There are of course some common strategies that people find helpful and these were the ones reported in Strategies for Living.

However there are also some other ways of coping that were not reported in here. The strategies that people do not always want to admit to. I know some of these intimately. Despite growing up in a household of heavy smokers, I’ve never tried a cigarette, but I watched my father consume 40 a day as his own personal way of keeping life at bay. Excessive drinking is something I’ve always suspected I could sink into and I’ve consciously tried to cut down in recent months. It isn’t always easy. I spent some of my career working in alcohol services and I know how hard it can be to withdraw from alcohol and other substances. But there are other ways too that we cope with how we feel: eating, or not, over exercising, self-harm and self-injury , spending every night out on the town or shutting ourselves away completely from the world to the point that we feel completely isolated and ultimately brooding about strategies for dying rather than living. Suicidal thoughts are themselves a coping strategy. Knowing there is a way out when it all gets just too much.

My concern with much of the self-help literature, some of which sits on my own bookshelf unopened, is that it makes various assumptions:

  • We actually want to change, and stop using the sometimes self-destructive ways of coping we find helpful in day to day survival.
  • We can find the resources to be able to do that.
  • We have the material resources and social capital to be able to adopt some of the positive strategies people suggest to us, such as time, money and a place to live to start off with.

Its difficult to adopt new ways of coping until you have acknowledged what you will lose in giving up the other strategies, the ones health professionals would prefer you to unquestionably ditch. Such positive ways of coping cannot be prescribed (such as in the advice to ‘go home and have a warm bath and a cup of tea’ that currently seems beloved of some crisis support teams- actually I didn’t  see these even mentioned in Strategies for Living either). Health professionals need to start from where we are at now. What have we found helpful in the past? What do we do now to cope? What is difficult about changing ? And avoid being judgmental if they want us to be honest.

The problem with feeling depressed is that it involves rumination. Indeed in some cultures it is considered to be a problem of ‘thinking too much’. We become aware of our thoughts, and struggle to cope with them minute by minute. I certainly have some obsessional features to my thinking, and I’m aware that if the day doesn’t go ‘right’ in some often hard to clarify way, I can feel as though everything has gone ‘very wrong’. I have to mentally restart the day in some way. These thoughts can be painful and repetitive and I seek ways to avoid them. Distraction is probably the most effective way I’ve found and I deeply resent that some psychologists I’ve met seek to denigrate such an effective coping strategy as a ‘safety behaviour’ in CBT speak. Hell- give me a break- it’s what I find helpful!

There are many different strategies for living and quite a few for dying.
Help me to find the ones that fit me best to help me survive.
Don’t advise, lecture or proselytize.

Defining recovery

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Some years ago I was told off by a mental health worker for using the word ‘chronic’ in a presentation I was giving on the Chronic Care Model, an approach to organising care widely used in long term physical health conditions. It’s been used in improving care for depression and I wanted people to think of applying the same principles to improving care for people with severe mental health problems.
‘You shouldn’t talk about ‘chronic’, we emphasise recovery now,’ she told me.
I remember feeling a little bruised by the encounter. I certainly hadn’t wanted to suggest recovery wasn’t possible. I know it is but of course it depends how ‘recovery’ is defined.

I’ve seen people with all kinds of mental health problems, from psychosis to depression to substance misuse, manage to reclaim their lives and get back to something they would consider to be a ‘normal’ life- if there is such a thing. When we asked people in the community who had experienced depression for up to several years how they defined ‘recovery’ many of them didn’t understand what we meant. The ‘recovery’ literature has not penetrated much beyond mental health care. When we asked how they defined ‘getting better’ they talked about:

…not feeling tired, achy, sad… So feeling normal is getting up in the morning going, “Oh, right, yes, new day.” Get ready, have a shower, brush your teeth, clean up quick so you can get out.” (Makin and Gask 2012)

In other words not having to think much about the minutiae of everyday survival.

What has become clear to me is that recovery is a very personal experience. It is not about symptoms, but more to do with a sense of being able to live life with a sense of fulfillment. It’s not static, but a dynamic phenomenon- your perception of it changes over time. When I have been very low, my perception of my own state of ‘recovery’ has been quite different from how I view myself looking back in time- when I can appreciate I may have been much less’ recovered’ than I thought I was. We all approach it at our own pace. It cannot be externally defined. Some addicts call themselves ‘recovering’ in perpetuity. I understand what they mean. I have met many people who have had great difficulty in achieving it, but I’ve tried hard to help them lead the best quality of life they could, given the problems they faced. I don’t know if they would have called this ‘recovery’. I didn’t ask. But I didn’t give up hope for them getting what they wanted from life.

So I am deeply disturbed to observe just how the term ‘recovery’ has been turned into something that many people with mental health problems now feel is an imperative. Something to be enforced upon them. Even more worryingly a state which can be achieved, even by people with severe mental health problems, through use of the kind of often simplistic self-help materials for which the evidence isn’t particularly strong even for common mental health problems. To provide a person in a suicidal crisis with an information leaflet suggesting they might get benefit from a cup of tea, and that they should immediately be writing their ‘wellness and recovery plan’ is not only crass. It is cruelly denying the reality of the depth of that person’s suffering. It is suggesting that it is simply their lack of knowledge of the healing power of caffeine that is responsible for them seeking your help. That once you’ve provided them with the piece of paper with the bullet pointed recovery aid-memoire, this is all they need to know to feel better. They will just be able to get on with it. If this were the case we could do away with skilled workers providing face-to-face care and replace mental health clinics with leaflets and a drinks machine- which is indeed the direction in which we are going.

But we cannot pretend that people do not need a great deal of help to recover. Recovery is a collaborative process. It is a goal to be negotiated between a service user and mental health worker in the often very difficult process of changing how we see ourselves, the world in which we live and the future. It may involve coming to terms with terrible trauma from the past, and the discrimination, stigma and social inequalities of the present.

We cannot force a person to recover. Our politicians, instead of aiding personal recovery, have redefined what recovery is. It means getting back to work and being economically active. The personal has become political in the most disturbing way.

I don’t know if I am recovered. I prefer to think of myself as ‘recovering’ from depression. I’m still on a full dose of meds and I have given up work. I’m achieving my own personal goals. That’s enough.

In response to the criticism of my approach to ‘Chronic Care’ I wrote a paper with the late Helen Lester on the importance of a collaborative approach to care of people with long term mental health problems, who need high quality, person-centred care plans, jointly negotiated with well trained and supervised mental health professionals, to help them achieve their own personal goals.

As long as we do it, I don’t care what you call it.

Making a connection

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The young woman, we can call her Mary (let me say now she is not a real person), is sitting in the chair opposite me.
‘What is it like, at home?’ I ask.
‘Difficult, no forget I said that.’
I wait a moment, then take a risk and ask, ‘What’s hard about it?’
Mary picks silently at a scab on her left arm. I can see blood beginning to ooze from beneath the hard carapace as she worries away at it with what remains of her fingernails. On both of her forearms are marks where she has scratched herself repeatedly with a razor blade. The newer injuries are still an angry shade of red. The older ones look like the silvery trails a snail leaves on paving stones. She has told me already how she feels a strange sense of relief when she cuts. She doesn’t want to kill herself, but there are times when she needs to have some relief from her inner pain, and this is something which seems to help, albeit for a short while.
‘Can you tell me a little bit about home…?’ I try again.
‘I can’t say I hate it can I? I mean they care about me, I suppose. But I can’t be what they want me to be.’ She sobs and her tears drip onto the arm of the chair.
I push the box of tissues towards her. ‘Do you have to be what they want?’
‘I don’t want to be…different.’
‘So tell me about being different…what does that mean?
Silence.
‘Maybe…I don’t know… you feel different?’
Silence. No- a shrug. A response.
‘Maybe that’s okay,’ I try again, ‘… to be different. Or maybe it’s not…it can be hard.’
‘Why? Why should it be okay? Not fitting in!’ She sounds angry now.
I find myself backing off a little, ‘I don’t know. Sometimes people just feel different.’
She nods but still looks at her lap.
Encouraged I continue. ‘Sometimes they are, different I mean. That’s OK with me, but how about you?’
Mary looks up. I detect an uncertain, conspiratorial glance and the first flicker of a smile. I sense we have started to make a connection.

Psychological therapy is a topic about which there is a great deal of mystique wrapped up in layers of ever more complex jargon. Each approach comes with its own vocabulary, set of abbreviations and training course. I had some training in my youth in psychodynamic psychotherapy; I’ve been on the receiving end of quite a lot of therapy too. I’ve also spent much of my life trying to help health professionals communicate more effectively with people who are distressed.

From all of this I’ve learned a few lessons:

Asking endless questions about symptoms is not the way to connect with someone.

Being a good listener is essential but not sufficient. You have to show that you are listening, and this means saying or doing things helpful things during the conversation. Not too much, and not too little. You have to be able to pick up on important cues, which may be verbal or visual, and comment on them. These important cues are the ones redolent of emotion.

You cannot fake empathy. If you don’t feel it, don’t pretend.

You have to be ready to hear awful stories about the suffering that people have endured. If you are not ready to do that then you shouldn’t be in a position where a person may need to confide in you.

You need someone to talk to about what you hear. Supervision is essential and many people in the caring professions simply don’t get adequate opportunity to make sense of their experiences with patients and service users with the end result that they emotionally close down and become insensitive to the pain of others.

You don’t have to be trained in psychological therapy to be able to connect with a person, but psychological therapies are useless when no emotional connection is made. Some people who have been trained are still hopeless at connecting.

Having your own experience of emotional distress isn’t enough. It might help you to understand what it feels like, but that won’t necessarily be what this person feels like and your work is to connect with them, not make them connect with you.

Without a connection you won’t feel able to talk about how you feel, develop trust and share your worries. I know this because the professionals who helped me most wanted to find out who I was and made the effort to connect with me. I will never forget them, or those of my patients with whom I was fortunate enough to forge similar bonds.

Asylum and stigma

lindagask2 Comments

You don’t have to dig very far into the history of most families to find someone who spent some time in an asylum. More than one person in my own family has ended up in the building ‘round the bend’ in the road, out of sight. A story was told about my Scottish great uncle who stayed on voluntarily as a gardener in hospital for the rest of his life which was, I guess, the family way of lessening the stigma of having a husband and father who went into the asylum and never came out. A much closer relative spent many months in a crumbling monolith in Lincolnshire in the seventies. When I went to see him, everyone in the train carriage would watch as I got off the train in the middle of nowhere. There was only one possible destination: a place which carried the taint of madness. And then there was my father. Although there were times in his life when his mood was very bleak, he wasn’t admitted as a patient; he would never have dreamt of even seeking help. But he spent a period in his youth working contentedly on the farm at the Towers Hospital in Leicester alongside those inmates who were well enough to be let outside into the extensive grounds, to milk the cows, collect the hens’ eggs and care for animals. Unlike my uncle, I think he really was just working as a farmer.

So it’s been interesting in the last week to reflect on the nature of asylum and the associated stigma following the response to the new book by Barbara Taylor The Last Asylum describing her periods in Friern Hospital, which is now luxury apartments and the acclaim for ex- mental health nurse Nathan Filer winning the Costa book award with his novel The Shock of the Fall. I was extraordinarily moved by the article Nathan Filer wrote for the Guardian this week on the state of current in-patient care, Mental health care- where did it all go so wrong. He describes the experience of his best friend Bryon Vincent who was admitted to the place where Nathan himself had worked some years before, after attempting suicide. What is experienced by Byron as the patient, and Nathan as his friend and visitor, is a ‘care’ system which is in a ‘God-awful mess’. Unlike Barbara Taylor’s book, this is not an account from the past; an historic description of the last days of a Victorian relic. It’s a much more contemporary description, even though the ward into which Byron was finally admitted was itself due to close because of budget cuts.

As Byron says:

“There was a pervasive air that things were disintegrating, one day I found a member of staff hiding in a bush. Alarms would sound and not be switched off for hours. The ward was more a place of crisis management than one of respite. I really felt for most of the staff, it was obvious they were doing their best under what were clearly incredibly difficult circumstances”

There are times when a person is in such a dark and tormented place that they need a place to be safe, to feel listened to and to be physically cared for. Sometimes they may need this for weeks or months, yet there is constant pressure to reduce the length of stay in psychiatric in-patient beds to little more than a few days. Nathan Filer’s friend Byron describes the pervading atmosphere succinctly: “The modern system seems much more focused on bureaucratic risk avoidance than it is on care.” Mental health workers now spend a great deal of their time trying to find beds for people often many miles from where they live, and where it is almost impossible for family and friends to visit them. I’ve commented before in this blog on the physical state of some in-patient units. With the closure of many of the new wards purpose built in the last decade with exorbitant Private Finance initiative funding, the situation is only going to get worse.

Mental health care in this country is in crisis.

I began to train in psychiatry at a time when the old asylums were beginning to close. I worked in modern though not particularly homely units attached to large general hospitals. They were situated in the community in which they served. Families and friends could visit. Home visits were possible. The aim, which wasn’t nearly achieved, was nevertherless to try and destigmatise ‘mental illness’ by providing care in a different kind of setting from the dark places built out in the fields, and on the same site as people were treated for physical illness. Many of my patients had physical illness too and were treated in the other half of the hospital. People in the acute wards and the maternity hospital benefited from the proximity of mental health expertise.

When as a consultant I found myself with beds in an asylum, at Whittingham Hospital in Lancashire, I was horrified by some of the attitudes of the staff I met whose families had worked there for generations. There had been evidence of cruelty and mismanagement at the hospital in the 1960s and 70s and an inquiry, yet little seemed to have changed. So the asylum era is not a period I hold any romantic notions about. The old asylums not only failed to meet the needs of many of the (excessive) numbers of people who ended up there, but contributed greatly to the fear of mental illness and being ‘put away.’ Many people were subject to abuse and neglect within their walls. Yet now, we seem to be in a period in which, as local units are closed down and what beds remain are centralised, there is a danger of recreating these asylums. Places where you will have to be really mad to get admission to, in which an increasing proportion of people will be most probably detained against their will, and which will once again be a source of fear and great stigma.

If we are really going to combat the stigma of mental illness, one of the things we have to do as a civilised society is put greater value on how we care for people who are too vulnerable to care for themselves and who do not always fit in with society’s prevailing norms. These are the people who may find it difficult to trust you enough to give you ‘Time to Talk,’ because they will be fearful about what your motives are, and whom you will tell; who will need empathy, care, reassurance , financial support, tolerance and sometimes a place where they can simply just be. Much as I understand the motives behind the antistigma campaign that Mind is currently running in England, there are many people out there at the moment who need a lot more than a cup of tea and a chat to help them get by. They need asylum in the other sense of the word. A place offering protection and safety.

So when a colleague told me the intention was to close all the local beds and build a new mental health unit on a ‘greenfield’ site I suggested they might also want to build a farm too. And you know I wasn’t entirely being facetious.

The friends and family test

lindagask1 Comment

Not long ago the NHS introduced a patient feedback test asking people if they would recommend a service to their friends and family. I may have missed it, but I would have thought we should really be asking staff too if they would suggest that their friends or loved ones might want to use the mental health service in which they work? Would they be satisfied enough with the quality of care?

Supporting colleagues who are themselves suffering from mental health problems or have family members in need of help is always eye-opening. In some places it’s really hard to get through the barriers to care and access the kind specialist advice and help a person would really benefit from. I’ve been lucky in that, despite not being psychotic or actively suicidal (colleagues may disagree about the psychotic, I get fairly paranoid when I am really down) I’ve generally managed to get therapy when I’ve needed it. I have good GP care. I went privately for cognitive-behavioural therapy not only because of the impossible wait where I live, but because I wanted to see someone who knew something about depressive rumination.  Even then, having helped me a great deal, he generously refused to accept payment from a fellow professional. I know most people are not quite as lucky as I have been.

Getting access to mental health care these days seems to depend on whether you want to kill yourself imminently or if you are hearing voices telling you to kill someone else. My colleagues in psychiatry get annoyed with me when I say you only need to ask these two questions now in the mental state assessment, but how easy is it really to see someone who can provide specialist advice on a serious mood disorder before you are at the end of your tether? Waiting list for psychological therapies are long, and they often don’t have parallel advice available to them for reviewing the often complicated medications that people are on and may have been taking for years. NICE guidelines say both should be available in severe depression, yet if you are under the care of the community mental health team (CMHT) some psychological therapies services will not see you until you are discharged from the care of the CMHT. I’ve heard this several times now. Why is this allowed to go on? It is contrary to national guidance. If it were happening for serious physical illness it would be a subject of a Radio 4 report. If people cannot access care when they are in the early stages of relapse, it is hardly surprising that they reach the point where detention sometimes seems to be the only option to those trying to care for them.

Do people who get depressed who work in mental health care have the same problem getting help? What do they think when they are told bluntly don’t ‘you don’t meet our referral criteria’ and get sent back to a GP who is asking for expert advice because he or she doesn’t know what else to do? Do they demand access and get it? Are they as lucky as I have been, because I think I have been fortunate to access skilled and high quality care.  I know it can be done if there is a will.

I’ve pretty much worked in the community the last few years, but I’ve visited a lot of mental health units to talk to people about taking part in research. You only have to walk into a cancer unit, as I did not so many months ago to visit a friend, to be shocked at the gross disparity between the physical environments that people with mental health problems, and those who work with them, have to tolerate when compared with those who have physical illness.  I know the entrance hallway isn’t always what the hospital is actually like inside, and the care provided in acute units has not escaped criticism either. We have the Francis Report after all.  Nevertheless I cannot help feeling that the state of our shrinking, poorly staffed, ill-resourced and physically unappealing mental health units, separated as they were from physical health care a decade ago in the new Mental Health Trusts, are a sign of where our priorities lie as a society. I cannot imagine recommending that a member of my family should be treated in one now, although I have at other times in the past.

I’d be fascinated to hear from anyone who works in mental healthcare who would be perfectly happy for friends or family with severe mental illness to be (hypothetically at least) treated in their own service. Take the test.