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On not being immortal

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When I was a medical student, I remember one ward round when we were gathered around the bed of a patient who was breathless and coughing up blood. She admitted to being a heavy smoker. The surgeon gave her his usual stern ticking off about the dangers of cigarettes, and then we all trooped back to the doctor’s office where he took the patient’s chest x-ray out of the envelope and pushed it up onto the light-box on the wall.

“Look at the mass there he said,” pointing to dense shadow in the left lung, “almost certainly a carcinoma.”

And then he calmly took a packet of Senior Service cigarettes out of the pocket of his white coat and lit one up, puffing away as we discussed the prognosis. You have to understand this was the Stone Age.  People did still smoke in hospitals, even doctors. But some things haven’t changed. I think many doctors still have a peculiar belief in their own immortality. That knowing all about disease not only gives you power over it but makes you immune to it. It begins at medical school. Many medical students aren’t even registered with a GP where they go to university. They alternate between being sure they have every disease they learn about and denial of their own susceptibility. And it carries on. Doctors generally don’t smoke now, but we still abuse ourselves in other ways, notably with alcohol. We are tough and macho, don’t admit to weakness, and rarely follow the advice we give our patients, yet expect them to wholeheartedly agree with us.

Last year I had to come to terms with the fact that I’m not going to be immortal after all. I don’t mean that in the sense of transcendence of my soul.  I’ll keep out of that argument for the moment.  Rather I am not going to live forever, and life might get quite a bit harder for me physically in the future than it is now. To add to the anxiety, depression and hypothyroidism, I was diagnosed with progressive kidney disease.

Okay, so I know I will not live forever. Of course I won’t. Indeed would I really want to? There have been times when I’ve been so depressed that I’ve wanted to end my life somewhat sooner. The thing about depression for me, unlike physical illness, is that it feels like if I were to die from it, it would be because I wanted to. I have control. Even though I know rationally, as a psychiatrist, that what I perceived I wanted would be strongly influenced by my mental state at the time.  But there is, I think, a part of all of us that secretly hopes we can cheat fate and carry on forever (only while enjoying of course the perfect health of youth). When I was a young child, the idea of dying seemed so impossibly far away as to be almost irrelevant to being alive. Then my grandfather died followed by my father, both at ages not so different from where I am now. When people close to you die, death became a real possibility for you too.

People who have chronic illness are more likely to experience depression and anxiety, and the more chronic illnesses you have the greater your risk. In the last research project I worked on in Manchester, we attempted to offer psychological therapy to people with diabetes and/or heart disease who were also depressed. What was striking was how few of these people were actively receiving help despite the fact that all them had been screened for depression on an annual basis as part of the payment incentive system for GPs in the UK. Some of them had never discussed their mood or suicidal ideas with their doctor. They didn’t want to, they were embarrassed or they didn’t see the point, so they suffered in silence. It can feel stigmatizing having chronic illness, and having a mental health problem as well just doubles the stigma.

So it turns out I have a genetic disorder of the kidneys that I’ve had for many years, but didn’t know about before, and which is going to get worse as I get older, at a rate as yet undetermined. There is a good chance I will eventually need to have dialysis. Despite feeling fitter than I have for years, it is as though my body has let me down. Something is happening inside me over which I have no right of determination. Like many people with chronic illness I feel my useful life has now become shorter, so I’m beginning to speed up my rate of travel, picking up again those things I started to do many years ago but dropped because of my career, and aiming to achieve a few of them while I’m still quite healthy. Not quite a bucket list but something similar. It has increased my level of anxiety but I don’t feel depressed about it yet because I’m still in control, trying to keep myself fitter than I have since – well ever.

Or maybe it’s because I’m just being tough…. and I still believe I can win.

A diagnosis of anxiety

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On one of those occasions when I peep around the screen at what my GP is typing I see a diagnosis of ‘anxiety with depression’ at the top of the screen. I’m not sure how I feel about that. I suppose I’ve always thought about my problems as being more to do with depression than anxiety. But regardless of the idiosyncrasies of the recording system that GPs use (for the uninitiated, the Reed codes used in British General Practice don’t much conform to DSM or ICD), I think it’s probably right. In my life, low mood comes and goes, while anxiety has been pretty pervasive at the times when it hasn’t progressed to frank agitation.

This all comes to mind recently because the National Institute for Health and Care Excellence (NICE) just published its quality standard for anxiety disorders. It has information on all the different disorders neatly laid out- with specific pathways for Generalised Anxiety disorder, Panic disorder, Obsessive Compulsive Disorder, Post-traumatic Stress Disorder etc. At the same time there has been the usual and continuing debate about the validity of diagnosis in psychiatry in the twitter sphere, in which I occasionally participate.

My problem with NICE guidance is that there are so many different pathways for the different diagnostic categories of what are called Common Mental Health Disorders– which consist of all the anxiety disorders plus depression. Some mental health professionals disparaging call these ‘minor’ mental health problems and the people who suffer with them the ‘worried well’. I’ve unfortunately heard psychiatric trainees use those terms.

Warning: don’t ever use these terms in my presence, I can’t be responsible for the consequences.

If you add in the other common mental health problems in the community, use of drugs and alcohol which many use to self-medicate for these ‘minor’ problems, you have a complex bundle of guidelines for a large section of the community (around 15%) who mostly get their mental health care from primary care. In common with the main classification systems, NICE treat all these as distinct diagnoses. If only life were so simple.

The problem is that in the real world they all overlap, co-occur and change around over time much in the way that my own symptoms have done since adolescence. ‘Anxiety and depression’ is the commonest mental health problem that GPs see. Mixed in with that may be some phobic symptoms, panic attacks, obsessional symptoms along with other features which suggest post-traumatic stress such as hypervigilance. Add to this the common ‘co-morbidity’ with drugs and alcohol, and the difficulty some people with these problems additionally have in social relationships which equates to some degree of personality difficulty, we have the potential to label a person with multiple diagnoses. At the other extreme we could say, these ‘disorders’ are all part of the same problem. You are suffering from something called ‘life’.

My view is somewhere in the middle, but I struggle with it. I’m a supporter of the need for psychiatric diagnosis and anyone who doubts the need for it should first read Robert Kendell’s classic book The Role of Diagnosis in Psychiatry. But to say that doesn’t mean we’ve got it right, or that the same system is appropriate in all settings. In my work with WHO, I’ve helped towards developing the ICD-11 system for primary care, which is a good deal simpler than anything DSM can ever think up. However what is key for me is that a diagnosis is only a construct,

as Kendell puts it:

‘thoughtful clinicians are aware that diagnostic categories are simply concepts, justified only by whether they provide a useful framework for organising and explaining the complexity of clinical experience in order to provide predictions about outcome and to guide decisions about treatment.’

Clinically I have found the NICE stepped care model useful: severity of symptoms is the key to what intervention is likely to be helpful. But my approach to helping people has been to start with their life, their problems and hopes and concerns and help them to work out goals for how they would like it to be different. To work towards this by both finding out exactly what they are experiencing, and have been through, and then use a range of therapeutic tools from medication, psychological and social interventions in an essentially transdiagnostic way according to what is likely to help, both from the evidence base and their own past experience and preferences. This has been how I’ve supervised step 2 workers in Improving Access to Psychological Therapy (IAPT) in Salford where I worked for several years, to deliver care for people who might have ‘anxiety and depression’ in some kind of admixture, but had complex life problems. I’ve utilised a very simple set of ‘working’ diagnoses which can easily change over time.

I think we do underestimate the importance of anxiety, but it’s not just that we fail to recognise anxiety disorders. Anxiety pervades all of the common mental health problems except for in those people who experience depression without it. There is a significant genetic component which I can easily identify in my own family. Anxious symptoms in the presence of both bipolar and unipolar depression tend to make the outlook worse and suicide more likely.

Recently, since I gave up the day job, I’ve been feeling much less anxious. This was (unhelpfully) commented on by a colleague whom I hadn’t seen for a while who decided to mime how agitated I used to be at times. I have to admit that I was (strangely) usually worse when in his company. However this coming week I have to have more investigations for my physical health and the familiar churning stomach, sweating and tension have returned once more. Hopefully, after tomorrow, I will be able to return to the combination of exercise and mindfulness which I have recently found helpful in managing my ‘anxiety’.

Fingers crossed.

Asylum and stigma

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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 healing power of the sea

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I’m on the coast of North Yorkshire this week weathering a storm. I can hear the waves lashing the sea wall below my window. It’s different from the storm I would be facing if I were still at work, having to face the reality of providing care for people with mental health problems when services are being so constrained. While I listen to the windows rattling and watch the water rising up the slipway at high tide I find myself dipping into twitter every now and then. I can sense my blood pressure rising as I follow the debate about whether it is actually possible to achieve parity of esteem with physical care for people with mental health problems when everything is being cut. In some ways I miss work, particularly for the sense of being able to make a difference and for the contact with my patients. In other ways, for the constant anxiety it evoked in me for so many years, I don’t miss it at all. I’m still writing, and involved in research and teaching but I have control over what I do each day. That sense of having control over your life is important when you experience depression.

The sea can be both a source of fear, and of great comfort. I grew up next to it, and it evokes powerful memories of my childhood. My father was an excellent swimmer, but however hard he tried he never succeeded in teaching me. I was simply too anxious to take my feet off the bottom. I didn’t entirely trust he would not let go of me, yet now those times when I sat on the beach and watched him powerfully crawling through the waves off the Lincolnshire coast are some of the fondest memories I have of him.  I was born a couple of years after the great flood, which devastated the East of England. Since then I’ve travelled all over the world but have always felt the need to dip my toes in the water of whatever ocean I find myself beside. It’s like touching base with the past.

I cannot begin to imagine what it is like to be swept away in a tsunami, have your home battered by tidal waves or lose your husband when a fishing boat goes down with all hands. I’ve stood in the waves on Copacabana beach in Rio, and felt the warm tropical current try and drag me down into the depths. I’ve been unable to go into the shallows in Queensland for fear of being attacked by box jellyfish and sharks. The ocean is immense, merciless and can be so destructive, and yet it connects us all together. It has a power over which we can have no control; we have to accept it.

When times are bad the sea has a way of helping me to get my problems into perspective. I came here once, to the place I am now in Yorkshire, when an intense relationship that meant everything to me had broken down. Listening to the sound of the waves pounding the walls below as I lay in bed, with only the moonlight shining through the curtains illuminating the room, both resonated with my mood and helped me to understand how life goes on whatever happens.

Some years ago when I was on a beach in the Pacific Rim Park on Vancouver Island in Canada, I saw a woman meditating whilst sitting on a driftwood log next to the ocean. Since then, I’ve always taken the opportunity to use the sound of the waves to help me to clear my mind and relax whenever I am in earshot of the sea.  Next time you are there, whatever the weather happens to be, find somewhere to stand or sit awhile that is sheltered from the wind (or rain). Focus on your breathing as you would in any kind of meditative practice, but listen intently, with your eyes closed, to the sound of the waves ebbing and flowing and crashing to the shore. Try and carry on for at least ten minutes or longer if you can. When I make time to do this, it gives me a wonderful sense of wellbeing. For me it’s a kind of meditation in which I connect directly with nature. I suspect it’s a similar feeling to that achieved by mindfulness practice, but I am only just making time now to learn more about that. I will write more on that topic soon. In the meantime I am returning home with the sound of the sea, not in a shell in my pocket as I did as a child, but in my soul instead.

The friends and family test

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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.