Tag: mental-health

Defining recovery

lindagask5 Comments

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

lindagask6 Comments

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.

On not being immortal

lindagask6 Comments

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.

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.