Antidepressants and shame

I’ve been interviewed twice in recent months for articles about how young women shouldn’t feel ashamed about taking antidepressants. The writers had experienced considerable shame about even the idea of taking medication when they have failed to recover with other treatments for depression. They talked to others who described similar experiences- the stigma of admitting that they were seeking help for depression, then the criticism from others about taking medication. 

I’ve previously blogged about how much our sense of morality, of what is ‘right’ and ‘wrong’ is bound up in how we both view depression, and its treatment. The arguments go something like: 

  • If depression is only extreme sadness, why would you ever need to take something for it? It’s a response to what’s going on in your life- sort that out.
  • ‘Working things through’ with or without therapy, is the right way to deal with your problems. That’s showing real strength of character.
  • Emotional suffering is ‘normal’- we shouldn’t use medication to relieve it. (I might as well have said that suffering is good for the soul…).

If you do believe that depression is only normal sadness, then you will never accept that a pill might help other than to numb or sedate- which is the argument generally put forward. In which case, while being in such a state I’ve managed to function remarkably effectively for the 30 years I’ve been taking them. 

            But it’s the moral arguments that concern me because of the impact they can have on a person who might already be feeling quite sufficiently ashamed. Shame and guilt are common emotions in depression but shame differs in that while a person might feel guilty about a particular action, a sense of shame is about how they feel about their whole self for committing that action- as Lewis (1971) says:

The feeling of shame is an acutely painful experience because it’s the entire self that is painfully scrutinized and negatively evaluated. Such self-scrutiny leads to a shift in self-perception, which is often accompanied by a sense of shrinking, of being small, by a sense of worthlessness and powerlessness, and by a sense of being exposed.

People with sensitive personalities are more likely to feel shame when they get depressed- as I know only too well.

So if we view ourselves as potentially doing something morally wrong when we take medication, we might not only feel guilty about that, but ashamed too as the act challenges our very self-worth in the eyes of others. This is why the concept of pill-shaming first coined by the activist @Sectioned_ on twitter, is so important. Telling someone who is already depressed how they may be seriously mistaken about taking medication- for the reasons stated above- may potentially make them doubt their self-worth even more and emotional pain –  the agony of guilt, shame and hopelessness can and does kill.

There are other reasons of course why antidepressants are problematic. I’ve said many times (and been criticised for doing so) that they did and do help me. However, there are many people they do not help, some people who feel decidedly worse taking them, and many who have difficulty coming off them. None of this is in dispute whatsoever. But I do not think these should be reasons for being ashamed of trying them, as long as that’s an informed decision. 

            I don’t feel ashamed about taking medication, but that doesn’t stop me feeling angry and conned by pharma companies who have themselves, at times, behaved shamefully. 

I did indeed work with Big Pharma during the Royal College of Psychiatrist’s Defeat Depression Campaign 30 years ago by accepting their funding to produce teaching materials about depression. I continued to speak at meetings funded by them for many years afterwards- usually to talk to GPs and/or Psychiatrists about mental health and primary care. I feel naïve that it’s only in retrospect that I can see how, as Edward Shorter puts in, everyone suddenly ‘became depressed’ when Prozac emerged, but at the time, for me, it seemed like the right thing to do. Not least because I saw so many people with unrecognised and untreated depression in my primary care research, and I knew exactly what that felt like. When I joined the campaign, I had just recovered from my most serious episode on medication (an SSRI) that was, for me, much more tolerable than a tricyclic. However, it was only in conjunction with Lithium- which cost pennies (and still does, despite a recent shameful attempt to inflate its price to the NHS) that I made a full recovery. I’ve taken the pills of practically every company I worked with. 

Someone said, in one of the articles for which I was interviewed:

“Therapy is what helped me”… “antidepressants were the bridge I used to get me where I need to be.”

I wholeheartedly agree with that. Therapy helped me make sense of my past and present, and regain hope for the future – but antidepressants have kept me going – and alive.

My latest book: Finding True North: the healing power of place discusses how we achieve a sense of recovery in many different ways and is available now.

A torrent of grief

A few years ago, when Prince Harry talked about seeking out counselling, to come to terms with how he had been feeling many years after the death of his mother, most of the public reaction was sympathetic. But there were some mental health professionals who decried his decision to ask for help, as though something was ‘wrong’ with how he was feeling. ‘Grief is normal, why do we have to pathologize it?’ they said. Well, one has to ask whether, at the age of 12, discovering your mother had died in a crash after being chased by paparazzi, following her coffin through streets of weeping people who never even knew her personally and then having to live with the endless conspiracy theories woven around the incident, could in any way be described as less than traumatic? Perhaps it might affect you afterwards? Maybe you would need some help to cope with the feelings (Harry described it tellingly as ‘chaos’) that erupted later.

I often think of this when listening to the stories that the young women who I am supervising on the Greater Manchester Bereavement Service tell me. This was set up in the heat of the first lockdown, when people first began to die from Covid-19.  They are a team who spend their day on the telephone lines listening to the bereaved. Afterwards, I listen to them talk about what they have heard, how it affects them, and how we can help, as well as sometimes contacting other health professionals and agencies on behalf of our clients. I retired several years ago, but the General Medical Council wrote to me to tell me they had restored my license to practice, and hearing that I might be willing to return to work for a few hours a week, old colleagues from the social enterprise I helped to set up a decade ago asked me if I would return.

We hear from those who said goodbye to their husband or wife, or parent, or sibling, as they went into the ambulance, never to be able to see them again before they died. The older people who, despite more than 50 years living with the same person were unable to hold their hand as they slipped away and whisper their last words of comfort; and then have been left living in isolation unable to meet with friends or family to assuage their pain. That’s unimaginable for me, even after only a quarter of a century of marriage. Those for whom the opportunity to go through rituals of death- the funeral and the passing on of condolences from family and community, have been taken away. Their pain is palpable, heart-rending, and sometimes extraordinarily hard to bear. Some have lost more than one family member and feel unable to share their sadness with others grieving too, for fear of causing more distress.

            For most people grief is the normal expression of loss. It’s an acute sense of disbelief followed by a period of intense sadness, along with anger at what has happened, guilt as to whether you could have done more, and then a gradual re-engagement with a world from which the deceased person- the one you love- is missing. As when I finally came to terms with the sudden death of my own father, there comes a time when you remember the person you have lost as they really were, both wonderful and irritating, rather than as the idealised image you have taken inside you and dare not let go of for fear of finally losing them. I don’t think we ever really ‘get over’ the loss of loved one (never ask someone if it was difficult to get over their loss) it just ‘normally’ gets easier with each passing month and year. Some have been told they need ‘counselling’ but really want someone to hear their pain and be with them. It doesn’t have to be a professional but if they are already in touch with mental health services its extraordinary how many mental heal staff seem to think they ‘don’t do bereavement’. ‘It’s not in the IAPT manual’ we’ve been told several times. Where does it say you shouldn’t offer basic humanity and kindness? Some people need more than this- having had a complicated relationship with the person who is gone, or other complex problems in living. Then counselling can help.

But when grief is traumatic, as it has been for many people during Covid, grief may not progress as it usually does. It gets stuck- in a frozen state of disbelief, anger, depression or even wanting to join the dead- especially after bereavement by suicide. Then it can be even harder to get the right help. Those with a history of depression may need help before the magical often quoted ‘six months’ are up, and others develop PTSD and need it sooner rather than later too. Some need skilled therapy of the type that we don’t have very much of.  More like psychotherapy than counselling, and people trained to offer interventions that help those with prolonged or complicated grief

            In our team, we support people to get access to the right help. We support each other too, even though we all work alone at home (me in Orkney) and most of us have never met in person. There has been much talk of a ‘tsunami’ of mental health problems following the coronavirus epidemic. Many will be coming to terms with losses, of health as they suffer the long-term effects of Covid, loss of jobs, homes, and hopes for the future. Some will be those who found it hard to get the mental health care they needed for severe mental illness during Covid and must not be forgotten again now in the face of rising demand. And some, like those we hear from every day, have been overwhelmed by a torrent of grief and won’t make it through to the other side without our help. That’s nothing to be ashamed of and should not be diminished either. We have, thankfully, begun to have a more informed conversation about grief in our society. Much more will be needed.

My latest book: Finding True North: The healing power of place will be published on 29th April

Through a screen, darkly.

During lockdown, my life was conducted mostly on-line.

Whether by Skype, Zoom or the more clunky Teams, I managed, like many others, to participate in something like ‘normal’ life from my desk overlooking the garden, via the screen of my computer. To run training courses for some people and be a participant in others. To listen to a person reading from a book in Devon, an event I would never normally have been able to attend in Orkney. To take part in an international conference whilst wearing yoga pants and slippers- something that in the past might be a scene from a nightmare. To meet and supervise four people, who I’ve never met in person, and discuss the painful emotions experienced by people recently and sometimes traumatically bereaved, whilst being distracted by a young hare sunning himself beyond my window frame. 

            I know it’s easier if you’ve met before in person to relate on-line or by phone although some people seem to manage very well, especially when there is no alternative- or you are somewhere fairly inaccessible- like the Australian outback. There are many now who regularly meet their therapist through a screen. Others talk by phone, email or even MSN messenger. Perhaps you use an emoji in your text message to show you are crying, or maybe that’s an advantage for some- that no-one can see that you are. As someone said once to a therapist I interviewed, ‘I could pass you in the street and we wouldn’t know each other.’ When my lockdown anxiety was at its height I might have imagined anyone I met on my few trips outside could be the grim reaper posing as an acquaintance of mine- probably worse. (Now there is a psychiatric term for believing that people you know have been replaced by doubles…what is it? Capgras syndrome. I’ve definitely spent too long alone on social media the last few weeks). 

            But how real does it feel when you meet with a person through the screen? For a virtual G and T you don’t have to find both parking place and a seat in the bar where you can see your friend coming through the door. However, sometimes you get a weird glimpse of their face from an angle you wouldn’t normally see them, unless you were resting with your chin on the table between the two of you. You catch up on gossip, but you cannot hug one another like you usually do, and partners, children and animals suddenly appear to wave to you, or, in the case of cats, show no interest at all. Somehow the screen flattens out a person’s facial expressions- Zoom doesn’t zoom in for close ups like the TV does, and a voice may be irritatingly out of synch with an image. You are distracted by the state of your fringe and whether you should have eaten before or after meeting, when you would usually be laughing and joking over a meal and discussing whether to have a pudding. Somehow the amplitude of your expansive gestures is dampened down. Your emotions, everything that adds up to who you are is hemmed in by the edges of the world inside the screen and feels boxed in, diminished. It is much more of a fleeting experience than a personal meeting. Easy, yes, but perhaps less of an occasion for being so, even though those few minutes of connection can cheer you up immensely.

            When I carried out research into something called ‘telepsychiatry’ 20 years ago we had a contraption that looked something like a Breville sandwich toaster that you had to open up and connect to a specially fitted line, which could take BT several months to supply. I remember how the psychiatrists were perfectly happy to ‘have a go’ with seeing patients who lived some distance away, on the videophone, but they felt constrained by it too, as though they were talking to a person across a barrier like the traditional desk, rather than ‘being with’ them. Other members of the team refused to try it out exactly because they said ‘being with’ someone was a key part of how they developed their relationship with a patient. It wasn’t possible, they told us, to really get to ‘know’ someone through the video screen. Yet now, many of our lives are conducted in this way.

            So much of my relationship with my husband usually consists of us simply ‘being with’ each other, that our conversations on skype twice a day during lockdown were exhausting. We chatted, exchanged news, made each other laugh, depressed each other with the uncertainty of when it would all be over, but we never felt together in any meaningful way until he walked through the door just over a week ago. There are many kinds of transaction that can take place via skype or zoom that help those of us in far flung places to connect more easily with the world. They ensure those for whom there is no other choice can stay in contact. For me, however, relationships that are more than simple transactions will only really flourish if released, occasionally at least, from the frame of my computer screen into the real world. Otherwise they will forever languish somewhere in the darkness just beyond my reach.

Distress in the time of coronavirus

Recently I returned to work for a few hours a week, with the Greater Manchester Bereavement Support Service, which has been set up in the wake of the impact of coronavirus on the city I have loved and worked in for most of my life. However, I haven’t left Orkney. Like many others at the moment, I am working remotely and trying to cope with the sadness of lockdown, which bears much resemblance, for most of us, to grief. We miss our usual lives and contact with our friends, and the holidays we planned to take this year. But if we have a job we can do from home, and can afford the higher food prices, we might appreciate the relief from the daily commute. (Those home schooling as well as WFH may disagree here).

However, for others much less privileged than I am, Covid-19 is bringing its own much more severe stresses, loss of jobs, freedom, health and hopes for the future. Despite what was announced recently, mental health services have still been operating, but many service users and patients say on social media they haven’t been receiving the contact they previously had. Our Improving Access to Psychological Therapies (IAPT) service in Salford, of which I am still a non-executive director, is operating completely virtually but some people don’t want to talk about difficult emotions to a person they cannot meet face-to-face. My former colleagues in psychiatric services are still out in the community, trying to help the most in need through assertive outreach but there are others who are not being reached. Covid-19 is not an equal opportunities disease. Some communities such as ethnic minorities (not least doctors and nurses) are being hit very hard, and the poor will always suffer the most in any crisis.

Some say they are coping better with their mental health during lockdown, but many are not. A recent article in the Guardian  about a ‘tsunami’ of people presenting with new mental health problems has triggered the predictable debate about medicalisation of mental distress, and there has been discussion about how it’s quite normal to be afraid of coronavirus. Yes, it is. However, instead of getting hung up in the usual argument about what’s ‘normal’, can we at least acknowledge that people are suffering, some of them quite extreme and terrifying degrees of distress, and that they are asking for help?

When we have a loss in our lives, grief is a perfectly ‘normal’ human response, but what happens after that isn’t the same for everyone. Distress that is triggered by negative life events can spiral into something much more severe for people who are already vulnerable – because of early life experiences, lack of support, physical illness, the cumulative impact of previous losses and everything else that goes with poverty. If you have lost someone who is the centre of your universe during lockdown and you could not see them to say ‘goodbye’, to hold their hand for the last time, and even have a hug from your friends and family, you will likely be feeling bereft. You may even have thoughts that life isn’t worth going on with alone. Some people are experiencing these feelings just now and are beginning to ask for help as they are not ‘getting over it’ at the speed others that around them tell them is ‘normal’. They just want someone to listen to how it is for them.

I’ve been struggling at times as I’m alone in Scotland, and desperately in need of a hug from my husband who is in England. We are fortunate enough to be in the process of moving here, but he cannot be with me at present as he was in Yorkshire when the travel ban was announced. There are times when my mood slips, and the solitude I’ve come to enjoy slips back into a familiar loneliness from the past I thought I had overcome. Sleep is difficult, but the other advantages in my current life (especially the view from my desk window) are providing me with a cushion against relapsing back into depression. When some of us think of how we are coping, let’s acknowledge that life isn’t experienced in the same way by everyone. In the midst of this pandemic,  what some people are asking us for help with might not be ‘normal’ distress, and whatever it is, it hurts.

 

How support became a dirty word

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

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

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

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

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

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

Defeating Descartes

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

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

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

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

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

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

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

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

Product Placement: Out of Sight and Out of Mind

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

The Diagnosis of Exclusion

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

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

A story…

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

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

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The keeping of stories

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

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

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

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

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

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

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

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

Diagnosis, power and suffering

I was very fortunate in my psychotherapists. None of them tried to impose an interpretation on my experiences in a way that didn’t feel right for me. They suggested them from time to time, but they always allowed me the choice to find my own way forward. Two of them didn’t discuss diagnosis at all. However the cognitive therapist, who said that my use of antidepressants was ‘between me and my psychiatrist’ worked from the basis that I had recurrent major depression- what it says at the top of every letter from my psychiatrist to my GP- and the therapy I received was rooted in research evidence.

So it has been interesting, and worrying too, this week to watch people on social media arguing about the Power-Threat-Meaning (PTM) framework just published by the British Psychological Society. Some of its supporters have somewhat grandiosely claimed that it will ultimately replace diagnosis and that this is an ‘all encompassing’ framework. Its authors have denied this although, as widely noted, this is not what it says in the overview, where it states that continuing use of diagnosis is ‘unethical’. Nevertheless those of us, professionals and service users alike, for whom diagnosis has continuing validity, have been concerned and sometimes moved to anger by the conversation.

In my own career, I was particularly influenced by feminist approaches to therapy (especially after a memorable weekend at the Women’s Therapy Centre in the 1980s)- but my longest period of supervision was from a wonderful psychodynamic therapist who skillfully challenged me when my strongly held beliefs interfered with my ability to listen to and empathise with my patient. I can think of people I have seen in the clinic who would have found the PTM framework liberating and potentially empowering, particularly those who had experienced complex trauma in early life and had received the diagnostic label of ‘personality disorder’. But I can also think of others who would have found the idea of their problems being rooted in a response to ‘power’ difficult to understand or use in a way that made sense to them.

I didn’t experience anything like the trauma many of my patients did, but I was shamed and criticized, physically punished and experienced a degree of emotional neglect and absent parenting. The PTM framework doesn’t help me personally to make sense of that, although a therapist with a strong allegiance to it might think differently and want to try and convince me so. Neither does it help me to understand why my brother, alone amongst the members of our family, developed obsessive-compulsive disorder at the tender age of 7. I have spent my life, since my very helpful therapy ended, coming to terms with my grief for the childhood that I did not have- something which Alice Miller wrote about decades ago. I would have found the PTM framework helpful in understanding my battles with power in the NHS, and paradoxically perhaps with managers of psychological therapy services in particular when trying to increase access to therapy. But it still doesn’t explain why I amongst my colleagues was the one who got severely depressed. For that I would still argue a ‘biopsychosocial’ framework is still needed.

For me there are several principles that need to be considered:

  • All mental health professionals need to be able to work flexibly across different models in order to find what is most helpful for this person at this time in their life to understand and overcome this problem. If a therapist has too much allegiance to a particular model this can be detrimental- but I know from what people tell me that they have experienced this. Models may change over time and it may be necessary to draw from several in making sense of a problem and planning treatment.
  • Psychiatrists have power in their ability to diagnose and detain people under the Mental Health Act, but other therapists exercise direct power in the consulting room too. And we all have less power than many might imagine in the face of NHS management. It’s essential we work together effectively in teams alongside patients and service users, not in conflict with each other.
  • Diagnoses are not ‘things’ but concepts. As Robert Kendell, with whom I was a medical student in psychiatry, wrote:

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

  • The need for diagnosis is not going to disappear whatever the most evangelical adherents of new models might think. Diagnosis is used worldwide, for clinical work, epidemiology and research because it has utility. Psychiatrists are the first to admit that the current systems are problematic. I was involved in the ICD-11 for primary care, and met some of those working on DSM5 firsthand. I’ve seen how unsatisfactory the process can be. But across the world the vast majority of people with mental health problems don’t receive any mental health care at all, and if they do it is not from a highly qualified psychological therapist, but in a primary care setting. In helping doctors in many different countries to recognise the commonly occurring experience we call ‘depression’ (which exists the world over) I’ve tried to do my part to promote better care, and I certainly don’t think that is unethical- indeed quite the opposite.
  • It would be foolish to think that ‘good’ ideas don’t have unintended consequences. The libertarian wing of antipsychiatry described by Peter Sedgwick in Psychopolitics was perfectly in tune with the Thatcherite reduction in spending on mental health care in the 1980s. We must beware that statements that ‘mental illness doesn’t exist’ are not taken up by those seeking to further persecute people who are suffering terribly in the current social and politic climate. Because people are suffering.
  • And people who are suffering have a right to be ‘ill’. Cassell (1998) talks about the importance of understanding the nature of ‘suffering’. Suffering is experienced by persons, not merely by bodies, and has its source in challenges that threaten the intactness of the person as a complex social and psychological entity. Suffering can include physical pain but is by no means limited to it. It is crucial that we respond empathically to address that suffering whatever we call it. To call it ‘illness’ does not necessarily suggest a biomedical aetiology. The ‘sick role’ has its benefits and it allows us time out of life and additional support and help in order to recover,  and if everyone’s response is ‘normal’ then why do some suffer so much more than others do?

Because there are undoubtedly those amongst us in our society who are more vulnerable and need our help.

According to those who are at the front line in the fight for social justice for people with mental illness in our community,  diagnoses are required (regardless of what it says in the PTM framework) along with deficit based descriptions which fit mental health problems with every day tasks such as difficulty in eating, bathing and dressing. Follow this link for more guidance. Med_Evidence_WCP_Guidance_final_14dec

 

We have plenty to do together to work for better mental health care. The PTM framework will be enormously helpful for some, but not for others.

Please lets not not forget how we all came to be here- to try and work together to improve the lives of service users and patients.

 

The invisible patients

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

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

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

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

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

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

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