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 (Now there is a psychiatric term for believing that people you know have been replaced by doubles…what is it?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?

Sacred cows of community mental health care

A little while ago, someone I met from a third sector mental health organisation complained to me about their local community mental health team: ‘It’s a real nuisance when referrals miss the allocation meeting- then people have to wait for another week- and they might not get accepted…’

I’ve spent quite a bit of my working life trying to help things function more smoothly at the interface between primary care and specialist mental health care, so I wasn’t surprised to hear this- though disappointed that so many of the same issues keep coming up year after year- confirmed when I asked twitter whether the ‘traditional’ community mental health team allocation meetings still take place. In many places they clearly do. And that surprised me. Because this tweet pretty much summed up (for many I think) the inherent dysfunctionality of the enterprise:

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More than a decade ago, my colleague Carolyn Chew-Graham and I researched the relationship between CMHTs and GPs in Manchester and Croydon,and, as part of this project, we obtained permission to record referral allocation meetings and analyse them- in addition to carrying out in-depth interviews with GPs and  team leaders. We concluded that:

‘Inconsistency was observed in how decisions were made on whether a referral was accepted or not. Conversations tended to switch between clarifying information, inconsequential comments, comments about the referrer, comments about risk and reiterating what has already been said. It was usually difficult to identify a point in the discussion at which a clear decision was made.

The findings from the analysis of the taped meetings were thus in marked contrast to the more structured and organised way in which participants reported that decisions came about within meetings.’

When we interviewed the GPs, some were visibly distressed by the process of trying to get a person who they felt unable to help seen by mental health services. Others were more pragmatic:

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These interviews were carried out in 2006, long before the current financial crisis in the NHS. In many places the same systems still exist. Are referral allocation meetings one of the lingering sacred cows (at least in some localities) of mental health care? And what does that signify about such services?

I attended my first allocation meeting at one of the first Community Health Centres, Brindle House in Hyde, more than 30 years ago. At the time we thought we were cutting edge, and perhaps we were, discussing the GP letters over coffee every Monday morning. A decade later, I helped to set up CMHTs from scratch after the closure of a mental hospital, and it soon became apparent that everyone in the team felt overloaded by the number of referrals. We tried to solve that problem, and didn’t entirely succeed, by setting up a primary care focussed team for people with common mental health problems- but it still worked in too similar a way to the CMHT. It wasn’t easy to get mental health workers out to work closer to primary care- yet it seemed to me that was where the solution lay. I’m still arguing this.

What twitter also told me was that in many places allocation meetings have been replaced by assessment teams, Single Points of Access and triage to attempt to control the pressure of referrals into the service- followed by case allocation by team leaders. Daily instead of weekly allocation prevents delays, and meetings can be reserved for discussing how to manage the flow (water metaphors abound). Caseloads are also more effectively managed than they once were. In my opinion, CMHT professionals should not have the freedom to say ‘I’m full’ whilst at the same time resisting supervision. When working with experienced mental health professionals in collaborative care research I have found that while many appreciate more support and supervision a few expect to work completely autonomously. I support the need for 3 types of supervision- case management, clinical and developmental- to acquire new therapeutic skills, but one or more of these may be absent. Meanwhile Single Points of Access (despite their woeful lack of evidence- this is the only study I’ve ever found) and ‘assessment teams’ are at risk of becoming the new ‘sacred cows’.

When I meet to work with a group of GPs, as I did only few days ago, it’s clear that they remain very unhappy at the difficulty accessing care for their patients- despite often having good working relationships locally. While many of the ways that the interface has been ‘reconfigured’ have helped to control the demand for access to care, the question arises whether they are really the best options for the whole system- in particular patients and service users. More resources would help, absolutely, but other things need to change too. The problem with some of these new structures and ways of working is that they have increased the problem of a person being assessed several times before anyone agrees to help them- if at all. Single points of access, although ostensibly better in many places than what has gone before, cut across existing relationships between teams and primary care, and can especially disrupt doctor-doctor communication- which GPs value.  I really look forward to the proposals from the team currently working on the National Community Mental Health Pathway, but I suspect that not only ways of working need to change– but values have to be challenged too, particularly how staff arrive at their beliefs about who is ‘deserving’ and ‘not deserving’ of ‘care’. That might expose some other sacred cows and open them up for discussion.

I continue to believe that community services must work much more closely with primary care. As Emma Tiffin and her colleagues have shown in Cambridgeshire, supporting primary care with the local PRISM service ( PRISM presentation 7.12 ) who don’t accept referrals but requests for service (‘referral’ and ‘threshold’ are banned words- it’s about providing advice to GPs and supporting patients through to the best service option for them- not turning people away) things can be done differently. Services need to reconsider how they can provide a more open, accessible and helpful face to the community and that means working much more closely with primary care. Assessments should be as few as possible- and ideally the person who initially engages the person should continue to work with them. I know from talking to service users- and using services myself, how stressful that first meeting is- but so much important therapeutic work can be done in that one session. The key to ensuring this works effectively is the right kind, and level of supervision- with medical input essential.

Allocation meetings where decisions are made about whether or not to accept GP referrals, and who is going to take them, should be a thing of the past.

My last allocation meeting at Brindle House in 1984 ended with some of team performing a goodbye song- with new words to the music of Stairway to Heaven (they knew I was a Zeppelin fan). I found the verses recently when clearing out my study. Very happy memories-

but we have all moved on.

 

 

 

 

 

 

 

 

 

 

 

 

Recovery during a war on depression

 There has never been an easy time for people with severe mental illness (yes, I am calling it that) to get the help they need to recover, but at the present time it seems harder than it has at some other times in my life. The terrible impact of austerity on the provision of mental health care, combined with the redefining of ‘recovery’ as being capable of economic activity has discriminated against those who are disabled. The results have led too many people to take their own lives.

I have experienced episodes of depression throughout my adult life but I acknowledge that I am fortunate to have been able to retire from work, and to embark on what David Karp the sociologist describes as defining depression as a condition that one can get past. When I am well, as I have been for the last few months apart from a blip before Christmas (work related), I find it hard to remember just how awful I felt the last time I was severely ill. But what I’ve been working at over the last couple of years is trying to reclaim recovery for what I always originally understood it to be. Not 50% reduction in my scores on the PHQ-9, or my ability to work, but re(dis)covering the life I’ve glimpsed at times but never managed to reclaim- because I’ve learned how depression cruelly deceives you by whispering that there is nothing left in life for you. It’s so much more than unhappiness. It’s a way of being.

The current discourse about ‘depression’ hasn’t helped. I’ve spoken on social media about how there seems at times to be a war on antidepressants, but actually I think it’s more than that. I think it’s a war on what I, and many others experience as depression. There is a real sense of denial of experience- of the phenomenon (it’s really ‘misery’ and ‘unhappiness’); of the cause (it’s all about power, threat and meaning– the body doesn’t come into it- despite the fact that depression is undoubtedly experienced in the mind and the body); and the treatment (antidepressants don’t work- and anyway they aren’t antidepressant- they just numb and sedate you); and actually work is good for your mental health. Any work (no it isn’t).

Therapy has become aligned in some places with employment services and in Five Years Forward, ‘depression’ is subsumed under Improving Access to Psychological therapies only. The fact that it can have psychotic features in this setting is sometimes missed by those not trained to recognise this.

What I have learned is that first and foremost you need someone who may not agree with your view of the world, but believes you when you say this is how it is, to be there to guide you through. You have to be able to trust them. Many people find that difficult because of what they have been through in life, but so many health professionals seem to fail to understand the role they must play in engaging you.

Getting access to the right treatment for you is essential. I don’t think depression is homogenous. In my experience the part played by physical, psychological and social factors in its aetiology can change between episodes and over a lifetime. And treatment needs to be similarly tailored. When I was younger I benefited from dynamic psychotherapy in helping me to make sense of my difficult early life. Later, CBT helped me to cope with every day living. And I needed medication- and still do.

At the moment we are still in the midst of a debate between those who say there is incontrovertible evidence that antidepressants work- and those who still say that it’s mostly a placebo effect. I believe they work- for many people – but not for others. I guess one of the problems is that if you accept that medication works on depression then there must be some physical process at work in the brain- at least for some people some of the time. As I’ve said above- I think there is- but many will never be willing to consider that.

Some people experience problems with antidepressants- they can make you feel worse- I experienced awful agitation on fluoxetine. You can also have major difficulties withdrawing from them but I don’t think we yet know the true extent of this. Anecdotal evidence or internet surveys with their inherent bias, are not enough. But I believe that people experience this, and I don’t think my profession has, in the past, taken it seriously enough.

And we need better treatment for those who do not respond to antidepressants. I’ve no doubt from my own experience that people with adverse childhood experiences are less likely to respond to medication and need access to sufficient good quality therapy. The kind I had access to, longer term one-to-one, is now rarely accessible without payment. Yet I cannot see how recovery can be possible, with brief interventions only, for people who need time to build up trust because of what has happened to them in early relationships.

Beyond treatment you have to be able to rediscover living again. For me, that’s the part of the process that feels like healing. I’m still learning from the therapy I had in the past. I am rebuilding a life and finding meaning in existence again.

I am very lucky to be able to do this. It would be wonderful if those who espouse those simple absolutes about what depression is and what recovery involves might reflect on what it is like when no-one will listen to how awful you feel, and people just tell you what you should be believing and doing (what they fervently believe themselves or is economically expedient)- when that seems impossible and intolerable to you.

This is not mental health care- and if it were all I had received I would not be recovering from depression 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.

 

Why I’m fed up with being positive

So many people in the world now seem to be in pursuit of happiness. Worryingly that seems to be perceived to be something that primarily requires us to rework our ‘self’ with all of those self-help books I’ve complained about before; or achieve with very short-term therapy in which you don’t, God forbid, have the opportunity to get dependent on your therapist, even though every one of us, therapists included, are dependent on someone or something. And if you don’t achieve happiness I suspect the conclusion will not be anything to do with the difficulties that you have faced in your life- the traumas of childhood, the struggles of poverty, the lack of meaningful employment or the stigma that you face for being ‘depressed’. No, I am beginning to fear that in this age of relentless positivity the conclusion will be that you simply haven’t been smiling hard enough.

If there is a truly positive place in the world it is America. People serving you in shops and restaurants (mostly) smile at you and wish to ‘have a nice day’ (although the young man in the fish shop in Orkney wished me that today too- sadly). For those of us more cynical Brits who spend time in the USA (like Ruth Whippman in in her recent book ‘The Pursuit of Happiness’) it can be difficult to come to terms with a place where everyone seems to be so determined to find happiness by one means or another. In my favourite bookshop, the Elliott Bay Book Company on the top of Capitol Hill in Seattle, which by the way has a marvelous ice cream shop nearby, I found that the personal development shelves where people go to seek instruction in happiness, have now been relabeled simply as ‘self’. On the top of this section there is now label which simply said ‘self overstock’ which may or may not be intended to be ironic. I didn’t purchase anything, though I did buy a large vanilla cone from next door, which provided some relatively short-lived but exquisite pleasure.

I find the current vogue for dishonestly reframing everything in a positive way really irritating. We are not allowed to have problems any more only strengths.

Well that’s fine. I know I am a resourceful and resilient individual thank you very much with an excellent standing in the community. But can you help me with the fact that my electricity’s been cut off. That’s a problem not a bloody strength. And since I lost my job I’ve been feeling really down and I’ve had no money for 6 weeks while they sort out my benefits. I don’t mind you saying they are problems, because its true, they are, and I need some help.

This persistent and problematic level of positivity seems to have entered almost every aspect of mental health care. I suspect it wouldn’t bother me so much if it was balanced with an acknowledgement that people have real life difficulties that for which they do really need the help of others, especially mental health and social care services. And I have a suspicion that its all really about people becoming more ‘self-sustaining’ and cheaper to run.

The current wave of positivity began with the rise of the Positive Psychology movement almost two decades ago, led by the American psychologist Martin Seligman, previously better known for having come up with the term ‘learned helplessness’ to describe what happens when people feel powerless to change their lives for the better- and proposed as one of the psychological theories for how we get depressed. In her wonderful book Smile or Die: How positive thinking fooled America and the world the journalist Barbara Ehrenreich ably convinces the reader that the ‘positive thinking’ movement has not only pervaded almost every aspect of our world in the 21st century through the influence it has had on business and economic theories, but that it has also done a considerable amount of harm. We have been encouraged to believe that by thinking in ways akin to making magical wishes, we can improve our lot. That by the repetitive act of reading daily ‘affirmations’ and writing gratitude letters to express how we feel about what is positive in our lives we can increase our sense of ‘wellbeing’. Even that by thinking positively we can avoid death from cancer.

Even though the evidence for positive psychology remains weak  when viewed against what we know about other kinds of psychological treatments (and in the case of beating cancer, non-existent), it has consumed all in its path- perhaps supported by the extraordinarily powerful marketing that has accompanied it. Those who have developed it have become gurus and then very successful business people. As Ruth Whippman points out, their expertise is now being purchased to bully the unemployed into feeling better about their job prospects. And positive psychology has found its natural bedfellow in the Recovery movement where there is a similar degree of evangelical positivity about the future prospects of a person struggling with mental health problems. In the recent book Wellbeing, Recovery and Mental Health’  which ‘brings together two bodies of knowledge on wellbeing and recovery’ the authors describe a type of positive psychotherapy for people with severe mental health problems including such strategies as ‘savouring’ (I’m not sure what that means), gratitude letters, and recognizing your signature strengths; once again without providing much good evidence of its effectiveness  other than those who took part had very positive views of the programme. I do hope that was enough for them.

I’m finding all this unwarranted and dishonest positivity quite depressing. Am I alone? Or is this just another instance of my unfortunate learned helplessness?