Work

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

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

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

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

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

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

Whew!

Defining recovery

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

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

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

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

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

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

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

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

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

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

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

A diagnosis of anxiety

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

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

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

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

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

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

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

as Kendell puts it:

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

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

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

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

Fingers crossed.

Asylum and stigma

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

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

As Byron says:

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

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

Mental health care in this country is in crisis.

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

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

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

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

The friends and family test

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

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

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

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

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

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