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.

 

Talking values

Our values are the principles by which we make judgments about what is important in life. We often make the assumption that because we consider ourselves to be ‘reasonable’ people, share a professional title or have similar political views we must feel basically the same way about everything- but we don’t.

I was reminded of this at a recent conference when I was talking (as I sometimes get asked to) about the importance of and ways of helping people with common mental health problems in primary care. One member of the audience expressed concern that directing resources to people with anxiety and depression was being promoted at the expense of people diagnosed with ‘real’ mental illness and told us that a member of a team working in primary care had complained to him that there was ‘nothing wrong’ with people they were being asked to see. Another asked the panel how we might help people to stop asking for help with such problems and be more ‘resilient’ instead.

If you know me at all you will be able to imagine my reaction. I’m one of those people who get help with a ‘non-psychotic’ illness, although what has been of great benefit to me is so much harder to access these days, not easier. I was also thinking of the depressed colleagues of these professionals who would find it quite difficult to admit they needed help in the face of people around them expressing these values and beliefs. I objected passionately to the use of the word ‘resilience’, as I always do and probably alienated the young woman who asked the question rather than convinced her with my reply- she disappeared soon afterwards.

Some time ago there was a push towards ‘values based practice in mental health’. According to the Oxford psychiatrist and philosopher Bill Fulford ‘Values-Based Practice’ is the theory and skills for effective health care decision making where different (and hence potentially conflicting) values are at play. Not only do health professionals hold many different values from patients and service users, they often differ considerably between each other- both between and within their respective groups. Discussion of all of our respective values is essential in those difficult areas such as the role of diagnosis, how to make care more patient-centred in the face of feeling ‘hit over the head with evidence’ (as someone said recently on twitter) and ethical dilemmas such as involuntary treatment. It is never so simple as something being ‘right’ or ‘wrong’. All of these require time to reflect, on how and why we hold particular values of our own and why completely different ones may be so important to another person- and being able to admit honestly ‘maybe I don’t have all the answers’.

On social media there is little opportunity for reflection and arguments about value-laden topics can quickly become abusive. I do think its crucial to remember how many people with mental health problems look to social media for support, and abrupt questioning by mental health professionals of the personal values they hold on topics, such as being given a diagnosis and treatment that they believe has helped them, should be viewed as ethically unacceptable by their membership organisations- just as it would be in a direct clinical encounter. Values based practice is not simply about educating a person about what is wrong with their beliefs, but starting from where that person is at and trying to understand and make sense of their values and beliefs. Neither of you is ‘right’.

I should try to understand how and why fellow professionals come to hold the views they have about people with common mental health problems. Telling them they are wrong isn’t the right way to approach the problem- I know that- but sometimes, as with all of us, emotions get in the way.  And, as I’ve witnessed in so many meetings, we can assume we are all ‘on the same page’ (or hope we are to avoid conflict) but attempted execution of the task at hand soon reveals that we all do it entirely differently because we never wanted to have those difficult discussions about our basic values. The national roll out of services- such as implementing stepped care services for depression, and IAPT, were good examples of this- approached very differently depending on the values and beliefs of those leading the process in each place, and varying considerably in effectiveness. If we do have time and place for both self-refection and conversations with fellow professionals and service users we often find we have much more in common that we imagine. We can even agree to disagree on certain topics but still work together if there is mutual respect.

I have much more time now to talk and think about those powerful emotional responses, so influenced by my personal experience and those of friends who have felt unable to disclose their problems- and how these have affected my decision-making. Can we please have more opportunities in the training of mental health professionals not just to talk with people who reinforce our values- but those who might challenge them? and I don’t mean in the setting of a conference presentation where discussion is limited and things can easily degenerate into a shouting match too. A first step, according to Gwen Adshead,  might be to ‘respect’- to be mindful of another persons differing beliefs and values. To care about their experience as much as your own. The people I have disagreed with will have arrived at their position perhaps because of particular experiences they have had- just like I have. How and why?

All of practice- not only psychiatry, is influenced by values- but insufficient attention is paid to not only what is best for the patient from the viewpoint of the doctor or therapist, but what is right for that person, at that point in their life given the situation in which they find themselves. A professional cannot and should not assume that they always have the ‘right’ values or the correct answer.

Damage

‘Mentally ill young woman killed herself hours after NHS staff called her a ‘f**king waste of space’

Sometimes a few words that catch your eye in a newspaper keep coming back to you. This  was from the Mirror a couple of weeks ago. I’m not going to say anything about the details of this particular case, but it set me thinking about the damage that is done to people in the name of care, often by the very people they are told to trust.

Many of you will say, quite rightly, that mental health care has been damaging people for years. I remember a patient of mine who had survived a leucotomy and the half-life he had lived in a long stay ward ever since. I’ve known many who have experienced awful after effects of ECT and medication and I bear responsibility for some of this myself- I was trying to help and sometimes I was successful- but not always. I have given tablets to people, which resulted in them feeling worse than they felt before they started them. But, just like we are now beginning to realize with psychological therapies too, treatments can do good but they can sometimes do harm. But how can verbal abuse by any definition of the word ever be justified as ‘treatment?’

A few days later I read the article about a well know TV presenter and his daughter who is recovering from anorexia. The original is here, (sadly behind a paywall) but it was picked up elsewhere too. He tells how she had felt suicidal after a regime, which

included an expensive regime of forced feeding, no exercise, accompanied lavatory visits to prevent them throwing up the food consumed, and monitored sleep to make sure they didn’t exercise while in bed”.

His daughter resisted and threatened to kill herself.

What I hated most about my job was treating a person against their will. It changed the nature of our relationship, sometimes (but not always) damaging it irreparably. The power inherent in my ability to engage with and forge a therapeutic relationship with a person was, for me, one of the most important and personally satisfying parts of my work. I wanted to work with a person, not against them.

In my years as a consultant I cared for quite a few young and older women with a diagnosis of anorexia and they told me what life was like in the units they had been treated in. Some experienced the style of care they were provided with as ‘punishment’, and for others I have no doubt that is what it was. What I’ve heard recently from people I’ve spoken to who went through some of those strict behavioural regimes (now strongly advised against by NICE) has confirmed that.

So what has this got to do with ‘damage’? Well I think we really do need to consider the long term harm that is inflicted every day when people are told they are ‘dependent’ because a service can only offer short term care, when what we know from attachment theory is that for a person who has never experienced secure, loving relationships, another rejection is the last thing they need. We need to consider how, when young people are sent to beds a very long way from home, this must seem like endless punishment for something they have done wrong but no-one will tell them what it is. We need to think about therapy that ‘does’ to people rather than ‘with’ them (in my experience that doesn’t work either). We need to think how it feels to be asking for help because you feel life is too awful to carry on with, but you are simply told to go away and have a warm bath. When the trauma you went through in childhood or later is simply confirmed by the way in which people treat you now. You are told ‘we have nothing for you,’ or ‘you pose too high a risk for us to manage’ or even ‘You are a f**king waste of space.’

Articles about designing our mental health services utilizing what we know from attachment theory – that the things that have happened to people early in life will affect how they behave and ‘attach’ in adult relationships, have begun to appear. Penelope Campling has talked about the need for ‘intelligent kindness’ from those working in healthcare. Yes, this costs money, and it is much harder to do it when money is short and the system is under such pressure. But some of us have long memories. Attitudes and training of staff were not necessarily so much different when the finances were healthier. Money may help but it wont solve the problem of the how the way care is provided can sometimes do much more harm than good- and the cost may be even greater than doing it differently.

I wonder what happened now to the many young women who ‘resisted’ treatment in the wards where I visited one of my most severely ill patients with anorexia. Who is caring for them now? What long term impact did a rigid unforgiving approach doing things to them rather than with them have on them? I hope that many have recovered but I cannot help wondering if some have been diagnosed with personality disorder for being ‘difficult’ and/or rejected from the system. Resistance in therapy is something to work through with a person, not punish them for.

At the end of the article the TV presenter’s daughter talks about how she was eventually helped to recover, in an NHS day care programme. Her words have stayed with me this month.

‘I had a key nurse who really understood me and saw the Maddy without the demons. She made me realize that inside me was still laughter and joy. I was lucky, but mental-health treatment should not be a lottery. The kind of unit that eventually helped me is all too rare. I feel desperately that things need to change and now is the time for action. Otherwise it will be too late’.

Maybe I am too idealistic. But I’ve resisted being damaged by the system too.

Therapy

I know many people have enormous difficulty accessing therapy for depression- but as someone who has benefited for it, provided it, and supervised others, I realize how fortunate I’ve been, and how important it has been personally for me. Antidepressants have helped me with many of the symptoms of depression, but I still needed to sort out the conflicts and problems in my life that had contributed to the emotional mess in which I found myself. We keep hearing how there will be medication tailored to suit each individual some day, but I don’t think there will ever be a tablet labeled ‘take two a day to come to terms with how you feel about your mother.’

Over a period of about 12 years, during my twenties and thirties I underwent psychodynamic therapy, something in which I had also had some training – with 3 different therapists. Two of them helped me but there was one with whom I simply could not ‘gel’. Finding a therapist with whom you can make some kind of emotional connection is essential. I was able to learn how the problems in my childhood and the dysfunctional relationships I had with both of my parents were still affecting my adult life. I’m quite sure that, at the time, that was the best type of therapy for me. There were some major unresolved issues from my childhood and adolescence that  interfered with my ability to make stable, trusting relationships. I had also spectacularly failed to grieve for my father, who died when I had just qualified as a doctor. There was a period of a few years in my late twenties when my emotional life can only be described as chaotic. With therapy I was able to access the parts of my personality that I had been desperately trying to keep under control, but sometimes the new and more assertive me who emerged from the chrysalis of therapy was more of  an abrupt and outspoken moth still seeking the light of day, than a perfectly finished social butterfly. Nevertheless talking therapy helped me to address some of the difficulties that I had in the major relationships in my life and embark on what has been a successful second marriage.

Later, when undertaking a course of cognitive behaviour therapy (CBT), I found ways to begin to manage the way I ruminate about being me in this world and to cope more effectively with people in day-to-day life. Therapy was anchored in the present, not the past and I began to learn much more about how my mind actually worked. I could identify my previously unspoken, but very difficult to live up to,‘Rules for Living’ from David Burn’s book the ‘Feeling Good Handbook’, and I began to understand how attempting to live up to my internal very high but often conflicting standards, led to experiencing anxiety in everyday life. It is six years now since I completed that last course of therapy and I am beginning to realize just how long it can take for it to work. I still continue to have new insights into why I am the way I am, and what triggers and sustains those periods of anxiety and low mood, as life goes by. Life is a ‘work in progress’, or at least that is how it has seemed for me.

What most people get offered now in the first instance now is brief therapy, mostly based on CBT principles. For many people that will be very helpful- and when I was supervising a primary care based team of therapists, I saw how effective it could be- particularly if the behavioural aspect of CBT – behavioural activation- was employed first. CBT is very much about ‘doing’ things to feel better. Like setting goals for activities that you may have stopped doing. Or actively trying to address the depressive automatic thoughts that can both trigger and maintain depressed mood- both with the aim of getting you out of the shadow of depression to which you retreated when you lost the energy to fight anymore. In some ways the conceptual basis of brief CBT based therapy isn’t all that different from medication- in that both seek to ‘activate’ either your mind or your body. You get going and take up your life again. You are ‘fixed’ at least for the present as your deficit, of either serotonin or self-esteem ,has been addressed, as Alain Ehrenberg in his book on the sociology of depression, ‘The Weariness of the Self’, clearly describes. And in today’s climate you must of course take responsibility for helping yourself to get fixed- through self-help or presenting yourself at the doctor’s office.

CBT helped me when I was struggling with  my depressive ruminations and it was the right therapy at the right time. But when I was younger, and I couldn’t make sense of who I was or wanted to be, I needed time to build up trust in a therapist, and work on the complex problems from my past that actually interfered with me engaging in therapy in the first place. As I wrote recently, the simple ‘fix’ doesn’t work for a significant number of people who are depressed- particularly those dealing with painful conflicts and the impact of trauma- and we realistically should not expect it to. They need what I was fortunate enough to receive, but it is less available than ever- not only because of cuts, but the prevailing view that depression in primary care is something that can be ‘fixed’. Some people need time to engage, to trust and to work out how to discover who they are and learn how to forgive themselves for even being alive. Some who don’t respond to the simple fix are labeled as having borderline personality disorder- and their anguish is downgraded to ‘distress’ but they too are experiencing something that is only one aspect of the many faceted but hard to define experience that we call ‘depression’. I can assure you that it is real and those who suffer from it kill themselves.

Those who need more than the quick fix are  just as deserving of our attention- and our help.

 

Children and young people first

There are some images from my six months as registrar in child psychiatry that stay with me.

It was the early 1980s and the social worker and I were visiting a young single parent living on the 9th floor of a tower block in Salford 6. She had just moved back to live with her parents after the breakdown of her relationship. As she opened the door we were greeted by her 6 year old daughter, a pretty little girl who danced towards us, twirling around in circles. Only she continued to twirl around, and around, and around the overcrowded space completely absorbed in in own world. According to her mother she spent much of the day performing an unearthly dance between the furniture and screaming loudly every time she was prevented from doing this. She had no words. I could see how much her mother and grandparents loved her, but their faces were lined with desperation. The young mother already had the air, and appearance of someone at least a decade older than her years.
“I’ve been told she’s autistic,” she said, starting to cry, “but I don’t know how to cope with her…I just can’t, and now my husband has left me.”

It wasn’t difficult to see what was needed was some intensive support for the whole family. It was then, as now, in short supply but that didn’t stop us trying to put it in place. In my time at the clinic in the old Royal Manchester Children’s Hospital in Salford (not the shiny new one at the Infirmary) I witnessed over and again the impact of serious mental health problems and difficulties on families already struggling to cope in unsuitable or substandard housing. And it reminded me, sometimes too often, of the impact that the problems of my younger brother, who developed obsessive compulsive disorder at the age of 7, had on my own parents’ physical and mental health.

As my friends will know, I’m not particularly ‘good’ with children (I have none of my own) so when I was on-call over the weekend I struggled to try and strike up conversations with silent teenagers in the paediatric ward, the day after they had taken an overdose. They usually went something like this:
‘Hello, my name is Doctor Gask. And your name is Jenny- is that right?’
Silence…no eye contact…a reluctant nod.
‘I really wanted to find out what happened to you- to see if we can help…is that okay?’
…’I suppose so.’
‘OK. So would you like to tell me what happened yesterday?’
More silence.
I soon learned, by watching the consultant I was attached to, a kind and extraordinarily astute child psychiatrist who was close to retirement, that direct questions were not the way to engage a young person in talking about their problems. If they turned up for a follow up appointment- and that often unfortunately depended on whether their parents saw the need for them to have any help, not only their own willingness to come, he would set about making a young person feel at ease, without actually appearing to make any effort at all. He would smile like a genial grandfather, and simply strike up a chat about things completely unrelated to the events that had brought them into hospital: their favourite pop stars (they were not called ‘bands’ then), hobbies, best friends and gradually build trust before moving onto the thorny question of why they had taken the tablets. After forty minutes or so he would be ready to ask: ‘So how would you like things to be different?’ followed by ‘I wonder how we can help you with that…should we try and look at that together?’

I realized quite soon into my six months working with children and young people that this wasn’t where I wanted to be for the rest of my career. I didn’t have the kind of skills and patience that the consultant had. I found it difficult to work with families where children whose apparently quite normal behavior did not meet the expectations of their parents. In particular I felt angry when parents failed to take up the offer of help because of their perception (perhaps rightly so) that we were suggesting the difficulties their children presented with had a great deal to do with their own life problems and parenting style.

However what I did learn, and has never left me, was the acute awareness of how the people I saw later in their lives with depression and anxiety, in their twenties, thirties and older, had first developed difficulties with their mental health in their youth. This was where their problems had begun.

I returned to work in Salford 20 years later and helped to set up a primary care based mental health team. Our base, at first, was in a building attached to the old Salford Royal Hospital where I had attempted and failed to strike up conversations on a Saturday morning. Only now the building, like many older hospitals, had been converted into luxury flats. As I discussed in supervision, with the Psychological Wellbeing Practitioners, the problems of the people being referred to us, I was acutely aware that the generation we had struggled to help back in the 80’s were the very people now presenting to the mental health services. What happens to us in early life- our relationships, experiences within our own families, continues to have an impact on our mental well-being for the rest of our lives.

Services for children and young people with mental health problems have never been well funded and now in the UK they have been cut more than ever before. What services do exist are withdrawn at school leaving age and very many of those who have succeeded in getting help fail to meet the ever more selective criteria of adult mental health services, unless they have been lucky enough to be seen in some of the newer services which don’t recognize this traditional cut-off point, which is completely unsupported by what we now know from research:

not only that adult mental health disorders are common in the population, but that most of them have their onset by adolescence. This period of life after puberty also sees a range of important organisational developments in the brain that last until the late 20s and usher in adulthood as might be defined from a developmental rather than a social or legal point of view.’

Yet this is exactly the period when adequate mental health care is perhaps most difficult to access.

I was recently asked in an interview (by Ruth Hunt) what my priority would be for funding when the new money promised for mental health care, too little once more, finally arrives. I didn’t hesitate. It has to be for children and young people, if we are going to begin to try and prevent the cycle of suffering. More families failing to cope and the next generation experiencing the same problems.
It has to be children and young people first.

My memoir about depression and Psychiatry: The Other Side of Silence is available now

Learning from Goldilocks

I’ve hesitated in writing about this topic, because I know things are extremely difficult in mental health services at the moment in this country. I don’t want to sound as though I think it is easy to do things differently. When teams are being cut it is very hard, and I am also retired now from clinical care so I am not in the firing line any more.

But what I’m going to talk about goes way back beyond the present problems- as long as I can remember. When I was younger, it pervaded the decisions I had to make when I saw a person in A&E who was unfortunate enough to live on the wrong side of the red felt pencil line in the on-call copy of the Manchester A to Z. It’s the problem that led one senior psychiatrist a few years ago to respond to me in a research questionnaire that no other speciality defines itself more adamantly by what it does not do than mental health. Its important to also say that I am not here referring to the awful burden staff carry when trying to find a bed for a person who needs admission; when they can spend all night phoning around the country. I know they are trying desperately to help the person who is in immediate need of care. I’m talking about what happens at the front line contact- when a person is referred by their GP, or seeks help- long before their problems have reached the point where admission is indicated.

We talk a great deal about patient and service user centred care in health services, but what we deliver and receive is not always that. The `Goldilocks Principle’, which applies in many areas from climate study to economics, states that something must fall between certain margins, rather than reaching extremes. The earth is a Goldilocks planet as it falls within a planet’s habitable zone. So what does have this to do with health care? Well, in mental health care the situation is often the reverse of the Goldilocks story. Instead of one person and three bowls of porridge, which may or may not be right for them, we have the reverse. Three people and one bowl of porridge. A service often defined by what it will not offer rather than how it might help, with no other options available for the people who do not fit these criteria. The decision not to help the other two people is often accompanied by the statement ‘we are not commissioned to provide X,Y……’ This is not a new phenomenon. It existed beyond the current cuts, but they have made it worse.

Now, there may be so little on offer that even access to that single bowl of porridge is limited or absent. Or a person may be told that their health will have to deteriorate further before the service will accept them. ‘Go away and come back when you are just right, even though we all know that is going to make it even harder to provide the help you need in the long run.’ And I know this is not a new phenomenon in the inner city populations where the lack of opportunity for early, timely intervention means a person may only be offered help, even though their GP has tried and failed to get them care for some weeks, at the point beyond which they no longer believe that they need it. So they then receive it under the Mental Health Act.

But when we do get the opportunity to re-build services- and its difficult to have seen thirty years of changes without hoping that something will change again at some point for the better, we need to try and ensure that what is provided is not simply about matching the person to what is on offer. This is what results in the multiple assessments with different teams which service users find so difficult, demeaning and pointless. This doesn’t have to mean allowing a person to choose exactly what they want, like Goldilocks did. We know that has problems not only of cost-effectiveness but the risk of causing harm. It is about having a dialogue in which all views are considered.

On a personal level -It is about thinking- ‘How can I help this person to get what they need’? If I cannot help them- who can and how can I facilitate them to arrive there. If it isn’t available what can I do?

At a service level it is considering how, if the person doesn’t really require specialist care, how can we support their GP, and/or the third sector to provide that care- and if we are ill equipped to do that, how can we find out.

It is also about ensuring we are not ‘cherry picking’ those people who are easier to help to improve our outcomes but trying to meet the needs of the people we were commissioned to help.

At an organisational level it is not only about developing specialist skilled teams to deliver help for more service users with complex problems, but making sure these teams in turn provide the right support to generalists. This will help to ensure service users who need help for which services have not been clearly commissioned and ‘fall between the cracks’ can be offered appropriate care.

It also means fostering a culture of dialogue, trust, respect and cooperation to ensure that the worker who makes initial contact with a service user is not told that their assessment is of no value because they do not belong to a particular profession or work in a certain team.

At a commissioning level, it is about asking the question ‘what are we not doing?’ ‘what isn’t there that should be?’ and ‘what isn’t working?’ for people with mental health problems- who will be able to tell you very clearly. It may not be possible to provide it, but we still need to talk about it and work out what can be done rather than what cannot.

At the moment it may seem hard to achieve any of these things- but these are not new problems and they will not all be solved by more investment. A person should never be thought of as ‘just right’ for a service. The care that they are offered should be, like Goldilocks’s porridge, ‘just right’ for them. Only unlike in the fairy tale, we should also try and ensure that doesn’t come at the expense of others- the three bears.

Take up thy bed and Work

The first time I heard the term ‘worklessness’ I remember a shiver running down my spine- it was the way in which it was being used to describe an apparent ‘human condition’ in which there was a sense of this being a lifestyle choice. We were told that it meant not simply being ‘unemployed’ but not actively seeking and/or being available for work; but it was not applied to the idle rich or others members of society, myself now included, who have concluded that work is not particularly good for their health but do not need to claim benefits (although my University Pension, funded partly through the state is still a benefit). At a time when the drive towards viewing employment as the desired outcome for people with mental illness was beginning to take precedence over other more used-centred outcomes it was a prescient warning of changes about which we are now only too aware- the move to treat people with physical but also particularly mental health problems as essentially capable of taking up their own beds and walking to the Job Centre, regardless of their condition.

I’m very suspicious of terms that are used by governments to describe those who do not comply with what is expected of them in our societies. As a psychiatrist I have been accused of being an agent of the state on more than one occasion, but the role played by British psychiatrists is a long way from that which was played by Nazi psychiatrists in the Third Reich who colluded in ‘euthanasia’ or by the psychiatrists in the Soviet Union who were willing to label political dissidents with the diagnosis of ‘sluggish schizophrenia’- which resulted in the expulsion of their organization from the World Psychiatric Association. The use of diagnoses to both label and treat dissident citizens continues to this day- for example in the controversial treatment in China of the practitioners of the Falun Gong meditation movement who are deemed to be psychotic and undergo ‘treatment’. We have also recently seen the notorious collusion between psychologists in the USA and torture of detainees at Guantanamo Bay. Professionals who were willing to behave unethically in the service of the state for payment.

You may say these are extreme examples, but I think we should be concerned when political and social issues are described in terms which a) infer that the problem lies within the individual rather than society b) dresses this up in pseudo-psychological terminology and c) infers that there is a treatment, psychological and/or physical for this.

The report this week from Birkbeck College highlighted the way in which being unemployed is increasingly described in policy documents as a problem of the individual, who lacks motivation or the ‘right attitude’ to obtain a job. This is deemed to be ‘treatable’, although for a professional to engage in such enforced treatment, without which a person will lose his or her benefits has been described as ‘not only unethical but probably illegal’.

It’s difficult to see how a person with severe mental illness would be capable of acquiring the ‘right attitude’ when they are still struggling with the everyday tasks of life. Yet there are people in our government who clearly think this is possible, which is not only senseless but very, very scary. It reminds me of the attitude of some of the people I worked with over the years, who truly seemed to believe that mental illness is itself a ‘lifestyle choice’, which the person suffering not only had power over, but could choose to change if only they wanted to do so. An attitude which not only lacks basic empathy, but has a seductive simplicity which has emerged recently in the imperative to declare oneself ‘well’ and ‘recovered’, and has been around for many years in some so-called ‘self-help books which tell you that you can ‘climb out of your prison’ without any help in unlocking the door.

It’s a worrying trend in a society, which seems not only to care less than ever for those who have disabilities but to declare that a person has, within him or herself, the power to overcome their problems, if they choose to, and obtain a job with or without the aid of some motivational therapy. And what happens if they don’t take up their beds and work? The Rt Honourable Ian Duncan Smith would seem to believe they must work, because it is in itself a form of treatment. For as it famously said on the gates of Auschwitz, Arbeit macht frei ‘Work Sets You Free.’

A life in the NHS

I arrived in this world seven years after the birth of the National Health Service. My life has been framed by it. I was born in a cottage hospital and regularly weighed by the nurse at the district clinic. As I grew I was taken to the General Practitioner who for many years had a surgery attached to the side of his home. I don’t remember much about those visits other than on one occasion my mother took me along expecting the GP to advise her (and me) what should be a reasonable bedtime. I know she was disappointed by his response.
‘She’ll sleep when she’s tired.’
An American psychiatrist I met many years later suggested I may have had ‘Oppositional Defiant Disorder.’ I remember retorting, ‘No I’ve just always been difficult.’ My mother certainly seemed to think so anyway.
When I left school, I studied medicine, and qualified as a doctor and then as a psychiatrist, working in the NHS in Scotland and the North of England for over 30 years. I was, and still am, proud to have been part of the massive social experiment that began the day Aneurin Bevan was symbolically handed a large bunch of keys by the matron of Park Hospital in Davyhulme.

I’ve seen firsthand what life is like in a country where the market governs healthcare. Several years ago I spent a few months studying the American health system as a Harkness Fellow in healthcare policy. A few memories from my time travelling between clinics in Washington State remain with me, indelibly burned into my memory.

• The young woman with poorly controlled asthma stifling her tears because she had to say goodbye to her doctor even though she was not moving away from town. She had changed jobs and her new employers’ insurance system contracted with a different ‘provider’.

• The middle-aged man on the telephone in the waiting room pleading with his friend down the line. ‘Can you lend me some money…I can’t afford to pay for my insulin.’

• The young man in paint splashed overalls who lay flat on the front seat of the bus writhing in agony, getting himself to the Emergency Room by public transport; probably to avoid having to pay for an ambulance he could not afford.

• The general practitioner who told me how she struggled to help a young woman in her clinic who was acutely psychotic. Her basic state medical insurance didn’t cover specialist mental health care, so the visiting psychiatrist, who was in the next office, was unwilling to either see her or advise.

• The nephrologist who specialized in treating African Americans in a southern state with a high prevalence of diabetic renal disease who told me that he could personally ensure his low income patients without health insurance got the care they needed through his academic interest in them, but others would not. He seemed curiously accepting of the status quo. ‘That’s how it is here.’

Don’t get me wrong. The NHS is a complex many-headed beast, fraught with problems. I have not only benefited from it, but I have suffered from it, and seen others do so too. I have struggled with and been bullied by bureaucratic and hostile management and survived an attempt to remove me with some serious consequences for my mental health. I’ve also known visionary managers some of whom became friends. But I’ve also seen the NHS try and fail to entirely abolish traces of the mentality of the huge county asylums it inherited in 1948. I’ve worked with many extraordinarily compassionate and caring practitioners, yet I still hear service users relate examples of attitudes and behaviour towards them, which are all too familiar from my early days as a consultant in a decaying mental hospital.

The gap between physical and mental healthcare, which was wide even when the new district general hospital psychiatric units were attached to the rest of the hospital by long corridors, grew to a chasm with the separation into acute and mental healthcare trusts. Despite evidence that investment in mental health care might have significant impact on the spiraling costs of physical healthcare, the concept of ‘parity’ still seems something to which little more than lip service is paid. Mental health care has been cut by a greater percentage in funding than any other area. And now, with the decline in numbers of GPs and funding of primary care, where 90% of mental health care is provided, we should not be surprised that it is harder than ever for people to get the help they need when they are in acute distress.

Throughout my adult life I’ve been in receipt of mental health care, most of it provided by NHS staff, who went the extra mile even though I wasn’t always easy to help. I’m still and always have been contrary. No one ever suggested it wasn’t in his or her contract to treat me but the goodwill that used to ensure mental health professionals didn’t have to receive treatment in the places where they work has largely disappeared. Rules reminiscent of what I encountered in my times in the USA are becoming increasingly used to determine who gets help.
‘We’re not commissioned to provide care for people with (you name it- Aspergers, Autism, Personality Disorder, Analgaesic abuse….the list grows).’

And now I’m getting older, and I have recently been diagnosed with kidney disease, I know there is a very real possibility I will one day be as dependent (a sorely unfashionable word I know) on the NHS as the day I was born, only this time for dialysis. I’m worried about whether the NHS will exist when I really need it to save my life, or whether I will struggle, as the patients I saw in the USA, to obtain care from an uncaring system.

Last time I visited Park Hospital, now known as Trafford General Hospital, the black and white pictures of the great day the NHS was founded were still on the walls of a corridor in an old part of the building, but clearly forgotten and sorely neglected. Their state seemed to me to represent the ways in which successive governments have tried to forget, suppress or actively derail Bevan’s extraordinary achievement. For all of our sakes let us not sleep walk compliantly into a future when it will suddenly not be there for any of us to depend upon.

In order to do this we must never stop being ‘difficult’. I prefer to call it ‘creatively contrary.’