My baby, psychosis and me’…and it’s Mind Media Award

My Baby, Psychosis and Me, and its VMG Mind Award. Probing  the underlying issues.

It is with a heavy heart that I am sitting down to write a third article about  the BBC 1 film My Baby, Psychosis and Me, which has just won a Mind charity media (VGM Mind) award for ‘Best documentary’.  Featuring two women with a diagnosis of post partum psychosis, Jenny and Hannah, who bravely allowed the cameras to follow their journey through services, it was undoubtedly powerful. But its overall messages were very worrying. In fact, I was so disturbed by the programme –  screened early in the spring as part of the BBC’s In The Mind season – that, in addition to explaining why in my article Baby, Me, Drugs and ECT I decided to explore the issues further in a piece which related them more to my personal experiences of perinatal trauma and distress. 

I was not alone in my concerns.  At that time, too, an informal group of nineteen people who have used statutory mental health services, are family members of those who have and/or are mental health professionals (it must be emphasised that these categories are not mutually exclusive), also co-wrote and sent an open letter to the BBC which attracted over 2000 signatures in less than a week, including those of a number of groups, charities and professional organisations.

The letter, published on the blog page of Peter Kinderman – now President of the British Psychological Society – questioned ‘the taken for granted …view that mental health problems are necessarily a manifestation of biological illness’, noting that it is ‘highly contested and unsupported by evidence.’ It suggested that both My Baby, Psychosis and Me and The Not So Secret Life of the Manic Depressive: 10 Years On, the film to which Stephen Fry put his name would have been more accurate and helpful had they acknowledged the proven causal role of the events and circumstances of people’s lives, rather than presenting a narrow focus on their brains, which has been shown to increase fear and stigma.

Eventually we had a response from the commissioning editor of both films, Clare Paterson, who simply stated:
“neither [of the films] attempted to look in detail at the causes of the conditions they focused on, and it was never within their remit to do so”

that in Stephen Fry’s case any pronouncements made upon his condition were specific to him, and that the two women featured in the perinatal psychosis film “emerged better after treatment and wanted their experiences to be shown in order to help others”. 

This is highly disingenuous.  As described in my initial review of the programme, we were presented with an extraordinarily strong message about what causes such problems (brain dysfunctions that need to be correctly diagnosed); about what ‘treats’ them (medication, administered in ever-increasing doses and combinations, often in defiance of reluctance expressed by the recipients … and if that doesn’t work, ECT), and about who should direct all this – a heroic male doctor, the caring but unchallengeable expert in women’s distress.

Anyone who has had any dealings with the phenomena that are currently blanket-labelled ‘mental health issues’ will know that the mere fact that someone tentatively leaves a psychiatric inpatient unit patched up (at least, ostensibly and to some extent) and armed with a bag full of mind-altering drugs, sadly doesn’t guarantee a happily-ever-after future scenario.  That’s when the pressure’s really on and any diagnosis that has become attached to a person along the way – along with their sense of disrupted life, and their raw, recent history – compounds their feeling of having diverged from the ‘norm’, and increases the stakes of the challenge. 

Women’s fragility, and the tentative nature of the initial stages of their rehabilitation, is duly touched on in the poignant homecoming scenes at the end of My Baby, Psychosis and Me.  But the thing that, in my opinion, was so irresponsible about the tone of much of the BBC In The Mind season, and the two films under discussion at that time in particular, was the hard sell promotion of the psychiatric system as the one and only purportedly respectable, responsible and safe provider of mental health care – and within that, an almost exclusive focus on the role of psychiatrists, medication and ECT.  For sure we are stuck, at least for now, with the financially-strapped, rigid and (most staff would admit, at least in private) highly questionable state mental health system.  However, it is no secret that its ultimate efficacy is widely disputed, and no coincidence that a great many complementary and alternative services and movements have grown up out of the gaping need left in its wake. 

If people were offered powerful, mind-altering drugs with transparency, and were told that the way that they work and their long-term effects on the brain are actually unknown, it’s quite possible that in their desperation most of the highly distressed individuals who present to statutory services would still opt to use them, on the understanding that they would be phased out at the first possible opportunity.  That would be one thing. 

But currently drug, and often multi-drug, prescription, and even the ECT procedure (passing electric currents through the brain), are sold to the punter packaged as ‘treatments’; the understanding being (as in physical health procedures) that there is at least some scientific rationale backing them, and that effective and appropriate medical intervention is taking place.  

In reality, once someone has been diagnosed and put on a drug regime, rigorous reviews and drug discontinuation are rarely routinely considered.  Yet those on the receiving end place their trust and themselves totally in the hands of those who are supposed to have the answers.  Having been through the system – and seen family members and friends subjected to its ministrations, both historically and currently (desirable as they might be, alternative services are thin on the ground, little known and less available in many areas) – I am well aware of the fact that apparent breakthroughs in care are due to little more than inspired guesswork or luck, and that the best results always occur when human to human empathic exchange takes place.

Ironically, we understand that the unit in the programme does offer a full range of psychological, multi-disciplinary interventions. These appear to have been completely sidelined in favour of the ‘charismatic doctor’ narrative – somewhere between Dr Findlay and Dr House. The programme, the representation of the unit’s work, and the depiction of the despair that can follow childbirth, were very much the poorer for this editorial choice.

It is interesting for me to note that, at the time when I reviewed the two programmes, I wondered whether perhaps My Baby, Psychosis and Me was a psychiatric publicity piece aimed at attracting additional funding.  I later discovered that the charismatic doctor, Alain Gregoire, had not only been the mastermind and driving force behind a £365 million funding stream that was in the process of being awarded to supplement perinatal mental health provision in the UK over the next five years but he also founded, and is chairman of, the Maternal Mental Health Alliance.  Describing itself as ‘a coalition of national, professional and patient organisations’, this formidable association has a membership of over 70 organisations. These include a dazzling array of royal colleges and national mental health, childbirth and family support professional bodies, most of the national mental health organisations and many facilities, helplines and centres from both across the UK and local ones.  In addition to all of this, the ubiquitous psychiatrist is a member of the NICE Guideline Development Group for Antenatal and Postnatal Mental Health, and has contributed to the development of policy guidance and clinical services in the UK and abroad.  These will just some of the main entries on what must be an awesome CV.

In one respect, I take my hat off to Dr Gregoire for clocking up such an impressive list of achievements and commanding such tangible influence.  I am not questioning his sincerity.  It is clear that he believes utterly in his world view and, in that sense, what you see is what you get. But while his ubiquity – the result of his passion, extraordinary drive and energy – is undeniably impressive, the net result of it is that he has a finger in about every influential pie there is, from policy making and advising the government to instructing national charities and, effectively, determining the shape of the treatments and services on offer in his chosen field.

The Everyone’s Business strategy – sorry, campaign – delineates an initiative to spread a comprehensive web of community perinatal teams across much more of the country and provide many more hospital beds for women with perinatal distress. At face value, that sounds positive. But then I read, in Alain Gregoire’s introductory message on the MMHA site:
“…we have trained midwives and health visitors to be able to spot the signs of mental illness”
and felt the same misgivings I do when hearing about schemes to identify and intercept youngsters in school who are exhibiting symptoms of mental health problems, as defined by the DSM. This is despite some of the research findings quoted on the website:
‘Women put their mental health problems down to trying to live up to unrealistic expectations and a lack of support in the main’,

‘Around half (of them) thought the main cause was isolation, financial pressures and relationship problems exacerbating their symptoms. 40% had suffered a traumatic birth’. 

… biological illness, to be ‘treated’ with electric shocks to the brain? Or understandable response to difficult life circumstances?

I was particularly concerned to discover that an upcoming project Dr Gregoire speaks about particularly passionately is an initiative to establish ‘national quality standards’, and offer ‘dedicated high-quality training’ to third sector organisations (charities, voluntary groups and so on). 

He expands:
“We are looking to develop a toolkit that will assist third sector organisations to develop standards of best practice”.
‘Template protocols’ will be used, and a government document will be drawn up to ‘enable’ this.  I guess eliminating potential competition would be the next logical move were we discussing business strategy and not health care here …
My concern is the increasing reach of the patriarchal state attempting to draw everyone under the net of statutory ‘care’.  My perspective might appear jaundiced and uncharitable, a far cry from the glitzy spectacle of the sparkly and feelgood VMG Mind Awards ceremony.  However, if we consider the concept ‘Everyone’s Business’ from a different angle – reflecting on the effective guarantee of considerable economic gain for those who align with this influential initiative under the MMHA banner – and think about Mind’s statement that it offers awards
to reward (those) who report responsibly and sensitively on mental health issues’,
we can perhaps see a pattern of mutual back-scratching beginning to emerge.

In short, things are very cosy for those who inhabit the ‘medical model’ belief system – who are happy to embrace diagnostic labels cheerfully and buy the claim that all we have to do to revolutionize society’s attitudes to those in altered states, and implicitly turn the tide of the epidemic of problems of this type, is be more open about the ‘illness like any other’ that has emerged from nowhere to disrupt our lives.

The authors of the open letter wrote again as a group, this time to Paul Farmer (CEO of Mind), when we heard My Baby, Psychosis and Me had been shortlisted for an award, asking how the portrayal of ‘mental illness’ as:
 ‘a biological condition that strikes randomly out of the blue, and can only be managed by very high doses of drugs, can do anything to ‘challenge common perceptions of mental health”

We pointed out:
‘Rather, it reinforces all the most simplistic and damaging stereotypes’,

In relation to the awards’ stated criteria, we said:
 ‘In our view, the programme cannot possibly be described as ‘well-crafted and responsibly produced’ or ‘safe for intended audiences’.

A reply arrived, following a prompt, some weeks late. It assured us:
“(Mind) know that (promoting the voice of lived experience) helps create positive attitudes towards mental health and dispels some of the stigma”.

We wrote back:
“In our view this programme falls so far short of meeting the award criteria that its shortlisting raises serious questions about the reputation, purpose and standing of the award. Mind have a responsibility to give leadership and direction, as well as to be responsive to service users and others. We are disappointed that your response does not seem to recognise this.

We do not accept your claim to “know” that programmes about distress reduce stigma.  Scientific evidence suggests that the extent to which they do this depends on the precise content of the messages conveyed. Numerous studies have shown that messages which promote biomedical models – as did ‘My Baby, Psychosis and Me’ – are actually associated with more negative attitudes and behaviour. You may have service users on your shortlisting panels who liked that programme, but not all service users responded the same way and some were very distressed by it. Presumably they aren’t on your panels: maybe you need to be able to hear their views, too?”

We received no reply to this further communication.  The ceremony – described as  ‘a fun evening’  in one piece of marketing publicity – reached  its lowest point, as far as I was concerned, when impressive mainstream territorial gains by the film’s true protagonist (the charismatic, patriarchal Chair of the Maternal Mental Health Alliance) received their due reward.

In the introductory patter to the award presentation, Alain Gregoire was publicly lauded for his courage and implicitly progressive outlook in allowing a film crew into his hospital, with all the risk that entails.  However, as I observed before, the guy’s a showman, and an empire builder too; on a mission and with a messianic gleam in his eye.  This was, in fact, exactly the opportunity he needed to further his cause. 

The way the filmed footage was framed certainly made depressing and disturbing viewing, from where I was sitting.  I’ve never referred to the end result as a documentary, because to my mind a documentary worthy of the name involves searching and subtle journalism with some depth to it.  My Baby, Psychosis and Me is more of a reality programme, showcasing psychiatric approaches and implying they’re becoming more sophisticated, rather than progressively questioned and discredited (as decade upon decade goes by and their purported scientifically-based tenets are further shown to be based merely on intra-profession consensus opinion. 

These days, it doesn’t seem to matter what is put out there … people seem to be looking the other way. I just hope it hasn’t cost Gregoire’s subjects dear, agreeing to take part in such a public spectacle with necessarily ongoing ramifications.

It is important to establish that I’m not commenting on the event as a whole here, but focussing on the controversy surrounding this single award. My aim is not to dispute that better perinatal support and facilities are urgently needed in the UK either.  But it is essential that questions are asked in spite of the reassuring atmosphere created by brightly furnished, wholesome and welcoming brand new hospital and community spaces – some fluffy and comforting, others practically helpful – that either already exist or are planned under the Everyone’s Business crusade.  These are questions about assumptions and policy-dictating beliefs about perinatal distress which the allies in the MMHA subscribe to, either consciously or unwittingly.

Claims about rectifying ‘the lack of knowledge about this issue’; that it’s essential people access the ‘right’ help at the ‘right’ time (reinforcing the underlying, reassuring acceptance we were all brought up with: that ‘doctor knows best’) are woven insidiously into the rhetoric of its literature and the rationale behind the Everyone’s Business empire.  They beg all the most crucial questions about what counts as ‘knowledge’, what is the ‘right help’, and who delivers it.  But My Baby, Psychosis and Me suggests how we could fill in some of those blanks, and the picture is not reassuring.  Expect a revival of ECT, a reinforcement of psychiatrists’ roles, and further marginalisation of a psychosocial perspective on women’s distress.

The credibility and motivation of Mind has been in the public eye in recent weeks because of its support for DWP policies that the Mental Health Resistance Network say has damaged people in mental distress.  At a protest organised outside Mind’s headquarters, Paul Farmer came down to placate protesters with reassurances which, later that day, were exposed as lies. In the mental health world in general, National Mind has spectacularly fallen from grace for many and is no longer considered representative of the diverse community of those currently using services, survivors and their families (although local branches of Mind have a degree of independence from the parent organisation and sometimes take a very different stance.) None of these controversies was apparent from yesterday’s ceremony, though, which was on a par with the BAFTAs or Children In Need. The influence and prominence of National Mind and its CEO appears to have been secured at the cost of uncritical promotion of the ‘illness like any other’ remit, eagerly disseminated through the anti-stigma campaign ‘Time to Change’ and at any other opportunity. 

I think we can see the way all this works.  So, while this morning I’ve seen tweets written by people feeling ‘blissed out’ by positive vibes and inspiration from yesterday evening’s star-studded, feel-good ceremony, personally I’m neither inspired, reassured or encouraged.  We have a very long way to go to develop services based on people’s actual needs, and the ideological forces are pulling the other way.  The very least we can do is be aware of this, challenge the narrow biomedical message, and keep the alternative perspectives alive.