Kalathil & Faulkner: Racialisation and knowledge production: A critique of the report ‘Understanding Psychosis and Schizophrenia’

Racialisation and knowledge production: A critique of the report ‘Understanding Psychosis and Schizophrenia‘ by Jayasree Kalathil and Alison Faulkner, Mental Health Today, Jan-Feb 2015, 22-23

Introduction;

understanding psychosis pageNovember 2014 saw the launch of Understanding Psychosis and Schizophrenia by the British Psychological Society’s (BPS) Division of Clinical Psychology (Cooke (ed), 2014). The report undertakes an overview of what we know about why some people hear voices, experience paranoia or have experiences generally termed ‘psychosis’ or diagnosed as ‘schizophrenia’,and offers ways of helping people undergoing these experiences.

The report was hailed, at its launch in London, as heralding a ‘paradigm shift’ and received widespread positive media coverage. It is an impressive, aspirational document, beautifully illustrated and easily accessible to a lay audience. More than a quarter of the 24-member working party who contributed to the report were people who had direct personal experience of hearing voices, paranoia and receiving a diagnosis of psychosis or schizophrenia. While not entirely critical of bio-medical approaches in understanding and treating psychosis, the report points out the limits of these approaches and calls for other approaches to be given equal consideration.

However, there is a conspicuous absence in the report of any meaningful engagement with the more than 60 years of scholarship about ‘race’,ethnicity and psychiatry/psychology, especially around the theorisation and experience of schizophrenia. This lack of engagement is also evident in the absence of professionals or service users/survivors from racialised communities in the working party and in the apparent lack of attempt to gain their views in its production. In this article, we ask whether it is possible to talk about paradigm shifts in the context of psychosis and, especially, schizophrenia while not addressing issues relating to black and minority ethnic (BME) communities, arguably communities most affected by how we collectively understand and work with these diagnostic and ontological categories …

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‘From patient centred to people powered: autonomy on the rise’ Dave deBronkart, BMJ

b3539-bmjimageFrom patient centred to people powered: autonomy on the rise‘ 10 February 2015

Dave deBronkart, speaker, policy adviser, and co-chair, Society for Participatory Medicine, 17 Grasmere Lane, Nashua, NH 03063, US; dave@epatientdave.com

Analysis Spotlight: Patient Centred Care, BMJ 2015;350:h148

“Following in the path of feminists and civil rights leaders, informed patients are building a progressive social movement to improve medical care. Dave deBronkart says medicine should let patients help improve care, share responsibility, and think for themselves

The practice of medicine is intellectually demanding: it requires specialised skills and decades of training and experience. Understandably, the accepted model that has guided us for centuries is “doctor knows best.” As recently as 2001 the American Medical Association proposed this new year’s resolution to patients:

“Only your physician has the necessary experience and expertise to diagnose and treat medical conditions. Trust your doctor, not a chat room.”

A decade later pronouncements from the Institute of Medicine, the Mayo Clinic, the World Health Organization, and others suggest that patients—individuals without specialised training—should be treated as genuine, value contributing partners in the work of medicine.

If the American Medical Association in 2001 and the Belgian government (which ran a paternalistic “Don’t google” your health problems campaign last year5) are right, then the Institute of Medicine and WHO have gone mad. But I believe the opposite is true and that our thinking must change.

Inclusive approach

I have recently been appointed the 2015 visiting professor in internal medicine at the Mayo Clinic, simply on the basis of my experience with my disease and my subsequent work to change medicine’s thinking so others might benefit. I don’t reject physicians (they saved my life), and I don’t assert that patients know everything. I do know first hand that patients can truly add value, and explain why in my book, Let Patients Help.

A growing movement, exemplified by the Society for Participatory Medicine (www.ParticipatoryMedicine.org) and the annual Stanford Medicine X conference (http://medicinex.stanford.edu/), asserts that patients and clinicians must collaborate. Central to its belief is that whereas the physician brings training and clinical expertise, patients bring their life experience, their deep investment in the outcome of their case, their skills and resilience, and a unique perspective on needs and priorities. The movement recognises patient autonomy as a valid priority and patients’ hearts and minds as essential contributions to the best possible care. We believe that medicine cannot achieve its potential if it ignores the voice of thinking patients.

This movement is not anti-physician, it’s about partnership. When I had cancer diagnosed, I received the very best care I could find, but I didn’t sit back and expect to be saved: I joined an online patient community, and my oncologist says that members’ practical advice may have helped me to tolerate the treatment that saved my life. What if I’d followed the AMA’s advice and stayed away from chat rooms?

The internet has let many such “e-patients” (empowered, engaged, equipped, enabled) be heard by other patients, physicians, and policy makers (box). Dozens have served as “e-patient scholars” and advisers to MedX and other forums. In so doing they are growing a new reality, contributing to improved care for themselves and others. They are creators of a social movement, a shift in roles as profound as women’s liberation, racial equality, gay rights, and disability rights …

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‘Medical corruption in the UK’ Fiona Godlee, BMJ; Response from Dr Peter J Gordon

Medical corruption in the UK Fiona Godlee, editor in chief, The BMJ, 29 January 2015; BMJ 2015;350:h506

“Last year The BMJ launched an international campaign against corruption in healthcare. A single article was the spark: a personal view about the endemic culture of kickbacks to doctors in India (doi:10.1136/bmj.g3169). The campaign received widespread support from Indian doctors and the media, and it seems to have led to some positive change, if not yet enough. In an unprecedented move India’s then health minister acknowledged that corruption was a big problem. The government set up a special committee and has banned gifts to doctors and conference sponsorship by drug companies. The Indian Medical Association is working on a new code of medical ethics for private hospitals. And the Medical Council of India, which regulates India’s doctors, has committed itself to act against any doctors reported to have received kickbacks.

A linked editorial made it clear that India was not alone in having a deeply embedded culture in medicine of tolerance to and even promotion of corruption (doi:10.1136/bmj.g3169). If anyone doubted this, recent news from the United States suggested that healthcare corruption was equally endemic there. On top of evidence that the US loses billions of dollars each year to medical embezzlement (http://econ.st/1BuAiFW), high profile cases are now making clear the mechanisms and the human cost. Six doctors in Chicago are currently being prosecuted for allegedly taking kickbacks. Their alleged crimes includes referring patients to hospital who didn’t need admission and performing unnecessary but lucrative tracheotomies, leading to avoidable deaths (doi:10.1136/bmj.h22).

Nor, sadly, is the United Kingdom immune. A BMJ investigation published this week reports clear evidence of UK doctors receiving covert financial inducements to refer patients to private hospital groups. Some London based doctors have benefited by tens, sometimes hundreds, of thousands of pounds (doi:10.1136/bmj.h396).

No doubt the beneficiaries will include some of the pillars of Britain’s medical establishment. Also no doubt most of those involved will believe that they themselves cannot be bought. But even if that were true, it is the perception of conflicts of interest that matters, as well as the reality. How many doctors enjoying free use of consulting rooms will have explained to a patient: “I am referring you to this hospital (or moving you to this other hospital) because I have a contract with them that rewards me for doing so”?

Some of the beneficiaries might argue that the UK’s General Medical Council has no specific guidance on private sector inducements, and they would be right. The GMC’s failure to provide such guidance, and its apparent reluctance to act on information about kickbacks that was presented to it in 2012, are the focus of a linked editorial (doi:10.1136/bmj.h474). But even without clear guidance or action from the GMC, it seems obvious that referral for any reason other than because the patient’s best interests require it contravenes professional ethics. Gornall reports that some doctors were offered inducements but declined for this reason. And one notable private hospital group keeps well away from inducements, preferring to compete on the quality of the service it provides.

The profession must take the lead to protect patients and maintain public trust. The GMC should act, and a public register of UK doctors’ financial interests is long overdue.”

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Response: ‘Re: Medical corruption in the UK‘ by Peter, J. Gordon, Psychiatrist for Older Adults, NHS Locum, 31 January 2015

“Fiona Godlee, Editor of the BMJ, has concluded that: “The profession must take the lead to protect patients and maintain public trust. The GMC should act, and a public register of UK doctors’ financial interests is long overdue.”(1)

In response, Niall Dickson, Chief Executive of the GMC, has stated that: “Our guidance is comprehensive and clear in respect of the responsibilities of individual doctors and we have taken appropriate action against individual doctors in the past where there has been evidence that our guidance has been breached”. (2)

I have petitioned the Scottish Government for a Sunshine Act regarding health professionals’ financial conflicts of interest. (3) This was considered most recently at the meeting of the Petitions Committee on 27th January. The evidence accumulated so far demonstrates that existing Scottish Government guidance, in place since 2003, has never been followed in NHS Scotland. FOI response from the GMC confirms that no doctor has been formally investigated in Scotland for breaching guidance on financial interests. (4)

Niall Dickson has stated on behalf of the GMC that “Parliament has not given us powers”. It would seem that Fiona Godlee has correctly identified what needs to be done, and it is clear that governments will need to act.”

References:

(1) Godlee, F. Medical corruption in the UK. 29 Jan 2015 http://www.bmj.com/content/350/bmj.h506
(2) Dickson, N. The GMC responds to the special report in the BMJ on regulating doctors’ financial and commercial interests; 29 Jan 2015 http://www.bmj.com/content/350/bmj.h396/rr
(3) Gordon, P.J. PE01493: A Sunshine Act for Scotland http://www.scottish.parliament.uk/GettingInvolved/Petitions/sunshineact
(4) General Medical Council response to Dr Peter J Gordon. F13/5915/EH; dated14 Jan 2014

 

‘Do you know what your patient is thinking?’ response on BMJ 28 Jan15

bmjimageRe: Do you know what your patient is thinking?‘, BMJ response, 28 January 2015

Mitzi A J Blennerhassett, medical writer/author, Slingsby, York

“When we are ‘new’ patients, we usually find ourselves in an unequal situation, with less knowledge about our condition than our doctors, dependent upon them for information as well as for their clinical expertise. Even as a seasoned patient activist, with ‘expert’ knowledge and experience about my medical condition, I still find myself disempowered in clinical consultations, mostly unable to say what I am thinking or feeling. This disempowerment is even stronger when I sense I am being patronised: frustration and outrage begin to overtake my wish for rapport and mutual understanding.

Imagine being unable to access treatment for midline lymphoedema that is seriously affecting your quality of life – clothes do not fit – the extra weight exacerbates painful conditions. Yet when you comment that it seems unacceptable you cannot access lymphoedema treatment for this side effect of the nhs cancer treatments the response is ‘but it was those very treatments that have kept you alive all this time’.

I wanted to say, ‘I do not need reminding that I am lucky to be alive – and I am reminded of the treatments by the daily pain of side effects’. Yes, I am lucky, but I should not have to preface all my requests for treatment side effects with thanks for being alive.

Doctors’ words can be well-meaning – perhaps trying to make patients see the positive side of life – but it felt as if I was being told to be grateful. The lack of understanding took my breath away, but before pent up tears choked me into silence I managed to answer, ”That’s like saying to someone, ‘What are you crying about? You’ve had a mastectomy and lost a breast – but you’re still alive!’

I was reminded of the doctor who, after aggressive cancer treatments, dismissed my request for my prognosis and TNM staging with, ‘What’s the matter with you …why don’t you go out and get on with your life!’

As a patient advocate, I have been very fortunate to be able to work alongside patient-centred health professionals trying to improve health services. I suppose I have become used to being treated with respect and having normal social interaction with doctors. Nowadays, it is easy for me to distinguish between those health professionals who have had experience of user involvement and those who have not. And it hits hard when, as a patient, I come up against such old-fashioned attitudes.

It was the need to let doctors and others know what I had been thinking and feeling during my experience of cancer that prompted me to write my book, and to include discussion sections after each event looking at the effects on me, along with research references for better practice. Almost without exception, patients and doctors’ feedback has been that it should be read by every doctor and nurse because it allows the reader to ‘get inside the patient’s head’.”

 

“Undiagnosing” dementia – Letter in BMJ, Dr Peter J Gordon

bmjimage“Undiagnosing” dementia in the BMJ

Peter J Gordon, locum NHS psychiatrist for older adults

in Letters:Target diagnosis rates in primary care.  Published 20 January 2015

BMJ 2015;350:h290

“Brunet raises the difficult subject of “undiagnosis.”1

Scotland, long before England, had a financially incentivised target for “early diagnosis” of dementia. This was HEAT target 4, which was set for all 12 NHS boards deployed at secondary rather than primary care level.2

The Scottish government, having reached this target, has not shied away from stating that it did “quite well” in reaching the target.3

As a specialist doctor in dementia I am now facing the return of elderly people who were diagnosed with “early Alzheimer’s disease,” but who many years on show no signs of dementia (they do not fulfil clinical diagnostic criteria for dementia and have shown no signs of progression).

These people thought that they had dementia or “Alzheimer’s.” Some have lived with this for seven years or more. They have generally had post-diagnostic counselling, and families and friends have also adapted to the diagnosis. Driving, autonomy, and insurance may all have been affected.

In many cases this was the direct result of an approach based on “early diagnosis” set as an incentivised target.

If we must have a target based approach (which I very much doubt), ethics must be considered from the outset.”

Notes

Cite this as: BMJ 2015;350:h290

Footnotes

  • Competing interests: None declared.

References

  1. Brunet M. Target diagnosis rates in primary care are misleading and unethical. BMJ2014;349:g7235. (2 December.)
  2. Scottish Government. HEAT standard. www.scotland.gov.uk/About/Performance/scotPerforms/partnerstories/NHSScotlandperformance/DementiaStandard.
  3. All-Party Parliamentary Group on Dementia. Inquiry. How to improve dementia diagnosis rates in the UK. Minutes of the oral evidence session 13 March 2012:26. www.alzheimers.org.uk/site/scripts/download.php?fileID=1396.