Schizophrenia care: cause for concern or catastrophe?

03Dec12

Last month, the mental health charity, Rethink Mental Illness, published The Abandoned Illness, an 88 page report about schizophrenia and its care in England.

For its report, Rethink commissioned a panel of 14 individuals with professional and personal experience of this severe mental illness, which for many can be debilitating and chronic. In preparing their very readable report, the panel, known as the Schizophrenia Commission, visited services and gathered evidence from a wide range of sources who are affected by or involved in their care.

While the illness often causes confusion, uncertainty and sometimes fear, The Abandoned Illness provides a good explanation of psychosis, schizophrenia and the issues involved. The report’s publication also brought an opportunity to raise awareness and receive more sympathetic media attention than usual. However, among this coverage there was an emphasis on “catastrophic failings” in care and the “scandal” of schizophrenia’s reduced life expectancy, though neither of these quoted descriptions appear in the report itself.

The Abandoned Illness cover

Findings and Progress

The Abandoned Illness reports an estimated prevalence for schizophrenia of 0.5% and particularly emphasises the costs incurred. These are both personal (a reported reduction in life expectancy between 15 – 20 years) and financial (an estimated £11.8 billion cost to society in England). Yet despite initiatives for equity of care, such as the UK Government’s recently published strategy ‘No Health without Mental Health’, there remains a disparity in funding; “mental illness accounts for 23% of the disease burden and 13% of resources”.[1]

The Schizophrenia Commission also uncovered serious concerns over some hospital settings. “We heard of many acute units which were stressful, chaotic and scary places. No one seemed to be in charge. Violence, theft and sexual harassment against staff and patients, boredom, poor environments, lack of activity or staff-patient engagement were highlighted as criticisms. Un-therapeutic services, characterised by a sense of hopelessness, staff who do not engage with patients, together with bleak décor and furnishings, can lead to people reacting badly to their hospitalisation.” They also observed that in some units “medication is prioritised at the expense of the psychological interventions and social rehabilitation which are also necessary.”

The report concludes that “the current system of care and support for people with schizophrenia and psychosis, and their families, is failing both them and the taxpayer”. With such a dim description of care, you might be surprised that anyone with psychosis could ever have a positive experience within the NHS.

Fortunately, The Abandoned Illness also reports that there is more understanding and improvements in treatment. The report observes “in the last 20 years much progress has been made in understanding schizophrenia and psychosis. There have been many positive developments including the growth of the service user movement, initiatives like crisis resolution teams and early intervention for psychosis services, exercise prescriptions, investment in new IT systems and direct payments. There are now more single sex acute care units with individual rooms, flexible day centre provision and multi-disciplinary team working”.

There is also acknowledgement that “the mental health workforce is made up of very many committed individuals who strive, sometimes in very difficult circumstances, to provide quality support to people living with severe mental illness. This is recognised by service users and their families.” The Commission adds “we have been impressed by accounts of how individual practitioners or whole services have transformed lives through approaches emphasising the potential for recovery and through listening to people’s experiences”. One Commission member even states “what has struck me from listening to evidence and visiting services is how far we have come since my mum was first diagnosed with schizophrenia in the 1960s.”

Discrepancies in presentation and media coverage

Given those favourable observations, the report’s title seems inconsistent and isn’t fully explained. Nor is it clear why media coverage quoted findings of “catastrophic failings” when the Abandoned Illness doesn’t include any version of the word “catastrophe”. That comes from Rethink’s press release, which begins ominously; “Inquiry highlights ‘catastrophic failings’ in treatment of  people with schizophrenia and psychosis…”

On enquiry with Rethink’s media department, assurance was given that the title and “catastrophic” quotes were agreed by the Commission who “felt it was necessary to draw attention to these problems in order to get action taken, and the tone of the press release and the title of the report reflect that”. Further communication with individual Commission members confirmed agreement with this approach. Meanwhile, such concerns over presentation may seem trivial when the Commission’s Chair, Professor Sir Robin Murray, states in the report’s forward “what we found was a broken and demoralised system that does not deliver the quality of treatment that is needed for people to recover. This is clearly unacceptable in England in the 21st century.”

However, eye-catching descriptions of ‘abandoned’ and ‘catastrophic’ did indeed set the tone for how the Abandoned Illness was reported to the general public. Furthermore, as the title is derived from ‘The Forgotten Illness’ – a series of reports about the lack of services and treatments for people with schizophrenia written 25 years ago by Marjorie Wallace, founder of the mental health charity SANE – there is an impression that care for schizophrenia has always been bad and at best, remains so. Certainly what other conclusion could be drawn from the headline “Patient care of schizophrenics at ‘all-time low’, claim experts”, which featured in the Independent on the day the Abandoned Illness was published in a piece written by Jeremy Laurance, the paper’s health editor and the only journalist member of the Schizophrenia Commission.

My concern about this approach is not for being blind to the state of psychiatric care. I can well believe that the Commission heard examples of “shameful” care as outlined in their findings above. These resonate with what a personal source observed in 2010 during a week-long voluntary admission on an acute ward in England which included;

1. For some of the time there was just one toilet between 22 men. Other WCs were broken, locked, blocked.

2. Electricity went off twice as rewiring was carried out leading to a most unwelcome Halloween atmosphere.

3. Patients had to ask staff to open showers and baths to wash. Sinks were regularly blocked. Faeces was found in the shower tray, urine was found in a bath. Patients were left to clean these alone.

4. Patients were not given copies of their care plan and in some cases were unaware of their named nurse.

5. The activity room on the ward was permanently closed leaving detained or observed patients with only the chance to continually walk the short corridors of the locked ward as our exercise.

Clearly such conditions would not pass the Commission’s “friends and family” test and its bar-setting standard “would you want your relative treated in such a unit?” Thus, I entirely agree that the Abandoned Illness is right to highlight the acute care that some patients encounter.

My fear is that despite the progress that the Abandoned Illness describes and its advice to health professionals to encourage hope, the report’s presentation practically emphasised expectations of failings in care. Although some positive stories did appear in the media – particularly Commission member, Liz Meek, speaking on Radio 4’s You and Yours about her daughter’s experience – often these were presented as occurring in spite of faulty services. There was also reinforcement of many of the associations that the Abandoned Illness wants to reduce, such as describing acute units as ‘madhouses’.

Prof Appleby tweet

One mental health expert who shared my discomfort about the presentation of the Abandoned Illness was Professor Louis Appleby, National Director for Health and Criminal Justice and Professor of Psychiatry at the University of Manchester. Through twitter (@ProfLAppleby), he described the report as a “thoughtful, modern account of how mh [mental health] care can work – almost lost in media message of “madhouse” & catastrophic failure.” He also tweeted concern that such descriptions could have a negative effect on the “patient needing admission next wk (to a madhouse?) & morale of staff who are “failing””.

While it’s understandable that the Abandoned Illness would want to promote a message of recovery and hope, it often downplays issues around risk, both to the public and the individual’s health and well-being. Asserting that increasing use of measures of coercion such as Community Treatment Orders are indicative of failure may also be misleading when this measure was only introduced in England in 2007, is subject to a high degree of legal scrutiny and can indicate good practice, which facilitates autonomy and reduces relapses outside of acute settings. There is also limited indication in the report of why caring for people with psychosis and schizophrenia can be very difficult for health professionals because mistrust is itself a feature of their presentations.

The life expectancy ‘scandal’

Criticism of a different order concerns the attention that the Abandoned Illness makes about schizophrenia’s reduced life expectancy while also calling for evidence-based interventions. The implication being that through the report’s favoured programmes such as Early Intervention Services (EIS) – a dedicated service provided for up to three years to young people presenting with first signs of psychosis – and specialist psychological therapies for psychosis, these measures that currently have limited accessibility across the UK will improve life expectancy to levels approaching the general population.

While such interventions sound attractive and EIS may have some effectiveness in initial care and reduce suicidality, it remains to be seen whether life expectancy is extended. Meanwhile, the impression is given that what’s beneficial about these treatments aren’t available in any other form of mainstream mental health care, even though much of how nurses, social workers, doctors and psychologists work is by listening, engaging and working with individuals and their families. This may even include cognitive behavioural approaches that are at the limits of what some individuals with psychosis can tolerate. Thus, while it is likely that levels of care across the UK still need to improve, that’s not to say that current services that lack EIS or specialist psychological interventions are providing inadequate care.

Additionally deserving of scrutiny is the frequently cited figure of a 15 – 20 year reduction in life expectancy. Often the Abandoned Illness appears to imply that the reason for this discrepancy – which Schizophrenia Commission members Jeremy Laurance and Rethink’s Chief Executive, Paul Jenkins subsequently described as a ‘scandal’ – is due to health care deficiencies.

Clearly a reduced life expectancy is cause for concern by anyone involved in caring for those with schizophrenia. However what remains unclear is how much of this is unique to schizophrenia, as other serious mental illnesses such as bipolar affective disorder and depression also have reduced life expectancies of approximately 10 years (Chang et al 2011). Certainly people with schizophrenia are more vulnerable to developing physical health problems, some of which are associated with side-effects from antipsychotic medications that have risks but can improve outcomes. There are also many barriers to care for people with schizophrenia, though the illness itself reduces motivation for seeking health care in individuals, who are also more prone towards unhealthy lifestyles such as smoking, poor diet and inactivity.

While that shouldn’t be grounds for complacency, by emphasising total reduced life expectancy without context, the Abandoned Illness and Rethink risks creating unrealistic expectations of care that no health service, however well resourced, can achieve.

Recommendations and costs

Despite these issues over presentation and an ambiguous title, there is much to commend about the Abandoned Illness. As well as the points described above, the report directly addresses current themes about schizophrenia such as the debate over its diagnosis, the impact of ethnicity and the role of families and carers. It also considers how to raise greater awareness, reduce stigma and highlights social issues around employment, housing and welfare reform.

In addition, the report provides 42 recommendations for agencies such as the UK government, professional bodies like the Royal College of Psychiatrists and mental health providers among others. As a general adult psychiatrist, I particularly welcome;

A radical overhaul of poor acute care units including better use of alternatives to admission (No. 19) 

Greater partnership and shared decision-making with service users (No. 4)

Much better prescribing and a right to a second opinion on medication (No. 12)

Delivering effective physical health care to people with severe mental illness (No. 13)

A stronger focus on prevention including clear warnings about the risks of cannabis. (No. 16)

Psychiatrists must be extremely cautious in making a diagnosis of schizophrenia (No. 32)

NB: Numbers in brackets refer to the respective recommendation listed on pages 79-83 of the report.

Meanwhile, the Abandoned Illness is under no illusion that the most likely future concern is cost – particularly the disproportionate funding given to secure (forensic) care, which they state should be better distributed – and that “no one should claim that we can afford to leave things as they are.”

Thus for forensic consultant psychiatrist and Commission member, Dr Shubulade Smith, the report’s importance is as a reminder “that what we are providing is not quite good enough at a time when the economic crisis means that mental health services are likely to be cut further and therefore suffer”.

[1] The costs to society and the public sector are outlined in more detail in a supplementary 44 page report, Effective Interventions in Schizophrenia, which Rethink commissioned from the London School of Economics

Chang et al (2011) Life Expectancy at Birth for People with Serious Mental Illness and Other Major Disorders from a Secondary Mental Health Care Register in London. PLoS ONE 6(5): e19590. doi:10.1371/journal.pone.0019590

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