Schizophrenia care failings outlined

Behind the Headlines

Wednesday November 14 2012

Care for people with schizophrenia has been criticised

“Patient care of schizophrenics at all time low”, The Independent has reported, while Sky News called the treatment of schizophrenia patients “shameful”, and the BBC said care was falling “catastrophically short”.

The stories are based on a report from the Schizophrenia Commission, an independent group of experts that has conducted a year-long inquiry into schizophrenia care in England. The report says that 100 years since the term schizophrenia was first coined, it remains a stigmatised and misunderstood mental illness. The Commission says that, despite progress in some areas, it found “a broken and demoralised system that does not deliver the quality of treatment needed for recovery”.

The report says that wards for people with schizophrenia have often become frightening places where staff are under such pressure that there is little basic care or support and medication is given priority over psychological and social help. Increasing numbers of people are having compulsory treatment because they are unwilling to be admitted to such wards voluntarily, while early intervention services – the “great innovation” of the last 10 years – are being cut.

The report calls for a radical overhaul of poor acute care. It recommends that funding is re-directed from secure units to intervention in the early stages of the illness.

While the Schizophrenia Commission’s report starkly highlights the current problems with schizophrenia care, it also presents evidence of the best types of care and offers these as examples of ways to improve care where it is now inadequate.

 

How has it been reported?

The report was widely and, for the most part, fairly covered in the media. The Independent included a useful section explaining schizophrenia. However, in its headline the paper referred to “schizophrenics”, a term now considered pejorative as it labels people with their condition. Other news outlets used more appropriate terms such as “people with schizophrenia”.

 

Where has this information come from?

What is schizophrenia?

Schizophrenia is a long-term mental health condition that causes a range of different psychological symptoms. These include:

  • hallucinations – hearing or seeing things that do not exist 
  • delusions – unusual beliefs that are not based on reality
  • muddled thoughts based on the hallucinations or delusions
  • changes in behaviour

Doctors describe schizophrenia as a psychotic illness. This means that sometimes a person may not be able to distinguish their own thoughts and ideas from reality.

The exact cause of schizophrenia is unknown. However, most experts believe it is caused by a combination of genetic and environmental factors.

The report has been produced by the Schizophrenia Commission, an independent body of 14 experts in mental health. The Commission was set up in November 2011 by Rethink Mental Illness, a charity which campaigns for a better quality of life for people with mental illness and provides advice and information to them and their families.

The Commission was set up to review how outcomes for people with schizophrenia and psychosis can be improved, and was chaired by Robin Murray, Professor of Psychiatric Research at the Institute of Psychiatry, Kings College, London. The Commission ran six formal sessions to gather evidence about care from people with schizophrenia, their family members and carers, health and social care practitioners, and researchers.

A further 2,500 people responded to an online survey. The commissioners also visited services across England and drew upon published research. They focussed in particular on adult mental health services, but also considered care services for young people, those in the criminal justice system, the homeless, and those with additional problems such as substance misuse.

 

What are the problems with schizophrenia care?

The report outlines a series of concerns regarding inadequacy of care for people with schizophrenia and also how people with psychosis experience greater distress and worse outcomes because of the inadequate care they receive. Most spend time in a psychiatric hospital, where too many of these wards have become frightening places, with “overwhelmed” nurses who are unable to provide basic care and support, the report says.

The pressure on staff for increased “throughput”, it says, means that medication is prioritised at the expense of psychological interventions and social rehabilitation. In one of its most sternly-worded passages, the report says: “Some wards are so anti-therapeutic that when people relapse and are in need of a period of care and respite, they are unwilling to be admitted voluntarily; so compulsion rates rise.”

However, the problems were not limited to wards. The report says that people with psychosis rarely have the chance to choose their psychiatrist and families are not treated as partners in care, but have to battle for basic services.

It also reports that the policy of “early intervention in psychosis” services – which was seen as the “great innovation” of the last 10 years – is currently being cut. According to Professor Murray, “The poor quality of care offered to people with psychosis is particularly shameful because, in the last two decades, we have made great strides in understanding mental illness”.

The report points out that:

  • people with severe mental illness, such as schizophrenia, still die 15-20 years earlier than other citizens
  • increasing numbers of people are having compulsory treatment, in part due to the state of many acute care wards
  • levels of coercion have increased year-on-year and were up by 5% in the last year
  • too much is spent on secure care – £1.2 billion, which was 19% of the mental health budget last year – with many people staying too long in expensive units when they are well enough to start back on the route to the community
  • only 1 in 10 of those who could benefit, get access to true CBT (cognitive behavioural therapy) despite it being recommended by NICE (National Institute of Health and Clinical Excellence)
  • only 8% of people with schizophrenia are in employment, yet many more could and would like to work
  • only 14% of people receiving social care services for a primary mental health need are receiving self-directed support (money to commission their own support to meet identified needs) compared with 43% for all people receiving social care services
  • service users and family members dare not speak about the condition – 87% of service users report experiences of stigma and discrimination
  • services for people from African-Caribbean and African backgrounds do not meet their needs well. In 2010 men from these communities spent twice as long in hospital as the average

 

How can schizophrenia care be improved?

The report highlights that a diagnosis of schizophrenia does not have to mean “inevitable decline”. It says that as well as harrowing accounts of personal tragedies, the Commission heard from many people who had been helped to recover and go on to live happy and productive lives after one or more psychotic episodes. “Good care delivered by kind, compassionate practitioners can make all the difference,” it says, adding, “Being given hope is central to recovery too – gaining control and being empowered to build self confidence and self esteem.”

Writing in the report, Professor Murray says: “If schizophrenia is approached with an understanding that substantial recovery is achievable for most people with the illness, instead of the defeatist attitude that this is the end of a person’s useful life, then we can make a real difference. This is not an expensive fantasy but could lead to an overall saving for the country by turning users of services into contributors to the economy”.

The report makes 42 detailed recommendations, which include:

  • a radical overhaul of poor acute care units, including better use of alternatives to admission, such as “recovery houses”
  • greater partnership and shared decision-making with service users
  • funding redirected from secure units to strengthen community-based provision and prevention programmes
  • tackling poor leadership and variations in the quality of care provided
  • improved prescribing and a right to a second opinion on medication
  • extending GP training in mental illness to improve support for those with psychosis in the community
  • extending the early intervention for psychosis services
  • increased access to psychological therapies in line with NICE guidelines
  • delivery of effective physical healthcare to people with severe mental illness
  • a stronger focus on prevention, including clear warnings about the risks of cannabis
  • a better deal for long-term carers who should be involved in care decisions
  • greater use of personal budgets
  • “extreme caution” in making a diagnosis of schizophrenia, as it can generate stigma and unwarranted pessimism. It says the more general term ‘psychosis’ is preferable, at least in the early stages

 

Where can I get help for schizophrenia?

Anyone who is worried that they or someone in their family has a mental health problem should see their GP. The charity Rethink can offer advice and practical support. Other organisations which may be able to help include, Turning Point, Mind and SANE.

 

Analysis by Bazian. Edited by NHS Choices. Follow Behind the Headlines on twitter.

Links to the headlines

Treatment Of Schizophrenia Patients 'Shameful'. Sky News, November 14 2012

'Catastrophic failings' in schizophrenia care. BBC News, November 14 2012

Patient care of schizophrenics at 'all-time low', claim experts. The Independent, November 14 2012

'Catastrophic' failings in schizophrenia care revealed. The Guardian, November 14 2012

Warning issued over 'catastrophic' schizophrenia care in UK. Metro, November 14 2012

Links to the science

Schizophrenia Commission. The Abandoned Illness (PDF, 1.1MB). Published November 14 2012

Further reading

Rethink. Schizophrenia inforgraphic (PNG, 332Kb). Published November 14 2012

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Comments

The 4 comments posted are personal views. Any information they give has not been checked and may not be accurate.

Able Scribe said on 03 February 2013

Anyone who has lived with symptoms of schizophrenia for a considerable length of time will recognize the perspectives given here: the diagnosable symptoms of sz may be incurably lodged within us and May be a part of our make up, but that does not in itself present a grim or hopeless predicament. This is because our disabilities are also our Attributes. Maybe unwittingly, the psychiatrist's diagnosis undermines these attributes and sets them in a grim light. But really it is a matter of impact, intensity and degree, whether we languish in despair or set about engaging the symptoms as evidence of rare qualities which mark us out as having gifts to be expressed and applied creatively.

What I am saying is: with the right help, a low maintenance dosage of appropriate medication to reduce the intensity of symptom's extremes -one which does not pile on a burden of disability which excessive medicating is apt to do- and some vocational and training guidance, we can be the creative artists that nature intended us to be, using our gifts to master the medium which is best suited to our attributes.

My 'pathway to progress' has been photography. I find that a modicum of seeing things which 'are not there' enables me to apply a creative imagination, to use my mind's eye to envisage the optimal conditions to develop an awareness of the imaging possibilities of any scene I encounter and with my best endeavour, maybe reproduce that on camera.

The lesson from this is never to underestimate the extent to which we all have gifts to express and with the right opportunities, can re-emerge as part of our restitution after the excesses of ill-health have run their course. Facilitators who work in mental health, please take special note!

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Able Scribe said on 18 November 2012

There is a vital stepping-stone missing, both from the Government’s ‘welfare to work’ programme and from the transition for people with schizophrenia from hospital into a restitution in the community. This stone is the therapeutic support and meaningful activity that provides a transition and enables patients to engage fully with the nature of their diagnostic symptoms and restore their balance after what is a very disabling loss of reliability of their senses during psychotic episodes.

Another missing ingredient is the acceptance and inclusion of the wider public of people with this condition, when Employers continue to flout clear legislation forbidding exclusion of people with MH experiences and people blocking pathways to progress for these people need to reconsider their position. Equality of opportunity needs to mean just that and a level playing-field that enables all to participate within our capacity.

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soteria said on 14 November 2012

I am glad to see that the problematics of the 'treatment' of people who are diagnosed with 'psychosis' or 'schizophrenia' are finally being spoken about more widely. This report is to be welcomed. I am part of a group in Brighton working towards the establishment of a Soteria house for people diagnosed with psychosis, a recovery house where the emphasis is on being with rather than doing to, on creating a safe place for people to be when they are experiencing extreme states of mind/body, and on respecting the uniqueness of each person's experience. For more details of our work, please see http://soteriabrighton.co.uk.

Robert Whitaker, who has written two incisive books on the current state of mental health services in the Western World, will be visiting Brighton in December and taking part in a seminar on the problematics of the evidence base at the heart of the Medical Model as well as two alternative community-based approaches which have a strong evidence base, namely the Soteria model and the Open Dialogue model. For more details see the Soteria Brighton website. The Open Dialogue model from Finland has remarkable outcome statistics - around 75% of those diagnosed with psychosis are working or studying again by 2 year follow-up and only around 20% are still taking anti-psychotic medication. Compare this to the 8% in the UK and you see the disparity.

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jasonalanward said on 14 November 2012

Most people are aware of the "Good Schizophrenic, Bad Schizophrenic" phenomenon. But; I had a friend who was upgraded from positive schizophrenia to paranoid schizophrenia and then tried to poison me twice, for nought.
Of which schizophrenia was he under the auspices of when he committed the said felonies? Answer; Neither.

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Analysis by Bazian

Edited by NHS Choices

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