An independent inquiry into the state of care for people with schizophrenia and psychosis in England is calling for a widespread overhaul of the system.
It says too much is being spent on the most expensive form of care; secure care, and more should be invested in prevention and community support.
The Schizophrenia Commission, established in 2011 by the charity Rethink Mental Illness and chaired by Professor Sir Robin Murray from King's College London's Institute of Psychiatry, says care of people with schizophrenia and psychosis is falling "catastrophically short". It says improvements in the understanding and treatment of the condition mean it should no longer be considered a diagnosis of despair.
Schizophrenia affects over 220,000 people in England. An estimated 1 in 6 people will experience some symptoms of psychosis at some stage in their lives.
The commission is made up of 14 leading health and social care figures. The eminent psychiatrist, Professor Sir Robin Murray, King's Institute of Psychiatry, Clare Gerada, Chair of the Royal College of GPs, Professor Martin Knapp, Health Economist at King's College London and the London School of Economics and Paul Jenkins, CEO of the charity Rethink Mental Illness, as well as people with lived experience of mental illness and their families. The Commissioners heard evidence in person from 80 experts and people affected by the condition and 2,500 more gave evidence online.
Analysis submitted to the Commission by the London School of Economics estimates that schizophrenia costs society £11.8 billion every year. Much of that could be spent more effectively, according to the commissioners – for example, only 1 in10 people with schizophrenia are currently offered potentially life-changing psychological therapies.
Their report, The Abandoned Illness, describes "shameful" standards of care on some acute mental health wards, which can make patients worse rather than better. It calls for every ward in England to be brought to a standard where people would recommend them to a friend or relative with mental illness.
The report highlights the disparity between the money spent on people with physical illness and those with mental illness; only 13% of the NHS budget goes towards treating mental ill health, even though 23% of conditions dealt with by the NHS are mental rather than physical.
It also expresses concerns that highly effective early intervention treatment teams are being cut in some areas; these are estimated to save the NHS £16,000 per person over the first three years of their illness.
Professor Sir Robin Murray, from King's Institute of Psychiatry and chair of the commission said: "We have spent the last year listening to expert professionals and more importantly, the experiences of people who have schizophrenia and psychosis and their families.
"The message that comes through loud and clear is that people are being badly let down by the system in every area of their lives. People with psychosis need to be given the hope that it is perfectly possible to live a fulfilling life after diagnosis. We have no doubt that this is achievable."
Paul Jenkins, CEO of the charity Rethink Mental Illness, who sat on the commission said: "It"s been over 100 years since the term "schizophrenia" was first coined, but care and treatment are still nowhere near good enough. It is a scandal that in 2012 people with schizophrenia are dying 15-20 years earlier than the general population and that only 7% are able to get a job. Too many people are falling through the gaps in the system and ending up in prison or homeless."
"Developing ideal treatments might take time, but there are things which can be done today, which could transform lives. More money does need to be spent - but the funding that already exists could also be used much more effectively.
"We wouldn"t accept this state of affairs for cancer, why should people with schizophrenia have to endure it?"
Key evidence submitted to the commission included:
- People with schizophrenia are dying 15-20 years earlier than average, mostly due to preventable, physical conditions.
- Only 10% of people with schizophrenia are being offered potentially life-transforming talking therapies such as CBT.
- Mental health hospital wards are often such appalling places they make patients worse rather than better.
- 1 in 3 people affected say they can't get quick access to services when they need it - and many don't know where to go for help.
- Too often medications are poorly prescribed and as a consequence people don"t get the benefit they should and instead suffer unpleasant side effects.
- Very few get the level of care that the health watchdog NICE says they should, despite that fact that treatments are available which work better and cost less.
- Staff are often demoralised and "burnt out" and pessimism pervades the system.
- A complete overhaul of inpatient units including more widespread use of community based "recovery houses".
- A redirection of funding from secure units into early intervention services, which save the taxpayer money and prevent people reaching crisis point.
- More research on the causes and treatment of schizophrenia and psychosis including the development of better drugs with fewer side effects.
- The elimination of poor prescribing by psychiatrists and the right to a second opinion on medication for patients.
- Extending access to psychological therapies and assertive physical health interventions starting on the inpatient ward
- A stronger focus on prevention, including clear warnings about the risks of cannabis.
- Greater partnership with people with psychosis - valuing their experiences and making their preferences and goals central to their recovery.
- Action to meet the needs of all marginalised groups, and especially those from African and Caribbean communities.
- A better deal for long-term carers who should be treated as partners, not problems.
Laura was eventually diagnosed with schizophrenia after opening up to her family about the thoughts she was having. She was prescribed antipsychotic medication, which completely took away her ability to play music. Laura says: "I felt numb, deathly tired, and barely able to move or think. I couldn"t do anything. When I stopped taking my tablets I was given medication by injections, I had no say in my own treatment."
Nine years on, Laura is still taking antipsychotics, but has managed to create a new life for herself with the support of a psychiatric nurse. She is now getting CBT, which has changed her life and teaches medical students about treating patients with mental health problems.
Over the coming months, the charity Rethink Mental Illness, who set up the commission, will be working with a select number of mental health trusts, which have agreed to implement the recommendations and serve as pilot areas. The charity will support these trusts to improve their practice and act as model for others trusts across England.
More information: www.schizophreniacommission.org.uk/the-report/