What is the future of schizophrenia care?
Schizophrenia is a disorder shrouded in myth and misperception, which affects about 1 in every 100 people during their lifetime. Three years ago a damning report by the Schizophrenia Commission described the system of treatment in this country as being “broken and demoralised.” Since then little has been done to address the root causes of the failings in the standards of care, despite the welcome focus on early access to services. The question of what can be done to better the outcome for those affected by schizophrenia or psychosis formed the basis of a roundtable hosted by Prospect less than 50 days before the General Election.
The discussion, supported by Otsuka and Lundbeck, set out to describe the scale of the problem, the proposed solutions, and the appropriate roles to be played by government and the National Health Service. Robin Murray, Professor of Psychiatric Research at King’s College, who presided over the Schizophrenia Commission, began by emphasising the redefinition of schizophrenia as a syndrome rather than a disease. “It’s another way of thinking about people who have hallucinations, delusions, and other psychotic symptoms…There is very little evidence that it hangs together as a distinct condition,” he said.
There was relative consensus on the causes of schizophrenia, which Murray identified as including childhood adversity, adverse life events such as physical and sexual abuse, genetic predisposition and drug abuse. The latter is “a much bigger problem than we had recognised…In South London 24 per cent of all first psychotic episodes can be attributed to cannabis use,” he said. Less clear though is why the numbers of those susceptible to psychosis/schizophrenia is greater in England than in Spain and Italy, and significantly higher than that of less developed nations such as Brazil “…it could be partly drugs and it could be the psychotogenic aspects of our inner cities…I now think schizophrenia is multi-factorial,” Murray concluded.
The fragmentation of services within primary care was cited by many as one of the key causes of the NHS’s poor performance in mental health, particularly in relation to managing someone’s physical health. “We found that 60 per cent of people when given an initial diagnosis were given no information at all,” said Marjorie Wallace, Chief Executive of the charity Sane. “People [suffering from schizophrenia or pyschosis] are made to feel like unwanted parcels, shunted from a GP to a crisis team, who already have over 80 people on their books, then to a drug team. All they want is to see one person who knows their history.”
Robin Murray pointed to mental health patients feeling like the level of care offered in psychiatry is not comparable to what might be expected in physical health. This is evidenced by patients reporting feeling ignored by their GP. Furthermore, Murray added, junior mental health professionals often report serious difficulties in getting patients with a diagnosis for schizophrenia or psychosis seen by a physician due to a sense that physical illnesses take precedence.
Elizabeth Kuipers, Professor of Clinical Psychology at King’s College, added that mental health patients often have a heightened need for physical care for a number of reasons, linked to medication and lifestyle. These risks can manifest themselves through an increased incidence of obesity leading to the development of diabetes or heart conditions, or smoking and not doing enough exercise. In spite of this increased need, Kuipers said that it’s difficult to be taken seriously and to get treated in the same way as an ordinary patient. For example when a mental health team refer a patient to physical health services, it’s common for there to be no follow-up from the physician if the patient doesn’t make the appointment. There’s isn’t a system in place to check that people are getting good physical healthcare.
There was also relative consensus on the need for parity of funding and esteem, especially given the poor health and low life expectancy of those living with schizophrenia, the latter being 20 years below the national average. “Mental health patients are not the people who knock on politicians’ doors,” said the academic clinical psychologist Dr David Harper. “It is middle class people who argue for funds to ensure they have the best possible retirement. That is why [traditionally] the funding goes to the sexier areas and not to mental health.”
Despite the improvements in early access to services for those who are newly diagnosed, more can be done to better protect patients whose condition has deteriorated to the point where they need more acute in-patient support. Wallace called for improved parity at the point of admission.
Parity is essential not just in funding terms but also at the point of admission, said Wallace. She cited the need for better care and access to in-patient facilities for those whose condition has severely deteriorated and recovery is unlikely. She said; “I’d like for a crisis bed to always be available for those patients…So that they could be observed overnight, or for two or three days if necessary.” To stress the importance of this she shared a devastating example of a case where a male with schizophrenia reportedly begged to be admitted as an in-patient, as did his mother on his behalf, and was refused. He then burnt down his mother’s home, killing her and endangering their neighbours.
The enduring social stigma of schizophrenia and the role of the media in perpetuating it was another talking point. Dr Paul Rowlands, Chair of the Royal College of Psychiatrists’ General Adult Faculty, suggested renaming it “psychosis susceptibility syndrome”. “We are comfortable with the idea that depression is a sliding scale,” said Anna Buckley, who produces health and science programmes for BBC Radio. “The sliding scale within psychosis is less well appreciated.” She was among those who believed ditching the “scary label” of schizophrenia would help reduce prejudice. While Harper suggested that crime reporters be given mental health education to stop stories about schizophrenia being sensationalised.
The question of the shape future treatments should take prompted much debate, with Dr Geraldine Strathdee, NHS England’s National Clinical Director for Mental Health, laying out her wish list. This included improved transparency on mental health care.
Standards across the country to drive improvement, teaching doctors to prescribe more effectively and better education for NHS staff on the science behind psychosis. There is a need for those on the ground to be fully aware that one psychotic episode does not mean the patient will be affected for life—with Dr Geraldine Strathdee highlighting that the latest research shows 60 per cent of patients don’t exhibit further symptoms within 10 years. Suggestions from other participants included ensuring people received personalised support at every stage not only during the three-year early intervention period.
Last week’s Budget contained the pledge that an extra £1.25bn would be spent on children’s mental health services over the course of the next parliament. The government’s recognition of the importance of early treatment as the key to recovery was widely praised. Currently, only 8 per cent of those diagnosed with psychosis are in paid work. A stark example to add context was given by Dr Strathdee who said that 59 per cent of soldiers who have lost limbs in the Afghan war returned to work within two years. “We need to change the culture of a [lack of] faith,” said Wallace, stating that that too often the person who gave them the least encouragement to seek employment was their mental health professional.
But, the responsibility does not lie solely with the NHS. People with a severe mental illness face an unemployment rate four times the overall rate, with those diagnosed as suffering from a moderate mental illness facing an unemployment rate double the overall rate. “This has sometimes led clinicians to advise people to conceal their diagnosis,” said Professor Murray. “I look after a consultant physician in a teaching hospital who I have been treating for 20 years. He is an excellent doctor and nobody knows he has schizophrenia.”
Despite the difficulties inherent in devising how to translate the rhetoric into the reality of improved care, the mood of those around the table was largely optimistic. “The Liberal Democrats, and especially Norman Lamb [Minister of State for Care and Support], have put mental health on the front pages. We now have more opportunities to go out and speak about the future of mental health care,” said Murray.
Lundbeck Ltd and Otsuka Pharmaceuticals UK Ltd provided funding to convene the roundtable which informed this report.
Date of preparation April 2015
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