Schizophrenia Commission – The Abandoned Illness

This is an important report. It is about the major concern for the current experience of people with severe mental illness, with a diagnosis of schizophrenia and other psychosis, and what can be recommended to make things better for the future. It links very clearly with many of our ideas and commitments to developing recovery oriented practice and services and enabling people to ‘get a life beyond illness’.

This report documents how there are around a quarter of a million people with schizophrenic experiences in England, whose lives’ are shortened by 15-20 years due to associated physical health problems. The cost to society is around £12 Billion.

This extensive and authorative independent review of submissions from several thousand people, including people with personal and professional expertise, found what it described as:

‘A broken and demoralised system that does not deliver the quality of treatment that is needed for people to recover’, and concluded that, ‘This is clearly unacceptable in England in the 21st Century’.

The group was headed by Professor Sir Robin Murray, probably the foremost research lead on psychosis in the UK, and may be one of the most substantial and influential resources to use in the work concerning care pathways for severe mental illness and psychosis.

Many may have initial difficulty engaging with a report from ‘The Schizophrenia Commission’, owing to controversy around the diagnosis and use of the ‘S’ word. The report is well aware of that and it accepts that the term ‘Schizophrenia’ is highly problematic and states that, ‘Psychiatrists must be extremely cautious in making a diagnosis of schizophrenia, as it can generate stigma and unwarranted pessimism. The more general term ‘psychosis’ is preferable, at least in the early stages.’

However – once you get past that, what follows is a major manifesto for person-centred care that resoundingly endorses the hope of recovery for people with even the most severe mental health challenges. It is also an explanation of the important role of effective treatment, offered with kindness and competence, but also how that is only part of what people need to be able to recover their lives.

It then reviews many of the major contributions to progressive service approaches and endorses: peer support, recovery education, the need for secure housing and support for meaningful activity, work and employment.

It makes a very positive case for respecting family and friends as resources and takes a strong line on supporting people in making their own decisions and partnership working. It emphasises the importance of physical health services for people with mental health problems and fully endorses early intervention and community based work – and is highly critical of the cuts that are now being implemented.

This commission took in a huge range of submissions and commented specifically that,
‘In particular, 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. Being offered hope is crucial, especially when a person with psychosis is at their most unwell. Being involved in decisions over care and treatment genuinely – not in tokenist ways – is vital.’

Their endorsement of recovery oriented services and practice carries through to one of their key recommendations for: ‘Greater partnership and shared decision making with service users – valuing their experiences and making their preferences central to a recovery-focused approach adopted by all services’. (p7)
The issue of ‘adoption by all services’ is expanded when speaking of forensic and prison services, in recommending development of, ‘ a national commissioning strategy for secure care with the aim of rationalising definitions of security and establishing recovery-focused care pathways through secure care’. p27

There is authoritative endorsement here for: staff training and support so that they have a positive belief and confidence in recovery; recovery houses as an alternative to acute admission facilities (p9/27); supported decision making as a means of enabling medication use to be more supportive of personal recovery (p29), peer support (p34); continuing and additional commitment to anti stigma work and the Time to Change Campaign (p47).

It answers the question regarding, ‘What needs to change?’ by emphasising support for accessible psychological therapies, employment, personal budgets, housing and welfare reform but also by offering a clear commitment to the development of recovery-focused services and specifically in building upon the ImROC initiative,

‘We recommend that all NHS Mental Health Trusts and other mental health providers
should invest in recovery-focused whole system transformation and development for
staff such as ImRoc.’ p44

There may be some aspects of this report that people will not be able to agree with, but overall it seems a substantial and positive contribution to making a case and creating momentum in directions we are already committed to – in my view we should welcome it.

Glenn Roberts
Chair, Devon Recovery Research and Innovations Group