The Schizophrenia Commission

Last month our commissioner Terry Bowyer visited Bournemouth University to hold a discussion with some 3rd year Mental Health Nursing students.

Students are the workforce of tomorrow, and using our Schizophrenia Commission evidence gathering survey, a group of Mental Health nursing students discussed current practices they believe are successful, as well as the challenges to improving care and support for people living with schizophrenia and psychosis, and their families.

They praised the  increase in the of availability of talking therapies like CBT and family intervention, as well as the  implementation of individualised care and the inclusion of peer support workers as successful forms of support.  The students called for those services to be offered more.  ’Refresher’ staff training, and an adherence to evidence- based practice, and a better consideration of how a persons’ lifestyle and environment impacts their mental health were identified as other key challenges to delivering better treatment and services.

We need much more Peer Support Workers working alongside other staff to aid and develop staffing. We want psycho-social intervention training to be mandatory instead of optional.

The biggest challenge? Reducing stigma in wider society.

We need to reduce fear generally and promote more understanding. We want the UK to be a leader in Europe and a model applicable to the world stage.
We need a shift in the public attitude via the media to challenge stigma. Time to change needs to be invested in more and for longer.

When asked about their hopes  for the future for people living with schizophrenia; the students echoed what many people with lived experience of psychosis, families and professionals have been telling us throughout our evidence gathering.

We would like to see a change in the labelling of this diagnosis and to lose the word Schizophrenia – it’s too negative. We want better teams who can lose the negative thinking and take the fear out of services. We need to focus on the human being – the person beneath the diagnosis. We want much more awareness of psychosis in schools to help our young people.  We need people believing in recovery from Schizophrenia and to see examples of it to provide the vital hope that is needed.

Terry and the Commission are grateful to the students for their engaging and enthusiastic contribution. Many thanks to Chris Kelly, and all at Bournemouth University who were involved!

Other news from the Schizophrenia Commission – we are continuing to collect survey responses, hold events and make service visits. We will be collating all our findings over the summer and are on track to report findings in the autumn.

In February, The Schizophrenia Commission visited  Start ; a recovery pathway programme, which is part of  the Manchester Mental Health & Social Care NHS Foundation Trust.

 
Art therapy  is proven to be effective in supporting a person’s recovery from serious mental illness.  The ‘Start’ approach is a creative, person-centred and structured process.  The individual embarks on a “journey of self discovery”, achieved through personal goal setting and a rotation of  art activities (animation, painting, photography, textiles)  which aims to build skills and confidence. People also create pieces to be exhibited in galleries.

We heard the success of the project can be attributed it’s innovativeness and outcome focussed approach – ’Start’ has developed feedback mechanisms and toolkits of support which allow people to continually review their progress and evaluate the quality of the courses. Feedback is listened to, so the service evolves and changes – one example was the introduction of home study. Those attending wanted to do homework!

 “When I became seriously unwell, I lost not only my sanity but also my identity. Through my art, I have vastly improved not just the quality of my life, but also restored my long lost confidence and self-esteem. What’s more, it’s given me a positive identity. I am no longer merely ‘the unemployed schizophrenic’ as I have often regarded myself: I am an artist whose work is admired and respected”.  (Referenced in March 2007 edition of Mental Health Today article “Arts and Opportunity”) 

Are there any recovery projects that have helped you, or someone that you know?
Tell us -by completing our survey(s), or via our twitter and facebook page
We are keen to hear ALL views and experiences.

We are starting to put material from our events on the web site. The presentations from the afternoon event at the Imperial War Museum on 10 January 2012 are available to view alongside short summaries of key points raised. We also have two lived experience videos up from our morning session from a family member and person living with psychosis.

 We had 2 days in Manchester in late February hearing evidence on treatments and services for schizophrenia and psychosis. The events included a dinner hosted by Manchester City  Council where we discussed what needs to change to support recovery. A press release of the events is available online and more summary material will follow.

As you will see from the online presentations, the Commission is looking at the concept of ‘schizophrenia’ as well as impact and outcomes of peoples’ experiences. We know that diagnosis is hugely controversial in mental health and Commissioners are particularly interested in hearing the views of those who do not believe that ‘schizophrenia’ is a useful term or aids recovery of those with a serious mental health condition.

The Commissioners come from a diverse range of professions and backgrounds. We are absolutely committed to an open-minded approach to the evidence we hear in events, our surveys and visits.  We want to listen and to learn. One of the Commissioners, Liz Meek  said  ”I know that Schizophrenia is a terrifying diagnosis. And when you go and look it up, you find it’s a kind of menu of symptoms and not clear cut.  I really hope people with lived experience and familes will help the Commission by giving us their views”. 

A survey participant told us the most helpful thing is “Support which is empathetic and not from a medical model; looking at the reasons behind the experience, i.e. triggers for the episode, rather than medication being the focus” Tell us what works for you and what needs to change”.

We are receiving a number of submissions from organisations and individuals and all these will be taken into account in our final report. We  want to hear from everyone who has an opinion on schizophrenia and psychosis. We are keen to hear the views of people who feel the diagnosis was unhelpful in their recovery, those where labels feel oppressive and discriminatory as well as those who feel that the diagnosis and treatment and support that followed were the starting point for their recovery.  We are also keen to hear from practitioners and researchers in the health and social care community . Our final report will include a clear statement of the views received on different issues.

If you haven’t already done so – please do provide us with yours!

Commissioner Jeremy Laurance is Health Editor for The Independent newspaper

Jeremy Laurance writes about new research suggesting that the antibiotic Minocycline, normally used to relieve acne symptoms, is being linked to alleviating psychotic episodes.
The schizophrenia commission heard from  Professor Bill Deakin of The University of Manchester, in February about a UK trial due to begin next month; Which will follow studies from around the world demonstrating that there is improvement in symptoms for schizophrenic patients when using the antibiotic. This is thought to be related to the anti-imflammatory and neuroprotective effects of the antibiotic upon brain processes.

See Jeremy Laurance’s full article here

Chair of The Schizophrenia Commission Professor Sir Robin Murray features in a  fascinating interview for  ’BBC Radio 4′s The Life Scientific’. He discusses the evolution of research into schizophrenia and psychosis, and how he has changed his views about the causal factors.

In early research, there were many theories but not much evidence; a belief that schizophrenia was an untreatable degenerative  brain disease akin to Alzheimer’s was replaced by the notion of social causal factors -upbringing and ‘schizophrenogenic mothers’; This was opposed by the biological school of thought which advocated neurochemistry and genetics as the sole causal factors. This is a dispute which Professor Sir Robin Murray believes held back the progress of research until recently.

“Rather than see social and neuroscience in opposition I would think that we should use them together… the [biological vs social] dispute has held up progress in research for a long time.”

Professor Sir Robin Murray acknowledges his shifts of investigative stance; from early 1970s as psychosocial , to brain studies, to publishing a study detailing  the relationship of schizophrenia or psychosis with childhood developmental  abnormalities. Then returning again in 2000′s to social factors such as migration. He goes on to discuss recent findings suggesting use of Cannabis, particularly skunk which contains high levels of the chemical THC  ”dramatically increases the risk of psychotic episodes”- but this is not to say it definitely leads to developing schizophrenia by itself.

“The simplistic notion that [schizophrenia] ‘only a brain disease’, combined with bad psychiatry is fairly toxic. The standard of psychiatry and mental health services up and down the country is not that good. If you have 20 people coming to an outpatient clinic, it’s easier to prescribe a pill than spend half an hour talking about psychological factors. But just because something is psychological does not mean it is easy to remedy. We could abolish 30% of schizophrenia if nobody lived in towns or cities.”

Difficulties that arise when investigating biological factors for a disorder that is defined by peoples thoughts will be overcome, Robin Murray believes,  as the biological basis of thinking is further understood. Similarly the studies of of psychological and social factors are now becoming larger and more sophisticated and consequently more believeable.

“The difficulty has been that biological technologies have been so distant from the clinic,  now it is  getting closer. There are two big ways forward – one is  studying the interaction between particular genes and particular environments, the other is using brain imaging techniques to study individual vulnerabilities to a particular adversity”.

• Listen to Professor Sir Robin Murray here

 ”The essence of us is our brain, in extreme circumstances you can get a artificial heart or kidney, you can’t have a substiute brain”

Commissioner Jonathan Phillips guest blogs about the evidence gathering session in Manchester, which highlighted the disparity between actual quality of  care provision and what is aspired to be achieved.

“Mind the Gap” was the phrase that kept coming to me as I chaired the latest evidence gathering session of the Schizophrenia Commission. 

Time after time the professionals presenting about different treatments identified the yawning gap between the excellent practice they knew was possible and the worrying attitudes, knowledge and skills of their fellow professionals.

There is an enormous gap between what national guidance requires of providers of services, and what occurs at the front line. Of most concern is the gap between the aspiration and the reality of most people’s experience of being on the receiving end of services, either as carers or those who use services. A consensus opinion from audience memebers in all evidence gathering sessions so far; treatment and support for people experiencing psychotic symptoms needs vast improvement.

Audience members and speakers voiced their concern that recent changes in the way services are organised is reducing continuity of care and support. New arrangements can result in people being transferred quickly between practitioners  or services without adequate hand over and there are variable standards in the way health and social care is integrated.   Worries extend beyond being part of the healthcare system, the proposed welfare reforms could make life tougher for people with long term experience of severe mental health problems.

At the heart of problems surrounding treatment and care is the attitude that people in society have towards those with severe and enduring mental health problems.
Despite the appalling quality of life that some people experience – homelessness, early death, loneliness and poverty, we tolerate a quality of care that would be unthinkable for people with cancer or heart conditions.

Many people have generously given their time and experiences to The Schizophrenia Commission so far, I hope that this continues and from it we can achieve pragmatic outcomes  to fill the gap between the reality and the rhetoric of treatment and care that we are exposing.

Welcome to our second guest blog by Liz Meek , one of our commissioners and a mental health carer.

I chaired the morning session which about 50 people came to. The Commissioners heard three moving personal accounts from a man living with a diagnosis of paranoid schizophrenia, a mother caring for her son and a consultant psychiatrist working in the community. We heard that things have improved: 10 or 15 years ago, our speaker would never have imagined that he would be centre stage talking to all of us about his experience of psychosis. It was really good to hear a positive view but there were also concerns about welfare benefit changes leading to instability and uncertainly.

Our carer’s story was of battling with bureaucracy and a terrible lack of continuity (24 psychiatrists). ‘I want to be a partner not a problem’ summed it up for me.  And after all the struggles, the personal assistants who help her son using direct payments are working well.

Our doctor talked about the importance of relationships and continuity. How she struggles to find the time to do everything and keep hold of the personal connection to patients. But that personal connection is vital to the psychiatrist trying to deliver effective services. Linking to the GP is also a priority carving out time to see her patient’s GP regularly to liaise over care choices and progress. There just are not enough hours in the day.

So there were clear messages for Commissioners which I think are that services need to be personalised and personal: professionals must involve people living with psychosis and families appropriately, successful relationships are vital (but the relationship can be with a number of different professionals or non-professionals) and we need hard-pressed practitioners to stay longer in their jobs!

We also heard about Cochrane research evidence -  that there is a lot of evidence which has been validated through the Cochrane system about causes and ‘what works’ and we don’t make enough use of it. And also about leadership in teams, whole system approaches to care and support,  the increase in late onset psychosis and how building resilience and recovery in individuals, families and the community is the business of psychiatrists.

During all this we collected questions from the audience of service users, carers, researchers and professionals. Key themes were about prescribing – poor quality information, failure to listen to patients about efficacy and side effects- about why after 100 years when we know so much the actual service is often so bad- and why there can be such variations in service quality.

At one point one of the Commissioners, Jeremy Laurance, exclaimed that the providers of services seem to be ‘living on another planet’. The accounts of how it should be in theory  were so different from the experience of service users and their families! We must address that issue in our work as a commission.

We are hosting some guest blog posts from commissioners. Thanks to Paul Jenkins for the first entry!

Paul Jenkins of Rethink Mental Illness

In November last year, Rethink Mental Illness marked the 100^th anniversary of the coining of the term by setting up an independent Commission on Schizophrenia, under the chairmanship of Professor Sir Robin Murray.  The Commission is aiming to take stock of what we know about schizophrenia, the experiences of those individuals and families affected by it and make practical recommendations which could make a difference to peoples’ lives.

Last month we held the first of 4 public evidence-giving days at the Imperial War Museum which, appropriately enough, is the former site of the Royal Bethlehem Hospital.

The day involved two sessions of evidence. We started with evidence from service users and carers about their first-hand experience of living with schizophrenia.  Some stories highlighted the possibility of recovery and provided some clear insights into what interventions made a difference.

The right medication had helped one individual, a personal budget and the scope to employ a personal assistant had been crucial in another case.   In all cases some meaningful message of hope and the willingness of professionals to take the experiences and beliefs of services users and carers seriously were central.

Genuine hope must not be allowed, especially when resources are tight, to degenerate into trite policy prescriptions which ignore the complexity of what people experience with schizophrenia.

Such messages of hope are important and through the Commission we are keen to counter the implication of schizophrenia as an inevitable “life sentence” for those affected.  However our witnesses were at pains to remind us that, with schizophrenia, recovery could be a long journey with setbacks as well as steps forward.

Imperial War Museum

One witness in particular reminded us how bad things could be and graphically captured the sense of bereavement resulting from her brother’s illness.  Genuine hope must not be allowed, especially when resources are tight, to degenerate into trite policy prescriptions which ignore the complexity of what people experience with schizophrenia.

The discussion also reminded us of the forgotten groups living with schizophrenia.  This entails both individuals with relatively stable symptoms but who live lonely neglected lives on the margins of society and those who have fallen altogether out of the care system and get caught up in homelessness or the criminal justice system.

In the afternoon the focus shifted to causes and concepts with presentations from many leading researchers such Mike Owen, Richard Bentall, Craig Morgan, Jim van Os and Diana Rose.

The name and the concept remain difficult.  Both genetics and psychology increasingly suggest a phenomenon with fuzzy edges…

This has not always been easy territory.  The question of what schizophrenia is or isn’t and what causes it or doesn’t have been the source of fierce controversy and the Schizophrenia Wars fought in the past have caused much bitterness and have perhaps distracted attention at times from building a coherent case for better outcomes.

It was encouraging therefore to see more consensus than dissonance amongst what was presented.  This wasn’t the emergence of a “unifying theory of schizophrenia” but rather a clear sense that both biological and psychological schools of thought better recognise the contribution which each other’s work might bring to better understanding the symptoms which people experience, and the identification of effective interventions.  The debate was usefully framed not as genes versus environment, but rather genes multiplied by environment.

The name and the concept remain difficult.  Both genetics and psychology increasingly suggest a phenomenon with fuzzy edges and significant overlap both with other mental disorders but also with experiences in the wider population which are not classified as mental illness.

They also point to the need to respond to each person’s schizophrenia in a different way taking account of individual histories and presenting symptoms and not prescribing a one size fits all treatment – here’s your diagnosis – here’s your pill.  Such a more personalised approach might improve outcomes.

Schizophrenia affects half a million people in this country and their families – and a hundred years after the term was coined it remains poorly understood

The event was attending by over 150 people during the course of the day, most of them with direct or family experience of schizophrenia and they too were able to add their voice.  We will be holding 3 similar events over the next 4 months one in Manchester and two more in London.  Details of how to attend are able on the Commission’s website.  We are also carrying out what we hope will be the largest survey conducted in this country of people affected by schizophrenia. 1000 people have already responded and the survey can again be accessed through the Commission’s website.

So, what are we trying to achieve? Schizophrenia affects half a million people in this country and their families – and a hundred years after the term was coined it remains poorly understood. It can be a devastating experience but hope is possible and outcomes could be improved if individuals and families get the right support at the right time.

Above all we need to lift the shroud of secrecy from this forgotten illness.   So despite some of the controversies which surround it, it’s good to talk about schizophrenia.

There are tickets available for the schizophrenia commission event in Manchester on Tuesday 21st February 2012!

Discussion will focus upon Treatments and services of schizophrenia or psychosis: What works well and what needs to change?

Apply for the ticket ballot here and pass the link on to your contacts, we hope to see you there! 

We are finally ready to launch the last of our three surveys on schizophrenia and psychosis. Our third survey is for researchers and research teams to describe their work on schizophrenia and psychosis. We are interested in the impact of research work and ideas for further studies to improve outcomes for people affected and increase our understanding of causes, concepts, consequences, treatments and recovery. Closing date – end of March. We look forward to hearing from you!