The Schizophrenia Commission

We’ve had an amazing response to our report. It’s sparked far-reaching debate about what must change to improve recovery for people with schizophrenia and psychosis.

This is a special message for those who made it possible – the people who took part in our inquiry. You were one of over 2,500 people who submitted evidence to the commission. Based on the evidence you gave, we’ve suggested priority actions to improve services for people with schizophrenia and psychosis, and their families. You’ve helped us move one step further to making these a reality. Thank you!

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Thanks again, to everyone who was involved or who simply followed our progress.

The Schizophrenia Commission

It’s launch day

100 years since Eugen Bleuler coined the term, schizophrenia remains stigmatised and misunderstood. Today our report is published on one of the largest ever reviews of the condition in England. We’d like to tell you about it – and how to share our message.

An independent inquiry

In November last year, Rethink Mental Illness launched the Schizophrenia Commission. Chaired by Professor Sir Robin Murray, our expert panel gathered evidence from over 80 experts in a national series of events. 2,500 more gave evidence online.

We listened to health practitioners, academics, policy makers and those with lived experience of schizophrenia talk candidly about current practice and support. Personal testimonies and case presentations helped answer our principal question- what works well and what needs to change? The recommendations we released today call for a radical overhaul of the current system of care.

‘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’       Robin Murray – Commission Chair

What we heard

We’ve spent the last year consolidating our evidence. Areas that must be addressed to improve recovery prospects include:

• 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
• Major concerns remain about the lack of efficacy and side effects of anti-psychotic drugs, which can lead to rapid weight gain, diabetes, and heart disease

You can help

We need more people to understand the realities of living with schizophrenia. Help combat the myths and stigma surrounding the illness. Share our infographic.

Read our full report and 42 detailed recommendations here.

Hear personal reflections on the recommendations and their implications for clinical practice. Read our commissioner blogs.

Stay in touch

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Thanks in advance for your support

The Schizophrenia Commission

Hi everybody!

Today the commissioners are meeting to finalise their recommendations.
 

We have had a busy Summer analysing the surveys, and writing our report – expected to be published in November, be sure to check our website for updates on this, and future events.

A massive thank you to everybody that filled in a survey, wrote to us, and participated in our events;
you have made a lasting contribution to the understanding of  how people’s lives are affected by schizophrenia and psychosis, and what improvements need to be made.

 We hope to make a big impact!

You can join in the discussion via twitter @szcomm

The commission visited Nottingham prison on 27 June as part of its evidence gathering process. We had a round table discussion with prison staff, a local magistrate and the local offender health team, a session with prisoners and a prison tour. It was a very challenging day – reflecting on how you manage experiences of psychosis in a prison environment.

“When I trained schizophrenia was not what I see here. Many people in here in terms of diagnosis have multiple typologies. Substance use disorders, psychotic episodes, mood disorder, personality disorder. There is variation in stress and drug use impacts on intensity of experience. All are very  distressed. All are suffering. Can’t sleep, can’t feel stable and calm because of their symptoms so self medicate.”  

“Complexity people’s needs span whole raft of traumas as youngsters – which seem to have led to a weight of history. Part is a psychotic presentation – but services are not geared up to meet those complex needs. Who catches them first? It is chance who helps first. Big issue is complexity of problems and weight of their history.”

“It is my opinion that multiple checks need to be in place, long before individuals with complex needs and mental health experiences enter prison. Mental health care and rehabilitation whilst in prison is still a work in progress long term, as a high percentage of offenders re-offend due to the void experienced when re-entering the community after imprisonment”

 ”The Commission visit was very interesting: we learnt a lot about how the prison was ran – especially from their specialist mental health team who were very involved in helping inmates with complex needs. They were clearly well resourced with an emphasis on early assessment and intervention. Unfortunately it is in the community where these problems appear to start and continue – we need more resources targeted here to help those who leave prison and find it so difficult. As one prisoner said: ‘In the community I would like to have the help and support I have here – someone to talk to me and listen”. Terry

We will be looking at complex needs and psychosis in our recommendations – including homelessness, drug use, trauma, social deprivation and crime to name a few. Our evidence gathering surveys are now closed – thank you to everyone who submitted their view – all 2500 of you! We will be publishing findings in the autumn and you will receive an alert.

Many thanks again for your support.

On 22^nd June 2012 , our commissioner Terry Bowyer  visited the peer led and ran charity ‘Safety Net’ which provides peer support for the local community’s mental health and wellbeing in Hertford.

The charity, which is a year old in July, offers a whole array of peer led therapeutic activities for those seeking local support. They provide counselling, wellbeing group work, art group, creative writing, complimentary therapies, social functions, as well as open-door days for people to just come in and socialise.    

Safety Net is a wellbeing project ran by 5 volunteers and has over 40 local people on the books and regularly attending. It is supported by the local MP and regularly gets visits from local district councillors who are 100% behind it. They’ve also had support from local firms and businesses.

They offer help on an informal ‘walk in’ basis. Julie Abery (Founder and Chief Executive) said:

You don’t have to be in the mental health system to attend. If someone walks through the door with depression we’ll just listen and try to help. We are non-judgemental and want to break down stigma by involving our community – we provide a niche for this and we believe you can make life what you want it to be

Safety Nets motto is   ‘We will catch you when you fall!’

The atmosphere there was warm, accepting, friendly, and accommodating with a sense of harmony between all involved as being equal as peers. The venue was great too, with clean and tidy rooms, a garden and smoking area, plus facilities. What stood out most was the whole peer support ethos. As Keith, an attendee said:

“Here people accept you whatever – even if they don’t know what you are feeling, they accept you are feeling it anyway and support you – it’s great!”

Terry says:

I love this place! It is a shining example of what peers can do for each other if they are properly resourced and organised. Who better to help support you than someone else who has been through it?  In my other role as a Peer Specialist I know how effective this can be and I would love to see many more projects like Safety Net in our country because people really need it”

Stephen McGowan is the Early Intervention Service Lead in Bradford & Airedale.  Stephen & his colleague Ben recently gave evidence to the Schizophrenia Commission, and we are grateful for their comments below.

Hi – My colleague Ben and I were invited to give  evidence to the Schizophrenia Commission, and we are pleased to share our experience in this blog.

Firstly we felt very privileged to be involved in such an important process and genuinely hope that much good will come of it. Secondly we wanted to thank The Schizophrenia Commission for giving us the opportunity to present the outcomes of the Bradford Early Intervention team as a way of illustrating how the outcomes and savings demonstrated in research studies can be replicated in an ordinary Early Intervention (EI) service.

Thirdly, commissioner Dr. Clare Gerada asked us a very interesting question:
“Is EI successful just because it’s nice to people?”
Ben and I talked a lot about this on the train home. On the face of it this is a simple complement, but on reflection a very clever question. I think EIP teams do try to be nice to service users, families, their staff, partners and referrers and that ultimately this is a wise strategy. What is fascinating is the inference that other MH services aren’t nice and whilst this generalisation is unlikely to be universally true it does reflect problems in mental health services and the views of many.

What I think sets Early Intervention Programmes (EIP) apart is a determination to develop positive team cultures based on a belief that people can and will make good recoveries from psychosis. In my view this has only been achieved successfully where it has been a strategic aim of the service.
Nice team cultures have to be planned, nurtured and managed.  Staff supervision and training are important but I think leadership is the most vital ingredient. The development of Early Intervention in Psychosis services in this country has seen the emergence of fresh new specialist services for young people experiencing serious mental illness. At their best I think they represent in microcosm how mental health services could and should be. They should be nice.

But there is a risk in these dark times that these services will be cut or diluted. The development and leadership of these services is seen by some as an expensive luxury. There are many that believe EIP could be delivered by individual practitioners working out of generic community MH teams, but I am certain that this would spell the end of EIP. EI workers based in CMHTs would be strongly influenced by the dominant culture of adult MH teams and I fear they would become less nice. To describe EIP culture as nice is a complement, but it also risks reducing a vital service component to something that is considered ordinary and simple to achieve. We need to value nice.

I wish the commission every success.

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