The Schizophrenia Commission suggest priority actions that directly affect health professionals. There are easy ways you can change your practice to improve care for people with schizophrenia.
Read the words written by:
- Professor Sir Robin Murray, Chair of the Schizophrenia Commission
- Clare Gerada, Chair, Royal College of General Practitioners
- Jonathan Phillips, former Director of Adult Social Services
- Terry Bowyer, mental health campaigner and activist
What does our report mean for psychiatrists? Professor Sir Robin Murray, Chair of the Schizophrenia Commission
Imagine suddenly developing an illness in which you are bombarded with voices from forces you cannot see, and stripped of your ability to understand what is real and what is not. You discover that you cannot trust your senses, your mind plays tricks on you, and your family or friends seem part of a conspiracy to harm you. Unless properly treated, these psychotic experiences may destroy your hopes and ambitions, make other people recoil from you, and ultimately cut your life short. Some 220,000 people in England have such psychotic experiences – we probably all know a family who is affected, but the stigma is such that they may be keeping it a secret.
One hundred years after the term “schizophrenia” was coined to describe severe psychosis, the Schizophrenia Commission came together to examine the provision of care for people living with psychotic illness. We are an independent group which took evidence from around the country and heard from several thousand people over 12 months. What we found was a broken and demoralised system that does not deliver the quality of treatment that is needed for people to recover. This is clearly unacceptable in England in the 21st century.
People with psychosis also need to be given the hope that it is perfectly possible to live a fulfilling life after a diagnosis of schizophrenia or psychosis – Professor Sir Robin Murray, Chair of the Schizophrenia Commission
The inadequate care that many people with psychosis receive adds greatly to their distress and worsens the outcomes for what can already be a devastating illness. Most have a period in a psychiatric hospital unit but too many of these wards have become frightening places where the overwhelmed nurses are unable to provide basic care and support. The pressure on staff for increased “throughput” means that medication is prioritised at the expense of the psychological interventions and social rehabilitation which are also necessary. Furthermore, some wards are so anti-therapeutic that when people relapse and are in need of a period of care and respite, they are unwilling to be admitted voluntarily; so compulsion rates rise.
The problems are not just in the wards. People with psychosis rarely have the chance to choose their psychiatrist and families are not treated as partners in care but have to battle for basic services. People diagnosed as having schizophrenia have poor access to general practitioners and general hospital care; their physical health suffers and their life is shortened by 15 to 20 years. The fragmentation of services means that people who have a recurrence of their psychosis lose the established relationships with professionals they trust, and instead feel shuttled from one team to another as if on a factory production line.Sadly, the great innovation of the last 10 years which everyone says works well – the Early Intervention in Psychosis services – are currently being cut. Instead, the obvious question is: why is it that the integrated therapies that work so well in early intervention are not being offered to people throughout the course of their illness?
The poor quality of care offered to people with psychosis is particularly shameful because, in the last two decades, we have made great strides in understanding mental illness. Gone are the ideological disputes of previous years. Research has instead shown that both biological and social factors are involved, and we have learned that a diagnosis of schizophrenia does not predict inevitable decline. As well as harrowing accounts of personal tragedies, the Commission heard from many people who had been helped to recover and go on to live happy and productive lives after one or more psychotic episodes. Good care delivered by kind, compassionate practitioners can make all the difference. Being given hope is central to recovery too – gaining control and being empowered to build self confidence and self esteem. Time and time again we heard of a transformation whereby an apparently downward course was reversed by a nurse, doctor, peer or therapist who took the time to listen and understand.
We welcome the Government’s strategy ‘No Health without Mental Health’ and the recently published implementation framework. There is broad agreement that services and the experience of those with the condition need to change.
The cost of schizophrenia and psychosis to society is estimated at nearly £12 billion in England alone. But we are not spending the money wisely and not achieving the results that we could. If schizophrenia is approached with an understanding that substantial recovery is achievable for most people with the illness, instead of the defeatist attitude that this is the end of a person’s useful life, then we can make a real difference. This is not an expensive fantasy but could lead to an overall saving for the country by turning users of services into contributors to the economy.
What’s needed most of all is a change of attitude in each Trust from the community nurse to the Chief Executive. People with psychosis also need to be given the hope that it is perfectly possible to live a fulfilling life after a diagnosis of schizophrenia or psychosis. We have no doubt that this is achievable.
Research has led to an increasing number of effective drugs to choose from and a range of evidence-based psychological treatments. We know much more about ‘what works’ than we used to and we have seen inspiring examples of recovery-based services in England and learnt of better approaches used in other countries. The committed individuals who went into the mental health profession to improve lives should be helped to do exactly that.
We now need to make sure everyone is offered the treatments that we know work best, delivered with kindness and competence. If we can achieve this, then together we can make the next decade one of increasing recovery for people diagnosed as having schizophrenia or psychosis.
Professor Sir Robin Murray, Chair of the Schizophrenia Commission
It’s not often that you can say you’ve really changed your views on something in the course of a year. Most of us rarely change our views radically after our professional training. But over the last year, I feel I have gone through a professional turning point.
As part of the Schizophrenia Commission, I have listened to patients, family members, academics and health professionals, all keen to talk about the current system of care and what more GPs could do to help the 220,000 people who have schizophrenia in the country today.
I am determined that our new enhanced training will better equip the next generation of GPs to support patients with schizophrenia. – Dr Clare Gerada, Chair of the Royal College of GPs
I have heard particularly about how important it is to listen to people’s experiences of schizophrenia and provide a sense of hope. Mental health problems are part of most GPs’ daily practice now, but it has struck me how little we study them in our training. I am certain that GPs could and want to do more to help the 1 in 3 patients that present with a mental health problem. But we need to increase the quantity and quality of training on mental health to do it. I am determined that our new enhanced training will better equip the next generation of GPs to support patients with schizophrenia. This needs to include softer skills such as listening and dealing with sensitive and difficult subjects as well as specialist information such as antipsychotic prescribing.
Primary care could play a greater role as we have done in supporting patients with many long-term conditions, such as diabetes. We have all risen to that challenge since I became a GP. I long to see practices that house specialist mental health teams, really integrating primary and secondary care. Psychiatrists and psychiatric nurses should work alongside GPs in the best interest of patients, rather than being separated by finances and referral paperwork. I hope that Clinical Commissioning Groups are looking at how to embed integrated teams in every area of the country. As well as providing more joined-up, better patient care, these teams would help to reduce the stigma of mental illness. It would be far less stigmatising for patients to be able to see the specialist and general practitioners in their local communities than having to go to a hospital regularly to access that help. I am convinced too that this would help us to spend the £36,000 per patient which we currently spend in the public sector to much greater effect.
Most of all we need to put ourselves in the shoes of the patients and family members. It is hard to overestimate the effect that a diagnosis of schizophrenia can have on a person’s life, particularly a young person. I have heard too many stories where patients and their families felt that they were battling against the system just to get really basic healthcare. The NHS must provide good healthcare for all – that is its premise. The Schizophrenia Commission report out today will I hope help us to get one step closer to that goal and start a real debate about what more GPs can do to support patients.
Clare Gerada, Chair, Royal College of General Practitioners
What does our report mean for Directors of Adult Social Services? Jonathan Phillips, formerly Director of Adult Social Services, Calderdale and ADASS mental health lead, tells us…
The report has taken evidence from many people with lived experience of psychosis along with many professional leaders and pioneers in the field.
There is a powerful consensus that many people are being failed by the current services and root and branch change is needed. This runs through inpatient services, rationalisation of outreach services, access to talking therapies and personalisation.
Make sure you know how CCGs are addressing mental health commissioning. Use this report to help them test their thinking. – Jonathan Phillips, former Director of Adult Social Services
Hopefully DASSs can use the report to galvanise change by working with partners and engaging Health and Wellbeing Boards.
The key leadership tasks that are needed to address this are:
- Make sure the public health crisis is heard loud and clear. People with severe and enduring mental health problems are dying 15 to 20 years younger than the rest of the population. This needs a public health led strategy with an underlying value base that people’s rights are being undermined
- Orchestrate a whole system response. There is a critical role for commissioners who need to reframe commissioning strategies so they are not dominated by NHS acute contracts. There was strong evidence that housing, specialist employment and advocacy services need to be a coherent and properly funded part of the whole.
- Make sure you know how CCGs are addressing mental health commissioning. Use this report to help them test their thinking. They will need critical mass to deal with large NHS trusts but local intelligence to create workable systems that are organised around the people using services.
- Assess the impact of raising eligibility criteria above moderate on people with enduring mental health problems which fluctuate
- Find ways of making sure that the diverse voices of people with lived experience is heard by policy makers and commissioners and acted on.
- Check whether your JSNA adequately describes the needs of those with severe and enduring mental illness. It affects 300,000 families in England. Pay particular attention to the experience of African and African Caribbean people – it is highly likely that what ever the general experience is , it will be worse for them.
- Getting to grips with personalisation. Current figures indicate that not only are people with ongoing mental health problems receiving a much lower level of self directed support than other user groups, but the rate of growth is slower – so they are actually slipping further behind. However even those areas making progress described the problems of overcoming resistance in the NHS so social care can’t do it alone and strong alliances with NHS leaders is vital. We heard plenty of examples of how direct payments had helped people to turn their lives round but this was combined with a shocking level of ignorance amongst professionals and people using services about their availability.
- Make sure you understand the impact of Payment by Results locally. We heard anecdotal concerns about services becoming fragmented resulting in disrupted experiences for people and partnerships being undermined. Try and avoid existing partnership and joint arrangements being broken up – they were universally supported by people using services.
- Link up with DCSs – the links between CAMHs and adult services were often described as unworkable leading to poor services for young people experiencing severe mental health problems as they become adults
Finally please get your Health and Wellbeing Board interested. This really is an area which cries out for senior managerial and political leadership. It is a very useful area for them to test and develop their leadership potential as they will undoubtedly find issues which will need improvement across the system. This is exactly the kind of area where their role could make a measurable difference by:
- asking local people if the report messages are correct
- using what they say to set out a vision for change,
- holding a range of partners to account
- monitoring improvement
Independent Chair North Yorkshire Safeguarding Adults Board
Formerly Director of Adult Social Services, Calderdale and ADASS mental health lead
What does our report mean for nurses? Terry Bowyer, mental health campaigner and activist, tells us….
Helping people with schizophrenia is very rewarding, but can be difficult at times – I know.
I have schizophrenia and work in mental health as a Peer Specialist. The pressures of the modern mental health system can be very apparent. For workers, trying to balance your desire to help someone as best you can with the realities of referral criteria, processes and paperwork can be a huge challenge.
…people who access services and their families find the relationship they have with CPNs more helpful than that with psychiatrists or psychologists – Terry Bowyer, mental health campaigner and activist
What I’ve learnt through the work of the Schizophrenia Commission and listening to people with schizophrenia, nurses and psychiatrists is that often it’s the little things that count. So many people told us how a small gesture of understanding made such a difference to their lives. It could be a minute taken to listen patiently. Perhaps a bit of information about a local group where someone could meet peers who’d been through similar experiences. Or a reassuring story about others who had achieved a level of personal recovery.
It’s hard to overestimate how much a diagnosis of schizophrenia can knock people’s confidence and their hope. All of us working in the mental health system can do a lot to inspire people. The Commission’s survey of 2,500 people tells us that people who access services and their families find the relationship they have with CPNs more helpful than that with psychiatrists or psychologists – but we want all professionals to have this kind of therapeutic rapport with the people they work with. One woman told us about the trusting relationship she has with her practitioner: “She has encouraged me to see that I am an intelligent, capable woman.” It’s amazing to think that as professionals we can help to rebuild people’s identities in that way – it’s a real privilege but a big responsibility.
After the Commission’s inquiry, I’ve decided there are 6 things I’m going to commit to do on a daily basis. Whatever the situation, however tired, stressed or stretched I am, I’m going to always strive to:
- Be non-judgmental and treat people with empathy, dignity, and respect
- Show that I understand what it’s like to live with schizophrenia
- Listen to people and take seriously their accounts of their illness
- Pass on information about other support they can access
- Be sensitive to different explanations of mental illness, even if they’re very different from my own
- Be hopeful about what people can achieve with the right help
Those are my aspirations for my role as a worker in mental health. Some of my colleagues might have a different set of values and others may express similar things in different words. One of the ideas from the Schizophrenia Commission is that each service should develop a set of crucial values. This would help people who access services to know what to expect from staff. And staff would have a shared set of values that they could put into practice.
So what would your personal set of values be? Tell me on the Rethink Mental Illness LinkedIn page – I would very much like to know your thoughts. (Don’t worry if they’re not the same as mine – I want to hear what everyone thinks).