Thursday 22 November 2012

Flupenthixol versus placebo for schizophrenia.

Flupenthixol is an antipsychotic drug, first made available in the UK in 1965. Although this drug has been available for many years, few systematic reviews of its effectiveness are available and the effects of this drug in helping people cope with the symptoms of schizophrenia are not currently well measured, quantified and known.

Read the full summary here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0049715/

From a service user perspective (SUPER), it may at first appear quite shocking that the use of flupenthixol is more rooted in the clinical experience and the everyday decision making of psychiatrists instead of being based on firm scientific knowledge.  This is often the case, though.  In my and other service users’ experience, we often progress through different medications until one is found that helps in coping with symptoms such as hearing voices and which lead to feelings of better stability. 

Side- effects from medication are nearly always a problem, with feelings of sleepiness, weight gain, restlessness, and shaking hands.  But the dosage of medication can always be reduced over time.  Newer drugs with less side- effects can be introduced by talking openly with a psychiatrist about your feelings and difficulties with side- effects.       

It has also been found that medication works better when combined with more person- centred care, such as psychotherapy, counselling, cognitive behavioural therapy, hearing voices and stress management groups, creative writing, music and art therapy. 

Benjamin Gray
Service User Expert
Rethink Mental Illness.  

Haloperidol as a means of calming people who are aggressive or agitated due to psychosis.

Haloperidol is a drug that can be taken as by mouth or injected. As well as being an antipsychotic (preventing psychosis), it calms people down or helps them to sleep.

Read the full summary here: http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0049743/

From a service user perspective (SUPER), the experience of hearing voices, being agitated and seeing things can be confusing, frightening and sometimes terrifying.  If people’s voices are shouting at them, putting them down, being derogatory or abusive, then it is perhaps not surprising that people become aggressive and sometimes violent.  After all, if someone shouted at you in the street, many people would just shout back!  This is what it is like for people who hear voices or see things: it is like someone shouting straight into your ear and never going away. 

Many people choose to shout back at their goading voices and this can be taken as being aggressive and violent.  No one can hear the voice, the verbal abuse or what the voice is saying, so an aggressive response to hearing an internal voice can seem to come from nowhere.  A service user that I met some time ago would often walk along the hospital corridors, screaming back at her voices.  She would sometimes hit herself violently on the head, as if trying to physically knock the voices out of her mind.  This was seen as aggression and unexplained violence by onlookers, but left me with mixed feelings of pity, consternation and fear.  

Similarly, three other people who I met in hospital would often hear voices that seemed to come from the television.  This would make them frightened and aggressive.  On one occasion, this led to the television being smashed and the individual being forcibly injected with tranquillisers to calm him down.  

Unfortunately, some people may become very aggressive or violent towards others.  They may have panic attacks or be in emotional turmoil.  Sometimes sedatives and tranquillisers are necessary to help people calm down (and some people even ask for them to help them cope). 

The use of these sedatives is never ideal, and the use of forced injection can feel like a violation.  It can break the trust between the person with mental health problems and nurses.  Nurses want to foster and build therapeutic relationships with people.  But all the time it takes to build up feelings of trust and intimacy can be broken in an instant, when force is used to restrain or inject the person.

I was unfortunate enough to witness the injection of sedatives on two other occasions: the first time involving a young girl called ‘B’ who was trying to cut herself with the shards of a broken bottle; and the second time a man called ‘R’ who was violently kicking the door of the nurse station and shouting abuse at staff.  The use of sedatives in these two situations could perhaps be said to be necessary but never ideal or therapeutic in the long term.

Often, all it takes is for a nurse or member of staff to ‘de-escalate’ the situation.  This involves nurses talking to the individual, to calm them down before they become agitated or aggressive.  Other techniques, such as seclusion, can often give people some space and time to calm down in their own room. 

Benjamin Gray
Service User and Service User Expert
Rethink Mental Illness

Management of sexual problems due to antipsychotic drug therapy.

Drugs commonly used to treat schizophrenia often cause sexual problems. This may affect erection, lubrication, orgasm, desire or libido, ejaculation, sexual arousal or overall sexual satisfaction. This may have serious negative consequences such as putting people off taking their medication or stopping taking drugs at an early stage. Sexual problems may limit a person’s quality of life, worsen self-esteem and cause relationship problems. Strategies to manage these sexual problems are taking additional drugs (Viagra TM), short drug holidays when people temporarily stop antipsychotic medication, reduction of dose and switching to another antipsychotic drug.

Read the full summary here: http://summaries.cochrane.org/CD003546/management-of-sexual-problems-due-to-antipsychotic-drug-therapy

From a service user perspective (SUPER), having a mental health problem can affect all aspects of life and limit people’s quality of life.  People with mental health problems face difficulties in education, employment, stigma and social exclusion.  Having a mental health problem, combined with side- effects from medication, can make you feel very tired and reduce being able to feel emotions such as pleasure, satisfaction and happiness.  People may also experience sexual and relationship problems.

Many partners of people with mental health problems who I have spoken with say that mental illness has changed the person they love, so that they are almost unrecognisable.  They feel that they have lost the person they love, causing problems of intimacy and trust in sexual relationships.

Having a mental health problem can make you feel like a non- person, whose views, life and sexuality feel like they are unimportant and eroded. 

Several strategies to manage sexual problems are mentioned (such as additional drugs like Viagra, short drug holidays when people temporarily stop antipsychotic medication, reduction of dose and switching to another antipsychotic drug).  Talking therapies, such as psychotherapy and sex therapy, may also help to improve people’s relationships and sex lives.




Benzodiazepines for Schizophrenia.

Benzodiazepines can be taken alone or in combination with more traditional antipsychotic drugs. They cause sedation, calmness and relax the muscles, so are helpful in calming down agitated people with anxiety, sleep problems, seizures, alcohol withdrawal and acute mental health problems.

Read the full summary here: http://summaries.cochrane.org/CD006391/benzodiazepines-for-schizophrenia

From a service user perspective (SUPER), benzodiazepines are frequently used as a drug of choice for schizophrenia.  It is sobering that this is the case even though there is little information or evidence to support their widespread use.  Furthermore, the range and complexity of drugs available to treat mental health issues is large and confusing.  Many drugs have triple barrelled and long names, which are hard to say and pronounce (Benzodiazepines, Risperidone; Antiglucocorticoid).

If people are taking one type of drug, then it can be quite daunting and scary to switch to a new drug or a combination of several new drugs.  New drugs do have the promise to work better for people who use mental health services, but there is always doubt at the back of the mind about possible relapse, not least because most drugs have side- effects (such as weight gain, sleepiness, shaking and dizziness).

This points out the fact that there needs to be better information sharing between psychiatrists and people who use mental health services.  The benefits of taking certain drugs need to be explained, as well as the potential side- effects, to promote better understanding and to encourage people to regularly take their medication. 

However, if there is little information and evidence to support a drug’s prescription, then psychiatrists might be basing their prescription of drugs on daily clinical judgement and experience, rather than strong and proven research evidence.  Although this means that better information and research evidence is needed to support the use of a drug, it also means that psychiatrists and service users hopefully know each other quite well.  They can talk to one another, collaborate and discuss which medication works best for them and come up with practical and real- life solutions to improve the lives of people who use mental health services.   

Benjamin Gray
Service User and Service User Expert
Rethink Mental Illness.

Wednesday 7 November 2012

Information and Communication Technology for People with Schizophrenia.

Patient education and support for people with schizophrenia by using information and communication technology.

Information and Communication Technology (ICT) includes the use of computers, telephones, television and radio, video and audio recordings. It consists of all technical means used to handle information and communication. During the last twenty years there has been a growing trend towards the use of ICT for the delivery of education, treatment and social support for people with mental illness.

Education about illness and treatment has been found to be a good way to increase a person's awareness of their health. ICT has the potential to improve many aspects of overall care, including: better education and social support; improved information and management of illness; increased access to health services; improved quality of care; better contact and continuity with services and cut costs. Recent studies show that ICT and the web may also support people in their working lives and social relationships plus help cope with depression and anxiety. However, there is a lack of knowledge about the specific effectiveness of ICT for helping people with severe mental health problems such as schizophrenia.

This review includes six studies with a total of 1063 people. Although education and support using ICT shows great promise, there was no clear benefit of using ICT (when compared with standard or usual care and/or other methods of education and support) for people with severe mental illness. However, the authors of the review suggest that this should not put off or postpone future high quality research on ICT, which is a promising and growing area of much importance.

Find the full summary here: http://summaries.cochrane.org/CD007198/patient-education-and-support-for-people-with-schizophrenia-by-using-information-and-communication-technology


From a service user perspective (SUPER), Information and Communication Technology (ICT) and especially the World Wide Web (WWW) are a growing and global part of our everyday lives.  This includes a growing number of websites, telephone lines and ICT resources that help people with their health and social support.  Although these should never stand in place of face-to-face care, they are easily accessed and can help people with information to better manage their mental health. 

In some families, a computer may not be available and be seen as an expensive luxury.  Phone calls may not be as good as meeting someone in person.  However, there are websites and phone lines that help people as a first port of call, as an initial contact that leads to fuller treatment and support (such as NHS Direct).

There are also a growing number of ICT packs and websites that are produced by people who use mental health services for people who use mental health services.  In other words, people with mental health issues are producing ICT training materials, websites, service user forums, chat rooms and discussion lists for people to help in their treatment, care and recovery.

For example, see:

http://www.intervoiceonline.org/

http://www.hearing-voices.org/

http://www.asylumonline.net/

http://www.mindfreedom.org/about-us

http://www.workingtorecovery.co.uk/

http://health.groups.yahoo.com/group/voice-hearers/

Friday 15 June 2012

Cognitive behaviour therapy versus other psychosocial treatments for schizophrenia

Cognitive behavioural therapy (CBT) is a talking therapy first mentioned in 1952 but only became recommended as a routine treatment in 2002. CBT encourages people to openly discuss their beliefs, emotions and experiences with a therapist (individually or in a group), as well as participate in assessing their symptoms, emotional distress and behaviour. Such discussion is thought to help develop ways of challenging, coping and managing unhelpful thoughts and problem behaviour. People with schizophrenia may have difficulties with concentration, attention and motivation. The capacity to think, feel pleasure, talk openly and act also may be reduced. All of which can mean making friends, living independently and finding employment are sometimes hard. The idea of CBT is to help with these problems by coming up with ‘real world’ coping strategies and problem solving skills.  

Read more and find the full summary here: http://summaries.cochrane.org/CD008712/cognitive-behaviour-therapy-versus-other-psychosocial-treatments-for-schizophrenia

Perhaps the most important issue from the service user perspective (SUPER) is that waiting times of more than one year are commonplace to get into CBT.  The ratio of people with schizophrenia needing or wanting CBT to available therapists (and the cost of these therapists to health services) may limit the uptake and impact of CBT. 

Uptake of CBT by people with less severe mental health problems (such as depression, which the review found might benefit more from CBT) may also limit access for people with more severe mental health issues such as schizophrenia.  CBT and other talking therapies may be more of an obstacle for people with schizophrenia, because hearing voices, seeing things, having strange beliefs and thoughts may impede the ability to talk and communicate. 

Research also did not take into account CBT and other talking therapies with regard to race, gender and age.  These are very important and should be considered.  In terms of race, for example, therapists and mental health professionals may not share the same culture, first language, values and religious beliefs of service users, leading to cultural misreading or misunderstanding.  Both the content and meaning of people’s experiences may be ‘lost in translation’ by therapists.  This could be rectified by appropriate and racially sensitive training.

From a more critical perspective, talking therapies could become a controlling or confessional exercise, where people with mental health problems may feel obliged or pressured into revealing their personal lives and emotional distress.  Talking therapy must tread carefully so as not to tell people with mental health problems what to think, feel and do, as this would create all kinds of problems, not least unequal relationships between therapists and service users and subsequent mistrust.  Establishing trust and dialogue with service users, appropriate training (perhaps training by service user advocates and experts) and the regular supervision of therapists would counteract this potential problem.   

Finally, CBT is new and evolving, having only become popular and a routine treatment in the last 10 years.  More research and development of CBT is therefore warranted. 

Thursday 31 May 2012

Zuclopenthixol acetate for acute schizophrenia and similar serious mental illnesses

Zuclopenthixol acetate is a tranquilliser and sedative that calms people down and helps them sleep.

People with schizophrenia or other mental health problems often hear disturbing voices or see distressing things (which are called delusions, hallucinations and psychosis). Such experiences can be frightening and may lead people to be aggressive or show violent behaviour toward themselves or other people. Tranquilising drugs are medications that help people to sleep or calm down, and help stop aggressive or disorganised behaviour. Tranquillisers should not have to be used often and also have few unwanted side-effects, such as pain at the injection site or uncontrolled shaking of the head and hands. Zuclopenthixol acetate is said to possess all these properties.

Read the full summary here:  http://summaries.cochrane.org/CD000525/zuclopenthixol-acetate-for-acute-schizophrenia-and-similar-serious-mental-illnesses

From a service user perspective (SUPER), the experience of hearing voices, being manic and seeing things can be confusing, frightening and sometimes terrifying.  It may be difficult for people to grasp what is ‘real’ and what is ‘delusion’.  People may have racing thoughts, which make you feel dizzy and something similar to vertigo.  Even your own thoughts and words may not seem to be your own, as voices or thoughts can sometimes feel as if they are inserted into your mind somehow by an outside force or person. 

If people’s voices are shouting at them, putting them down, being derogatory or abusive, then it is perhaps not surprising that people become aggressive and sometimes violent.  After all, if someone shouted at you in the street, many people would just shout back!  This is what it is like for people who hear voices or see things: it is like someone shouting straight into your ear and never going away. 

It may come as little surprise, then, that many people choose to shout back at their goading voices and this can be taken as being aggressive and violent.  No one can hear the voice, the verbal abuse or what the voice is saying, so an aggressive response to hearing an internal voice can seem to come from nowhere.  A service user that I met some time ago would often walk along the hospital corridors, screaming back at her voices.  She would sometimes hit herself violently on the head, as if trying to physically knock the voices out of her mind.  This was seen as aggression and unexplained violence by onlookers, but left me with mixed feelings of pity, consternation and fear.

Unfortunately, some people may become very aggressive or violent towards others.  They may have panic attacks or be in emotional turmoil.  Sometimes sedatives and tranquillisers are necessary to help people calm down (and some people even ask for them to help them cope). 

The use of these sedatives is never ideal, and the use of forced or coerced injection is a horrible experience, which is degrading both to the person being injected and unpleasant for the nurse doing the injection.  Forced injection can feel like a violation.  It can break the trust between the person with mental health problems and nurses.  Nurses want to provide therapy and care but at the same time have to deal with sometimes violent and aggressive behaviour, meaning that nursing work also has an element of social control.  This care/ control dichotomy (or split) is a catch- 22, with no clear winners or losers.  Nurses want to foster and build therapeutic relationships with people.  But all the time it takes to build up feelings of trust and intimacy can be broken in an instant, when force is used to restrain or inject the person.

In a mental health unit, with lots of beds and people, there is increased potential for friction and conflict between people.  I was unfortunate enough to witness the forced injection of sedatives on two occasions: the first time involving a young girl called ‘B’ who was trying to cut herself with the shards of a broken bottle; and the second time a man called ‘R’ who was violently kicking the door of the nurse station and shouting abuse at staff.  With the catch- 22 of care/ control, the use of sedatives could perhaps be said to be necessary but never ideal or therapeutic in the long term.

Seclusion, where an aggressive or violent individual is kept in their room is also far from ideal.  But seclusion may be better than the injection of sedatives and tranquillisers.  At the same time, nurses have a duty of care toward the individual and some people request tranquilisers to calm down.  The review suggested that zuclopenthixol acetate may result in less forced injections, where someone may need to be restrained so as to have the injection to calm down.  Low doses of the drug (as low as 25mg) may be just as good and effective as higher doses (up to 100mg).    

Thursday 24 May 2012

Crisis Intervention for People with Mental Illness

Read the most current research of Cochrane on Crisis Intervention.

Crisis care, where support is provided during a crisis for service users (either in their home or a community setting) was found by this review to provide a package of support that was worthwhile, acceptable and less expensive.

Read the full summary here: http://summaries.cochrane.org/CD001087/crisis-intervention-for-people-with-severe-mental-illnesses

From a service user perspective (SUPER), it is vital that psychiatrists and community mental health teams explain the need for crisis care, so that service users know they will be supported in a non- intrusive and flexible way. 

Evening, weekend, out of hours and crisis telephone services have become increasingly common and promoted, making crisis care in the home better, more flexible and therefore more personalised to the needs of service users. 

Attrition rates (service users who opt out or stop their crisis care) also need to be focused on to evaluate different packages or types of crisis care, their effectiveness, what packages of crisis care work best for service users, their families, carers and community mental health teams and begin to ask why some service users drop out from this sort of care. 

There is also the issue that crisis care can place more burden, stress, workload and burnout on community mental health teams, which is particularly a challenge at a time when health and social care services are facing budget cuts and already being overstretched.

Benjamin Gray,
Service User and Service User Expert,
Rethink Mental Illness.


Wednesday 23 May 2012

Cochrane Schizophrenia Group- Web Home Page

Find all you need to know about the Cochrane Schizophrenia Group here at their website homepage:

http://szg.cochrane.org/

Life Skills for People with Schizophrenia

Want to know more about Life Skills Programmes to help people with schizophrenia and mental health problems?

Having a mental health problem can cause difficulties and obstacles in all areas of life, even those as simple as washing, shopping, talking openly with other people, brushing teeth, cleaning the house, managing money, making friends, shaving and being independent. 


Life skills programmes attempt to remedy some of these difficulties by encouraging independent living, so enhancing quality of life.


Read the full summary here: http://summaries.cochrane.org/CD000381/life-skills-programmes-for-chronic-mental-illnesses.

From a more directly service user perspective (SUPER), the experience of mental health problems (such as hearing voices and seeing things) and the sleep- like quality of many medications, often combine to limit the quality of life of service users or their ability to live everyday and fulfilling lives.  According to Suman Fernando, an eminent academic and psychiatrist, this can lead to people becoming “zombie- like” and institutionalised.  In the words of a service user:

“I’m hardly able to stand up, hardly able to walk, hardly able to talk, hardly able to wash, get dressed or even brush my teeth”. 

In order to try and lead better, more fulfilling and active lives (which break the vicious cycle of getting out of hospital only to be re-admitted again during a breakdown) a variety of approaches (including life skills, occupational therapy and peer support) will almost certainly be the way forward in the near future.  Life skills not only help service users establish some degree of independence, but also relieve the burden, work and stress often placed on family, friends and carers. 

Finally, the review focuses on ‘chronic’ or ‘severe mental illnesses’.  Other less severe mental health problems, such as depression, may be better suited to life skills.  By way of contrast, mental health problems for the elderly, such as dementia, have greater and longer-term needs of personal care (such as washing, grooming, feeding and toileting).  This limits or makes void the need for life skills training for people with dementia, but perhaps not for their carers.  Carers often bear the burden, stress and unpaid work of round-the-clock care, so training in life skills and peer support may help this often excluded, isolated and hidden group.     

Benjamin Gray,
Service User and Service User Expert,
Rethink Mental Illness.



Hearing Voices

Here is my story of hearing voices that appeared in the Guardian:

Hidden Demons: http://www.guardian.co.uk/society/2007/jun/15/socialcare

Academic Benjamin Gray recalls his experiences of dealing with voices that other people could not hear.

Among the people I met during my time there was Rosemary. The last time I saw her she was waiting to be discharged from the hospital. She had no one to go home to, just an empty house.

Rosemary was an unassuming, quietly spoken woman, unremarkable apart from an air of sadness and loss. Rosemary had told me and many of the nurses that she would be better off dead than hearing any more of the terrible and taunting voices that kept her from sleeping. Better up there with her mother in heaven, she told me, then down here in the hell of the psychiatric ward with her voices.

Within a few days of being discharged, she was with her mother again. The nurses called a meeting in the communal lounge. There had been an accident. Rosemary had thrown herself in front of a train. The girl next to me at the meeting broke into tears.  It felt like it could have been any of us.

Night after sleepless night and through the long, seemingly endless days on the ward, where smoking and TV stood in place of any attempt of therapy, I and my fellow patients experienced similar feelings to those of Rosemary, feelings of loss, isolation, pain, confusion and helplessness.

"You're alone," an insidious voice told me. "You're going to get what's coming to you."

Joy was different. She was a mother of two autistic boys and had a loving husband who would visit her every day and brought her cigarettes, the social currency of the ward. There was always a glimmer of hope in her eyes, despite the voices that urged her to set herself on fire and despite seeing people covered in snakes.

Then one evening, as the nurses dispensed medication while we lined up zombie-like, I found her in hysterical tears. She told me about the voices and the serpents. I held her for a moment, trying to comfort her, as the nurses were doing nothing to calm her down. I said it would all be all right and there was always hope.

"You're going down there," a voice that sounded like Joy's hissed at me. "You wait until you see what I'm going to do to you."

No one moved or looked startled. It was just me hearing the voice. I tried not to answer it. Better to ignore the voice, repress it and soldier on, I thought. I had seen others screaming back at their voices, and it had left me with feelings of consternation, pity and fear.

I didn't want to look mad, like them. Any symptoms of hearing voices would go on medical case notes, be raised as proof of insanity and keep me locked up in the hell of the ward away from family, friends and what seemed like a long-distant normal life.

I learned several important lessons: never admit you hear voices; certainly never answer them; do exactly as you're told by staff or concerned family or you'll be seen as ill; never question your diagnosis or disagree with your psychiatrist; be compliant and admit your mental illness or you'll never be discharged.

All the time the voices got worse. "Hot fire in your eyes!" shouted a voice to me in the ward.

There is little study of what schizophrenics' voices say to them, which would make people's experiences more valid and meaningful and also lend itself to a more human account of mental illness. People's experiences of hearing voices are silenced, which can only augment ignorance and fear, both in society and in the mental healthcare system.

To make matters worse, it is almost impossible to talk with other people and relate the pain that voices inflict when they are raging inside you and shouting you down.

John was a child of the 60s and hadn't seen his family for twenty years. Because of his voices they had disowned him. "Nobody cares," said a sad voice in John's intonation.

Welcome- Ben Gray (Rethink Mental Illness)

Welcome and Introduction!

Welcome to the first blog of Ben Gray, Service User Expert at Rethink Mental Illness.  We will be showcasing our work with the Cochrane Schizophrenia Group at the University of Nottingham.

This is my personal blog and perspective.  It does not necessarily reflect the views of Rethink Mental Illness and the Cochrane Schizophrenia Group.

You will find links to lay summaries of the latest Cochrane research and also my service user perspective (SUPER), adding relevance and lived experience.