HOAX Our Right to Hope is a joint project between the Psychosis Research Unit and social enterprise Ziggy’s Wish. HOAX Our Right to Hope utilises award winning pieces created by Ziggy’s Wish and combines them to achieve a cross-media approach to storytelling. The three pieces of HOAX Our Right to Hope include the HOAX ‘My Lonely Heart’ stage musical, the HOAX ‘Psychosis Blues’ graphic novel and the HOAX ‘Our Right to Hope’ gamebook app. Through these pieces HOAX Our Right to Hope tells the story of the life and death of a young poet from Manchester with a diagnosis of schizophrenia. The HOAX Our Right to Hope research project is a questionnaire study to assess the acceptability and effectiveness of HOAX Our Right to Hope as a cross-media intervention to raise awareness of psychosis.
“They told me I had psychosis but that didn’t make sense to me… for me it was just confused thoughts … psychosis sounded like hallucinations and stuff and I definitely didn’t have that … I’m better now, but I still get confused thoughts.” (Service user)
“It’s like the whole of the top of your head comes off. There’s just this incredible rush of energy and, and hysteria almost. And, then I started to hallucinate visually, and I just saw this lovely garden, and I thought oh this heaven. And by that point I was completely lost because then I had an alternative to that, and I really believed I was going to hell. I thought I was dying … I’m not desperately religious. And I woke up and Mum came into the room and I was completely gone. And we were kind of left to deal with it for a couple of days. I didn’t understand what had happened to me. I really thought I was dying.” (Service user)
• Psychosis is very common; Psychosis affects 3 in every 100 people.
• Up to 10% of people will, at some point in their life, hear a voice talking to them when there is no-one there (Slade & Bentall, 1988; Johns et al., 2014).
• Up to 70% of the general population endorsed delusional beliefs (Verdoux et al., 1998).
• Results of a Gallup poll which surveyed 60,000 adults in 1989 found:
50% believed people can read other people’s mind
50% believed people can predict the future
23% believed in reincarnation
23% believed in horoscopes
21% believed in the devil
• It is widely accepted that people in the general population experience psychosis related symptoms from time to time such as hearing the phone ringing when it isn’t, feeling paranoid or hearing someone calling their name.
• Despite this, it is often assumed there is a straightforward diving line between mental health and illness, and that illness such as schizophrenia is the reason for hearing voices.
• However, there appears in fact to be a continuum between good and poor mental health that we all move along at different points in our lives. For example, at times we may become more anxious, be more suspicious, or have beliefs others would find odd.
• To this end we all fall somewhere on the continuum and people who meet diagnostic criteria for psychosis or schizophrenia are just further along the continuum, at the higher end.
• It is important to remember, stressful life events are likely to have a significant impact on how we think and feel, together with things such as how much support we have and what opportunities we have to make sense of what is happening (Andrew, Gray & Snowden, 2008).
• Surveys have evidenced many people hear voices talking to them when there is no –one there, but the voices say neutral, pleasant, or even helpful things so it is not a problem (May, 2013)
“I see the voices I hear as parts of myself that hold strong emotions it didn’t feel safe enough to feel. They are parts of me without which I would not have survived.” (Service user)
“When you can’t find a way out when you get into a complex situation, they (voices) help guide you. You don’t have to listen; you don’t have to take their advice but it’s nice that they give it anyway.” (Service user)
• Others develop ways of coping with these experiences on their own or with the help from people around them (Miriam, 2012)
• Many people do not come into contact with mental health services because they do not find their experiences distressing (Strauss, 1969; Van Os, Hansen, Bijl & Ravelli, 2000), and most of these people have never thought of themselves, or have been thought of as having a mental health difficulty (Beavan, Read, Cartwright, 2011)
• However, some people are so distressed by their experiences they seek professional help, while others come to the attention of health professionals because other people consider their behaviour odd or worrying, or fear it is putting the person or others at risk.
• Seeming anxious, stressed, scared, confused, irritable or angry.
• Finding it hard to trust people and maintain relationships
• Appearing suspicious of the motives of other people and organisations
• Feeling disbelieved or misunderstood
• Becoming withdrawn or isolated and as a consequence their study, work or social life deteriorates
• Experiencing mood swings, sleep problems, appetite changes or a loss in concentration
• It is common for others e.g. friends and family to perceive that something is ‘not quite right.’
“I work four days a week in a professional job; I own my own house and live happily with my partner and pets. Occasionally I hear voices – for example when I have been particularly stressed or tired, or I have seen visions after bereavement. Knowing that many people hear voices and live well, and that some cultures see these experiences as a gift, helps me to never catastrophise or to worry that it may be the start of a breakdown. Although I am lucky that the experiences have never been as upsetting as some people’s, if someone had told me it was madness I could have got into a vicious cycle and struggled to get out.” (Service-user)
• Of the people who come into contact with services, about half will experience the problems once and then recover completely.
• Only a minority experience on-going difficulties (Slade, Amering & Oades, 2008) for those people it is vital long-term, open-ended, high-quality support is available.
“Recovery is about building a meaningful and satisfying life, as defined by the person themselves, whether or not there are ongoing or recurring symptoms or problems.” (Shepherd, Boardman & Slade, 2008)
• Outcome is a complex phenomenon and the important outcomes are those that the person themselves sees as significant
• ‘Getting better’ for some means reducing the frequency or intensity of the experiences. However, for others it means: improved relationships, self-worth, greater engagement in work and activities, being able to cope with everyday life, physical health and well-being (Meddings & Perkins, 2002), hope for the future and a sense of purpose (Pitt et al., 2007).
• There are five processes which appear to be particularly important for recovery and well-being. These are connecting to the world outside of oneself (e.g. supportive relationships, spirituality), hope, a positive identity beyond being a patient, finding meaning in life, and empowerment (learning what helps and so gaining control, and having the right opportunities) (Neil et al., 2009).
• Bereavement- people who have lost someone very close to them often report hearing them talking to them or feeling as though they are with them even though they can’t see them.
• Lack of sleep – symptoms of psychosis, particularly hallucinations can happen if an individual has periods of severe lack of sleep.
• Drugs- people who use a lot of cannabis appear to be more at risk of developing psychosis (Arseneault, 2004; Kuepper et al., 2010). However, it is difficult to separate out the effects of the drug from the circumstances that may have led people to use drugs in the first place. Nevertheless, people often report seeing or hearing things other may not as a side effect of taking street drugs or prescribed drugs.
• Physical illness or injury- people may see or hear things others do not if they are suffering with a high fever, have sustained a head injury or have lead or mercury poisoning.
• Spiritual experiences – people sometimes experience voices or visions as part of a spiritual experience. This may be a positive experience for some such as making them feel special or giving them the feeling of making sense of one’s life, however for others this experience can be a negative one for example feeling they are possessed by an evil spirit.
• Family history – people are more likely to experience psychosis if a blood relative has also experienced psychosis. 10% of people with psychosis have one parent who also has psychosis (Gottesman, 1963) and 9% of people with psychosis have a sibling with psychosis also. This compares to 1% of the population generally (Sartorius et al, 1986). However, it is important to note 60% of clients with psychosis do not have a relative with psychosis (Sartorius et al, 1986) and furthermore, no causal gene has been identified.
• Childhood trauma- There is strong evidence that psychosis can be a reaction to stressful events and life circumstances particularly abuse and other forms of trauma (Varese, Smeets & Drukker, 2012; Read and Bentall, 2012). Individuals with psychosis were 2.72 times more likely to have been exposed to childhood adversity than individuals without psychosis (Varese et al, 2012). Furthermore, 33% of cases of psychosis occurring in the current population is attributable to childhood trauma (that is the same number of people as the population of Huddersfield). Psychologists are reaching the conclusion that psychosis is often no more and no less than a reaction to traumatic events:
“There is growing evidence that the experiences service users report… are, in many cases, a natural reaction to the abuses they have been subjected to. There is abuse and there are the effects of abuse. There is no additional psychosis that needs explaining” (Johnstone, 2011).
It is possible to manage the symptoms of psychosis and recover with the right treatment and support. However, this does not always mean that the symptoms of psychosis will go away completely. People may find they still experience the symptoms associated with psychosis, but instead learn ways of coping so they are less distressing and have a less negative impact on their life. It is important that if people are worried about anything they themselves or a loved one may be experiencing, they seek help and talking to a GP is often a good first point of call for signposting to other services which can help with any difficulties the person may be experiencing.
• Cognitive Behavioural Therapy (CBT) – CBT in this context sometimes called CBTp which is short for CBT for psychosis, is a structured talking therapy which looks at the way people understand and react to their experiences (Morrison et al., 2007). The main assumption behind CBT is that distress is at least partly related to the way people interpret, make sense of and responds to things that happen (Freeman and Garety, 2006). The therapist empathises with the person’s distress and stresses that it is understandable given the circumstances. They to help the person work out what might be going on by aiming to identify connections between thoughts, feelings and behaviour and help the person to develop practical skills which may help to identify and avoid any vicious circles the person may be caught up in. CBT for psychosis has a strong evidence base regarding its effectiveness in reducing distressing symptoms associated with psychosis and research trials have found that on average, people gain as much benefit from CBT as from medication (Pfammater, Junghan & Brenner, 2006; National Institute for Health and Care Excellence, 2014; Correll & Carbon, 2014; Wykes, Everitt & Tarrier, 2008; Jauhar et al., 2014). The National Institute of Clinical Excellence (NICE) guidelines (National Institute for Health and Care Excellence, 2014) recommend a course of CBT for individuals experiencing psychosis or those considered to be at increased risk of developing psychosis.
• Family intervention- Many families find it helpful to have a number of meetings with a professional who is specifically trained in helping families. The aim of family work is to help the whole family understand what the person experiencing psychosis related difficulties is going through, and to help identify what is helpful and unhelpful for both the individual experiencing psychosis related difficulties and the family. For example, if a family member is worried about the individual experiencing psychosis, they may focus too much attention on them which could cause them to feel worse. Clinical psychologists have been at the forefront of developing and evaluating ‘family interventions’ and some people find them as helpful, or sometimes even more helpful than other approaches such as individual therapy or medication (Seikkula and Arnkil, 2006; Fadden, James and Pinfold, 2012; Meddings, Gordon and Owen, 2010). The National Institute of Clinical Excellence (NICE) recommends that everyone diagnosed with psychosis should have access to family interventions (National Institute for Health and Care Excellence, 2014)
• Medication- Most people diagnosed with psychosis will be offered antipsychotic medication. This medication is not a cure for psychosis related difficulties but can help to alleviate symptoms such as reducing anxiety; reducing incoherent speech and confusion; and lessening delusions and hallucinations. By reducing these symptoms this can help alleviate the distress these symptoms can cause for people experiencing them. It is important to note however, antipsychotic medication can have unwelcome side effects, some of which can be quite serious. It is therefore necessary that before starting to take a course of antipsychotic medication, people discuss the associated benefits and possible risks with their doctor or care team in order to make an informed decision about whether to start taking this medication.
• Self-help -People experiencing psychosis related difficulties may find it useful to attend a support group in order to meet people with similar experiences and share helpful ways of coping. Support groups can offer people a safe space to talk about their experiences with those who have similar experiences and this may help them to understand their own experiences better. Support groups can help people to feel accepted and listened to, which in turn can make them feel they are not alone and increase their self-esteem and sense of hope. Various organisations such as the Hearing Voices Network, the National Paranoia Network run support groups that may be helpful for an individual experiencing psychosis related difficulties. People can find support groups in their area online or via the Mind Infoline. Other things people can do to help with their physical and mental well-being include being outside in a green space, getting more sleep which can help them to cope better and feel calmer, eating a healthy well-balanced diet, relaxation exercises or yoga can help to alleviate stress and doing things people enjoy (e.g. cooking, gardening) can help to boost their self-esteem.
• People with mental health problems experience prejudice and discrimination in almost every aspect of their lives; they are pre-judged, find it hard to get jobs, and can have difficulties sustaining friendships and relationships (Tartakovsky, 2009).
• Research has shown that ignorance, fear and negative stereotypes presented in the media all contribute to negative attitudes towards mental ill health with people depicted as violent and unpredictable (Time to Change, 2009; Time to Change, 2013).
• Many service users have said the stigma associated with mental ill health is more disabling than the illness itself (Time to Change, 2013).
• Times are changing…. We all have a role to play in tackling mental health stigma.
Eleanor Longden Ted Talks: Fourteen-minute TED talk: voice hearer and psychologist Eleanor Longden talks about her experiences. ‘Longden tells the moving tale of her year-long journey back to mental health, and makes the case that it was through learning to listen to her voices that she was able to survive.
Simon Says: Psychosis! Excellent short documentary exploring the experience of psychosis and how three young people ‘journeyed back from the edge’ with help from an early intervention service.
A short film about psychosis was produced by service users and staff from GMW’s Early intervention Service in collaboration with a local filmmaker. The aim of the film is to raise awareness, reduce stigma and encourage people to seek help early.
Mind Web Site: Details of local Minds and other local services, and Mind’s Legal Advice Line. Language Line is available for talking in a language other than English.
Mind Email: email@example.com
Mind Infoline: 0300 123 3393 (Monday to Friday, 9am to 6pm)
Hearing Voices Network: 0114 271 8210 hearing-voices.org Information and support for people who hear voices and local support groups.
Elefriends: A safe, supportive online community where you can listen, be heard and share your experiences with others.
Intervoice: International community for people who hear voices.
National Institute for Health and Care Excellence: 0845 003 7780 Provides guidance on health and social care.
National Paranoia Network: 0114 271 8210 Information and support for people who experience paranoid thoughts.
National Perceptions Forum: A forum for people who experience psychosis
Rethink Mental Illness: Advice line: 0300 5000 927 Information and support for people affected by severe mental illness.
Samaritans 24-hour helpline: 116 123 (freephone) email: firstname.lastname@example.org samaritans.org Freepost RSRB-KKBY-CYJK Chris, PO Box 90 90 Stirling FK8 2SA 24-hour support for anyone feeling down, experiencing distress or struggling to cope.