1) Poverty and severe mental illness (Rethink public policy no. 57)
Poverty and severe mental illness
Poverty adds to the distress experienced by people with a severe mental illness. Government policies should be directed towards overcoming this distress and improving the quality of life of such people.
1 The study by the Social Exclusion Unit into mental health is welcome.
2 The Government should do its utmost to rid the social security system of disincentives to seeking employment and ease the procedures for moving from benefits to work and vice versa for people with fluctuating capacity to work. This should include a person's returning to benefits without making a fresh application if work comes to an end within a set period such as a year.
3 Where appropriate, people with a severe mental illness should be helped regularly by local services to manage their budget, maximise their income and generally help them to make decisions.
Rethink presses for improvements to social security entitlement, including reducing disincentives to work, and for the improved administration of the benefits system. Rethink National Advice Service provides information and advice on debt management and benefits. Locally, people who use Rethink services are helped to claim the benefits to which they are entitled.
Questions and Answers
Q How does poverty affect the lives of people who experience severe mental illness?
A It may result in their:
.becoming severely depressed, anxious and frustrated
.lacking energy through the sedating effects of medication
. having a poor diet and lacking exercise
. not being able to afford a social life or holidays
. not being able to engage in creative opportunities through not being able to afford materials
. not being able to progress towards paid work because they cannot afford suitable clothing or child care
. not being able to provide for themselves for the future because they cannot afford to save money
. not being able to afford insurance
. living in poor accommodation
. struggling to make it through each day
. relying on others, including their families, to subsidise them
. being stigmatised through mental illness and poverty
. problems with severe mental illness being compounded, particularly as regards social isolation and motivation.
Q What steps need to be taken to reduce poverty among people with a severe mental illness?
A They may need help and support:
. with budgeting, including encouragement to spend money when necessary
. in coping with debt
. in maximising their income by claiming all their entitlements
. to help reduce their expenditure, eg through help to quit smoking tobacco or reduce alcohol consumption
. by the abolition of prescription charges for people with a severe mental illness
. help to obtain employment for those seeking to do so
. help to resume and complete their education to improve their prospects for employment.
1 The report, Kept out or opted out? Understanding and combatting financial exclusion (1999) found that 1.5 million households in Britain do not use financial services such as banks. Socio-economic factors are most significant in predicting financial exclusion; being in receipt of income-related benefits had the largest effect.
2 The MIND Inquiry, Creating Accepting Communities (1998/99), found that only 13% of people with serious mental health problems are working. Its recommendations included:
. the social exclusion of people with mental health problems needs to be tackled at national policy level
. the proposed new Mental Health Act should enshrine the principle of non-discrimination on grounds of mental ill-health
. a co-ordinated national initiative must be established to promote employment for mental health service users across the country.
3 The 2001 survey of 556 mental health service users by Focus on Mental Health, An uphill struggle, found that:
. 72% of those surveyed defined themselves as being on a low income
. 66% said that they had difficulties making their income last for a week
. 81% thought that mental health problems increased the likelihood of being on a low income
. 50% said that their financial situation meant that they were excluded from their community
. 47% were unemployed, 26% were involved in voluntary work, 15% were in employment, 13% were in education and 11% were retired.
4 The 2003 survey undertaken by Health Which? And MIND, The hidden costs of mental health care. found that 64% of those studied had paid or were still paying an average of £68 a month for care and treatment.
5 Standard one of the Mental Health National Service Framework (1999) says that health and social services should combat discrimination against people and groups with mental health problems, and promote their social inclusion.
6 The Government White Paper, Saving Lives: Our Healthier Nation (1999) acknowledges that more people who are worse off financially, particularly in inner cities, have mental illness; more contemplate suicide and more actually commit suicide than people who are better off, for example:
. unemployed people are twice as likely to suffer depression as those in work
. people sleeping rough or using night shelters are four times more likely to have a mental disorder than the general population
. people in prisons are 15 times more likely to have a psychotic disorder than the general population
. refugees have higher rates of mental disorder than the general population.
7 The 1999 Poverty and Social Exclusion Survey of Britain mental health findings were that people who suffered mental health lacked the following:
. fresh fruit and vegetables (71%)
. a warm waterproof coat (65%)
. two pairs of all-weather shoes (55%)
. a special outfit (50%)
. money to spend on self (46%)
. money to keep home decorated (46%)
. money to replace broken electrical goods (42.5%)
. home insurance (41%).
8 The 2000 Office for National Statistics study, Social and Economic Circumstances of Adults with a Mental Health Disorder, found that of people with psychosis:
. 72% were economically inactive
. were more likely to have left school before age 16 and without qualifications.
9 A study in Liverpool, Welfare benefits advice in primary care; evidence of improvements in health Abbott & Hobby 2000), found that those who received extra benefits, following advice being given, improved their emotional and mental health.
10 The World Health Organisation (WHO) report, Mental health: responding to the call for action (2002), said that given that poverty is a powerful determinant of mental disorders, there must be equitable treatment for the poor. Many families without proper support could fall into the vicious circle of poverty and mental disorder, from which it is hard or impossible to extricate themselves.
11 The Social Exclusion Unit (SEU), set up in 1997, issued a consultation document, Mental Health and Social Exclusion in May 2003 with the aim of establishing what more can be done to:
. enable more adults with mental health problems to enter and retain work?
. ensure that they have the same opportunities for social participation and access to services as the general population?
Rethink suggested as the most important items for the SEU to address:
. increased opportunities for employing people with experience of severe mental illness, most particularly, in mental health services where experience of mental illness can be valuable in helping those who use them to recover from mental illness
. refinement of social security benefits rules to enable people to move towards work at a pace they can sustain.
. continuing social and vocational support provided by, for example, day clubs, befrienders and mentors devoted to improving confidence and social skills
. the stigma attached to severe mental illness.
12 The effect of earnings on entitlement to social security benefits is complex and can result in disincentive to work. Many claimants are concerned that, should they return to work and become unwell again, they will have problems in regaining the benefits they left. It would help if they could resume benefits without completing an application form within a set period, eg of one year.
13 The Department for Work and Pensions will in future pay social security benefits to a bank account chosen by the claimant, who will be able to open a Post Office account especially to receive their benefits. There will, however, be no overdraft facilities.
2) Sexual issues relating to people with a severe mental illness, including harassment, sexual disfunction, psychosexual education and sexuality
People with a severe mental illness have a right to expect that mental health services will pay attention to problems that they face arising from sexual harassment or sexual dysfunction and help them overcome those problems. Also, they should not be discriminated against because of their sexual orientation.
1 Mental health services should have written policies with staff trained on protecting service users from sexual harassment, helping people overcome sexual dysfunction, safe sex and discrimination on grounds of sexual orientation.
2 People with a severe mental illness should be protected from unwelcome sexual advances. Reports of sexual assault on people with a severe mental illness should be taken seriously by mental health services and the police.
3 People with a severe mental illness should be given access to psychosexual education, including advice on contraception. Pressure to abort should not be exerted while offering help and advice.
4 Sexual issues should be considered as part of an holistic approach to assessment and care planning. Care should be taken as regards potential sexual dysfunction in prescribing anti-psychotic medication.
Rethink is committed to actively opposing all forms of discrimination, including on grounds of sexual orientation, and takes positive steps to implement policies and practices which counter direct and indirect discrimination and support an holistic approach to treatment and care.
Questions and Answers
Q What is Rethink's view on the issue of sexual relationships in psychiatric hospitals?
A A balance needs to be drawn between giving people the same right to privacy as other people and protecting people at a time of extreme vulnerability. Every person admitted to a psychiatric hospital has the right to safety and protection from unwanted and unwelcome advances and possible abuse. They may also need to be protected from their own inappropriate sexual urges, which may be completely out of character and may cause embarrassment later.
Relationships with those who provide their services are not acceptable. Those who provide services should be aware that a person's presenting behaviour when unwell may not be a true indication of their behaviour when well.
Q What steps should be taken with people with a severe mental illness as regards sexual dysfunction?
A Sexual dysfunction should be routinely identified during assessment but it rarely is. People with a severe mental illness should be advised of any potential sexual dysfunction as a result of the medication they are prescribed. If they experience sexual dysfunction, alternative medication should be considered. Women of child-bearing age should be told of any potential adverse side effects on pregnancy.
Q How well are sexual and sexuality issues dealt with in mental health services?
A On the whole, they are not well addressed.
1 In Sexual abuse and harassment in psychiatric settings (1999), the Royal College of Psychiatrists said that:
. sexual harassment occurs in a spectrum of behaviours from visual or verbal harassment to sexual assault or rape
. all patients need adequate privacy and space to get away from those perceived as threatening
. acutely ill patients in psychiatric units may be sexually disinhibited; others may be less able to cope with unwanted approaches from the opposite sex because their mental illness makes them more vulnerable.
The College recommended that:
. each psychiatric unit should have a clear written policy which covers acceptable consenting activity and issues such as harassment and sexual abuse; the policy should ensure that sexuality and sexual issues are considered as part of individual care plans
. staff training should be provided at all levels both in recognising and dealing with issues related to sexuality
2 Section 128 of the Mental Health Act, 1959 makes it an offence for male staff members to have unlawful sexual intercourse with a woman or commit homosexual acts if employed where the person is being treated for a mental disorder. The Sexual Offences Bill (2003) includes offences against people with a mental disorder or learning disability, except if they are lawfully married.
3 According to the Oxleas NHS Trust Psychotropic Drugs - a guide to drugs used in psychiatry (2002), sexual dysfunction has been reported as a side-effect of all antipsychotic medication. Examples include raised prolactin levels, which reduce sexual desire, ejaculatory problems and decreased dopamine levels, which can decrease libido. There is a paucity of research about sexual dysfunction in psychosis, particularly in women. Assessment can be difficult in someone who is psychotic.
4 In a review of the literature on HIV infection and schizophrenia, (Journal of Psychiatric and Mental Health Nursing 2002), Richard Gray et al. found that:
. In 2000, the prevalence of HIV infection among people aged 15-49 in Britain was 0.11%; in Western Europe it was 0.35%. The main mode of transmission was through men having sex with men.
. the prevalence of HIV infection in Western Europe for people with schizophrenia was around 5% in studies conducted in 1994 and 1997
. people with schizophrenia, who have sex, appear to be more likely to engage in known high-risk sexual behaviours; their level of HIV awareness is substantially lower than in the general population
. in an American study in 1994, condom use was very low, drug or alcohol use during sex was common as was sex for money, drugs or other goods; a majority of men who had sex with men did not see themselves as being gay
. people with schizophrenia have lower reproduction rates than the general population, with sexual disinterest and dysfunction being attributed to both the disorder and the side-effects of anti-psychotic medication; however, these problems do not eliminate the desire for sexual contact
. the sexual health policies of many mental health NHS Trusts are out-of-date, many simply banning sex for in-patients
. high rates of depression have also been observed in people with schizo-phrenia and psychotic symptoms such as delusions and hallucinations may make it difficult to form and maintain lasting relationships
5 Traditionally, homosexuality has been seen as a type of mental illness and was declassified as such in 1973 by the American Psychiatric Association and in 1992 by the World Health Organisation. Nevertheless, attitudes towards homosexuality are often negative, hostile and discriminatory. Even in countries where homosexuality is not illegal, it is often the case that homosexual couples are not awarded the same legal rights and recognition as heterosexual couples. Similar discrimination is experienced by people whose behaviour or appearance is different from the heterosexual norm, including transsexuals and transvestites. In the Netherlands and some other European countries, homosexual couples now have the same legal rights as heterosexual couples.
6 Section 26 of the Mental Health Act, 1983 does not include a gay or lesbian partner as a nearest relative. However, in 2002, the High Court issued a declaration that a homosexual partner of a patient, who had lived together for at least six months should, be treated as the nearest relative to achieve compatibility with Article 8 of the Human Rights Act, 1998. This provides that a person has a right to respect for their private life, which can only be restricted in specified circumstances.
7 In The mental health experience of gay men (JPMHN February 1998), AE Robertson found that the main issues were:
. coming to terms with one's sexuality
. family and social interactions
. the development of self-worth and experiences of prejudice
. depression and suicide
. seeking help, eg gay men were unwilling to disclose their sexuality in a health care setting leading to part of their mental health needs being unmet.
8 Rachel Perkins, writing in Mental Health Nursing (1995), described how anti-lesbianism characterised the attitudes and assumptions of some mental health professionals through:
. reassurance by denial eg "you are not really a lesbian"
. avoiding their client's lesbianism
. liberal approaches eg lesbians are the same as heterosexual women
. regarding lesbianism as a sin.
9 PACE (Promoting Lesbian and Gay Health and Well-being) in The experiences of lesbians, gay men and bisexuals in mental health services indicates that such people are unwilling to access mental health services through;
. fears about and experiences of mainstream services pathologising those whose identity or behaviour is not heterosexual
. fears about and experiences of being faced with ignorance and homophobia from both staff and users of services
. using services but not being 'out' leading to inappropriate care, loneliness, and isolation
. the non-existence of desired services.
10 Without Prejudice (MIND 1997) involved interviewing 55 gay, lesbian and bisexual service users. It found that:
. 78% expressed reservations about feeling safe enough to disclose their sexuality within mainstream mental health services
. 60% had denied their sexuality or let workers assume that they were heterosexual
. 73% had experienced some sort of prejudice or discrimination about their sexuality
. 88% of those who had experienced discrimination felt unable to challenge it, largely because of feelings of fear or vulnerability
. 51% said that their sexuality had been inappropriately used to explain the cause of their mental illness.
3) Street drugs and severe mental illness (Rethink public policy number 55)
Rethink believes that the use of street drugs triggers severe mental illness in vulnerable people and exacerbates the effects of severe mental illness
1 The potential risk to vulnerable young people of mental illness through taking street drugs needs to be more persuasively emphasised in drugs educational material and mental health services.
2 Those whose mental health has been adversely affected by taking street drugs and professionals who have first-hand experience of their effects should speak out about the risks.
3 Mental health services must take all possible steps to prevent trafficking in street drugs and to protect service users from the influence of those who use street drugs, including those service users who distribute them.
4 People with a severe mental illness who use street drugs should not be denied access to mental health services, but should not necessarily receive those services alongside people who do not use street drugs.
5 Any debate on the decriminalisation of cannabis and other street drugs needs to be informed by research evidence, including that obtained from service users and the families and friends who care for them, on the effects of taking drugs on mental illness, especially over the past 30 years.
Rethink contributes to the debate on street drugs by expressing the concerns of its members that they may trigger severe mental illness and do exacerbate its effects. We believe that street drugs are harmful to health and cost money that can be ill-afforded by many people who are not in paid employment. Rethink takes opportunities to influence educational material on street drugs and promotes the message that street drugs can be detrimental to their mental health.
Questions and Answers
Q Why do people use street drugs?
A Reasons include:
. inner feelings, eg to feel euphoric or more confident, to feel nothing or avoid unpleasant feelings, to forget troubles or problems
. social reasons, eg to enhance a social occasion, to celebrate or commiserate, being under peer pressure
Q What extra reasons do people with a severe mental illness have to use street drugs?
A People with a severe mental illness use street drugs for the same reasons as others but in addition may:
. seek to block out the debilitating symptoms of illness or side-effects of medication used to treat it that they find debilitating
. prefer to use street drugs than experience side-effects of psychiatric medication that they find debilitating
. feel that they are helped by using drugs or feel that their lives are not worth living
. see street drugs as a way of self-medicating to give them back some control without the shame and stigma of being diagnosed as mentally ill
. seek to relieve boredom, particularly in psychiatric units, loneliness or depression
. be seen by drugs pushers as an easy target
. be inadequately informed by mental health services as to their effects
. be more susceptible to peer pressure.
Q Is there a link between psychosis and the use of street drugs?
A Many people believe that street drugs can trigger psychosis, particularly those predisposed to it. More research is needed to determine whether there is a causal link. 'Psychosis' induced by street drugs may turn out to be paranoia, be short-lived and not lead to a long-term psychosis. However, this may mask a severe mental illness and cause confusion in diagnosis.
1 In this policy statement the term, street drugs includes illegal drugs but does not include drugs prescribed for the person, alcohol, solvents tobacco or nicotine.
2 The Misuse of Drugs Act 1971 places street drugs into three classes as follows:
. class A includes heroin, cocaine, ecstasy, lysergide (LSD), methadone, pethidine and cannabinol, a derivative of cannabis
. class B includes amphetamines, barbiturates, cannabis, codeine, dihydrocodeine and methylamphetamine
. class C includes benzodiazepines, buprenorphine, diethylpropion and anabolic steroids.
3 The maximum penalties for possession of illegal drugs in the UK are:
. class A - six months in prison and a fine of £5000 (in a magistrates court) or seven years and an unlimited fine (in a crown court)
. class B - three months in prison and a fine of £2500 (in a magistrates court) or five years in prison and an unlimited fine (in a crown court)
. class C - three months in prison and a fine of £500 (in a magistrates court) or two years in prison and an unlimited fine (in a crown court).
Two drugs not covered in this policy statement are nicotine and alcohol; use of both is legal.
4 Street drugs have differing effects as follows:
. depressing the central nervous system, eg benzodiazepines, opiates such as heroin, but also solvents and alcohol
. stimulating the central nervous system, eg amphetamines, cocaine, ecstasy but also caffeine and nicotine
. altering perception - LSD, hallucinogenic (magic) mushrooms
. altering mood, eg cannabis
. enhancing strength, eg anabolic steroids.
5 According to Dr J Sharpe of Duke University, USA, written accounts of cannabis cultivation appear in Chinese records from 28 BC. He said that it can be difficult to differentiate cannabis psychosis from schizophrenia; however, the former has short-lived toxic symptoms and is characterised by agitation, violence, flight of ideas and less thought disorder.
6 In March 2002, the Advisory Council on the Misuse of Drugs recommended that cannabis should be reclassified from class B to class C. It also advised that cannabis was unquestionably harmful and is anxious that the dangers associated with the use of cannabis preparations are widely known. Even the occasional use of cannabis poses significant dangers for people with disorders of the heart and circulation and for those with mental health problems such as schizophrenia. However, both groups are at much more significant risk from stimulants.
7 The Home Affairs Committee report, The Government's Drugs Policy: is it working? (2002) included the following recommendations:
. legalising and regulating some types of presently illegal drugs is not recommended at present
. cannabis should be reclassified from class B to class C
. ecstasy should be reclassified from class A to class B
. all drugs educational material should be based on the premise that any drug use can be harmful.
8 In July 2002 the Home Secretary confirmed that cannabis would be reclassified to class C, subject to Parliamentary approval, but it will not be legalised or decriminalised. He did not support the proposal to reclassify ecstasy. He also announced an innovative education campaign offering better advice to young people, particularly to those who are vulnerable, about the dangers of all drugs.
9 The Office for National Statistics study Adults with a psychotic disorder living in private households 2000, found in a study of 200 adults in GB that 30% had used illicit drugs, 8% in the past 12 months. These levels are similar to those found in the household survey. 1% were classified as dependent on cannabis and 2% on other drugs. There were no statistical differences between men and women or between age groups.
10 Research by J Van Os et al. at the University of Maastricht in the Netherlands, Cannabis use and psychosis: a longitudinal population-based study (2002), confirmed that cannabis is associated with later schizophrenia and that this is not explained by predromal symptoms. It was estimated that lack of exposure to cannabis would have reduced the incidence of psychosis requiring treatment by as much as 50%.
11 Mental disorder and violence: a special (high security) hospital study by PJ Taylor et al, reported in the British Journal of Psychiatry (1998) that substance abuse is a significant and important factor which increases the risk that a person with a mental disorder will be violent. However, this needs to be seen in the light of everyone who takes street drugs tending to become more violent, whether or not they have a severe mental illness. The MIND report, Environmentally Friendly? (2000), found that 30% of people in psychiatric units said that illegal drugs were being used on wards.
12 A review by the British Lung Foundation in 2002 says that cannabis available on the streets today is 15 times more powerful than 30 years ago. Smoking three joints a day causes the same damage to the lungs as 20 cigarettes.
13 An occupier or someone concerned in the management of premises would commit an offence under Section 8 of the Misuse of Drugs Act 1971 if they knowingly allowed a controlled drug to be supplied of for cannabis to be smoked on their premises.
14 In the mental health policy implementation guide, Dual Diagnosis Good Practice Guide (2002), the Department of Health specified that services for people who had a dual diagnosis of mental illness and substance abuse should be delivered within mental health services. Those with a severe mental illness should be subject to the Care Programme Approach.
4) Tobacco Smoking and mental illness (Rethink public policy number 54)
Rethink recognises the serious damage to physical health caused by smoking tobacco but accepts that there are valid short-term reasons for people with a severe mental illness to smoke. They should be encouraged, but not pressed, to quit smoking by being given information, treatment and support. Non-smokers should be protected from smoking by others.
1 The environment and staff in mental health settings should not encourage smoking. Attention should be paid to helping people achieve healthy lifestyles in which reliance on tobacco smoking for stimulation diminishes. Quit smoking groups within mental health services should be encouraged.
2 Information about quitting smoking, including how to contact helplines, advice on suitable treatment and counselling, should be available in mental health settings and GP practices. GPs and mental health staff should respond positively to requests for information, suitable treatment and support from people with a severe mental illness who wish to quit smoking.
3 Some people with a severe mental illness enjoy smoking, may see it as a release when they are stressed and have no desire to quit. Others may find it too difficult to quit. Smokers should be able to smoke tobacco where there is shelter. They should not jeopardise the attempts of people seeking to quit smoking. They should be advised to have annual chest examinations.
4 Buildings should be designed or adapted to protect non-smokers from the effects of passive smoking. Smoke detectors should always be fitted and fully operational.
In August 2002, Rethink introduced a smoking policy for the services it provides with the aim of protecting users of services and staff from passive smoking and promoting good health. Rethink work with smoking-cessation agencies to develop ways of helping people with a severe mental illness who wish to quit smoking.
Questions and Answers
Q Is it more difficult for people with a severe mental illness to quit smoking than the general population?
A Yes, for a number of reasons, including:
. their being less likely to be in employment than the general population; they may have a lot of time on their hands, which is available for smoking
. their smoking to abate the physical side-effects of medication such as poor concentration, anxiety and hunger
. quitting smoking is difficult for most people, but people with a severe mental illness are more vulnerable to stress; an adverse incident may cause them to resume smoking
.smoking is part of the culture of mental health services
. tobacco smoking has a stimulating effect on people who have negative symptoms of mental illness, including apathy, inertia and withdrawal; quitting smoking would reduce their personal activity
- lacking self-esteem and seeing the future bleak; as a consequence, they may not bother to look after their physical health.
Q Should people with a mental illness be encouraged to quit smoking?
A Yes but care needs to be taken, particularly in psychiatric hospitals, because encouragement may be interpreted as coercion. Information needs to be available to explain the effects of smoking and to offer advice on quitting. The initiative should rest with the individual to take steps to quit. It is, however, important that GPs and mental health staff should respond positively to requests for information, treatment and support and take opportunities to discuss physical health problems.
Q Is it more difficult for people with a severe mental illness to quit smoking than the general population?
A Yes, for a number of reasons, including:
. their being less likely to be in employment than the general population; they may have a lot of time on their hands, which is available for smoking
. their smoking to abate the physical side-effects of medication such as poor concentration, anxiety and hunger
1 A literature search undertaken by Dr Ann McNeill for a conference in 2001 organised by 'Smoke Free London', 'Mentality' and 'Action on Smoking and Health' identified the following key issues:
. nicotine dependence is the most prevalent, deadly and yet most treatable of all psychiatric disorders but is often overlooked by the psychiatric profession
. smoking prevalence is significantly higher among people with mental health problems than among the general population, highest amongst those with a diagnosis of a psychotic disorder
. people with psychotic disorders who live in institutions are particularly vulnerable: over 70% of this group smoke including 52% who are heavy smokers; more than half wanted to give up smoking
. daily cigarette consumption is considerably higher among smokers with mental health problems who may also inhale smoke more deeply
. smoking related fatal diseases have been shown to be commoner among people with a diagnosis of schizophrenia than among the general population; some of the higher rate of mortality of people with mental health problems is potentially preventable if they are given support to stop smoking
. nicotine may help alleviate some of the positive and negative symptoms associated with psychiatric illnesses and may also help to alleviate the side effects associated with their medications
. a significant proportion of people with a diagnosis of schizophrenia recognise that smoking is a problem, want to quit and will attend smoking cessation therapy
. effective treatments exist to help people stop smoking and are not yet being routinely offered to people with mental health problems
.those needing further support to specialist smoking cessation services
. there is evidence from other countries that smokers with mental health problems feel excluded from mainstream stop smoking programmes
. attempts to stop smoking do not appear to exacerbate psychotic symptoms
. many mental health institutions at best condone and at worst encourage smoking; smoke-free policies encourage smokers to quit, make non-smoking the norm and reduce the harmfulness of environmental tobacco smoke
. in the UK, people with schizophrenia who smoke contribute an estimated £139m each year to the Treasury.
2 In 2001, research was undertaken involving 24 people who experienced mental illness in London. 9 declared a diagnosis of a psychotic disorder. All smoked between 10 and 60 cigarettes or roll-ups a day and most had tried to give up smoking for some time. The main reason for doing so was that cigarettes were too expensive. Many would like help to give up for good. The main findings were:
. one of the key reasons for smoking was the smoking culture within psychiatric wards and the mental health system
. most were opposed to quitting because of potential weight gain, which was a very common side-effect of medication
. worries about health risks but mostly put these to the back of their minds
. many saw smoking as a release when they are stressed
. nearly all of those who had tried to quit had used nicotine replacement therapy (NRT); they were not aware that it is available on prescription
. some had been told by their GP to quit smoking but felt that they had no support to do so
. more information is needed on the types of smoking-cessation aids available to them and which are effective for mental health service users
. most had heard of Quitline, the telephone help-line; only one had called it
. those who wanted to quit smoking felt that they could not do so on their own; smoking-cessation groups or clinics were seen to have a role.
3 The Office for National Statistics survey, Adults with a psychotic disorder living in private households 2000 found from a study of 200 people in GB:
. 44% were smokers, 20% were ex-smokers and 36% had never smoked compared with, in the general population 29% were smokers, 22% were ex-smokers and 50% had never smoked
. 27% of the smokers smoked heavily, ie 20 or more cigarettes a day, compared 9% of smokers in the general population
. the odds of being a heavy smoker were more than four times higher in the youngest age group 16-34 than the oldest 55-74.
4 According to a fact-sheet produced by the National Institute of Mental Health in the USA, research has shown that the relationship between smoking and schizophrenia is complex. People with schizophrenia may smoke as a form of self-medication but smoking has been shown to interfere with the response to antipsychotic drugs. As a result, they may need to take higher doses.
5 Research suggests that tobacco smoking can have some beneficial effects, which need to be set against the adverse effects:
. several studies have shown that nicotine launches a number of surprisingly different brain mechanisms and some are beneficial [source Brain Briefings October 1998];
. a study suggests that nicotine stimulates alleviates the inability of people with schizophrenia to concentrate [source SCARCNet Daily News Summary 21 January 1997].
6 In 1997, of 11 million regular tobacco smokers in the UK, an estimated 4 million attempted to quit but only 3-6% succeeded. Half of all smokers die early because of a smoking-related illness. It costs the NHS about £1.5 billion a year to treat patients who have a smoking-related disease.
7 In the year ended March 2002, 227,300 people set a quit date through the smoking-cessation services. 63% received only NRT and 19% received only Bupropion (Zyban), which is medication that affects some of the chemical messages in the brain. 2% received both. Care needs to be taken in prescribing Bupropion for people using anti-psyhotic medication which reduces the seizure threshold. NRT is available as a gum, a patch, a spray, an inhaler and as a tablet and lozenge.
8 In April 2002, the National Institute for Clinical Excellence (NICE) recommended the use of Bupropion and NRT for smokers who wish to quit and are motivated to do so.
9 In the Health Development Agency consultation document, Tobacco control policies within psychiatric and long-stay units (2000), 10 of 40 NHS Trusts had smoking policies forbidding staff to smoke; the rest had set aside designated smoking areas for staff. None had total bans on people with a mental illness or visitors smoking but many said that visitors should not smoke unless they were in distress. Most Trusts banned tobacco sales.
10 Rethink has an operational policy to ensure that staff, users of the service and the public are protected from passive smoking, and promote good health by providing advice, encouragement and support to those who choose to avoid taking up smoking or to quit.
5) Compulsory treatment and care for people with a severe mental illness (Rethink public policy number 53)
Compulsory treatment and care for people with a severe mental illness
People with a severe mental illness should not be subject to treatment and care under compulsory powers unless they lack capacity or are known to be a danger to others or at serious risk of suicide. All steps should be taken to provide care and treatment on a voluntary basis.
People should not be deprived of their innate sense of responsibility unless it is evident that self-control has disappeared; external control should only then be offered for a limited, pre-determined period.
People subject to compulsory powers should have a reciprocal right to treatment and care.
People with a severe mental illness and informal carers should be fully involved in decisions relating to the use of compulsory powers and where informed consent is needed.
Electro-convulsive therapy (ECT) should only be given with a person's fully-informed consent and a second opinion or where it is necessary to save his or her life.
Psychosurgery should only be given with a person's fully-informed consent and a second opinion.
Polypharmacy and anti-psychotic medication doses above national prescribing guidelines should only be given with the approval of a Mental Health Tribunal.
Enforcement of compulsory powers should only take place in a hospital setting.
Rethink has responded to each of the Government's proposals on compulsory treatment and care in England and Wales, both individually and as a member of the Mental Health Alliance, which comprises about 60 mental health organisations who have joined together to respond to these proposals.
Questions and Answers
Q Why are compulsory powers for treatment and care needed?
A They are needed because people with a severe mental illness may at times lack insight into their condition and, as a consequence, may not be capable of making decisions about the treatment and care that they need.
Q How might the need for compulsory treatment and care be obviated?
A Ideally a good trusting relationship should be established between an individual and the people caring for them, including their informal carers. People need information about their illness, its treatment and care to be able to contribute fully to decisions affecting them on a voluntary basis. They also need access to independent advocacy support.
Q How feasible is it to introduce compulsory treatment and care in the community?
A Arrangements need to be in place to ensure that someone subject to a compulsory treatment and care order is likely to comply with that order, including:
. prescribing the most suitable treatment for them
. providing adequate support
. giving them choice as to the treatment and services they receive
. prescribing the most effective, least debilitating medication for them
. informing the informal carer of the arrangements and giving the informal carer a contact number for advice.
Only Risperidone of the new atypical antipsychotic medication, anti-depressants and mood stabilisers is generally available as a long-lasting injection. Consequently it would be difficult to ensure that a person is taking medication in accordance with their treatment plan. This may only become evident if the person's failure to take medication leads to a significant deterioration in their mental health. However, if an atypical antipschotic is suitable for a person, it should be prescribed notwithstanding that it is not available as a long-lasting injection.
1 Under Sections 3 and 36 of the Mental Health Act, 1983, which covers England and Wales, a person with a mental disorder may be compulsorily admitted to hospital for treatment if it is necessary for the health and safety of the patient or for the protection of others. The Act contains the following provisions regarding compulsory treatment in hospital as a detained person:
. under Section 57, psychosurgery may only be used with fully informed consent of the person
. under Section 58, ECT may be given with fully informed consent, but without consent where it is likely to alleviate or prevent deterioration in a person's condition
. under section 63, consent is not required for the use of medication.
2 The terms of reference of the Expert Committee set up by the Health Secretary to review the 1983 Act, included a request for advice on the legislative changes needed to support compulsory compliance with the treatment programme, where deemed necessary for those patients not formally detained.
3 To inform the Expert Committee, Rethink issued questionnaires to members, informal carers, service users and staff seeking views on the reform of the 1983 Act. Almost 2,300 people replied with the following results:
. 58% of all replies thought that introducing powers of compulsory treatment in the community was a good idea
. 48% of those who experienced mental illness thought it was a good idea; 27% did not
. twice as many people from Black and Ethnic Minority groups as others thought that compulsory treatment would lead to additional discrimination.
4 The Expert Committee, in Review of the Mental Health Act 1983 (1999), outlined principles that they wish to see included in a new Act, including:
. wherever possible treatment, care and support should be provided without recourse to compulsion
. treatment and care should be provided in the least invasive manner in the least restrictive manner and environment
. people who experience mental illness should be involved in all aspects of their assessment treatment, care and support
. treatment and support should reflect the preferences of the individual
. health and social services should be obliged to provide appropriate services to those subject to compulsion
. services should take account of the diverse backgrounds of individuals, including their culture
. services should be provided free from discrimination
. carers should receive respect for their role and experience and have their views and needs taken into account.
5 In the Green Paper, Reform of the Mental Health Act 1983 (1999), the Government agreed that the first three principles in para 4 should be included in the new Act. However, they added a further principle, ie that the safety of the individual and the public are of key importance in determining compulsory powers.
6 The following general principles have been included in the Draft Mental Health Bill (2002), which covers England and Wales:
. individuals should be involved in the making of decisions
. decisions should be made fairly and openly
. the interference to individuals in providing medical treatment to them and restrictions imposed on them during that treatment should be kept to the minimum necessary to protect their health or safety or other people.
7 The Draft Bill contains the following clauses related to compulsory treatment and care:
. any person may request an examination to determine whether the relevant conditions are satisfied for compulsory assessment (clause 9)
. the relevant conditions include that it is necessary for the health and safety of the patient or the protection of others that medical treatment is provided and that treatment can only be provided if they are subject to compulsory powers (6(4))
. compulsory medical treatment may be provided during the assessment period once a care plan has been prepared (20, 26)
. the Mental Health Tribunal must authorise any continuation of compulsory treatment within 28 days of the start of compulsory assessment (36)
. the Tribunal may authorise compulsory medical treatment for up to 6 months for a further 6 months and then for periods up to 12 months (38)
. where a patient is not in a hospital, the compulsory treatment and care order must specify the requirements to secure that treatment is given to the individual and recommend what action may be taken if the individual fails to comply with the order (38(7))
. where a patient not in hospital fails to comply with an order, the clinical supervisor has authority to determine that medical treatment should be given in hospital(39(4))
. psychosurgery may only be used if a patient capable of consent does so; If an individual in incapable of giving consent, the High Court must declare that the individual may lawfully be given that treatment (112-115)
. ECT may only be given without consent if it is expressly authorised by the Mental Health Tribunal or where it is considered immediately necessary (118-119).
8 The Expert Committee recommended that safeguards should be introduced by way of a Statutory Instrument on the use of polypharmacy, ie the use of more than two drugs of the same British National Formulary (BNF) class and for doses above the BNF maximum levels. In the Green Paper, the Government accepted the former recommendation and sought views on the latter.
9 The BNF is a joint publication of the British Medical Association and the Royal Pharmaceutical Society of Great Britain. It is designed to provide clear guidelines on the selection of medicines. The doses stated in the BNF are intended for general guidance and represent, unless otherwise stated, the usual range of doses that are generally regarded as suitable for adults.
10 The White Paper, Reforming the Mental Health Act (2000), did not propose including the safeguards on polypharmacy and doses above BNF levels in the Act. Instead, the Code of Practice under the Act would provide guidance.
11 Article 2 of the Human Rights Act 1998 gives citizens the absolute right to have their life protected by law. It follows, that if a person is at serious risk of suicide, the State has a duty to protect them.
6) A right to assessment, treatment and care for people with a severe mental illness (Rethink public policy number 52)
All people with a severe mental illness should have a statutory right to a comprehensive, holistic assessment of their health and social care needs with a further right to receive services to meet those assessed needs.
The right to assessment, treatment and care should be expressed in legislation as either a personal right or a duty by statutory health and social services to provide it.
People should not be turned away by GPs or mental health services when they seek help as, or on behalf of, a person with a severe mental illness.
GPs receiving requests from families. partners and friends to help someone experiencing a severe mental illness, should respond promptly, referring them to specialist services, if necessary. Advice should be available to those who seek help for a person who does not recognise that they are ill.
Determinations as to whether a person should be subject to compulsory powers should be made without delay.
People with a severe mental illness who go to a casualty department in distress should be assessed and treated urgently.
People subject to compulsory care and treatment should have a reciprocal right to treatment and social care.
People discharged from compulsory care and treatment should continue to have the right to care and treatment until the person and both health and social services decide that it is not longer required.
The Mental Health Alliance, which includes Rethink, is pressing for the new mental health legislation in England and Wales to place a duty on authorities to provide a prompt assessment of a person's needs and a duty to provide or arrange provision of services to meet their needs.
Questions and Answers
Q What is early intervention and why is it important?
A Early intervention means detection and treatment of psychosis during the critical early phase of illness. Delays:
. cause unnecessary distress
. reduce the prospects of recovery from illness
. increase the risk of relapse and getting involved in the criminal justice system
. are potentially harmful for the person, their family and friends.
Early treatment has been shown to improve the chances of recovering a meaningful and fulfilling life..
Q Why is it important to have a right to assessment, treatment and care?
A Having such a right would reduce the likelihood that a person seeking help would be turned away. As a result, through early intervention and treatment, he or she would have an optimum prospect of recovery from severe mental illness and staying well (see para 4 of 'background' below). This would reduce the costs of providing treatment and care, eg by obviating the need for people to use expensive in-patient care because they are unwell.
Q To what extent does the draft Mental Health Bill fall short of giving people the right to assessment, treatment and care?
A The draft Mental Health Bill falls significantly short of giving people the right to assessment treatment and care. There is no right to or a duty to provide:
. an assessment of health and care needs
. a reciprocal right to treatment and care to those subject to compulsory powers
. aftercare services to those discharged from a compulsory order.
1 The Mental Health Act, 1983 is expressed in terms of duties placed upon professionals rather than personal rights of individuals. For example:
. an approved social worker has a duty to make an application for admission to hospital where it is necessary or proper for the application to be made (section 13)
. an approved social worker has the duty of taking a person's case into consideration if required by the nearest relative (section 13(4))
. health and social services have a duty to provide after-care services following discharge from treatment under detention (section 117).
2 Likewise, NHS and community care legislation is expressed in terms of duties placed upon services rather than personal rights. In contrast, since 1966 people have been entitled to social security benefits as of right, subject to satisfying conditions of entitlement. NHS and community care services are cash-limited but social security benefits are generally not.
3 According to the Rethink survey, Better Act Now! (1999), 35% of those who responded had been turned away when seeking help, and 25% when seeking hospital admission. When asked what they thought would be the biggest improvement in a new Mental Health Act, 69% said a right to adequate treatment and care.
4 In a paper, Early intervention in schizophrenia, published in the British Journal of Psychiatry in 1997, Prof. Max Birchwood et al. found that:
. the average time from the first presentation of psychosis to receiving treatment was one year
. people taking over a year to access treatment had a threefold increase in relapse over the following two years, compared with those who had a briefer period of untreated illness
. untreated illness emerged as the strongest predictor of relapse
. untreated psychosis is biologically toxic and responsible for long-term morbidity.
5 The NHS Plan (2000) recognises that early intervention to reduce the period of untreated psychosis in young people can prevent initial problems and improve long-term outcomes. The Government proposes:
. to establish 50 early intervention teams over the next three years to provide treatment and active support in the community to these young people and their families
. that by 2004, all young people who experience a first episode of psychosis will receive the early and intensive support they need.
6 The Government has new target in its Priorities and Planning Framework 2003-2006 to reduce the duration of untreated psychosis to a service median of less than three months (individual maximum less than six months) and provide support for the first three years for all young people who develop a first episode of psychosis by 2004.
7 The first contact for many people with a mental illness is their GP who, according to the Mental Health National Service Framework (1999), should offer effective treatments, including referral to specialist services for further treatment and care, if necessary. Prompt assessment is essential for young people with the first signs of a psychotic illness, where there is growing evidence that early assessment and treatment can reduce levels of morbidity.
8 The Expert Group established to advise the Government on how mental health legislation in England and Wales should be shaped recommended the following reciprocal rights which should flow from compulsory care and treatment:
. information about treatment and care
. access to medical records and to enter reservations as to the accuracy of factual statements contained therein
. receive care and treatment in accordance with their care plan during any period of compulsion
. ongoing care after any period of compulsion
. for those detained in hospital, to safe containment consistent with respect for human dignity
. information about and assistance with drawing up an advance agreement.
9 According to the draft Mental Health Bill, which covers England and Wales:
. any person may request an assessment of the need for compulsory powers but not of a person's health or social care needs
. a person's health and social care needs will only be assessed once it has been decided that compulsory powers should be used
. there are neither reciprocal rights to treatment and care nor any right to ongoing care following compulsion.
10 In the draft Mental Health Bill, an examination to determine the need for assessment under compulsory powers should take place as soon as practicable after a request for one has been made. The 1983 Act does not specify the urgency of determining whether a person should be detained under compulsory powers.
7) Empowering people with a severe mental illness (Rethink public policy number 50)
Mental health services should help people with a severe mental illness to become independent and make their own decisions about their treatment, care and how they live their lives, recognising that they may need help in doing so. Those not capable of making decisions have a right to expect that someone will make decisions on their behalf in their best interests.
1 People with a severe mental illness should not be stigmatised by labels, eg the mentally ill, schizophrenics, service users. Instead, any label should indicate first and foremost that they are people, eg a person who experiences mental illness.
2 To be empowered, people with a severe mental illness need:
. information expressed in a way that is free from professional jargon
. support from mental health services, an independent advocate or a person involved in their care to help them understand the information being given and to make decisions
. training to help them to speak effectively on their own behalf
. to be treated with dignity and respect
. choice over their treatment and care and how they live their lives, including where they live
. to be fully involved in decisions affecting them
. to be respected for their expertise on their condition, their needs and how those needs might be best met.
3 It should not be assumed that people with a severe mental illness have or have not the capacity to make their own decisions about their health and social care. They may need support to do so.
4 People who have experienced a severe mental illness and informal carers should be involved in the training of nurses, doctors, social workers and others providing mental health services to help professionals understand personal perspectives of mental illness and mental health services.
. Rethink is considering changing the term, service user, which it uses to describe people with a severe mental illness, because this term defines a person in relation to the services they receive rather than as an individual.
. Rethink is developing the services it provides so that they can help people to recover from severe mental illness.
. Rethink encourages the involvement of people with a severe mental illness in its work at all levels.
. In 2002, Rethink produced a report The experience and views of self- management of people with a schizophrenia diagnosis.
Questions and Answers
Q Why is it important to empower people with a severe mental illness?
A For too long they have been subject to the views and decisions of people who think they know what is best for them in terms of their treatment and care and how they live their lives. Empowerment enables people to take charge of their own lives and is a key component in recovery from severe mental illness.
Q What about those with a severe mental illness who do not have the capacity to make decisions for themselves?
A The aim must be to help them all become empowered but there may be times when people are not well enough to make decisions for themselves. At those times, someone must make decisions on their behalf to take account of their best interests. This might be a person they have nominated in an advance directive or a member of their family or a friend involved in their care. If they are capable of being involved in decisions affecting them, they should be so. If they need information and/or support in making decisions, it should be provided, eg by mental health services, an independent advocate, a family member or a friend.
Q Are people with a severe mental illness being increasingly empowered?
A Yes, but slowly. In the past twenty years, people who have experienced a severe mental illness have formed national organisations such as Survivors Speak Out, the UK Advocacy Network, the Hearing Voices Network and the Voices Forum, which the Government has listened to. At a personal level, less progress has been made. Most people with a severe mental illness now receive treatment and care in the community, where they should have care plans under the care programme approach in which they have been involved. In practice, however, not everyone has a care plan and involvement in care planning is variable.
1 The following definitions are used in this policy statement:
. empowerment relates to people taking decisions for themselves
. advocacy enables people to understand their rights and get their views across
. self-advocacy empowers individuals or groups to speak for themselves.
2 The Department of Health Mental Health Task Force User Group (1992-1994) identified the following as bad practices associated with mental health services:
. overuse of medication and ECT to address symptoms rather than dealing with underlying problem