CHAPTER 11: MINORITY GROUPS IN RELATION TO MENTAL HEALTH LEGISALTION
11.1 This chapter looks at the literature relating to a range of groups where there are special considerations in relation to mental health legislation, either because of detention rates or because they are alluded to in the literature as having particular needs. These include children and adolescents, women, minority ethnic groups, older people, people with learning disabilities and people who are deaf. There is also a short section on the capacity of those people suffering from anorexia nervosa to refuse treatment. The literature searches carried out did not reveal any relevant research on literature relating to some other groups, for example, lesbian, gay, bisexual or transsexual groups ( LGBT) in relation to aspects of mental health legislation. Mention is made of general service provision for some of these groups but to cover this comprehensively is out-with the scope of this review.
CHILDREN and Adolescents
11.2 Children and adolescents relate to mental health legislation as people experiencing mental disorders themselves or as the dependants of parents or carers who are experiencing mental disorders.
11.3 Section 23 of the Mental Health (Care and Treatment) (Scotland) Act 2003 places a duty on Health Boards when admitting a person under 18 to hospital to provide ' such services and accommodation as are sufficient for the particular needs of that child or young person' for both detained and non detained patients (Scottish Executive 2003a).
11.4 A Needs Assessment Report on Child and Adolescent Mental Health (Public Health Institute of Scotland 2003) identified an urgent need for investment in the provision of specialised units in Scotland, able to offer developmentally appropriate settings for children and young people requiring residential or inpatient units. Current shortages mean that children and young people are being treated on adult wards that have not been adapted to meet the young person's needs.
Numbers of young people detained under the Mental Health (Scotland) Act 1984
11.5 Detention rates for young people have continued to rise as has concern about the inappropriateness of young people being admitted to adult wards. The Mental Welfare Commission annually reports on the number of detentions of young people in Scotland. For example, in 1990-1991 there were 51 episodes of detention of young people under 18 years old, by 1995-1996 this had risen to 82 and by 2002-2003 to 127 (Mental Welfare Commission 1996, 2003). Of the 127 young people detained in 2002-2003, only 29 (23%) were detained in child and adolescent units. The remainder were placed on adult wards or general medical wards. This excluded five admissions under the Criminal Procedures (Scotland) Act 1995 and two detentions under section 25(2) of the Mental Health (Scotland) Act 1984 (Mental Welfare Commission 2003). Table 11.1 shows the figures for 2003-2004.
Table 11. 1: Episodes of detention by inpatient facility in Scotland 2003-2004
Detentions under 16 Years
Detentions 16 and 17 years
All detentions Under 18 yrs
Adapted from Mental Welfare Commission annual report 2003-2004
11.6 As can be seen there were 135 detentions in that year, 27 for young people under the age of 16 and 108 for young people aged between 16-17. Of these only 20 were placed in adolescent units, 106 on adult wards and 9 on medical wards (Mental Welfare Commission 2004). The 2003-2004 figures include admissions to adult wards for 3 boys and 2 girls aged 16-17 years under the Criminal Procedures (Scotland) Act 1995.
11.7 The Mental Welfare Commission points out that duties placed on health boards under section 23 of the Mental Health (Care and Treatment) Act 2003:
'makes it imperative that the provision of services for young people is given greater attention than has been the case in the past; this includes their inpatient care'. (Mental Welfare Commission 2004)
11.8 The MWC have supported the view of the Royal College of Psychiatrists ( RCP) that young people under 16 should not be admitted to adult wards, and that 16 and 17 year olds should only be admitted to such wards under special circumstances. The RCP considered that inappropriate admissions of young people should be seen as ' an untoward critical incident' (Royal College of Psychiatrists 2002).
11.9 Since October 2002 the MWC have received information on all under 16 year olds admitted either formally or informally to adult wards. It is probable that their figures are an underestimate as they report that as yet reliable ways of collecting and notifying such data have not been established. Between October 2002 and April 2003, 7 informal admissions were notified of under-16 year olds (4 girls and 3 boys).
11.10 The MWC report of 2000-2001 (Mental Welfare Commission 2001) said that the Commission had not hitherto been as involved in services for young people as it had for adults. The intention was to become more involved. It reported that the Scottish Health Advisory Service, the Mental Health and Well-being Support Group, the Clinical Standards Board for Scotland, the Social Work Inspectorate and the MWC wrote collectively to the Scottish Executive arguing for a national strategy for child and adolescent mental health services. The response from the Executive was deemed encouraging (Mental Welfare Commission 2001). The 2002-2003 MWC report noted that at the time of writing two of the four child and adolescent units in Scotland had closed temporarily due to staffing problems (Mental Welfare Commission 2003).
Mental Health Advisory Commission in England & Wales
11.11 The Tenth Biennial report of the Mental Health Advisory Commission (2003) expressed concern that a monitoring system which concentrates on the needs of those detained under the Mental Health Act 1983 alone does not meet the needs of the whole population of minors subject to compulsion is hospital. In addition to noting the high proportion of young people admitted to inappropriate facilities it highlighted survey results that showed only 32 out of 72 hospitals that responded claimed to have adequately implemented policies in relation to the admission of minors.
11.12 In its response to the draft Mental Health Bill of 2002 6 among other recommendations the Commission urged the Government to consider giving the Commission for Healthcare Audit, the Commission for Social Care Inspection and the new Children's Rights Director specific and complimentary duties in respect of children with serious mental disorders.
Mental health legislation and the Children Act 1989 in England & Wales
11.13 Children and young people can be admitted to NHS facilities either under the provisions of the Mental Health Act 1983 or the Children Act 1989. In addition they may be admitted against their will but with the consent of their parents or parent without the use of either piece of legislation. McNamara (2002) gave an overview of the both these Acts in England & Wales and their interface with common law, family law and the Human Rights Act 1998.
11.14 Potter and Evans (2004) argued that neither the current complex legislative framework in England & Wales nor the proposed changes in the Mental Health Bill can provide appropriate services whilst safeguarding children's rights. Apparent inconsistencies in the legal framework are noted. For example young people with 'Gillick competency' can consent to treatment but cannot refuse it in the face of proxy consent by someone with parental responsibility. The authors wished to see reforms that take into account more fully both the developmental needs of young people and the complex multi-agency nature of children's services.
11.15 Mears and Worrall (2001) surveyed consultant psychiatrists in child and adolescent psychiatry about their concerns in relation to the use of legislation in their specialism. The four main concerns identified in descending order of frequency mentioned were: which Act to use, the Mental Health Act 1983 or Children Act 1989; general issues with consent to treatment; issues with social services departments; and, stigma associated with use of the Mental Health Act 1983.
11.16 Subsequent research (Mears et al 2003) identified that psychiatrists' knowledge of the Mental Health Act 1983 was better than that of the Children Act 1989. Since decisions about admission were probably taken through discussion in multidisciplinary teams and with access to legal advice, it was anticipated that knowledge of other professionals might compliment that of the psychiatrists in real clinical situations as opposed to when completing a questionnaire.
Survey evidence from England & Wales on children and adolescents in different service settings
11.17 Surveys in England & Wales have described the types of problem that patients are referred to health services with, as well as the proportions of young patients admitted under the provisions of the two Acts. However, these surveys offer an incomplete picture because of the difficulty of gathering reliable information from the wide variety of treatment settings in which young people may be placed. The more accurate descriptions of narrowly defined services for children and adolescents are however unlikely to be representative of the country as a whole.
11.18 One survey of 71 out of 80 child and adolescent in-patient services in England & Wales described the 663 young people resident on Census day, 19 October 1999 (Mears et al 2003). Some 127 (19%) had been admitted formally. Of these, 99 (78%) were under sections 2 and 3 of the Mental Health Act 1983 and 8 (6%) under section 25 of the Children Act 1989. Other sections of the Children Act applied to 55 children but these were not deemed to constitute formal admission. The four most common diagnoses for the informal patients were eating disorders (24%), mood disorders (18%), schizophrenia (10%) and conduct disorders (7%). For those patients in the 'detained' category the four most common diagnoses were schizophrenia (45%), personality disorders (16%), mood disorders (13%) and eating disorders (5%).
11.19 Calton and Arcelus (2003) analysed referrals to a general adolescent unit that accepted 12-18 year olds over a 14 month period. Of the 56 admissions 15 (26%) were admitted formally under the Mental Health Act 1983 and none under the Children Act 1989. There was a small preponderance of males to females in the 56 admissions with 30 male (54%) and 26 female (46%). The most frequent ICD diagnosis was adjustment disorder 20 (37%), which usually followed an episode of self-harm. A variety of diagnoses of psychotic disorders were given to 12 patients (21%) and anorexia nervosa to 8 (14%).
11.20 A survey of young people aged 13-17 with a home address in Greater London being treated in NHS and private psychiatric facilities both in and around London addressed issues of ethnic variation (Tolmac and Hodes 2004). From a total of 113 patients, 95 (84%) were in child and adolescent facilities while the other 18 (16%) were on adult wards. 'Black' (Black British, Black Caribbean, Black African, Black Other) patients were over represented in the population of those admitted with a diagnosis of psychosis as compared to 'Asians' (Indian, Pakistani, Bangladeshi, Asian Other) and 'Whites' (White British, White Irish, White Other). People in the 'Black' category were more likely to have been born outside the UK, have a refugee background and be detained on admission.
11.21 Although there is a strong current of opinion that it is inappropriate to admit young people to adult wards there is also concern that young people with psychotic illnesses are not necessarily well served in a general child and adolescent unit (Carlton and Arcelus 2003, Mears et al 2003). The authors urged that consideration be given to providing dedicated services for young people between 15-22 years old with psychotic illness. Mears et al (2003) pointed out that forensic and secure units often tend to admit up to the age 21. This may create better outcomes for both the patients with psychosis and also the other in-patients in the child and adolescent units (Carlton and Arcelus 2003). In Scotland, however, with a significant number of remote and rural populations the more specialised a unit is the greater the distance is likely to be from the young person's home, thus making maintenance or re-establishment of family relationships more difficult.
11.22 Of those children and young people admitted formally most were admitted under the provisions of the Mental Health Act 1983. There is debate as to which law should be used and also if psychiatrists have sufficient knowledge of the Children Act 1989 to use it when appropriate. While there were concerns that use of the Mental Health Act 1983 may be stigmatising, official guidance from the Welsh Office stated that it provides more safeguards than the Children Act 1989 (Mears et al 2003).
11.23 Kurtz et al (1998) surveyed professionals' attitudes to young people in secure accommodation, including forensic adolescent units. They reported that there were many young people with mental health needs in secure accommodation who were not getting the treatment they needed. Only 46% of children considered by departments of child and adolescent psychiatry to be in need of a secure placement were so placed. There were also reports of young people in a variety of secure placements who were not getting their mental health needs met.
Rates of self harm amongst children and adolescents
11.24 An analysis from the national survey of the mental health of children and adolescents in Britain in 1999 (Meltzer at al 2001) presented prevalence rates of self-harm. Information was collected on 83% of a total of 12,529 children eligible for interview resulting in data for 10,438 children and adolescents aged 5-15 in Britain. The findings suggested that, according to parents, approximately 1% of 5-10 year olds had tried to harm, hurt or kill themselves with the rate of self harm among the sample with no mental health problems at 0.8%. The rate of self harm increased to approximately 6% in children diagnosed as having an anxiety disorder and around 7% in those who had a conduct disorder, hyperkinetic disorder or a less common mental disorder. In this age group, the prevalence of self harm was greater: in children in lone parent as apposed to two parent families; single child families; social class V families; families living in terraced houses or maisonettes as opposed to detached or semi-detached houses; and, the rates were higher in England than in Scotland or Wales.
11.25 In the 11-15 age group, approximately 2% had tried to harm, hurt or kill themselves with the highest rate of 3% amongst 13-15 year old girls. For those with no mental disorder the rate was approximately 1% and this increased for those with anxiety disorders (9%), depression (19%), a conduct disorder (12%) or a hyperkinetic disorder (8.5%). In this age group, the prevalence of self-harm was greater for children in: lone parent families; families with stepchildren; families with 5 children or more; and, families who were social sector or private renters as opposed to being owner-occupiers. The rates in Wales were higher than those in England or Scotland.
The rights of children as dependants of adults with mental illness
11.26 A review of cases taken to the European Court of Human Rights ( ECHR) (Prior 2003) by parents with a mental illness who either wish to regain custody or establish access to their children highlights an important trend. Although the ECHR upheld the decision to take children into care in the cases reviewed, authorities were criticised for not giving sufficient consideration to the changeable nature of mental illness. The 'once and for all' decision did not recognise that parental mental health could improve and children benefit from either being returned to the care of their families or of having contact maintained with the birth parent(s) whilst in foster care or adopted. A case was also cited where children were awarded compensation for damages suffered as a consequence of being left too long with their family and suffering 'inhuman and degrading treatment' (Prior 2003).
- Section 23 of the Mental Health (Care and Treatment) Act 2003 places a duty on Health Boards when admitting a person under 18 to hospital to provide ' such services and accommodation as are sufficient for the particular needs of that child or young person' for both detained and non detained patients.
- The Mental Welfare Commission reported that detention rates for young people under 18 have continued to rise from 51 in 1990-91 to 135 in 2003-4.
- A Needs Assessment Report on Child and Adolescent Mental Health identified an urgent need for investment in the provision of specialised units in Scotland. Neither the current complex legislative framework in England & Wales nor the proposed changes in the Mental Health Bill can provide appropriate services whilst safeguarding children's rights.
- The main concerns in relation to detention amongst consultant psychiatrists in child and adolescent psychiatry are: which Act to use, the Mental Health Act 1983 or Children Act 1989; general issues with consent to treatment; issues with social services departments; and stigma associated with use of the Mental Health Act 1983.
- One survey of adolescent in-patient services found that the most common diagnoses for informal patients were eating disorders (24%), mood disorders (18%), schizophrenia (10%) and conduct disorders (7%). For those patients in the 'detained' category the most common diagnoses were schizophrenia (45%), personality disorders (16%), mood disorders (13%) and eating disorders (5%).
- · Although there is a strong current of opinion that it is inappropriate to admit young people to adult wards there is also concern that young people with psychotic illnesses are not necessarily well served in a general child and adolescent unit.
11.27 In recent years there have been moves to develop strategic mental health care plans specifically for women in Britain. On the other hand, one study commissioned by the Department of Health highlighted that while some services were improving there was still little suggestion of any sustainable improvements in mental health services for women (Barnes et al 2002). In their Ninth Biennial Report, the Mental Health Act Commission (2001) noted that progress on the implementation of NHS directives on safety, dignity and privacy in mixed environments was slow. They suggested that the 95% of objectives relating to women's safety, privacy and dignity (including separate washing and toilet facilities, safe sleeping arrangements as well as general organisational arrangements) were not being met. The Commission suggested that while certain services had complied with some of the basics of the Government objectives, there was still a long way to go before a quality service could be obtained (Mental Health Act Commission 2001, 2003).
Government action in England & Wales
11.28 In the last number of years UK governments have begun to give women's mental health services priority at a policy level. In England & Wales in March 2001, the then Minister for Mental Health, John Hutton, announced the development of a women's mental health strategy. The report, Women's Mental Health: Into the Mainstream was published in October 2002 (Department of Health 2002b). Following a consultation process, implementation guidance for the strategy called Mainstreaming Gender and Women's Mental Health was published in September 2003 (as part of a broader Government initiative Delivering on Gender Equality launched by Patricia Hewitt in June of the same year) (Department of Health 2003).
Action in Scotland
11.29 In Scotland the National Mental Health Services Assessment (set up to advise on the implementation of the Mental Health (Care and Treatment) (Scotland) Act 2003) reported that forensic services for women had suffered in the past from a lack of co-ordination and planning. The report stressed that these deficiencies were being addressed and called for the new Act to put in place a full range of forensic services as a matter of urgency (Grant 2002).
11.30 The Mental Health (Care and Treatment) (Scotland) Act 2003 also includes provisions to allow mothers with post-natal depression to be admitted to hospital with their child. A Short Life Working Group was set up in May 2003 to prepare appropriate guidance to inform planning processes towards implementation of the provisions of the new Act. While the legislation specifically mentioned post-natal depression, the Working Group used the term perinatal mental illness in order to highlight a wider scope for potential new services. The Scottish Executive published guidance for those charged with developing care for new mothers experiencing mental ill health in March 2004 (Scottish Executive 2004d).
11.31 In response to the publication, the then Health Minister, Malcolm Chisholm stated that:
' the care and treatment of women who experience mental ill health after they have given birth is of the utmost importance not least for the continuity of the essential bonding between mother and child…Planning perinatal services facilities and service for mothers and their babies will form an important part of the improved services and support set out in the new legislation in addition to those services already being developed' (Scottish Executive News Release, 04/03/2004).
Women in secure settings
11.32 There has been recognition that within secure settings women have been exposed to unnecessary levels of security because services designed to meet their specific needs have not been available (Department of Health 2002b). It has been suggested that this may in part be due to a lack of secure provision for women outside of high security services (Beasley 2000). Despite the fact that many women in high security services do not warrant that level of security, a security-driven rather than clinically focussed service has been allowed to develop (Funnell 2004).
11.33 Lart et al (1999) carried out a review of available literature around women and secure psychiatric services. The findings from the review suggested key differences in contexts and needs of female patients. It was found that women were more likely to have experienced previous psychiatric admissions and less likely to have committed serious criminal offences than men. It was also found that women were more likely to have to have been diagnosed with a personality disorder or borderline personality disorder than men.
Service provision for women
11.34 Although not looking specifically at all the literature on service provision, from the literature reviewed Lart et al (19990 noted that very few papers discussed the implications of specific service models in relation to their impact on women. The papers were generally supportive of mixed therapy groups and regimes and did not address women's history of physical or sexual abuse or issues relating to women as parents.
11.35 What also became clear was that a higher proportion of women in high security care in England & Wales have come from NHS psychiatric services rather than the criminal justice system. Their arrival in higher level security was because they were seen as being difficult to handle at lower level security facilities (Lart et al 1999).
11.36 It has been argued that women have been fitted into services that had been developed for men and, where services have developed, they have struggled to respond in ways that were meaningful to women. Certainly the Government's Mainstreaming Gender and Women's Mental Health (Department of Health 2003) has taken into consideration a number of problems with the mental health care system in relation to gender. A small number of studies have looked at the problems that have appeared in relation to provision of care and the specific needs of women. While there has been more acknowledgement of overt forms of abuse it is clear than more subtle forms need to be addressed.
11.37 Aitken and Noble (2001) assessed service provisions for women who were involuntarily referred into medium and high secure care in England & Wales. They argue that many of the women in secure services are wrongly placed (see also Gorsuch 1999) and receive inappropriate forms of treatment and care. The claim here is that there is little consensus or standard approaches on how to calculate the degree of dangerousness and that there needs to be much more understanding of how risk assessments may be influenced by sexism, racism, ageism or anti-gay/anti-lesbian prejudice.
Characteristics of women in secure settings
11.38 On the basis that new therapeutic treatments for women are needed in the future, Coid et al (2000a,b) attempted to find out if identifiable sub-groups of women patients existed in secure forensic psychiatry services. Using cluster analysis they assessed the case notes of 471 women admitted to three special hospitals and seven regional secure services over a seven year period (1988-1994). Analysis resulted in a 7-cluster solution. Women with personality disorders were clustered into three groups, each with different problems and in need of different levels of security.
11.39 Cluster I (11%) was characterised by anti-social personality disorder (with more than half showing co-morbid personality disorder), Cluster II (21%) (Borderline Personality Disorders), Cluster III (10%) (Mania/Hypomania), Cluster IV (34%) (Schizophrenia/Paranoid Psychosis), Cluster V (8%) (Other Personality Disorder), Cluster VI (11%) (Depression) and Cluster VII (5%) (Organic Brian Syndrome). The categories showed up major differences in histories, criminal activity, additional diagnoses of mental disorder over lifetimes and different pathways into secure care.
11.40 The authors concluded that it was unclear whether specialist services could be developed to manage all women in any single category without high-security facilities. They expected that those diagnosed with anti-social personality disorders would continue to need high security. Personality disorders rate highly for women prisoners yet few receive treatment. It is argued that research needs to be done to assess which women with personality disorders might benefit from treatment and therefore be transferred to hospital. It was also clear that a high proportion of women with major mental illness (Clusters III, V and VII) were being managed in medium security facilities. As such an assessment to evaluate the need for high security for these groups of women may be needed.
Mentally disordered offenders
11.41 Gorsuch (1999) has argued that there are groups within the mental health system who are being poorly served compared to others. One such group, it was suggested, are disturbed offenders. Bland et al (1999) also stated that there have been few academic or clinical studies of mentally disordered females, which might be because the relatively small numbers involved make the group invisible to some extent.
11.42 Bland et al (1999) carried out a case note based study of the 87 women patients detained in Broadmoor hospital during the first 6 months of 1994. Their findings suggested that women in special hospitals share many of the same characteristics as women in prisons. Their histories showed a high level of social deprivation, high rates of physical and sexual abuse, self-harm and behavioural disturbances. Few had functioned effectively in relation to employment, family or intimate relationships before being detained in Broadmoor.
11.43 The authors claim that women in special hospitals represent a 'minority underclass'. They point out that while between 35-50% of women patients in special hospitals do not need high security, medium secure units may not be safe for the women themselves, because of the high proportion of men there and lack of women only space available. It is also suggested that the diagnosis of a personality disorder as opposed to one of mental illness leaves women less well catered for (see also Gorsuch 1999) and more likely to spend longer periods in high security.
11.44 Gorsuch (1999) undertook a study of ten highly disturbed women in the psychiatric ward of Holloway prison. The aim of the study was to find out why these women had found it difficult to obtain beds in NHS secure units. The women, who had been diagnosed with a personality disorder and committed serious crimes were interviewed and asked to complete the Millon Clinical Multiaxial Inventory II ( MCMI-II).
11.45 These women did not fit easily into the medical model, which the author suggested dominates forensic psychiatry. They can be rejected by services on the grounds of treatability because there have been very few controlled studies which provide evidence of what treatments are effective. In interview, the women themselves consistently highlighted the need for social contact, a confiding relationship, autonomy and control as well as the need for a more supportive environment than the prison unit was offering them.
Women with children
11.46 Another important issue rests upon the lack of research into the numbers of women with psychotic disorders who have children and are involved in childcare. This is viewed as an important area as bringing up a family may bring with it with specific problems and needs for women that are not addressed by mental health services.
11.47 One study carried out by Howard et al (2001) took an epidemiologically representative population of women with psychotic disorders, using a descriptive analysis and two case-control studies, to examine the impact of having children on them (as well as the impact of having children cared for by social services).
11.48 The sample consisted of 246 women diagnosed as having a psychotic disorder from two types of community mental health services in South London. Of these 155 (63%) had children. The median age of the women was 43 years (range 16-89). The results suggest there are no clinical differences between women with or without children, as mothers appear to be as disabled, have similar diagnoses and severe illnesses as women without children. Indeed, the study shows that most of the women lived in difficult circumstances with low incomes and had small social or support networks (although mothers did have more contact with relatives and 'acquaintances' such as health visitors or social workers than other women).
11.49 In this group, 10% of the women with children had a history of having their child cared for by social services. Having had a child in the care of Social Services was associated particularly with detention under the Mental Health Act 1983, younger age, a forensic history and being Black African. While it is made clear by the authors that their data was not detailed enough to assess if children being in care was because of women being detained or through parenting difficulties, it is suggested that child care may be a problem if women relapse and this might explain why there is a link between women who have been detained whose children had been in care. (see paragraph 11.26 on the rights of children).
11.50 Although the numbers were small it was the case that Black African women (or first generation immigrants) were more likely to have children who had been taken into care. While detention under the Mental Health Act 1983 or marital status and living circumstances did not fully explain this (although detention was a contributing factor), the authors refer to research which found that Black mothers were more likely to be referred by the police or health services for reasons of mental health than white mothers. They conclude that future research may confirm their findings that Black families with a parent with psychosis were more likely to have a child placed in care.
Findings from the USA
11.51 Mowbray et al (2000) argued that mental health services have paid little attention to the parenting problems of mothers with a mental illness. They interviewed 375 mothers with serious mental illness, recruited from community mental health centres and psychiatric inpatients in Detroit, USA. The aim of the study was to highlight the women's particular needs and improve service provisions. The women involved in the study all had a psychiatric disorder (including mainly diagnoses of major depression, bipolar disorder, schizophrenia, or schizophrenia-related disorder). The participants were 60% African American, 29% Caucasian, 8% Hispanic, and 3% other race/ethnic category. All were aged between 18-55 years and all had at least one child between 4-16 years for whom they had childcare duties. The study found that these women were poorer than people living in the same census tract. The mothers were of the opinion that mental health services helped them less with their problems as parents than they did with their other problems.
Training staff to work with women
11.52 One of the main conclusions from a literature review (Lart et al 1999) was a call for more training that recognised the very specific problems relating to women within the mental health system.
11.53 The lack of training in gender specific issues prompted the Department of Health and the organisation Women in Secure Hospitals ( WISH) to develop the ' Gender Training Initiative'. The initiative was based on a study by Scott and Parry-Crooke (2001) that developed and piloted a training course specifically aimed to the needs of staff working with women in secure psychiatric settings.
11.54 Underlying the study was ' the recognition that women in secure psychiatric services are not a 'special' population in some distinct way. Rather they overlap with and often combine experiences of a number of different 'groups' of women: adult survivors of child sexual abuse, survivors of domestic violence and other trauma, women who self-harm, women in prison, women living in poverty and women users of mental health services' (Scott and Parry-Crooke 2001).
11.55 The investigation involved conducting 60 semi-structured interviews with a cross-section of staff in six secure settings (including nurses, doctors, psychologists, occupational therapists and social workers) and a training needs assessment survey given to members of one team in each of the six sites. A confidential questionnaire was also distributed to 154 staff members in the teams. This asked for views on how gender, poverty, race and sexuality were addressed in training and how issues of power and inequality were addressed in the workplace. Respondents were also asked if they felt there were gaps in their understanding in relation to the needs of women and to identify their training needs for working with women.
11.56 Only 10 (17%) of the respondents had received information on inequality in their initial training, while 18 (30%) said that further training (optional and generally comprised of conferences and seminars) had included inequality. Only three of the respondents (clinical psychologists) had received training in working with survivors of child abuse.
11.57 When asked what areas needed to be developed, the respondents highlighted a need for more knowledge of sexual abuse, dealing with the impact of (early) trauma and self-harm, as well as more understanding of gender issues. It was interesting that discussions of gender and inequality in this study seemed to be more common in informal peer discussions and less so in line management or supervision situations. It was also made clear that issues such as a lack of time for debriefing, the 'ad-hoc' nature of supervision, and a lack of input by specialists all impacted on how well staff were carrying out their jobs.
11.58 From the findings of the study a pilot course was designed, tested and developed with successful results. It is hoped that the setting up of this training programme has provided a clearer focus on how to deal with specific gender issues with women in secure settings. The authors point out that staff training is a crucial tool in ensuring good practice and suggest that the scheme may also be developed for staff in acute services and community contexts.
- In Scotland a National Mental Health Services Assessment report allowed that forensic services for women had suffered in the past from a lack of co-ordination and planning.
- The Mental Health (Care and Treatment) (Scotland) Act 2003 includes provisions to allow mothers with post-natal depression to be admitted to hospital with their child.
- It has been recognised that within secure settings women have been exposed to unnecessary levels of security because services designed to meet their specific needs have not been available.
- A higher proportion of women in high security care in England & Wales have come from NHS psychiatric services rather than the criminal justice system.
- There have been few academic or clinical studies of mentally disordered females, which may be because the relatively small numbers involved are making the group invisible to some extent.
- Women in special hospitals share many of the same characteristics as women in prisons. Their histories showed a high level of social deprivation, high rates of physical and sexual abuse, self-harm and behavioural disturbances.
- There is a lack of research into the numbers of women with psychotic disorders who have children and are involved in childcare.
- Having had a child in the care of Social Services was associated particularly with detention under the Mental Health Act 1983, younger age, a forensic history and being Black African.
- · Mental health professionals highlighted a need for more knowledge of sexual abuse, dealing with the impact of (early) trauma and self-harm, as well as more understanding of gender issues and point to staff training as a crucial tool in ensuring good practice.
MINORITY ETHNIC GROUPS
11.59 The 2001 Census found that approximately 2% of the population of Scotland reported themselves as being of Asian or Black ethnicity. The majority lived in large cities and are reported as making up 5.5% of the population in Glasgow, with the highest percentage of Asian origin (General Register Office for Scotland 2001, Grant 2004). Irish born and those of Irish parentage represent 4.6% of the population of mainland Britain making them the largest migrant population in Western Europe (Bracken et al 1998). The web-site for the most recent Census in Scotland http://www.gro-Scotland.gov.uk/grosweb/grosweb.nsf/pages/censushm does not allow public access to ethnicity of the population whereas this is available in the case of the 2001 census for England & Wales http://www.statistics.gov.uk/census2001.
11.60 The report that this census information for Scotland is derived from also indicated a breakdown of the age structure of minority ethnic groups noting that 7% of all ethnic communities in Scotland are over 60 and 56% are under the age of 30, compared with 21% over 60 and 36% under 30 for white communities (Grant 2004).
Practice in collecting data on ethnicity
11.61 A number of studies to inform good practice in collecting mental health data for minority ethnic status and to inform the 2001 Census ethnicity questions illustrate key considerations in the collection of data for analysis by ethnicity (Halpern and Nazroo 1999, Aspinall 2000, 2003, Bracken and O'Sullivan 2001). These studies highlight the importance of capturing detailed information to encompass descriptors of religion, distinct area of origin, identification with the nation of residence (as in the bi-cultural term Asian-Scottish), first language, English literacy and age at migration as well as recent and current postcode information.
11.62 A study that used a large dataset assembled from 26 Local Authority and NHS trust areas in England with details on detentions of patients under the Mental Health Act 1983, reported that information about ethnicity was collected and categorised in a variety of ways across datasets and because personal identifiers were not available, over-representation of groups more at risk would occur in analysis since repeated admissions to specific individuals could not be identified (Audini and Lelliot 2002). All of the data-sets were found to have missing data. The authors recommended that monitoring of the Mental Health Act 1983 should be revised to allow for data collection at the individual level. This study also reported a wide variation in classification of ethnicity between data-sets and, implicitly, over time within them. They recoded to one of four categories using the range provided of between 4-16.
11.63 Comment on this article recommended an overhaul of the ways in which such routine data are collected, centralised and analysed with a programme that crossed over between health and social care (Harrison 2002). The author noted that the introduction of a new Mental Health Act in England & Wales might offer an opportunity to make these important changes for future monitoring of trends and activity.
11.64 Elsewhere, observed inconsistencies in the understanding and use of the term Asian in studies and surveys, for example, to encompass or exclude Chinese or Indian sub-continent subjects, highlight the importance of more detailed area-specific enquiry and the inadvisability of grouping pan-Asian terms (Aspinall 2003).
11.65 In the section on ethnicity, the recent Census survey of 2001 for England & Wales and the one for Scotland both included an option for Irish within the broader White category where these previous 1991 Censuses had "Irish traveller" as the only option specific to those of Irish origin or parentage (General Register Office for Scotland 1991). Regarding respondents to both of the British mainland censuses, it has been reported that the majority of those of Irish parentage did not identify themselves as such and in interviews with 72 people of Irish descent, all those born in Scotland self-identified as Scottish (Walls and Williams 2004). Recently, studies and reports dedicated to the mental health of minority ethnic groups have included collection of data on this background when discussing and reporting on their experience of mental health and psychiatric services (Erens et al 2001, National Centre for Social Research 2002, Walls and Williams 2004).
Policies on recording ethnicity
11.66 Journal correspondence questioning the use of 'outdated' hospital admission data (in an article focussing on those of Irish origin) commented that mandatory routine collection of ethnicity data was not introduced for NHS in-patients until April 1995 (Aspinall 2000). This requires trusts to use categories used within the national Census Survey. In visits to 104 in-patient units in 1999 the Mental Health Act Commission found that only half of them had written policies on the recording of ethnicity (Warner et al 2000).
Prevalence of psychosis and detention under the Mental Health Act 1983
11.67 A recent study of ethnic minority psychiatric illness rates in the community ( EMPIRIC) conducted a large quantitative survey of ethnic minorities using the health survey for England for its sample (Erens et al 2001, National Centre for Social Research 2002). The study measured psychotic symptoms using the Psychosis Screening Questionnaire ( PSQ). The White group was found to have a prevalence of scoring positively on any of the PSQ questions of 6%. This compared to a lower rate for the Bangladeshi group of 5% and higher rates for Irish (8%), Indian (9%), Pakistani (10%), and African-Caribbean (12%) groups. It is noticeable that the rates of prevalence of psychosis in this general ethnic population study are lower than rates of psychiatric contact and treatment.
11.68 Using datasets for the purpose of examining detentions under Part II of the Mental Health Act 1983 in England another study reported that Black people were over six times more likely to be detained than White people. In the cases of Black men this rose to an eight-fold increase, while Asian people were 65% more frequently detained under Part II (Audini and Lelliott 2002). The major limitation in the study was that, because of the way that the data-sets were presented, the researchers were unable to identify repeat incidences of detentions attributable to individuals. This study analysed 31,702 incidences of Part II detention over the period 1988-99 from areas with a combined population of 9.2 million.
11.69 Previous studies have placed the figure for detentions for Black people at closer to three times than for White people although one article that reported this statistic included Asian in its definition of Black (Keating et al 2003).
11.70 An update on current literature relating to Chinese mental health reported returns to the Mental Health Act Commission detentions for Chinese as 0.3% for the period from 1996-98 (Cowan 2001). This percentage detained is exactly the same as the proportion of Chinese people in the England & Wales national population with 40% residing in Greater London. The author concluded that evidence about the prevalence of mental disorder amongst Chinese people was extremely limited.
11.71 A study which conducted a retrospective case note analysis on hospital records and clinical notes of restricted hospital order patients conditionally discharged from a large medium secure unit between in England between 1987-2000, compared data on those of Black African-Caribbean race and origin with all other ethnic categories (Riordan et al 2004). Most of the subjects in both groups had a diagnosis of schizophrenia and there was an over-representation of Black people (36%) as compared to the general population.
11.72 Although the study's findings were inconclusive the authors suggested that the imposition of the hospital order may have been on the basis of number of previous offences in the Black group rather than the severity of the index offence as was more often the case in the non-Black group, indicating that the threshold for the imposition of the order may be different between the groups. The article cited evidence from previous studies of greater police attention and a disproportionate likelihood of Black people going to crown court trial and postulated that the study may support the view that black people are seen as being more dangerous.
Rates of contact with psychiatric services
11.73 The consensus from the extensive examinations of the literature on psychotic illness identified is that rates of contact with psychiatric services are found to be higher for some minority ethnic groups, most notably African-Caribbean (3-6 times higher than white groups). However a hypothesis that suggests a higher prevalence of this illness in these groups is still one that it would be unwise to support (Sharpley et al 2001, Chakraborty and MacKenzie 2002).
Findings from Mental Welfare Commission for Scotland & Mental Health Act Commission visits
11.74 Within the course of their visiting programme of 2001-2002, the Mental Welfare Commission identified a deficiency of care with regard to a Punjabi speaker with very limited English. Amongst the many inadequacies in care highlighted in the subsequent investigation were failures to recognise the need for and provide appropriate interpretation services and to consider access to advocacy and befriending. The need for specific communication of ongoing care including discharge planning, informed consent for treatment and general day-to-day consideration of specific cultural and language needs were highlighted, and recommendations to the Trust and Local Authority were made accordingly (Mental Welfare Commission 2002).
11.75 The MWC continued consultation processes in this area and adopted racial and cultural issues as a special focus for their visiting programme during 2003-2004 (Mental Welfare Commission 2003). A dedicated report, Race and Culture themed Visiting Programme: gaps in the service provision and ways forward summarises some of the main issues facing people from minority ethnic communities with mental health problems, gaps in service provision and ways forward (Mental Welfare Commission 2005).
11.76 An article detailing visits made to 104 inpatient units on one day in 1999 on behalf of the Mental Health Act Commission reported similar concerns about the use of interpreting services (Warner et al 2000). Although three-quarters of the units used trained interpreters, only 31 of the 56 patients who were not fluent in English had ever had access to one, while two-thirds of the wards had used patient's friends or relatives for interpreting, raising serious concerns about patient confidentiality and objective decision-making by staff.
Professional perceptions and practice towards service provision
11.77 An audit of research on minority ethnic issues identified common issues particular to mental health which included GP's inability to identify need, a lack of awareness of available services, consequent failure to make appropriate referrals against a background of relatively low uptake of services (such as counselling and befriending) by minority ethnic groups (Netto et al 2001).
11.78 A recent assessment of mental health services postulated that professionals' assumptions of the existence of considerable community support combined with evidence of low demand leads to underestimates of need and provision of services for people of ethnic minority backgrounds (Grant 2004). It has been suggested elsewhere that this stereotypical attitude about caring communities is significantly disadvantageous to carers within minority ethnic groups in gaining equitable support (Keating et al 2003).
11.79 The results of visits made by Mental Health Act Commission to 104 inpatient units reported that 11% of the patients had reported racial harassment and three-quarters of the units visited had no policy for dealing with this, half of them did not have policies on treatment and detention issues specific to minority ethnic groups, and two-thirds had no training policy on anti-discriminatory practice (Warner et al 2000).
11.80 Refugees and asylum seekers have been experiencing particular difficulties in accessing services. It has been reported that professionals (and in particular GPs) have often been found to offer incorrect assertions that they are not entitled to services or have simply refused them (Keating et al 2003). This report concluded that NHS staff lacked knowledge of refugees' rights to health care that their access to translation services was especially limited.
Possible influencing factors
11.81 A study of data from a national community survey of England & Wales compared the responses from 5,196 minority ethnic and 2,867 White subjects to test the hypothesis that ethnic group concentration is associated with lower levels of reported psychiatric symptoms (Halpern and Nazroo 1999). Whilst this was broadly supported for both psychotic and neurotic symptoms, the effect was found to be modest in size and, in the case of the Pakistani sample, was reversed. Both reduced exposure to local prejudice and increased social support were identified from responses as possible causes of the protective effects of same ethnic group concentration.
11.82 Using the Psychosis Screening Questionnaire to screen people in the community, the EMPIRIC study found a socio-economic gradient in risk of psychosis in African Caribbean, White and Irish interviewees but this was not found in Bangladeshi or Indian participants and was reversed in those of Pakistani origin (National Centre for Social Research 2002).
11.83 In a study of case records of people with schizophrenia in electoral wards of Camberwell in London for a ten year period (1988-1997 n=222), 57% were non-White, as defined by self assigned categories at Census, which was predominately Caribbean (40%) and African (30%). The study found that the lower the proportion of non-White to White population was in an area the higher the incidence of schizophrenia in those ethnic minorities (Boydell et al 2001). The possibility of selection bias where non-Whites might choose to isolate themselves from their ethnic community was determined as being unlikely as the area under study was predominately local authority housing and therefore limiting on the population's spontaneous mobility.
11.84 In addressing the argument that mental illness is deficiently identified in subjects of lower acculturation by western psychiatry, one study found that poor English and older age on migration were strongly associated with lower reported psychotic symptom levels (Halpern and Nazroo 1999).
The impact of migration
11.85 The literature reported is entirely divided as to whether migrational factors have any bearing on increased treatment rates and over-representations of psychotic illness for some minority ethnic groups, and some earlier studies are reported as finding positive effects on outcomes for mental health (Sharpley et al 2001; National Centre for Social Research 2002). The EMPIRIC community study reported its findings on this matter to be consistent with a similar and comparably extensive community study and reported variations on prevalence of psychosis in relation to migrational status to differ in effect between different ethnic groups. The author commented that it was difficult to understand why this should happen if it was a true effect (National Centre for Social Research 2002).
Issues around rates of psychosis amongst African-Caribbean groups
11.86 A review of the current hypotheses in understanding the (apparent) excess of psychoses among the African-Caribbean population in England discussed a range of possible attributable factors (Mental Welfare Commission 2003). This study concluded that it might be possible that the threshold for a diagnosis is set lower for a diagnosis of schizophrenia, as hallucinations and paranoid ideas may be more common among those of African Caribbean origin.
11.87 Several studies and correspondence discussed the possible existence and influence of institutional racism (Minnis et al 2001, Spector 2001, Sharpley et al 2001, Chakraborty and MacKenzie 2002, Eagles 2002, Freeman, 2002). Although there would seem to be a strong inclination to support this as an influence on high rates of psychosis and treatment, it was not proven, reportedly due to the lack of rigour in research that failed to overcome the many possible confounding factors.
Suicide and self-harm
11.88 A national clinical survey of suicide reported that minority ethnic patients were more likely to be unemployed than those of White ethnic background, have a history of recent non-compliance and violence and were more often detained under the Mental Health Act 1983 at the time of their suicide, although this did not translate into relatively closer supervisory care prior to the incident (Hunt et al 2003). Of those that were viewed as preventable by the respondents, 33% of Asian suicides indicated having contact with the patient's family as one of the measures that might have reduced risk as compared with 16% of White cases.
11.89 It has been indicated that South Asian women in Britain have high rates of suicide. Burman et al (2002) carried out an investigation using interviews with service managers, discussion groups with service providers, community groups and survivors of attempted suicide or self-harm to assess the available services and outline potential policy changes to ensure there is adequate provision to this population. The study highlighted the need for statutory and voluntary sector organisations to undertake gender sensitive anti-racist work in relation to suicide and self-harm services for South Asian women. The study claims that there is a lack of consideration of the needs of this group and a 'privileging' of race over gender in commissioning and service provision.
11.90 An article concerning the lack of focus on Irish migrants in British health research reported that their suicide rate in the period 1988-1992 was 53% more than that of the native-born rate making it the highest recorded rate for any ethnic group (Bracken and O'Sullivan 2001). The authors commented that this trend persisted into second-generation descendants and that this was unusual in the context of research into migrant mortality. It was noted in an article about suicide in Irish migrants that Scottish migrants also had high rates in migrant studies. The author concluded that the similarity in findings between these groups with regard to social class and marital status indicated the need for further research exploring relative risks within cultural context was needed (Aspinall 2002).
Irish mental health
11.91 A study into Irish Catholic ill health in the west coast of Scotland investigated links between ethnicity, religion and health between those of Irish Catholic, Scottish Catholic, Scottish Protestant and Irish Protestant (Walls and Williams 2004). The investigators identified serious health problems, in particular unmanageable and unacceptable levels of stress that related particularly to Catholics of Irish origin who were mainly middle class men. They concluded that theories of institutional sectarianism provided the hypothesis that best explained their data.
11.92 An article dedicated to the Irish dimension reported that Irish rates of hospitalisation in England for all mental health problems were far in excess of those who were native born. Irish rates for a diagnosis of schizophrenia were second to those of African-Caribbean ethnicity, although Irish overall rates of psychiatric hospitalisation were far higher. This finding was echoed in another study which looked at the population of Haringey in London as detailed in a recent report on minority ethnic groups and mental health in London (Bracken et al 1998, Keating et al 2002). The rates of admission to hospital in England with a diagnosis of schizophrenia for those born in the Irish Republic was reported as nearly three times that for those who were born in England, although the incidence of schizophrenia in Ireland has been found to conform with elsewhere (Bracken et al 1998). This article attracted considerable correspondence, one of which criticised the use of data collected in 1971 and 1981 (Aspinall 2000). Another suggested that socio-economic and migrational factors might account for the articles findings rather than ethnic factors (Sandford 1998).
· The literature reported is entirely divided as to whether migrational factors have any bearing on the increased treatment rates and over-representations of psychotic illness for some minority ethnic groups. OLDER PEOPLE
11.93 It is estimated that 18% of the general population in the UK are of pensionable age, a figure that may grow to 20% in 2025. There are a number of concerns with the mental health status of this part of the population. Reports suggest that between 4-23% will have depression (Seymour and Gale 2004), while 1 in 20 over the age of 65 are affected by dementia, rising to 1 in 4 over the age of 85 (Audit Commission 2000). Ten to fifteen percent of older people who abuse alcohol can become depressed and are at a higher risk of suicide It was also found that many older people were using prescribed medications some of which was being taken inappropriately (Mental Health Foundation Statistics at http://mentalhealth.org.uk).
Service provision for older people
11.94 It has been documented that services for older people in Britain need to be improved (Audit Commission 2000). In January 2000 the Audit Commission published a report on mental health services for older people called Forget Me Not, which was developed and updated in 2002 (Audit Commission 2002). The report highlighted a number of areas where services needed to be developed in England. Two-fifths of GPs were reluctant to diagnose dementia early and did not use protocols to help in the diagnosis of dementia or depression in older people. Over one third of GPs felt that they did not have easy access to specialist advice or received enough training on dementia.
11.95 The Commission also pointed out that specialist teams for older people with mental health problems were only fully available in less than half of all areas and often did not have all of the recommended core team members. Only one third of areas had agreed assessment and care management procedures, while a small number had compatible IT systems. The audit also found that assessment and short-term treatment services in day hospitals were available in less than half of the areas, while over one third of carers reported having difficulties getting respite care (Audit Commission 2002).
11.96 The need for the promotion of mental health services for older people has been established in the National Service Framework for older people in England. Standard Seven in particular (Mental Health in Older People) establishes the need ensure that older people who have mental health problems will be able to access integrated mental health services for effective diagnosis, treatment and care (Department of Health 2001a).
The Mental Health (Care and Treatment) (Scotland) Act 2003
11.97 In Scotland, the Mental Health (Care and Treatment) (Scotland) Act 2003 sets out a clear framework for the care and treatment of people with mental illness that should benefit older people. The Scottish Executive set up an expert group to look specifically at the health needs of older people, including their mental health needs. The report of the expert group, Adding Life to Years (Scottish Executive 2002) made recommendations to improve the detection and treatment of older people with depression and improve services for older people with dementia. The first progress report Adding Years to Life Annual Report 2002-2003 (Scottish Executive 2003b) highlighted extra spending and new initiatives from the Executive, including the modernisation of primary care, and the role being given to Community Health Partnerships in the development of co-ordinated mental health services.
11.98 The literature in this area was very limited, centring mainly on the detention rates for older patients and offenders.
Detention rates for older patients
11.99 Salib et al (2000) suggested that the emergency detention of older patients receives little attention in research literature. They carried out a review to examine the use of emergency detention for elderly psychiatric patients (compared to younger patients) to assess what determined outcome. Of 1,027 applications of section 5(2) of the Mental Health Act 1983 (under which voluntary patients can be detained by a doctor pending further assessment) implemented in Winwick hospital (North Cheshire) between 1985 and 1997, a total of 61 were applied on elderly patients. The mean age of the patients was 73 (range 65-90 years) and 37% were male, 63% female.
11.100 The main characteristics of older patients detained under section 5(2) appeared similar to inpatients aged less than 65 detained during the same period. The reasons given for detention of older patients included, aggressive behaviour towards others (16%), suicidal threats (33%), acute psychosis (44%) while the remainder of the cases were poorly documented.
11.101 Of the 61 older inpatients, 46% regained informal status while 54% were moved onto longer-term treatment orders. The most common reasons for conversion to section 2 (admission for assessment for up to 28 days) or section 3 (admission for assessment for up to 6 months initially) were: a clinical diagnosis of functional mental illness; duration in hospital of more than 48 hours; or, when section 5(2) had been preceded by section 5(4) where a voluntary patient has been detained using the nurses' holding power. Although not statistically significant, female patients appeared to have had their emergency detention order converted to other sections more frequently than males.
11.102 The authors suggest that the high rate of non-conversion of emergency detention in older people (43%) may be because section 5(2) was being used to control isolated incidents of disturbed behaviour in normally co-operative patients. They also point out that the positive association between the prior use of section 5(4) and the conversion rate of section 5(2) is interesting and might warrant more investigation.
11.103 Research on older people in secure forensic psychiatry services suggests that some admissions reflect an absence of more suitable provision for older patients at a lower level of security. Coid et al (2002) studied admissions to medium and high security from 7 of 14 health regions in England over a seven year period between 1988-1994. Less than 2% of admissions were people over 60 years (with less than 1% being over 65). Of 61 admissions of older patients to secure forensic psychiatry services, 54 followed criminal charges or convictions while 7 were transfers from another hospital or the community (following non-criminalised behavioural disorder). Only 3% of the older group were admissions to a high security hospital.
11.104 Offences which led to admission for older people included acquisitive offences, homicide, less serious violent offences and criminal damage. The most prevalent diagnoses for this group were depressive illness, delusional disorders and dementia. Patients over 60 years old had fewer convictions than younger patients and were generally older when first admitted to psychiatric hospitals (which usually coincided with their first appearance in court). The offender patients in this study were highly selected and it is made clear that they do not reflect documented patterns of offending for older people in England & Wales (it is suggested that this group may have precluded consideration for psychiatric hospital admission or may have been deemed 'untreatable').
11.105 Convictions for homicide were a prominent element of the older group in this study and Coid et al (2002) suggest that these homicides and their associations are heterogeneous. A quarter had been transferred from a special hospital to medium security for rehabilitation having committed offences many years earlier. The majority though had been admitted directly from secure services. The authors highlight that they were unable to explain why older patients were admitted to medium or high security, questioning whether it was an accurate assessment of their potential danger to the public or due to lack of available places at low security and where there was inadequate provision for longer-term care in psychiatric hospitals.
11.106 In order to assess changes in the management of incapacitated older people, Kearney and Treloar (2000) carried out a postal audit of practices in the South East Thames Region before and after the Bournewood judgements (a case in 1998 where the House of Lords overruled a Court of appeal decision that hospitals and nursing homes should not be allowed to detain vulnerable patients without their consent). The results from the study show a trebling of the rate of admission under section of older incapacitated patients prior to the House of Lords ruling. Following the ruling the detention rate appeared to have returned to the pattern set prior to the Court of Appeal ruling. The authors highlight a continued need for proper protections to be put into place for this vulnerable group.
- It has been documented that the services for older people need to be improved.
- Two-fifths of GP's were reluctant to diagnose dementia early and did not use protocols to help in the diagnosis of dementia or depression in older people. Over one third of GP's felt that they did not have easy access to specialist advice or received enough training on dementia.
- In Scotland, the Mental Health (Care and Treatment) (Scotland) Act 2003 sets out a clear framework for the care and treatment of people with mental illness that should benefit older people.
- Emergency detention of older patients receives little attention.
- · Research on older people in secure forensic psychiatry services suggests that some admissions reflect an absence of more suitable provision for elderly patients at a lower level of security.
people with Learning Disability
11.107 While offering some general information, this section will look specifically at any literature relating to people with a learning disability who have a mental illness. The social and health care needs of people with learning disabilities has started to be given a higher priority at policy level than in the past. The publication of the White Paper Valuing People: A New Strategy for Learning Disability in the 21 st Century (Department of Health 2001b) was the first White paper on learning disability for thirty years in England. In Scotland, a review of learning disability services The Same as You?A review of services for people with learning disabilities (Scottish Executive 2000b) was the first policy initiative for over twenty years.
Statistics on the number of people with learning disabilities
11.108 Statistics on the total number of people with learning disabilities in the UK are not clear. Estimates suggest that there are 580,000-1,750,000 people with mild disabilities and 230,000-350, 000 with severe learning disabilities. The incidence of Down's syndrome is 1 in 6000. Males are more likely than females to have both mild and severe learning disabilities. In general, people with learning disabilities have a high level of unrecognised illness as well as reduced rates of access to health care (http://www.learningdisabilities.org.uk).
11.109 In Scotland, while there are no accurate figures available, it is estimated that there are about 120, 000 people who have a learning disability. About 20 people in every 1,000 have a mild to moderate learning disability and 3-4 in every 1,000 have a severe or profound disability ( NHS Health Scotland, 2004). A National Mental Health Services Assessment: Towards Implementation of the Mental Health (Care and Treatment)(Scotland) Act 2003 (Grant 2004) pointed to research which suggested there was an increasing number of older people with learning disabilities, that people were moving away from home to receive treatment (because of a lack of appropriate services) and that hospital closure programmes had led to some parts of the country having higher numbers of people with learning disabilities than would be expected.
Learning disability and mental health
11.110 It is estimated that people with a learning disability have a high incidence of mental illness, with a lifetime prevalence of 50% ( NHS Health Scotland 2004). The risk of children or young people with a learning disability experiencing mental illness is 30-40% higher, and for adults it is 40-50% higher than the general population. Older people with learning disabilities have more mental health problems, particularly people with Down's syndrome who may get early onset dementia. There has also been an annual increase of about 1% in the prevalence of people with learning disabilities over the last 35 years, which is set to continue over the next ten years (Scottish Executive 2000b).
11.111 The NHS Health Scotland Health Needs Assessment Report: People with Learning Disabilities in Scotland ( NHS Health Scotland 2004) pointed to some of the mental health and behavioural problems of people with learning disabilities. In a review of research the report cites studies which show that genetic causes of some learning disabilities are associated with some forms of mental illness. For example, Down's syndrome is associated with depression and dementia, Prader-Willi Syndrome is associated with an affective psychosis, and velo-cardio-facial syndrome is associated with psychosis.
11.112 In addition, some conditions such as schizophrenia, depression, severe anxiety disorders, delirium and dementia are more common in people with learning disabilities than in the general population. People with learning disabilities can also commonly suffer from eating disorders (including eating behaviours and feeding disorders not prevalent in the general population) and Attention Deficit Hyperactivity Disorder ( ADHD) is also said to be common amongst children and adults, although there is concern about the reliability of diagnosing ADHD in people with learning disabilities ( NHS Health Scotland 2004).
11.113 A lack of awareness by professionals and carers has meant that mental illness can remain undiagnosed and unmanaged in people with learning disabilities for long periods of time. The report suggests that:
'diagnostic overshadowing contributes to this. This refers to the phenomenon whereby debilitating emotional/psychological problems are assumed to be less important than they Actually are, because of the context of the person's learning disability' ( NHS Health Scotland 2004).
11.114 The authors argue that given its high prevalence, mental illness should always be a consideration as a possible cause of changes in the behaviour of people with learning disabilities.
People with learning disabilities in secure settings
11.115 Under the Mental Health (Scotland) Act 1984, a small number of people with learning disabilities were detained. Of these, most were on a section 18 order (detention for up to 6 months initially), and few requested reviews of their detention or appealed to the sheriff. It was also clear that the use of detention procedures varied across Scotland (Scottish Executive 2000b).
11.116 The Same as You? report (Scottish Executive 2000b) also pointed to the lack of information on numbers and needs of people with learning disabilities in prison or secure accommodation for children. Following one of the recommendations of this report a study was commissioned to look at the numbers of people with learning disabilities and/or Autistic Spectrum Disorders ( ASD) within these settings in Scotland (Myers 2004). The study included a scoping exercise of 57 secure settings and case studies of seven of these settings. Secure settings included the State hospital, 16 prisons, 6 secure accommodation units for children and 24 specialist in-patient units for people with learning disabilities and/or ASD and for people with mental health problems.
11.117 The problems of identifying the number of people with learning disabilities or ASD in secure settings were confirmed by this study. It was also pointed out that while there were only a small number of people with learning disabilities and/or ASD in prisons or secure settings, it was likely that this number represented a proportion of a larger population which had not been identified, assessed or diagnosed.
11.118 Amongst those with learning disabilities across different secure settings (from a sample of 49 people) there were a significant number with histories of statutory or institutional care, and a high proportion with current mental health and communication problems. A number of the sample were also seen as being high risk (in relation to offences committed or behaviour). People with learning disabilities were also seen as being at risk from exploitation, bullying or abuse from other residents in secure settings.
11.119 Across the secure settings there were different approaches to assessment in general, where few (apart from the learning disability units) had access to specialists in learning disability or AHD. Staff in the secure settings also highlighted a number of problems with what they saw as inadequacies and gaps in provision for this group. Some staff suggested that people with learning disabilities presented needs that neither non-healthcare secure settings (where the focus was on custody or offending behaviour) nor healthcare secure settings (where the focus was on mental illness) could appropriately fulfil.
11.120 It was also pointed out that resources for secure settings (apart from the specialist units) were not designed around the provision of needs of people with learning disabilities. As well as that, the transition of people to less secure or community environments was being affected by a lack of resources outside of the secure system, which meant that either people were being left in higher level security settings than they needed or were moved on without proper support (Myers 2004). The author concluded that
' the combination of complex individual needs and the lack of clear service responsibility or policy focus may further increase the risk of social exclusion for this vulnerable group of people'
and that this has very clear implications for policy-making, service planning and practice.
Discharge from secure settings
11.121 There are very few studies which described the long-term outcomes following discharge from secure settings. Halstead et al (2001) followed up 35 patients who had received at least one years treatment in a learning disability medium secure unit in England for a maximum of five years. Of the sample, 29 were male (83%), 28 (80%) were Caucasian, 5 (14%) African-Caribbean, 1 (3%) Asian, and 1 (3%) mixed race. Almost half of the sample (46%) had been admitted from prison, while 20% came from special hospital, 17% from learning disability hospitals, 6% from regional secure units and 9% from the community. Thirty-one patients were in the borderline or mild retardation group, while one patient with an autistic spectrum disorder was of normal intelligence and 3 had a moderate mental retardation. In relation to primary diagnosis, 16 patients suffered from a psychotic illness, 4 were depressed and the remainder were classified under behavioural disorder. For a secondary diagnosis, 14 patients had a personality disorder, 12 had problems with alcohol and 3 with drugs.
11.122 By the time of discharge, 16 patients had made 'good' progress, 11 had made 'some' progress, there was no change in 4 of the patients, while a further 4 were thought to have deteriorated. At the end of the treatment, 3 people went home, 17 went to a hostel, 13 were placed in another hospital while 2 were transferred to special hospital. Ten patients who went to hospital remained there throughout the follow-up period (including the 2 patients placed in special hospital). By the end of the follow-up 3 of the hospitalised patients had moved to a community placement and a further 2 had died.
11.123 The study found that a good treatment outcome was more common in those patients with a significant learning disability. It was also clear that the early period following discharge was a peak time for relapse. Within this group it was also found that there was a low reconviction rate (only one person) and that reconviction was less likely for older patients following discharge. At the end of the study period, 21 people were living in the community with support. It was found that a good response to inpatient treatment was associated with successful community placement, although the authors argue that secure service should be available to help with community management at any point in a follow-up to help local services.
- In general people with learning disabilities have a high level of unrecognised illness as well as reduced rates of access to health care.
- It is estimated that people with a learning disability have a high incidence of mental illness, with a lifetime prevalence of 50%.
- The risk of children or young people with a learning disability experiencing mental illness is 30-40% higher and with adults it is 40-50% higher than the general population.
- Older people with learning disabilities have more mental health problems, particularly people with Down's syndrome who may get early onset dementia.
- A lack of awareness by professionals and carers has meant that mental illness can remain undiagnosed and unmanaged in people with learning disabilities for long periods of time.
- The use of detention procedures for people with learning disabilities varied across Scotland.
- · There is a lack of information on the numbers and needs of people with learning disabilities in prison or secure accommodation for children.
11.124 There are very particular challenges to be faced when dealing with the mental health needs of deaf people. The term deaf people is used here to encompass all groups, including those who define themselves as Deaf, and a linguistic minority rather than a disability group.
Prevalence of mental health problems for deaf people
11.125 It has been reported that deaf adults share the overall prevalence rate for psychotic disorders but are more likely to be diagnosed as having a personality disorder or behavioural or adjustment problems (although this may be a consequence of being deaf). Deaf people with mental health problems are more likely to have learning difficulties or organic syndromes and co-morbidity is also higher in this group (Department of Health 2002c).
11.126 Deaf children are more vulnerable to mental health problems and are at increased risk of physical, emotional and sexual abuse. Deaf children also have a higher risk of impairments such as learning difficulties, multi-sensory impairment and central nervous system disorders with an estimated prevalence of 40% in deaf children compared to 25% in hearing children (Department of Health 2002c).
Service provisions for deaf people
11.127 One of the problems for services is how to effectively communicate essential information about, for example, service provisions or care plans, to people who are deaf. But, unlike services for the hearing community, adult mental health services for the deaf have developed in a generic way (with only 3 existing specialised deaf services).
11.128 Provision has relied on individual and organisational effort and developed at a national level in an 'ad hoc' way. The specialised nature of services specifically for the deaf has meant that there has not always been easy access to appropriate facilities for a range of mental health problems. Effective service planning has also been impacted by a lack of knowledge concerning the demographics of the deaf community and a lack of solid evidence base for specialised clinical interventions (Department of Health 2002c).
Strategy in England & Wales for deaf people with mental health problems
11.129 The Department of Health have responded to calls for the development of a national strategy for deaf people with mental health problems. The Government's strategy for adults of working age in England is set out in the National Service Framework for Mental Health (Department of Health 1999c), which sets standards of care for people with a mental illness. This included a Specialised Services National Definition Set, published in December 2002, which identifies 10 services which should be regarded as specialised mental health services, including specialised services for deaf people (defined as a service for all ages).
11.130 A Department of Health consultation document, A Sign of the Times (Department of Health 2002c) highlights a number of problems and challenges faced in delivering services to people who are deaf. Some of the main issues relate to: the fact that deaf people of all ages are disadvantaged when trying to access health services; that communication support and respect for the cultural diversity is fundamental to improving mental health in the deaf community; that providing effective mental health services to the deaf community is more costly than for mainstream services; and, that the current capacity for service development is limited (Department of Health 2002c).
Research on psychiatric services for deaf people
11.131 As has been highlighted, service planning has been impacted by a lack of information on the deaf community nationally, including numbers in prison, secure or specialised psychiatric units. Young et al (2000) state that little is known of the number of deaf prisoners in the UK with psychiatric needs. The same authors carried out a study of forensic referrals to the three specialist psychiatric services for deaf people in England (located in Manchester, London and Birmingham) (Young et al 2001). All patient case records from the three units from 1968-1999 were examined.
11.132 Of 5,034 files checked, 431 met the criteria for inclusion for a forensic referral (this number went down to 389 as 42 of the patients had been referred to more than one unit). A 'forensic referral' was classified as: 1) a patient with a history of conviction and/or 2) having received a caution; 3) a patient found unfit to plead in relation to an indictable offence and/ or 4) has been seen under a forensic section of the Mental Health Act 1983. It also included cases of 5) patients with no previous criminal history who was in contact with the unit because of a pending charge or court case.
11.133 The majority of the sample were male (91%) with only 33 females (from a total of 389 forensic patients). There were a number of types of offence that the sample had been convicted of or were currently charged with, a high proportion of which were violence and sexual offences.
11.134 Of the original 431 cases files, a diagnosis was recorded for 89% (385). Of the 389 cases (not including those referred to more than one unit), 47% were recorded as having a mental disorder, including psychotic illness (25%), mental impairment/learning disability (19%), personality disorder (36%) and other (including conduct disorders and depression). Fifty three percent of the sample were diagnosed as having no mental disorder (which did not include diagnoses of personality disorder). But, within the group diagnosed as having no mental disorder, 41% were classified as having communication problems and, in 79% of cases a psychiatric opinion had been sought prior to a court appearance.
11.135 Young et al (2001) argued that this data raised a number of issues which need to be investigated. Although the number of forensic deaf patients may seem small there is evidence that this is growing. A surprise finding was the peak age of 17-18 for men for first conviction/caution/court disposal. The authors highlighted the fact that previous research suggested that it was not common for deaf people to come before a court or be convicted at a young age (that the police would not pursue the cautioning or conviction of young deaf people because of the language complications or due to a sense of compassion). This research suggested that this may no longer be the case and that the peak age has become consistent with that of offending in the general population.
11.136 A number of the referrals were subsequently found to have no mental disorder. This is consistent with findings suggesting that deaf people who use sign language or have communication problems have been mistakenly assessed as being mentally ill or impaired by professionals jumping to conclusions. If this is the case, the authors ask, what is happening to patients who never reach these specialist services to be assessed? If the needs of this group are to be met, the development of forensic services as well as medium security facilities for deaf people will be called for.
- It has been reported that deaf adults share the overall prevalence rate for psychotic disorders but are more likely to be diagnosed as having a personality disorder or behavioural or adjustment problems.
- Deaf people with mental problems are more likely to have learning difficulties, organic syndromes and co-morbidity is also higher in this group.
- Adult mental health services for the deaf have developed in a generic way, with provision relying on individual and organisational effort and had only developed at a national level in an 'ad hoc' fashion.
- · Service planning has been impacted by a lack of information on the deaf community nationally, including numbers in prison, secure or specialised psychiatric units.
people with ANOREXIA nervosa
11.137 Webster, Schmidt and Treasure (2003) note that anorexia nervosa has the highest mortality of any psychiatric disorder, while a significant minority of sufferers need detention and involuntary treatment. At the same time clarification that feeding a person against their will is lawful has only been in place since 1997 (Webster et al 2003). Key questions arise in relation to treatment in severe cases of anorexia nervosa. Carney et al (2003) point out that clinicians differ in the use of force (as well as in the form of legal coercion in therapy). Some programmes are against it while others believe that involuntary nasogastric feeding is an integral element of treatment. Distinctions are also drawn between adults and children as well as distinctions between the form coercion takes (Carney et al 2003).
11.138 It is argued that while patients with anorexia nervosa may be able to make valid judgements in relation to certain aspects of their lives, they are often unable to make rational decisions about body weight, diet and medical treatment. As such, they should be involuntarily hospitalised and treated because they are suffering from a single delusional disturbance, which may lead to a life-threatening situation (Melamed et al 2003). Questions centre on the legal and ethical dilemmas around involuntary hospitalisation as well as concepts of 'capacity' and 'competency'.
11.139 As Melamed et al (2003) asked:
'where is the boundary between the individual's autonomy and the need for social intervention? Can the courts or the doctors deal with an illness that is also a social phenomenon outside the legal or medical perspective?'
11.140 The debate on whether artificial feeding of people with anorexia nervosa relates to whether it is ethical, as well as how competency is determined. If competency has been established, should an individual's right to refuse food be respected in all circumstances? Giordano (2003) argues that the peculiarities of the illness make this a difficult question to answer. She has suggested that anorexia nervosa is not strictly a lethal illness as the effects of abnormal eating are reversible. So, refusal to accept treatment does have a major effect on those people who are caring for someone with anorexia nervosa, which may weaken the normative strength of the principle of respect for people's competent decisions. This does not mean that a person with anorexia's refusal to accept therapy should always be disregarded but the fact that even if that person is making a competent decision it may be the case that this is not a sufficient reason to bind carers to respect that refusal. It is argued that at some level, in the case of anorexia nervosa, competence does not seem to produce the same moral obligation that it may produce in other cases (Giordano 2003). (For a fuller discussion on capacity see Chapter 5)
· Questions centre on the legal and ethical dilemmas around involuntary hospitalisation as well as concepts of 'capacity' and 'competency'.