Journal of Psychiatric and Mental Health Nursing, 2006, 13, 636–640
Service users and carers’ experiences of a psychosis service L. H. MCKENZIE 1
1
BA
(Hons)
PG Dip Psych
Trainee Clinical Psychologist, Clinical Psychology, Lancaster University, Lancaster, UK
Correspondence: L. H. McKenzie Whewell Building Fylde Avenue Institute for Health Research Clinical Psychology Lancaster University Lancaster LA1 4YT UK E-mail:
[email protected]
MCKENZIE L. H. (2006) Journal of Psychiatric and Mental Health Nursing 13, 636–640 Service users and carers experiences of a psychosis service This paper presents the findings of a survey, which examined how people with psychosis and their carers had experienced local mental health services. The research was conducted prior to the establishment of an early intervention service and other service improvements in the region. The results suggest that the mental health service is improving overall for individuals with psychosis and their carers. The experiences of recent service users and carers seem more positive than those whose first contact with the services occurred during the 1970s and 1980s. Both service users and their carers report feeling largely supported by mental health professionals and voluntary support agencies, and feel included in the treatment approach. However, a number of important issues were highlighted. These include (i) the need for public education (which may help to reduce the delay which currently occurs between people seeking support and receiving treatment); (ii) improved access to alternative treatments, such as psychosocial therapies (in conjunction with pharmacological treatment); the provision of appropriate psychiatric facilities; and (iii) the inclusion of an early intervention treatment approach. The survey provides descriptive information from one NHS trust, which shows support for larger scale research findings and government recommendations. Keywords: carers, early intervention, local services, psychosis, service users Accepted for publication: 19 April 2006
Introduction The effects of a psychotic illness can be greatly damaging, as has been well documented. The illness can result in reduced opportunity for ordinary life experiences and personal growth (Chen 1999), and can be harmful to social relationships, education and work prospects (Addington et al. 2002). There is also an increased risk of the person with the psychotic illness committing suicide (Altamura et al. 2003; Pelosi & Birchwood 2003). Several studies conducted in the late 1990s suggest that delays between care-seeking behaviour and the receipt of treatment can result in a worse outcome for an individual than if the illness were identified and treated earlier (e.g. Birchwood et al. 1998). The length of this duration of untreated psychosis his frequently between 12 and 636
24 months (Chen 1999). These findings have led to the promotion of an early intervention approach for people with psychosis, advocated in the UK by Department of Health policy guidelines (DoH 1999, 2000, 2001). With regard to such delay in the treatment of psychosis, a number of authors have reported concerns relating to pathways to care for psychosis sufferers and their carers. Recurrent themes include the stigma attached to mental illness that may deter people from seeking help from services (Chen 1999, Groom et al. 2003), apprehension about the treatments available (Groom et al. 2003), and the vital role that general practitioners (GPs) play in recognizing early signs of psychotic illness [and the need for improving their knowledge and skills in order to do this (Lincoln et al. 1998, Addington et al. 2002, McGorry & Yung 2003)]. The difficulty faced by professionals in identifying early © 2006 The Author. Journal compilation © 2006 Blackwell Publishing Ltd
Service users and carers experiences
signs of psychosis has been acknowledged (Etheridge et al. 2004). Attempting to address the difficulties faced by people suffering with psychosis, authors have identified three key factors. First, the need to educate the general public, health professionals (including GPs), the at-risk population, service users and their family members about the illness and its symptoms (Chen 1999, McCann & Clark 2003). Second, the need to inform people about the services that are available, for example, how and where to seek help. Third, the importance of early intervention treatment for those suffering with the illness (Lincoln et al. 1998, Addington et al. 2002, Groom et al. 2003, McGorry & Yung 2003, Norman et al. 2004; O’Toole et al. 2004). There is evidence to suggest that such treatment can improve the course of the illness (Johannessen 2001, McGlashan 2001), and lessen the severity and social consequences of the disease (Pelosi & Birchwood 2003, Hafner et al. 2004, Hamilton Wilson et al. 2005). While it is widely accepted that antipsychotic medication is central in psychosis treatment, clinical research has found support for psychosocial therapies in effectively treating psychotic illnesses (Chen 1999, Gilbert et al. 2003). Such approaches include family interventions (Tarrier & Bobes 2000) and the use of cognitivebehavioural techniques (Fowler et al. 1998, Tarrier & Bobes 2000, Jones 2002, Gilbert et al. 2003). Despite this, such treatments are not commonly available (Baguley et al. 2000). The aim of this survey was to examine the experiences of people with psychosis and their carers in accessing and receiving local mental health services.
Methods The survey, for which ethical approval was obtained from the Research and Ethics Committee, was divided into two analyses: an adult survey and a child file audit. Two questionnaires were designed for the adult survey, one for service users and one for carers, in order to examine people’s experiences of the current psychosis service. The questionnaires comprised of tick box responses, with an option for additional comment, and open-ended questions. Respondents were offered assistance with the completion of their questionnaires from a person independent of the psychosis service. Respondents were also invited to take part in interviews concerning their experiences of the service. The data derived from the adult survey examined the individual’s experience of accessing mental health services, their views on the support they had received from these services and their suggestions for service improvements. The inclusion criteria for the survey sample were that the service users would have a diagnosis of psychosis and that © 2006 The Author. Journal compilation © 2006 Blackwell Publishing Ltd
they had relatives. A total of 82 questionnaires (41 service user and 41 carer questionnaires) were distributed. Of these 12 of each of the service user and the carer questionnaires were returned, a response rate of 29%. Six people chose to attend an interview. The questionnaires and interviews were evaluated using the standard content analysis procedure, which assessed the frequency of themes identified within the collated information. The child audit was designed to consider how younger people with psychotic episodes, and their carers, had experienced the local mental health services. Files of four adolescents, each aged between 16 and 18 years (three males, one female), were studied.
Results Adult survey Changes within the service The findings of this survey suggest that the local mental health service is improving overall for people with psychotic difficulties and their carers. The experiences of recent service users seem more positive than those whose first contact with mental health services was in the 1970s or 1980s. For instance, one service user commented: ‘. . . my first experience of mental health was absolutely atrocious . . . the difference in it is just absolutely marvellous’. Access to services The majority of carers (92%) initially asked for help from the health services (usually from their GP) as soon as they became concerned about their relative. However, a number of carer respondents (25%) noted that they did not receive help when they sought it. Two such respondents explained their experiences: I called the GP out and they said they thought he was on drugs and just a bad teenager. GP stated son needed expert mental health assessment – was told none available for at least 3 months due to shortage of staff.
Several people reported that they had attempted to access services for up to a year from onset of difficulties. Explanations for this included GP’s reluctance to refer for psychotic diagnosis, no mental health assessment available due to staff shortage and poor communication between hospital and surgery. One service user noted that they had not requested help earlier for . . . ‘fear of being locked away and being branded mad . . . stigma’. There seems to be some difficulty with regard to the person with psychotic symptoms admitting to having problems and asking for help before being able to receive it. One carer respondent recalls: ‘We had approached our GP but 637
L. H. McKenzie
he was unable to help until our son admitted he had a problem and was willing to ask for help.’ Alarmingly, in a number of cases, the person seems to have been admitted only following a crisis, such as, attempting suicide. Twenty-five per cent of service user respondents explained that the events leading up to contact with mental health services were either feeling suicidal or attempting suicide. One carer respondent noted that they had to wait for longer than a month between asking for help and receiving it: ‘GP provided antidepressants but no-one from mental health was able to provide any help. When I phoned they asked if he was suicidal and because he wasn’t [at that time] they had no-one to see him – short staffed.’ Support within the service Service user respondents stated that the most frequent form of help offered to them by the service was medication (67%). Few service users (8%) reported that they were offered therapy in conjunction or as an alternative. However, both service users and their carers noted that one of the most helpful things offered by services was being able to talk about their problems on a one-to-one basis with their care worker or psychiatrist. One service user respondent commented that the most helpful thing is ‘that someone is there for me to talk to’. In support of this, both service users and carers (50% of each) noted the importance of regular visits or contact with health professionals. The majority of service users (67%) also mentioned that they do have a key worker whom they value. Again, nearly all service users (83%) and carers (75%) reported that they were always involved in the planning of their care and that they understood their care plan. The majority of both service users (67%) and carers (75%) claimed that they had been informed of local support groups and voluntary agencies. They were unanimous in noting the importance of these in terms of information provision and social and individual support. Comments by carers included: ‘The voluntary agencies provide information and support that makes a difference to lives.’ ‘Carer groups lessen the feeling of isolation.’ In terms of areas where respondents felt more support could be offered, carers stated that it would have been helpful to have received support at the time of the ‘crisis’ and when their friend or relative was first admitted to hospital. One carer respondent stated that they needed ‘more support at time because of relative being “sectioned” and the first few days whilst he was still manic’. Shortages within the service Several people noted a lack of out of hours service and also a shortage of complimentary services. One carer noted, for instance: ‘I feel as if I could contact someone if I need 638
to . . . but if it’s out of hours I’m less sure.’ Some of the respondents explained that they have difficulties attending support groups owing to geographical distance. A number of respondents also commented on a lack of support workers, whose help they feel would be valuable for the service user. For example, one carer noted that ‘the support worker is a vital part of the care plan . . . they can listen to the person, take them out and build up their confidence . . . prevents a crisis state’. Further comments were made regarding the lack of resources in the area, for example, in terms of staff shortages. One carer respondent noted, ‘The service is not good enough because there’s not enough money to provide an early intervention team, crisis team and extra support.’ There also appears to be a shortage of appropriate psychiatric services in the local area, particularly for younger service users, leading to a struggle for resources. Consistent difficulties were found throughout the child file audit of a lack of local resources and units appropriate for young people with psychotic illnesses, problems exacerbated in cases whereby service users had dual diagnoses.
Child audit Service user 1 The local Child and Adolescent Mental Health Service (CAMHS) team was unable to find a placement for the 1 adolescent girl for 1 /2 days. An on-call manager commented at the time that there were no beds available in child services. The psychiatrist noted that the girl was inappropriately placed (temporarily on a general psychiatric ward) and that a more suitable placement should be pursued. The social services documented the referral, commenting on the delays in assessment and admission, and the several hours’ delay owing to the lack of an adolescent assessment bed. The CAMHS psychiatrist stated that as ‘unfortunately there were no appropriate beds locally’; she was admitted to an adolescent unit in another county, where she remained until her discharge. Service user 2 This service user, who was presenting with psychotic symptoms, was in contact with a CAMHS team. Following urgent contact from a relative, the team discussed the options for a possible admission if necessary. Difficulties were found with each of the alternatives. These were: a psychiatric unit with an adolescent ward in another region – did not take acute admissions; a general psychiatric ward in the local area – the young man’s GP felt this to be unsuitable; and a local paediatric ward – his GP felt that the young man was unsuitable for this ward. It was noted: ‘We are running out of options.’ The young man was placed at © 2006 The Author. Journal compilation © 2006 Blackwell Publishing Ltd
Service users and carers experiences
the former of these options, referred for further psychiatric assessment and management and later discharged to a local Intensive Rehabilitation Unit. Service user 3 This young man was diagnosed from a young age as having learning disabilities. A CAMHS team became involved with him when he started to present symptoms of a psychotic nature. The team discussed the possibility of a referral to an adolescent ward at a psychiatric unit in another region. They were also informed that a bed could be used on an adult ward locally if no other was available. The manager of this ward commented that they had concerns in terms of other service users who were known to prey on the vulnerable. The young man, however, was admitted to this ward for approximately a 2-week period. At a later date the CAMHS team again needed to refer the young man for admission. On this occasion no beds were available and the appropriateness of the referral to the previous ward was questioned in view of his learning disabilities. The young man was referred and admitted to a psychiatric hospital in another county. Service user 4 This service user was admitted to a general psychiatric ward in the region for a period of 4 months as a result of showing symptoms of anxiety and psychosis. He was diagnosed at a young age with Asperger’s Syndrome. In the ward records, his consultant psychiatrist noted his concerns that the young man ‘requires specialist provision which we do not have locally’.
Discussion The findings of this survey have been limited by a number of factors, including the failure to pilot the administered questionnaires, and the low response rate (29%). However, the findings of the adult survey suggest that the experiences of recent service users, in this locality, are more positive than those whose first contact with mental health services was in the 1970s or 1980s. Both service users and their carers appear, in the main, to feel supported by mental health professionals and voluntary support agencies, and feel included in the treatment approach. Despite these findings, there are some important areas, which this investigation suggests, need to be addressed by psychosis services.
Public education There seems to remain a stigma attached to psychiatric difficulties, including a fear of being ‘locked away’. The find© 2006 The Author. Journal compilation © 2006 Blackwell Publishing Ltd
ings of the adult survey concur with previous literature (e.g. Chen 1999), and suggests that there continues to be great need for mental health services to work towards reducing this fear through positive promotion, public education and inclusion.
Access to alternative therapies While medication remains central to treatment, current literature suggests that it is also important to access alternative treatments including family and cognitive-behavioural therapy. The findings of the adult survey add weight to the notion that these interventions are not commonly accessible (Baguley et al. 2000). For instance, one carer commented that: ‘. . . where the system fails is through . . . therapy’.
Appropriate psychiatric facilities The seeming lack of appropriate psychiatric hospitals in the local area, noted in both the adult and the child file audit, is concerning, particularly in light of reports of detrimental psychological consequences for young people being placed on general adult psychiatric wards (Lincoln et al. 1998). The known exacerbation of these cases, whereby service users have dual diagnoses (Etheridge et al. 2004) is also highlighted through the child survey.
Pathways to care Information gained through the child file audit appeared to suggest common themes of psychiatric familial history, social isolation and initial presentation of problems at school. It may prove helpful to pursue early identification of psychotic illnesses through educational pathways, perhaps via greater contact between mental health services and educational institutions.
Early intervention Several statements made by respondents in the adult survey concur with the growing body of evidence, which suggests that early intervention with people with psychotic symptoms is crucial to providing an effective treatment approach (e.g. Pelosi & Birchwood 2003). During interviews several carers commented on this matter: ‘I just felt he could have been in . . . if he had been seen at the beginning instead of waiting until he was absolutely . . . in a collapsed state saying he wanted to commit suicide . . . could have been prevented’, ‘. . . early intervention is paramount we think . . . to minimize damage . . .’. The reported delays in receiving treatment support larger scale research findings 639
L. H. McKenzie
(Chen 1999). Respondents noted delays due to GPs failing to identify a mental illness, relating symptoms, instead, to behaviour associated with their adolescent age group (a phenomenon also identified by Addington et al. 2002, McCann & Clark 2003). This finding adds weight to the suggestion that the education of those most likely to be in contact with people showing early signs of psychosis is vital for timely recognition and intervention for people suffering from the illness. This should include GPs who, research shows, are most likely to be the first point of call for those seeking help regarding psychotic symptoms (Lincoln et al. 1998).
Conclusion The results of this local survey corroborate with larger study conclusions that show the need for the provision of appropriate enabling resources and an early approach to the treatment of people with psychosis. The information that this survey provided is currently being used in the modernization and improvement of psychosis services of the NHS trust, incorporating improved pathways to care and the provision of an appropriate range of services (including an early intervention approach and psychosocial interventions) which are non-stigmatizing and are local and accessible to both service users and their carers.
References Addington J., van Mastrigt S., Hutchinson J. & Addington D. (2002) Pathways to care: help seeking behaviour in first episode psychosis. Acta Psychiatrica Scandinavica 106, 358– 364. Altamura A.C., Bassetti R., Bignotti S., Pioli R. & Mundo E. (2003) Clinical variables related to suicide attempts in schizophrenic patients: a retrospective study. Schizophrenia Research 60, 47–55. Baguley I., Butterworth A., Fahy K., Haddock G., Lancashire S. & Tarrier N. (2000) Bringing into clinical practice skills shown to be effective in research settings: a follow-up of the ‘Thorn’ training in psychosocial family interventions for psychosis. In: Psychosis: Psychological Approaches and their Effectiveness (eds Martindale, B., Bateman, A., Crowe, M. et al.), pp. 96– 119. Royal College of Psychiatrists, London. Birchwood M., Todd P. & Jackson C. (1998) Early intervention in psychosis. The Critical Period Hypothesis British Journal of Psychiatry 172 (Suppl. 33), 53–59. Chen E.Y.H. (1999) Early intervention in schizophrenia patients – rationale for its implementation and practice. Hong Kong Medical Journal 5, 57–62. Department of Health (DoH) (1999) Modern Standards and Service Models; Mental Health National Service Framework . HMSO, London. Department of Health (DoH) (2000) The NHS Plan. HMSO, London.
640
Department of Health (DoH) (2001) Mental Health National Service Framework Policy Implementation Guide . HMSO, London. Etheridge K., Yarrow L. & Peet M. (2004) Pathways to care in first episode psychosis. Journal of Psychiatric and Mental Health Nursing 11, 125–128. Fowler D., Garety P. & Kuipers E. (1998) Cognitive therapy for psychosis: formulation, treatment, effects and service implications. Journal of Mental Health 7, 123–133. Gilbert M., Miller K., Berk L., Ho V. & Castle D. (2003) Scope for psychosocial treatments in psychosis: an overview of collaborative therapy. Australasian Psychiatry 11, 220– 224. Groom G., Hickie I. & Davenport T. (2003) Out of Hospital, Out of Mind. A report detailing mental health services in Australia in 2002 and community priorities for National Mental Health Policy for 2003–2008. Mental Health Council of Australia, Deakin West. Hafner H., Maurer K., Ruhrmann S., Bechdolf A., Klosterkotter J., Wagner M., Maier W., Bottleneder R., Moller H.J., Gaebel W. & Wolwer W. (2004) Early detection and secondary prevention of psychosis: facts and visions. European Archives of Psychiatry and Clinical Neuroscience 254, 117–128. Hamilton Wilson J.E., Hobbs H. & Archie S. (2005) The right stuff for early intervention in psychosis. Journal of Psychosocial Nursing and Mental Health Services 43, 22–28. Johannessen J.O. (2001) Early recognition: the key to success in the treatment of schizophrenia? Disease Management and Health Outcomes 9, 317–327. Jones M. (2002) Cognitive-behavioural therapy for psychosis: implications for the way that psychosis is managed within community mental health teams. Journal of Mental Health 11, 595– 603. Lincoln C., Harrigan S. & McGorry P.D. (1998) Understanding the topography of the early psychosis pathways – An opportunity to reduce delays in treatment. British Journal of Psychiatry 172 (Suppl. 33), 21–25. McCann T.V. & Clark E. (2003) A grounded theory study of the role that nurses play in increasing clients’ willingness to access community mental health services. Australian and New Zealand Journal of Ophthalmology 12, 279–287. McGlashan T.H. (2001) Psychosis treatment prior to psychosis onset: ethical issues. Schizophrenia Research 51, 47–54. McGorry P.D. & Yung A.R. (2003) Early intervention in psychosis: an overdue reform. Australian and New Zealand Journal of Psychiatry 37, 393–398. Norman R.M.G., Malla A.K., Verdi M.B., Hassall L.D. & Fazekas C. (2004) Understanding delay in treatment for first episode psychosis. Psychological Medicine 34, 255–266. O’Toole M.S., Ohlsen R.I., Taylor T.M., Purvis R., Walters J. & Pilowsky L.S. (2004) Treating first episode psychosis – the service users’ perspective: a focus group evaluation. Journal of Psychiatric and Mental Health Nursing 11, 319–326. Pelosi A. & Birchwood M. (2003) Is early intervention for psychosis a waste of valuable resources? British Journal of Psychiatry 182, 196–198. Tarrier N. & Bobes J. (2000) The importance of psychosocial interventions and patient involvement in the treatment of schizophrenia. International Journal of Psychiatry in Clinical Practice 4 (Suppl. 1), 35–51.
© 2006 The Author. Journal compilation © 2006 Blackwell Publishing Ltd
