VOL: 102, ISSUE: 17, PAGE NO: 32
Nathan Gregory, MSc, BSc, RMN, is acting specialist services manager and team leader, Gloucester Assertive Community Treatment Team, Gloucestershire Partnership NHS Trust
Caroline Collins-Atkins, MSc, BSc, RMN, is acting team leader and clinical case manager, Gloucester Assertive Community Treatment Team, Gloucestershire Partnership NHS Trust;Rob Macpherson, is consultant psychiatrist, Gloucestershire Partnership NHS Trust;Sue Ford is carer, Burleigh House, Nettleton Road, Gloucester;Angela Palmer is carer, Burleigh House, Nettleton Road, Gloucester
Aim: To assess all carers in the Gloucester Assertive Community Treatment Team and identify their needs.
Method: Carers were identified using the definition employed in the National Service Framework for Mental Health (DH, 1999): they were family or close friends who spent a minimum of 12 hours per week helping/supporting the service user. Paid carers were excluded. A standardised carer’s assessment that had been developed as part of the care programme approach (CPA) was used to evaluate the needs of carers.
Results: The study highlights the type of support that carers give those who use the mental health services and reveals the impact that this caring has on them. The carers’ needs are identified as: someone to talk to; help with cleaning/ironing; help with finances; support to enable them to take a break; plus respite care and accommodation for the service user.
Conclusion: Carers play an important role in supporting people who are diagnosed with severe mental illness although further research is necessary to consider the benefits of a closer relationship between the carer, service user and mental health professionals.
There is well-documented evidence to show that being a carer impacts on physical and mental health as well as presenting financial difficulties. Carers are entitled to an assessment of need and should be able to access services independently of the service user they care for. However, this is not common practice. Gloucester Assertive Community Treatment Team wanted to ensure that all carers in their area were assessed. This study shows the results of the assessments and identifies the needs of carers for people who use the mental health services.
The 2001 census indicates that there are six million carers in the UK (National Statistics, 2003). This informal care is estimated to be worth £57bn a year, identical to the current NHS budget (Carers UK, 2005), with 1.5 million of these carers supporting relatives with mental health problems. Over the last decade the requirement to assess carers’ needs and offer support has been recognised in a range of health and social care policies, with legislation passed giving carers new rights. However, despite this legislation, it is suggested that most carers are not having their needs assessed and are unaware of the support services that are available to them (Carers UK, 2003).
The Community Care Act (Department of Health, 1990) was the first UK policy initiative to acknowledge the need to recognise and support carers. This was followed by the 1995 Carers Act and the 2000 Carers and Disabled Children Act, which gave carers new rights. This legislation stated that carers are entitled to an assessment of need and should be able to access services independently of the service user. Within mental health services, standard six of the National Service Framework for Mental Health encouraged the involvement of carers and service users in decisions about care (DH, 1999), recommending that carers’ assessments are linked to the Care Programme Approach (DH, 1990). Various research studies have reported benefits when carers were involved in care planning, suggesting such involvement to be a means of building strong links between local services and carers (Bainbridge, 2000).
Despite the evidence and new legislative structures to encourage carers’ assessments, it appears that this is not common practice. For example, in a postal survey of 10,000 carers in England, Carers UK (2005) reported that only 32% of respondents had received a carer’s assessment, while a study within a community mental health team reported a lower figure of 7% (Krupnik et al, 2005). These figures are of concern as studies indicate that most people with a diagnosis of schizophrenia living with their family remain significantly disabled by their illness (Mei-Chih, 1999), while their carers experience ongoing distress (Magorrian, 2001).
Other authors have explored the problems experienced by carers, the most common being lack of sleep (Loukissa, 1995).
Gaynor (1990) further identified physical problems such as high blood pressure and fatigue. In a similar study of 69 primary carers it was found that 59% of the sample reported physical health problems, with a negative impact on the whole family (Provenchers, 1996).
Financial difficulties are also a major concern for carers, as the service user is unlikely to work because of illness and family carers often have to take time off from work. In a study of primary carers of people with severe mental illness, Reinhard (1994) identified the main burdens as limits on family members’ activities, family friction and disruption to household routine. Francell et al (1998) also found that families experience great difficulty within mental health services in relation to crisis situations, obtaining adequate community resources and communicating with professionals.
We wanted to ensure that all carers in the Gloucester Assertive Community Treatment Team were assessed using a standardised care programme approach to carer assessment. This study shows the results of the assessments and identifies the needs of carers for people who use the mental health services.
Subjects and methods
The study was carried out in Gloucester City, which has a population of approximately 150,000. Mental health care is provided by Gloucestershire Partnership NHS Trust and the multidisciplinary Gloucester Assertive Community Treatment Team delivers a service to 75 severely mentally ill service users in the city (Gregory and Hovey, 2005).
Carers were identified using the definition employed in the NSF for mental health (DH, 1999). This meant that they had to be family or close friends who spent a minimum of 12 hours per week helping/supporting the service user. Paid carers were excluded from the study. A standardised carer’s assessment that had been developed as part of the care programme approach was used to evaluate the needs of carers (Gloucestershire Partnership NHS Trust, 2003).
This identified what kind of help was provided, such as cooking, medication, financial, hygiene and emotional support; how their lives were affected by being a carer; and what help or problems were experienced in this role. The results were used to devise a care plan for the carer and analysed to undertake a grouped thematic analysis.
All 36 carers as identified by the NSF on the current Assertive Community Treatment Team caseload were asked to participate. A working party was also formed involving two carers, members of the Assertive Community Treatment Team, a carers participation worker, medical staff and the local research and development support unit.
The carers’ assessments were completed in April 2005 by care coordinators who were clinical case managers comprising four registered mental health nurses (45%), four social workers (45%) and an occupational therapist (10%).
Data was entered into SPSS (version 11.5) for analysis and descriptive statistics were presented to describe the results of the carers’ assessments. Data from the carers’ assessments was subjected to a qualitative thematic analysis.
The study received approval from Gloucestershire Partnership NHS Trust and the local research ethics committee prior to initiation.
From the original 36 carers identified by using the NSF criteria, 28 (78%) participated in a formal carer’s assessment. Theses were made up of:
- Parents - 22 (79%);
- Partners - 2 (7%);
- Siblings - 2 (7%);
- Friends - 2 (7%).
Table 1 (p33) shows the ways in which carers offer their support. All the participants stated that they provide emotional support and 64% stated that they provide help with daily activities such as cooking, transport and laundry.
Table 2 (p33) shows the impact that the caring role has on the carers and how this role has restricted their lives, with many unable to spend time away from home or even take regular breaks.
Table 3 shows what the carers have had to give up due to their role as carer.
Table 4 shows the types of problems encountered by carers.
Many carers made poignant and heart-felt comments about their caring role. These could not easily be captured as tabulated results and describe in a fuller and more direct manner the support they were giving. Examples included:
‘If it wasn’t for me he would be in a nursing home.’
‘We do everything; we are his only source of social contact. We look after his physical needs.’
‘Whenever he cannot sleep I stay up with him. I drive him around.’
The carers described problems such as:
‘We get run down. We can’t live the way we want to live. We are always stuck in the house. I get depression and my husband gets run down.’
‘Worry about son’s condition. Stress due to his behaviour when he is at home, extreme stress when he shows unpredictable behaviour and becomes aggressive.’
Although all of the carers stated that they received help from members of the Assertive Community Treatment Team, they did not specify the type of support received. Some individuals also received support from their home help, their church, the ‘cared for’ person’s landlord/supported lodgings or the local social services ‘buddy’ scheme (Table 5).
Some family carers stated that the service user’s siblings had been adversely affected, feeling that achievements had been overshadowed and their personal relationships may have suffered. There were 41% of carers who reported working either full-time or part-time, and some of these individuals also undertake charity or voluntary work. Table 6 shows the type of help carers reported they require.
The responses and data collected from the carers’ assessments produced rich and varied qualitative data. However, although the findings presented in this study are representative of the carers in the Gloucester Assertive Community Treatment Team (due to the high response rate), the results should be treated with some caution. The sample size was small and it is therefore unclear whether these results can necessarily be generalised to other Assertive Community Treatment teams or community mental health teams.
In the Gloucester carers population, carers had commonly given up a career, financial independence, freedom and a social life, findings that were replicated in other studies (Carers UK, 2005). Carers also stated that siblings had been adversely affected, supporting Mei-Chih’s discovery (1999) that siblings may experience feelings of guilt or anger and may also be subjected to violence from their mentally ill brother or sister. In our study, unpredictable/aggressive behaviour was one of the main problems carers faced.
A large number of carers were not aware of the services available to them such as carers groups, support with carers’ rights, crisis support or other available supports. Similarly, Carers UK (2003) and Ferriter and Huband (2003) have reported that carers have difficulty obtaining information about their relative’s mental illness and what to expect from the available services.
Although professionals sometimes need to carefully balance the service user’s right to privacy against the needs of carers, our results suggest that a more common difficulty is a lack of a real relationship with carers that may facilitate psycho-education and support for poorly informed, isolated and stressed carers.
Carers UK (2003) argues that services should view carers as expert partners who can assist professionals in delivering care to service users. This view is supported by Shooter (2004), who advocates advance directives as a means of ensuring that carers’ views are taken into consideration to inform the professional and service user relationship. Certainly, the process of involving carers in this study has had a positive influence on the relationship between carers and mental health services.
It is planned to create a carers group in conjunction with a recently appointed carer support worker to address needs identified in the carers’ assessments.
Carers play an important role in supporting those with severe mental illness and we believe that it is important to formally assess carers’ needs in their own right, as this will help to support them in their role and also strengthen their alliance with mental health professionals.
It is anticipated that the results of this study will stimulate interest into the needs and experiences of carers, with further research necessary to consider the benefits of a closer relationship between the carer, service user and mental health professionals.
- This article has been double-blind peer-reviewed.
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