Value of Service User Involvement in Mental Health Care

There is increasing emphasis on the need for the NHS to withdraw from a paternalistic approach to healthcare and adopt a patient centred approach. Like any service, it is vital that one is assured of the excellence of the facility before committing to utilising it. Obtaining viewpoints from different users, based on different experiences, can help to improve mental health care and aid expansion of the limited understanding of certain psychological conditions. It is therefore necessary to review the literature surrounding this area and ascertain the value of user involvement in mental health care.

Although a service ‘user’ is most commonly seen as a patient requiring treatment, that patient is also somebody who has endured the rigorous procedure of mental health treatment, and is equipped with knowledge necessary to aid improvement of the system for further practice. For the purposes of this review, ‘user’ will refer to any mental health patient who utilises mental health services for treatment purposes. It is important to define what the term ‘involvement’ refers to. Throughout this paper, ‘involvement’ will refer to the participation of any named user in the process of service improvement, namely for mental health care. This review endeavours to highlight benefits of user involvement in mental health care and identify some methods of and barriers to involvement, as well as suggest methods to overcome these.

Two main databases – Medline and PsycInfo – were searched to find the articles discussed in this review. An initial search returned considerably large numbers of articles; results were then refined to obtain those most relevant to the review title. Studies published previous to the year 2001 were excluded from search results in line with the introduction of the ‘Health and Social Care Act 2001′, and a limit for ‘English language only’ was placed. Additional papers were located through citation tracking.

The need for user involvement in mental health

The government has placed a large emphasis on the importance of user involvement, and the introduction of the ‘Health and Social Care Act 2001′ has reinforced the duty of health care professionals to consider views of service users when developing new treatments (Great Britain. Health and Social Care Act 2001). It is unfortunate that in today’s society many assume that mental health patients cannot play as active a role in improving healthcare as patients suffering from other physical illnesses. The stigma associated with this area can result in a patient’s opinion being waived, with the often incorrect reasoning that they lack capacity to form a valid opinion. Mental health is a sensitive branch of medicine, and patients undergoing psychiatric treatment spend more time in hospitals and are far more dependent than other patients. It is therefore vital that their needs are ascertained and addressed in order to maximise comfort.

‘Tait and Lester’ (2005) identified in their literature review that consumers are becoming increasingly aware of the opportunities available to them, and can easily access information via the internet. Legislation states that users must play a significant role in healthcare decision making, but it stands unclear to what extent this is implemented in the field of mental health.

Hansen et al (2004) investigated the agreement of opinions of patients and health care workers with regards to decision making and treatment. They found that, out of 40 possible user care needs, individual healthcare workers and teams identified 9.3 and 10.3 needs respectively. Upon conflicting viewpoints between patients and healthcare workers, teams sided with healthcare workers, indicating that patient views may be under-represented in daily practice. Conversely, patients identified only 4.3 needs, perhaps signifying they are not fully aware of their underlying needs. It is important to consider the inclusion criteria of this study – all participants were adults with a psychiatric illness and a ‘significant functional impairment’. This presents the dilemma of assessing the degree to which a patients’ cognitive ability affects perception of needs. Patients whose opinions were not sided with were often those with severe cognitive problems, therefore their views may have been overridden for their own benefit. Healthcare workers need to achieve a balance between exercising expertise and valuing insight of user experience. It is important to note that this study only represents the Norwegian care system and the participants selected were those well enough to participate. Those with more severe conditions may therefore be under-represented, reducing the internal validity of this study.

Methods of user involvement

Mental health service consumers unite to form ‘user groups’ – non-profit organisations aiming to ensure the views of consumers are addressed when looking to improve services. Representatives from these groups participate in different areas of service improvement.

Crawford et al (2003) found that 11 out of 17 UK trusts involved in a cross-sectional study of user involvement methods were able to list numerous changes resulting from user involvement. This study found 9 out of 17 trusts had user representatives attending service development meetings, and 7 out of 17 had users present at clinical governance meetings. Representatives were less likely to attend meetings examining complaints or discussing drugs and therapeutics. The same study found satisfaction surveys and participation in audits among the most common methods of involvement. Surprisingly only 1 out of the 17 trusts involved users in staff training evaluation programmes, despite that this action is recommended by the national guidelines for user involvement. This study was conducted in Greater London only and may consequently lack external validity, as different methods of user involvement may be utilised in different areas. All participants belonged to a user group, and may therefore be more comfortable with their mental illness and with promoting user involvement. The study also reported “more than half of trusts feel that ethnic minority service users are insufficiently represented”. This is a disadvantage of assessing involvement of user groups as a whole, and may indicate that trusts as of yet are far from accounting for cultural differences.

A focus group study by Lester et al (2006) highlighted the importance of patient involvement in primary care mental health. Three themes emerged from their research as fundamental for appreciating user involvement: ‘the value of lived experience’, ‘decision-making in the consultation’ and ‘the importance of paid work’. One patient stated, “The things, the experiences, the emotions, the feelings that we as people suffering from mental distress go through simply aren’t experienced by people in good health”. From this a collaborative view emerged that users could partake in running patient-led centres where, alongside providing information on alternative treatments and coping methods, a form of peer support would be provided for patients. Users stated that they did not feel involved in treatment, with a short consultation followed by a GP prescribing medication. They felt unable to challenge the GP for fear of lacking medical knowledg