Research findings have consistently found that service users are not involved in care planning, despite mental health policy that advocates a collaborative process and evidence that involvement facilitates recovery (Department of Health, 2011; Department of Health, 2008; Bee et al, 2015b).
Furthermore, there is a knowledge gap between what the authors describe as the ‘more nebulous ‘top-down” concepts of user involvement as advocated in policy documents, and the potential for service users to exert influence at the individual care planning level. It is this gap that the research reported here by Grundy et al (2016) aimed to address: what does ‘user-involved’ care planning look like?
The study is one part of a bigger programme of research looking at service user involvement in mental health care planning (EQUIP). This paper reports on the findings from focus groups and interviews with service users; other papers produced by the team report on professional (Bee et al, 2015a) and carer (Cree et al, 2015) perspectives.
The aims of the study were:
- To understand involvement in care planning from the service user perspective;
- To explore how meaningful involvement could be integrated into the care planning process; and
- To explore the role and influence of individuals, teams and organisational factors in ensuring service user involvement in care planning.
Qualitative methods were used, reflecting the need to explore people’s views and experiences. The researchers carried out five focus groups (reaching a total of 27 service users) and 23 individual interviews, reaching a total of 42 service users. Participants were recruited via two NHS Mental Health Trusts in the North West and Central England. Participants were aged 18 or over with current or recent involvement with secondary mental health services in the two host Trusts.
Both focus groups and interviews were recorded and transcribed prior to analysis which followed the well-known framework approach for analysis of qualitative data (Ritchie and Spencer, 1994). The team followed a rigorous approach to analysis, which included five researchers (one carer and two service users) reading transcripts prior to meeting to agree a coding framework. This framework was amended in consultation as the reading of new transcripts necessitated new codes.
Analysis revealed a clear distinction between service user views of a care plan as a tangible, written document and care planning as a process through which this document is produced. In total, the team identified 10 elements which they named the 10Cs of user-involved care planning, for reasons that will become clear. Participants perceived there to be separate service user and professional or service-based elements to involvement in care planning. These are categorised by the authors into Procedural and Agent-centred elements.
- Establishing a Connection: the early establishment of a relationship based on trust, respect and communication was seen to be essential to the success of user-involved care planning.
- Demonstrating the service user’s Contribution: the importance of being recognised as having an active role in the care planning process, e.g. having the space to write the care plan in their own words.
- Ensuring Currency: the care plan needs to be both relevant and up-to-date.
- Consolidating care: the care plan needs to promote an integrated, recovery-focused approach to care – to include factors such as employment, benefits, education and physical health.
- Instilling Consequence: to be meaningful and to encourage further service user involvement and engagement, the care plan should have real consequences for practice.
- Capacity: the recognition that service users might not always be able to engage in the care planning process, needing some degree of flexibility on the part of professionals in responding to this.
- Confidence: self-confidence was seen as critical to effective involvement in care planning. This includes acknowledging the power differential between service users and professionals, leaving the former unable to fully assert their views. Independent advocacy was seen as a means of addressing this as well as a genuine ability to listen on the part of professionals.
- Consultation: professionals need to take proactive steps to facilitate service user involvement in care planning; often service users are not aware that the opportunity is there for them to contribute.
- Choice: there is a need for greater and improved information about legal rights and treatment options; without an awareness of the range and scope of services available to service users, meaningful involvement was not deemed possible.
- Clarity: open and transparent communication is needed in order to make meaningful involvement in care planning a reality.
The paper claims to be ‘one of the first to provide a clear framework for service quality improvement’: the 10Cs of care planning – ten criteria identified by service users as essential for meaningful service user involvement in care planning.
Key messages for practice are that professionals need to engage with, explain and involve service users throughout the whole process of care planning. It probably comes as no surprise that meaningful relationships are key to successful involvement, and the findings explore this aspect in some depth. There are some tangible suggestions for improving the documentation: including keyworker contacts and dates of reviews would make it more meaningful to service users. Service users want the care plan to go beyond being a record of clinical decisions and include aspects of their lives in which they need support, such as housing, employment and benefits.
Strengths and limitations
The study is – whilst small – a good, solid exploration of service users’ priorities for care planning, many of which are supported by the service user-led study by Gould (2013) – also a qualitative study. My first impression on reading the paper was some scepticism about the team managing to fit their findings into a set of words beginning with the same letter – and these terms do take a bit of unpacking. Some of the language is not very accessible as a result; for example, the use of the terms ‘currency’ and ‘consolidating’ come over as somewhat forced. Another minor point about language is that ‘service users’ are referred to as ‘users’ throughout, which grated. We will never agree on language in mental health, and few people like to call themselves ‘service users’ but it seems more accurate and preferable to the abbreviated form.
One of the limitations of the study is pointed out by the authors themselves who state somewhat baldly ‘We did not interview anyone from Black and Minority Ethnic communities‘. One has to wonder why this is, when service users were recruited from Trusts which must both have substantial numbers of BME service users, and a purposive sample is reported to have been used. Purposive sampling means selecting participants based on the knowledge of a population and the purpose of the study. So, in a small sample, you ensure that you have enough people from particular minority backgrounds to make their contribution to the study meaningful. Given the overrepresentation of certain BME communities in mental health services (African and African Caribbean people in particular), it would seem an oversight not to have ensured they were included in the sample for a study of this kind.
The second limitation is the absence of any discussion of risk or safety. In a study on care planning, where many people have said that the process is dominated by professional concerns about risk (and risk to others predominantly), it is strange that it hasn’t arisen here. However, there is also evidence (e.g. from the COCAPP study: Simpson et al, 2016) that professionals are not having conversations about risk with service users. Instead, they are often making judgments behind closed doors for fear of confronting people. It almost looks as if this is an issue for the research team in this case, as it does not appear that the question was asked. Equally we might conclude that risk is not a priority for service users in the care planning process and hence they did not raise it, but it is strange that it is not mentioned at all.
Finally – and a broader point that links with so much that is said and written about mental health care and mental health research – the findings support the notion that service users are seeking something more from their care than that which represents a solely biomedical understanding of mental health: predominantly medication. The significance of trusting relationships and the plea for a care plan that includes a holistic approach and support with aspects of living such as employment, benefits, education and physical health are symbolic of a broader understanding of mental health than that which they encounter when they enter mental health services. These are not new observations; far from it. But they continue to be ignored by a system in thrall to the science of psychiatry and a biomedical understanding of mental distress.
A good, interesting paper with a new framework for looking at service user involvement in care planning, with practical suggestions for making the care plan more useful to service users.
Grundy AC, Bee P, Meade O, Callaghan P, Beatty S, Olleveant N, Lovell K. (2016) Bringing meaning to user involvement in mental health care planning: a qualitative exploration of service user perspectives. Journal of Psychiatric and Mental Health Nursing, 23: 12–21. doi: 10.1111/jpm.12275
Bee P, Brooks H, Fraser C, Lovell K. (2015a) Professional perspectives on service user and carer involvement in mental health care planning: a qualitative study. International Journal of Nursing Studies Volume 52, Issue 12, Pages 1834–1845.
Bee P, Price O, Baker J, Lovell K. (2015b) Systematic synthesis of barriers and facilitators to service user-led care planning. The British Journal of Psychiatry Aug 2015, 207 (2) 104-114; DOI: 10.1192/bjp.bp.114.152447
Department of Health (2008) Refocusing the Care Programme Approach: Policy and Positive Practice Guidance (PDF). Department of Health, London.
Department of Health (2011) No Health without Mental Health: A Cross-Government Mental Health Outcomes Strategy for People of All Ages (PDF). Department of Health, London.
Gould, D. (2013) Service Users’ Experiences of Recovery under the 2008 Care Programme Approach (PDF). London: Mental Health Foundation/NSUN.
Carr S. (2013) User-led research asks if the 2008 Care Programme Approach supports mental health service user understandings of recovery. The Mental Elf, 3 May 2013 (Blog on Dorothy Gould’s report)