A service user-led report suggests that services provided under the 2008 Care Programme Approach often lack the flexibility required to work with service users’ own understanding of their experiences and recovery. Fabio Zucchelli reports.
Since its inception more than two decades ago when the emphasis on mental health care shifted from long-stay inpatient services to community-based treatment, the Care Programme Approach (CPA) has become a well-established framework for providing multidisciplinary, multi-agency care to people using services. But its application has been narrowed since its second modification in 2008, with only those using a wide range of mental health services or deemed to be at high risk now coming under the CPA.
With the growing emergence of the recovery model in the UK, which holds that service users’ experiences and their own conceptualisations of recovery should guide the care they receive and hence service evaluation, the question of just how well the 2008 CPA’s implementation truly meets service users’ needs appeared worthy of investigation.
To this end, the Mental Health Foundation commissioned a research study to address this question, which was funded by the London Development Centre/National Mental Health Development Unit. The resulting report, Service Users’ Experience of Recovery Under the 2008 Care Programme Approach, was published in February.
The project was service user-led, conducted by Dorothy Gould, an independent service user consultant, in partnership with Sarah Yiannoullou, managing director of the National Survivor User Network. This provided a different perspective from the likes of the professional-led Care Quality Commission patient satisfaction reports of 2011 and 2012, which Gould says is critical to revealing the full picture of mental health care: “There is a level of acknowledgement of experience that you hold that others don’t because you have directly used services. So it is a really important insight to bring in.”
Carried out between September 2011 and February 2012, the study gathered the views of adult service users living in London with personal experience of the 2008 CPA. Eighty-one participants completed questionnaires specifically designed for the project and in all 22 participants attended four focus groups.
The trends emerging from the report suggest, in the words of Dr Sarah Carr, senior research analyst at the Social Care Institute for Excellence, that “a system which too often defines people by their diagnosis and medication finds it difficult to recognise the whole person and the unique individual.”
Service users held a range of conceptualisations of recovery, not all necessarily compatible with the medical model. Accordingly, nearly 90% of participants reported in the questionnaire that it was important for professionals to acknowledge that there were more ways of explaining their difficulties than just psychiatric diagnoses. A number of focus group members felt this wasn’t happening during their care under the CPA.
“The fundamental thing that runs throughout the report is the fact that unless people who use services can define recovery as they themselves understand it, then a lot seems to go wrong from there,” Gould says.
The problems Gould refers to include the finding that service users’ experiences under the CPA varied according to demographic differences, with those from African and Caribbean communities as well as women across all ethnic backgrounds reporting less positive experiences than the overall group.
African and Caribbean participants attributed this to various factors including racial stereotypes, racist treatment and the inability of professionals to work with their perceptions of mental health difficulties.
“Despite everything that has been written and researched about [the negative experience of African and Caribbean people compared to the overall population], the fact that this was coming up once again just felt really concerning,” Gould says.
Meanwhile, women’s experiences under the CPA need further investigation, Gould admits: “There’s not a lot of research on how women are faring in mental health services generally, so I would be very keen to follow up this angle.”
Focus on risk
Feedback on issues relating to risk was mixed. A little more than half of those who responded to the questionnaire said they were satisfied with professionals focusing on risk a lot of the time. In contrast, most focus group members thought that focusing on risk in their care plans was unhelpful.
One concerning issue that arose in the focus groups was that people weren’t always aware of whether they had had a risk assessment or not, which suggests the guidance for the 2008 CPA is not always being followed, as it stresses the importance of carrying out risk assessments in collaboration with service users.
With tighter criteria for receiving support under the CPA since 2008, there is likely to be a greater proportion of service users under it who have been or may be detained under the Mental Health Act (MHA) (2007). Most participants felt that there exists a fundamental conflict between their understanding of recovery and the compulsory powers of the MHA.
It also emerged through the questionnaire that those who had been sectioned since 2008 gave less favourable responses to more than half the questions. For example, six out of 21 felt the focus on risk in their care plan was never balanced or in proportion.
Another issue that the report highlighted came in regard to the side effects of medication. Gould notes that: “What came out very strongly was that whatever people’s position on medication, there were major concerns about side effects. My concern was the fact that, having looked carefully through recent documentation [eg. Government’s 2011 mental health strategy, No Health without Mental Health], there’s very little acknowledgement of that. Ours was only a small study but this concern was so unanimous in the focus groups.”
Gould highlights in the report, too, that the 2008 CPA policy and practice guidance itself only makes brief mention of the need to review and assess medication in the light of ‘intolerable’ side effects.
While the overall findings of the report raised on-going concerns about service users’ experience under the 2008 CPA, Gould emphasises that: “there have been clear examples of hugely encouraging good practice in the study… from professionals who are genuine, are working in a very warm, sensitive, empathic kind of way,” and that this good practice should always be acknowledged and highlighted.
Unfortunately though, the report says that the service users’ feedback suggests ‘there is also a considerable way to go before such practice becomes the norm’.
Based on the participants’ feedback, a checklist was compiled of good practice ‘pointers’ for mental health professionals working with service users under the CPA. Gould describes the applicability of the checklist: “It could be used within teams as well as on training courses in organisations… It would be particularly great to think that people will use the checklist, not as yet another piece of paper to tick off, but as something to keep in their minds as they go about their practice.”
The full checklist comprises 16 points, but Gould identifies the following as the most critical. Are you:
• Drawing on service users’ personal descriptions of recovery, as well as taking special account of recovery concepts that service users from particularly disadvantaged communities find meaningful and valid?
• Helping service users to find the ways of understanding mental distress that make most sense to them?
• Recognising that medical treatment is useful only insofar as it assists service users with leading lives that they find meaningful?
• Having adequate discussion with service users when medication is prescribed?
• Tackling any staff discrimination towards people with mental health problems, including any additional discrimination towards service users from marginalised communities?
• Helping service users to feel safe, whilst avoiding a focus on risk that they say is counterproductive to recovery?
• Addressing tensions between the use of compulsion under the Mental Health Act (2007) and the exercise of choice, control and citizen rights fundamental to most service users’ concepts of recovery?
Gould hopes to produce an outcome report based on feedback from organisations using the checklist in order to evaluate its impact. While the report highlights that the quality of services under the 2008 CPA is highly variable in terms of promoting recovery as defined by service users, it also shows that there are mental health professionals applying qualities valued by service users like compassion, respect and hopefulness and that by keeping sight of the principles outlined in the checklist, professionals can maximise the use of the CPA as a meaningful framework for service users’ recovery.
For more information on the report and the checklist, email Dorothy Gould at firstname.lastname@example.org.
Fabio Zucchelli is a freelance journalist