Who carried out the research?
The research was carried out by a team of researchers from three universities: City University London in England, and Cardiff and Swansea Universities in Wales. The team was led by Professor Alan Simpson at City University[i].
Service user and carer involvement:
Of the 13 researchers working directly on the study, six were involved in part time roles as service user researchers: one as co-applicant and the others to interview service users and carers. In addition, there was an advisory group of people with lived experience.
Who funded the research?
The National Institute for Health Research (NIHR) Health Services and Delivery Research Programme (HS&DR 11/2004/12)[ii]. This is a Government research funding body.
Why did we do the research?
Although there are two different systems in England and Wales, both mean that people receiving mental health services should have a care coordinator, a written care plan and regular reviews of their care. With the introduction of the recovery approach and personalisation, it is now expected that care planning and coordination should be recovery-focused and that people will be taking more control over their own support and treatment.
What were the aims of the research?
We wanted to find out what helps and what hinders care planning for people with mental health problems to be collaborative, personalised and recovery-focused.
By collaborative we mean that care planning is completed in partnership with the service user: the care coordinator works with the service user to plan their care.
By personalised we mean that care is designed with the full involvement of the service user and designed to meet their individual needs.
By recovery, we mean ‘a personal journey … one that may involve developing hope, a secure base and supportive relationships, being more in control of your life and care, social inclusion, how you develop coping skills, and self-management … often despite still having symptoms of mental illness.’[iii]
Where was the research carried out?
The research was carried out in six NHS mental health service provider organisations: four in England and two in Wales. One of the reasons for carrying out the research in both England and Wales is that Wales has a legal framework in place called the Mental Health Measure, introduced in 2010. This is intended to ensure that where mental health services are delivered, they focus more appropriately on people’s individual needs. In England, care planning is informed by guidance and is not legally required.
What did we do?
The focus of our research was on community mental health care. We wanted to find out the views and experiences of all of the different people involved: care coordinators (in community mental health teams), managers, senior practitioners, service users and their carers.
- We carried out an extensive literature review.
- We sent out questionnaires to large numbers of people, and received replies from service users (449) and care coordinators (205); these included questions on recovery, therapeutic relationships, and empowerment.
- We interviewed senior managers (12) and senior practitioners (27), care coordinators (28), service users (33) and carers (17).
- We reviewed 33 care plans with the permission of the service users concerned.
What did we find?
Summary of the survey findings:
- There were no major differences between the six sites on the empowerment or recovery scores on the service user questionnaires;
- There were some significant differences between the sites on therapeutic relationships: where there was good collaboration and input from clinicians, relationships were rated as more therapeutic;
- We also found significant differences between sites on some recovery scores for the care coordinators: where they saw a greater range of treatment options, the service was rated as more recovery-focused;
- We found a strong positive correlation between scores on the recovery scale and the therapeutic relationship scale for service users; this suggests that organisations perceived to be more recovery-focused were also perceived as having more therapeutic relationships.
Summary of the interview findings:
Some common themes across sites…
- Austerity and re-structuring: Cuts and merging of services, increased workloads, integration of health and social care services, refocusing of services, increased use of voluntary services;
- Bureaucratic factors: Administrative burden, inflexible computer systems, unwieldy documentation, little training in coordinator role/recovery approaches, high caseloads preventing recovery-oriented work;
- Contradictory policies: Some policy developments appeared to go against a recovery focus (e.g. Payment by Results, Community Treatment Orders); whereas others supported the recovery-focus (e.g. personal budgets);
- There were varied experiences of care planning from the perspectives of service users, carers and care coordinators within and across all six sites with no distinct reasons for these variations identified.
- There is a tension between the standardisation of documentation and the ability for the care planning approach to focus on the individual’s needs.
Care Planning:
- Overall, there were major challenges in trying to make care planning and coordination meet the different needs of service users, practitioners, managers and commissioners;
- Care plans were seen as largely irrelevant by most service users who rarely consult them;
- Care coordinators regarded care plans as a useful record but also an inflexible administrative burden that restricts time spent with service users. Once written, they rarely consulted them.
Care planning and therapeutic relationships:
- Service users value their conversations and relationships with care coordinators more than they do care plans;
- Relationships with care coordinators, support workers, family and other carers are seen as far more important to recovery.
Risk and safety
- Risk is a very significant concern for managers and clinicians. However, it did not appear to be openly discussed with service users (or carers); they were often unaware that risk assessments had taken place;
- This appears to limit the involvement of service users (and carers) in exploring and managing their own safety, and prevents positive risk-taking from becoming a part of people’s recovery.
Recovery and personalisation
- We found great variation in understandings of recovery and personalisation, both within and across sites and within groups of staff, service users and carers.
Conclusions
- Positive therapeutic relationships appear to be the most important factor in helping care planning and care coordination to be personalised and recovery-focused;
- Excessive administrative tasks and inflexible information technology should be addressed in order to increase the time staff can spend with service users and carers;
- Everyone involved needs to have a shared understanding of the ideas behind recovery and personalisation, developed in partnership with service users, carers, and frontline practitioners;
- Training may not be enough to bring about the necessary changes without also addressing the wider political and organisational issues.
We recommend research to investigate new ways of working and training to increase staff contact time with service users and carers and to improve a focus on recovery.
For further information:
Please contact: Professor Alan Simpson: a.simpson@city.ac.uk
[i] This is an accessible summary of the findings from a research study, “Cross-national comparative mixed methods case study of recovery-focused mental health care planning and coordination: Collaborative Care Planning Project (COCAPP)’, by Alan Simpson, Ben Hannigan, Michael Coffey, Aled Jones, Sally Barlow, Rachel Cohen, Jitka Všetečková, and Alison Faulkner.
[ii] This paper summarises research funded by the National Institute for Health Research Health Services and Delivery Research Programme (HS&DR 11/ 2004/12). The views and opinions expressed therein are those of the authors and do not necessarily reflect those of the HS&DR Programme, NIHR, NHS or the Department of Health.
[iii] Anthony WA (1993) Recovery from mental illness: the guiding vision of the mental health service system in the 1990s. Psychiatric Rehabilitation Journal, 16(4), 11-23.
