Why isn’t care planning happening in the NHS?

People with long-term conditions are being short-changed by the NHS. In January 2006, a government White Paper promised that they would be given the opportunity to shape their own care plans and successive governments have reconfirmed their commitment to this policy. Yet ten years on, only 1 in 20 say they were involved in a collaborative care planning process. What are they missing out on and why has there been so little progress?

Personalised care planning aims to ensure that individuals’ values and concerns shape the way long-term conditions are managed. Instead of focusing on a standard set of disease management processes determined by health professionals, this approach encourages patients to select treatment goals and to work with clinicians to determine their specific needs for treatment and support.

Clinicians and patients participate in a shared decision-making process focused on determining goals and priorities, agreeing realistic objectives, solving specific problems and identifying relevant sources of support. It involves a shift from reactive care (waiting for people to consult with symptoms) to a proactive approach in which patients are invited to attend specially scheduled consultations. Options considered may include community and peer support, as well as those provided by statutory services.

I was part of a group from the universities of Oxford and Aberdeen who carried out a Cochrane review to examine the effects of personalised care planning. We found that patients who were actively involved in goal setting and action planning had better outcomes in terms of physical health (better blood glucose levels, lower blood pressure, better control of asthma symptoms), less depression and improved confidence and skills for self-management. The quality of the 19 randomised controlled trials included in our systematic review was mixed and the effects they demonstrated were modest, but definitely beneficial. The process seems to work best when it includes preparation, record-sharing, care coordination and review, when support from health professionals is intensive and integrated into routine care.

So why isn’t it happening? Almost everyone agrees that care for people with long-term conditions needs to be more person-centred and better integrated. The problem is how best to achieve these dual goals; in particular how to keep a focus on both at the same time.

Much of the discussion on integrated care centres on innovations in organisational structures, budgets and multidisciplinary teams. These are professional concerns; patients are relegated to a secondary, largely passive role in these scenarios. Meanwhile, other groups engage in semantic debates about the precise meaning of person-centred care, while practical concerns about how to implement it attract less attention. These discussions take place in separate forums with little cross-fertilisation of ideas, yet the best way to integrate care is to organise it around the patient’s values and concerns. Personalised care planning is the key.

Some useful insight into what’s going wrong with implementing the policy can be gleaned from a process evaluation of the WISE trial. This large British trial was designed to engage patients, practitioners and organisations in a structured and personalised approach to care planning and self-management support, but it produced entirely negative results. It turned out that the intervention was not implemented as intended and outcomes did not improve, despite the fact that extensive guidance, training and information materials had been provided.

Why was this?

Practice staff saw care planning as a top-down, externally imposed strategy that did not square with their priorities. They felt they were already providing good care as judged by biomedical QOF indicators, so could see no tangible benefits for them. They had low expectations of what patients could achieve and did not see it as their job to provide self-management support. This attitude was absorbed by the patients who had similarly low expectations of what help they could expect from staff.

Also, shared decision-making was almost entirely absent and self-management support was not seen as part of the core business of primary care. Communication within practices was not changed, silo working practices persisted, practice-based leadership was weak and self-monitoring non-existent. These problems were compounded by the NHS reforms which swept away the PCT, whose managers had been enthusiastic about the project and were prepared to support it.

If care is to become both integrated and person-centred we will need a much more coherent approach to policy implementation. This must be based on a clear understanding of what needs to change, especially how staff view their roles and those of their patients. Incentives must be aligned at all levels, appropriate performance measures must be agreed and audited, leaders must be supported and innovations encouraged and properly funded. NHS patients deserve nothing less.

Angela is a Senior Research Scientist at the Health Services Research Unit in the Nuffield Department of Population Health, University of Oxford, www.twitter.com/acpatient

Further reading

For more on person-centred care, visit our resource centre.