Title: The National Evaluation of the Pilot Phase of the Expert Patients’ Programme – Final Report
Authors: Project team led by Anne Kennedy
Affiliations: National Primary Care Research and Development Centre
The Expert Patients’ Programme (EPP), launched by the Department of Health in 2001, is one of the first manifestations of the increasing focus on self-directed support. Based on a programme for chronic disease self-management developed in the US, it also reflects the increasing recognition of the needs of those with long-term conditions described in the 2005 National Service Framework for Long-Term Conditions.
The three-tier NHS and Social Care Model for long-term conditions recommends supported self care for the 70%-80% of individuals with such conditions estimated as being in the lowest tier. The EPP comprises a six-week self-care skills training course, delivered through PCTs by lay individuals who themselves have experience of living with a long-term condition.
This national evaluation by the National Primary Care Research and Development Centre of the initial implementation of the EPP adopted three main methods. First, a randomised controlled trial explored whether the course improved outcomes for individuals and whether it was cost-effective. Costs and outcomes for 629 individuals with a self-defined long-term condition were measured at six months, with half the group randomly allocated to the EPP and the rest to the waiting list. A key interest was in whether increased skills in self-management led to a reduction in use of health care facilities. Second, individuals’ experiences of the EPP training were explored in qualitative interviews, comparing personal self-management strategies and use of services before and after the programme. Finally, the process of implementing the EPP in local PCTs was evaluated.
The evaluation concluded that the EPP moderately increased patients’ effectiveness in self-care. The EPP had a relatively small impact on the energy that people reported, energy being considered the best measure for health status for people with a range of long-term conditions. There was no change in the use of health services (measured as the sum of GP consultations, practice nurse appointments, A&E attendances and outpatient visits), although overnight hospital stays and day care use were reduced.
The health economics analysis was based on quality-adjusted life years and suggested that being on the EPP course led to one extra week of “perfect health”. Health care costs were reduced but costs for individuals, such as for alternative therapies or special diets, increased. There were small gains in secondary outcomes, such as psychological well-being and partnerships with doctors.
Individuals reported high levels of satisfaction with the course and the experience of being in a group a spin-off may be less social isolation. The facilitation skills of the tutors were key, but there was some tension between delivering to the script and permitting group interaction. For most, however, their existing strategies of self-care were confirmed rather than new initiatives being introduced. This may have been a product of the participants being volunteers, and already likely to be well-informed. It should be noted that difficulties in recruitment to the EPP were reported, with many cancellation of courses, reduced numbers on courses and failure to attract hard-to-reach groups.
The authors of the evaluation suggest possible explanations for the failure of the EPP to reduce use of primary care and outpatient services. For example, there may already be established routines for consultation service use may be influenced by traditions of requiring attendance for tests, for monitoring and for repeat prescriptions and the input on the EPP courses may not be co-ordinated with the advice and activity of health professionals.
There was a suggestion that those with the more complex relationships with service providers may be more likely to alter their use or perceptions of services.
A major concern is that the EPP could increase inequalities. This is particularly the case as long as individuals opt in to such programmes and the programmes draw their participants from those who may already be relatively well-informed. There were also considered to be limitations to the existing programme content, with considerable potential for including the broad range of support elements necessary to those with long-term conditions and for strengthening a multi-agency perspective including the NHS, local authorities and the Department for Work and Pensions. The lack of input on welfare benefits was considered a particular weakness. A need to tie the EPP more tightly into routine chronic disease management and the relevant professionals was acknowledged. A key issue was whether a condition-specific programme would be better than the current generic approach of the EPP.
A second perspective on the EPP and these findings is offered by a study from the University of Hertfordshire (Wilson et al, 2007) which sought to answer the question: “Has it achieved its objective of promoting patient empowerment or has it merely replicated traditional patient-professional relationships?”
Interviews, focus groups and participant observation took place with 66 people in south east England, all “knowledgeable, active and informed” but not all involved in the EPP. These revealed three key elements. The majority considered themselves to be “systematic, proactive and organised” in their approaches to self-management. They spoke of mutual respect and clear communication in the doctor-patient relationship. And they spoke also of learning to compartmentalise emotion, removing it from the professional consultation.
The authors of this study suggest that the EPP is paradoxical. It exhibits evidence both of reinforcing the medical perspective through the content of the structured input of the programme, but at the same time through its emphasis on individual empowerment and the subjective experience of living with a long-term condition may lay the foundations for triggering a user movement. This study also echoes findings from the national evaluation – for example, a concern that the EPP is reaching only the more advantaged, and a preference for programmes tailored to specific conditions. Taken together these two evaluations suggest at most an amber light for the EPP, particularly in respect of its core aim of reducing the use of health care service.
This consideration of the EPP is of particular relevance with the implementation of the Expert Carers’ Programme (the name is to be changed following representation by carers) first promised in the white paper, Our Health, Our Care, Our Say. The aim is “to provide training for carers to develop the skills they need to take greater control over their own health, and the health of those in their care”.
A core national team has been announced comprising Princess Royal Trust for Carers, Carers UK, Crossroads, Partners for Policymaking and the Expert Patients Programme, now restructured as a community interest company. This will provide support and funding to a network of local training providers who will offer courses either face-to-face (scheduled from August) or through distance learning (from December). Despite the different context, it will be a wasted opportunity if the learning from evaluations of the EPP is not given due consideration in the course of implementing this new initiative for self-support.
Alison Petch is director of Research in Practice for Adults. Ripfa promotes the use of evidence informed practice in the delivery of adult social care services
LINKS & RESOURCES
● Department of Health (2006), Supporting People with Long-term Conditions to Self Care: a guide to developing local strategies and good practice
● Department of Health (2007), Research Evidence on the Effectiveness of Self Care Support (work in progress 2005-7)
● Department of Health (2007), Self Care Support: the evidence pack – summary of work in progress 2005-07
● Griffiths C, Foster G, Ramsay J, Eldridge S and Taylor S (2007), “How effective are expert patient (lay led) education programmes for chronic disease?” British Medical Journal 334, 1254-1256
● Leech J (2008), What Models of Care Are Effective for People Living with Long-term Health Conditions? OutLine 10, research in practice for adults
● Wilson P, Kendall S and Brooks F (2007), “The Expert Patients’ Programme: a paradox of patient empowerment and medical dominance”, Health and Social Care in the Community 15, 426-438