In 2002 the NHS in England launched the first national programme for self-management based on the six-week course developed by Professor Kate Lorig and her team, then part of Stanford University. Over the next six years over 100,000 people with long-term health conditions attended the courses. Today the numbers going through that programme can be counted in the hundreds. What has changed? Is that a sign of success or failure?
Let us look at what has evolved over the last twenty years since the concept of the “Expert Patient” was first proposed in policy papers by the UK Government.
Soon after introduction of the expert patient programme people who had been through the programme in the early years quickly started reporting that although they feel much more confident in managing their health condition, they were often met with clinicians who did not want to involve them in decisions about her health and were only focused on their disease and symptoms – very much “what’s the matter with you”. In addition, services were designed in a way that assumed everyone had high health literacy and a one size fits all approach – which operated best when people were passive and compliant!
The comprehensive model of Personalised Care
In response to these issues the Health Foundation set up the co-creating health programme, a six-year action research project that identified three areas to focus on if self-management was to become more mainstream. These were:
- Structured evidence based self-management support for people with long-term conditions;
- Give clinicians the skills to engage in a coaching/person-centred care approach;
- Make changes to the care pathways to actively promote self-management and tailor care and support according to a person’s level of health literacy.
The programme helped to emphasise that the majority of health outcomes are not dependent on clinical interventions but as much the behaviour and environment of the individual and their support networks. The programme showed positive changes in levels of activation (measured by the Patient Activation Measure), anxiety and across a range of health behaviour related domains (measured by the Health education impact Questionnaire). Gradually we began to see other changes taking place in the NHS: The “what matters to me” campaign – the concept of person-centred care, and the recognition that quality health outcomes can only be achieved through collaboration based on what outcomes are most important to the individual.
All of these strands finally came together under the new banner of personalised care and the comprehensive model for personalised care. The model sets out six key interdependent areas that need to be in place. This comprehensive model of personalised care establishes:
- Whole population approaches to supporting people of all ages and their carers to manage their physical and mental health and wellbeing, build community resilience, and make informed decisions and choices when their health changes;
- A proactive and universal offer of support to people with long-term physical and mental health conditions to build knowledge, skills and confidence and to live well with their health condition;
- Intensive and integrated approaches to empowering people with more complex needs to have greater choice and control over the care they receive.
The Model brings together six, evidence-based components or programmes, these are:
- Shared decision making
- Personalised care and support planning
- Enabling choice, including legal rights to choice
- Social prescribing and community-based support
- Supported self-management
- Personal health budgets and integrated personal budgets
This model now forms a core part of the five-year plan for the NHS.
Jim Phillips led on the setting up of the NHS Expert Patient Programme and has been extensively involved in training health and care professionals in key skills and approaches to support self-management both in the UK and Internationally.
Engage people in personalised care
The current coronavirus situation has demonstrated more than ever the need to have personalised care conversations around what is important to people and what they can do to stay well. It has taken 20 years to get to a point where self-management is fully embed as a core part of how health services operate. Recognising that decisions about care and treatment are joint decisions, drawing upon a person’s lived experience and what is important to them and the clinical expertise in understanding the range of evidence-based treatments. For people to engage in a personalised care approach it´s now recognised that people with long-term health conditions need to be supported to develop the confidence knowledge and skills to engage and manage her health conditions based on what matters to them, but also clinicians need to be trained to be able to have coaching based conversations to better understand the wide psychosocial needs of people seeing them and not just viewing them through a narrow bio-medical lens.
The original NHS Expert Patient Programme put down a clear marker and a challenge to the NHS that people want to be involved in all aspect of their health and care and arguably had the scale and impact to challenge the existing status quo ensure that self-management was here to stay.