It is time that self-management and associated concepts become the default position of health care systems

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!

Clinicians need to change their behaviour and recognise that what they think is a good outcome might not be what’s important to the person they are treating.

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:

This model now forms a core part of the five-year plan for the NHS.

Jim Phillips

Jim Phillips

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.

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Self-management not only means to deal with the current condition, but also pursuing a holistic approach to mental and physical wellbeing. Self-management complements medical treatment to become more effective and successful. “Self-management has empowered me to better know and understand myself on so many levels” explains Jacqueline Bowman-Busato in her contribution.

For at least the past 23 years, I’ve been living with two complex chronic, relapsing diseases: Autoimmune Hashimoto’s and obesity. And yet, I can only say that it’s been the last 18 months where I have finally felt in control of my two diseases in any meaningful way. And this has been due to finally understanding and embracing responsible self-management.

Let me explain from a patient’s perspective. When I consciously started the journey of firstly realising that I had “a thyroid problem” which eventually was diagnosed as autoimmune hashimotos, I didn’t understand that a simple pill wasn’t enough to minimise symptoms. Critically, none of my medical specialists seemed to know or care about this fact either. The resultant search for energy in the wrong places aggravated my hashimotos symptoms (severe malabsorption of vitamin D and B as well as iron which all present as depression and severe anxiety). And all very quickly led to developing obesity. I never discussed obesity with my GP for 20 years (the average is 6 years according to a new study Action IO). I “dealt with it” by following holistic diets which always had a beginning, middle and very quick end!

Self-management has empowered me to better know and under-stand myself on so many levels.

It´s time to change

It was not until 18 months post bariatric surgery on 4 July 2016 that everything finally clicked into place for me. I realised that regardless of the good intentions of the public health environment, the sad fact of today’s chronic disease environment is medical treatment of physical manifestations rather than a holistic approach to mental as well as physical wellbeing, not to mention a lack of positive motivation to work together with health professionals in an empowering and empowered way.

Self-management has meant that I have had to take a very long and hard look at myself, the good, the bad and the very ugly truths in order to forge a personal pathway towards managing my life in such a way to optimise my mental health and wellbeing. Armed with my newly gained (and acknowledged) self-knowledge, I forged my own objectives-driven processes for achieving my goal of “mental clarity”. For me, brain fog has been my biggest barrier to sustainable management of both hashimotos and obesity. Having an objective of brain clarity rather than weight or specific blood values has meant that I’ve been able to take control of my health much more than if I solely relied on medication and then wondered why I was still malnourished to the point of continuing to seek energy in foods which are basically poison to me. Giving myself parameters with well-defined processes has significantly empowered me and raised my confidence levels to collaborate with my health care team. I am now listened to and heard.


Jacqueline Bowman-Busato

As a patient representative, Jacqueline has advised the Innovative Medicines Initiative (IMI) on patient engagement strategy, and provides expert advice to the European Commission on self-care policies. She works extensively on European as well as global projects bringing the key stakeholders together to build lasting consensus on global, regional and national levels.

Empowerment through self-management

Science very clearly states that obesity is a chronic relapsing disease. It‘s not the fault of one or other individual. In my world, that does not mean that I have to accept whatever medication I’m given in isolation. It means that I use the treatment (in my case the radical treatment of bariatric surgery) as a tool and I supplement with my own process for mental and physical wellbeing to put me on an even playing field to be able to optimise the medical treatment. Self-management empowers me to engage with the system and my health professionals. It allows me to give myself a bit of certainty which is not anxiety causing. It allows me to feel a partner in my own health. Self-management has empowered me to better know and understand myself on so many levels.