The Self-Care Academic Research Unit (SCARU), Imperial College London – Written evidence (INQ0037)

Submitted by:

Dr Austen El-Osta, Director, Self-Care Academic Research Unit (SCARU), Imperial College London

Dr David E. Webber, President, International Self-Care Foundation (ISF) & founding partner of SCARU

Professor Azeem Majeed, Head of Department of Primary Care & Public Health, Imperial College London

1.    INTRODCUTION

The Select Committee is to be congratulated on raising the question of how to support vitality in ageing and in increasing health span for all.

It is the opinion of the Self-Care Academic Research Unit (SCARU)[1] that increasing health span of individuals is a realistic and achievable goal, that any recommendations should be based on present scientific knowledge, and that it can be facilitated by encouraging and supporting people to ‘self-care’. Leading a healthy lifestyle implies self-care above all else.

However, significant challenges lie in several areas of public policy. We offer the following responses to some of the questions posed and would be pleased to elaborate further if invited to do so.

Specific questions addressed in this response document:

1. How complete is the scientific understanding of the biological processes of ageing and their epidemiologies?

2. How firm is the scientific basis for public health advice about healthy lifestyles as a way to increase health span, including physical health and mental health?

1. What are the practical impediments for this advice being acted on?

2. Are there examples of good practice in the UK/devolved nations, or elsewhere?

4. How complete is the understanding of behavioural determinants and social determinants of health in old age, and of demographic differences?

11. How feasible is the Government’s aim to provide five more years of health and independence in old age?

2.    RESPONSE TO QUESTIONS

QUESTION 1

HOW COMPLETE IS THE SCIENTIFIC UNDERSTANDING OF THE BIOLOGICAL PROCESSES OF AGEING AND THEIR EPIDEMIOLOGIES?

In our view, the current level of scientific understanding of the biological processes of ageing is sufficient for evidence-based policy prescriptions to be applied. The extensive report from CB Insights adequately describes the molecular, genetic and cellular processes associated with ageing. However, the distinction between the normal processes of ageing (senescence) and abnormal morbidities and “disorders” resulting from unhealthy lifestyle choices and behaviours needs to be made much more explicit.

There is a widespread general assumption that ageing is naturally and inevitably associated with decay and disease. But while ageing is natural and normal, it is possible to maintain satisfactory health well into the 8th or 9th decade of life with only a moderate decline in functionality. Population health spans could be much longer if individuals are empowered to prevent disease and manage existing ailments and long-term conditions through self-care. The Japanese capture this approach in their concept of “pin pin korori”, which roughly translates to; “may you live a spry and energetic life (pin pin) and die quickly and painlessly (korori)”.

Notably, even some of the effect of normal ageing can be mitigated by healthy lifestyles. For example, the older brain benefits from exercise, which keeps neural connections strong and is positively influences mood and memory. Weight-bearing exercises can help increase bone strength, retain muscle mass and strength, and maintain flexibility and posture.

But today’s health picture looks very different to this. The slow decline in health and functional capability associated with ageing is being obscured by a number of long-term metabolic “lifestyle” diseases. The mortality and morbidity due to noncommunicable diseases (NCDs) such as heart attacks, strokes, chronic obstructive pulmonary disease, asthma, cancers and diabetes is evident, and NCDs are estimated to account for up to 70% of all deaths worldwide. The list of lifestyle diseases extends far beyond these major NCDs to include (for example) gallstones, varicose veins, appendicitis, diverticular disease, haemorrhoids and dental caries.

Several lines of evidence indicate that these NCDs are relatively “new” diseases and “disorders” caused by significant changes in lifestyle over the last few centuries. Firstly, living conditions have changed profoundly since industrialisation, and these changes which have ultimately affected both physical and mental health: increased size and density of populations; transfer from rural to urban life; reduction of alimentary fibre coupled to a significant increase in calorie consumption in the diet (especially of saturated fat and refined sugars) leading to overweight and obesity; increased consumption of salt; increased use of tobacco and alcohol; and a reduction of physical exercise. Most of these changes are relatively recent, but human genes and physiology are attuned to ways of life very different to the lifestyle behaviours and choices observed today. Table 1 below summarises some of the known risk factors associated with common NCDs:

Table 1. Lifestyle and metabolic risk factors associated with preventable chronic diseases and NCDs (WHO)

What is the role of genes in disease? Some diseases can be linked to specific genes, but most are not determined solely or even principally by one’s genetic inheritance. In reality, the vast majority of NCDs are caused primarily by unhealthy lifestyles including physical inactivity and poor nutrition.

The fundamental point is that NCDs are not a natural and inevitable part of the ageing process, but rather are mainly the result of a combination of unhealthy lifestyles and physiological, environmental and behavioural factors.

“Indeed, it can be argued that the unprecedented rise in chronic and non-communicable diseases we observe today results directly from our inability to self-care” (D. Webber, 2016)

Many commercial entities are looking for ways to help with different aspects of ageing, which is commendable. However, the real (and arguably the first) gains are to be had with self-care, which fundamentally needs very little in terms of advanced technology.

QUESTION 2

HOW FIRM IS THE SCIENTIFIC BASIS FOR PUBLIC HEALTH ADVICE ABOUT HEALTHY LIFESTYLES AS A WAY TO INCREASE HEALTH SPAN, INCLUDING PHYSICAL HEALTH AND MENTAL HEALTH?

The evidence for the positive effects of people adopting healthy lifestyles is clear. NCDs and other diseases are preventable. Reports from the WHO conclude that up to 80% of heart disease, stroke and type-2 diabetes and over a third of cancers could be prevented by eliminating shared risk factors including tobacco use, unhealthy diet, physical inactivity and the harmful use of alcohol (WHO, 2008). Patients with an established chronic condition can make a major difference to their disease morbidity, prognosis and health span by adopting and sustaining healthier lifestyle choices and behaviours through better self-care.

The benefits of holistic self-care also extend to positively affect mental health. Social care and social protection mechanisms are important contributors to good mental health, especially in older age. For example, social care supports the ideal that individuals can work with their strengths as opposed to identifying only their weaknesses to promote independence (and avoid unnecessary dependence) and to manage demand on stretched public funds. Those not eligible for state-funded care are left with the option of looking after themselves (generally with the aid of informal carers) and become what are known as ‘self-funders’. All of the issues discussed above rely to some extent on people being able to manage their own health and care.

However, there is little research on how best to activate this in populations of adult social care users. Further, as there are a number of overlapping interests in adult social care practice, it is possible that this challenge of activation of the abilities of individuals (and their informal carers) is currently being neglected. Without understanding who can best activate their ability to manage their own heath and care, how to support them to do this, and how to support those not yet at the threshold for effectively managing their abilities/needs, there is a risk that blanket interventions aimed at prevention and/or drawing on individual strengths may be inappropriately and ineffectively targeted at the individual level and, hence, inefficiently at the system/population level.

This makes the point that increasing the lifespan of individuals alone without having the social support or social protection mechanisms in place to promote good mental health and vitality in ageing is insufficient. An increase in lifespan is arguably only meaningful if the individual is able to maintain a good quality of life, awareness, cognition and good mental health. Longevity may otherwise be perceived to be an extended life of suffering, a poor quality of life and overly costly from the context of the wider health economy.

QUESTION 2(a)

WHAT ARE THE PRACTICAL IMPEDIMENTS FOR THIS ADVICE BEING ACTED ON?

Major challenges exist for individuals and for all other stakeholders, in adopting, maintaining and supporting healthier lifestyles.

For individuals, following a healthier lifestyle – self-care – can be difficult. It requires a basic level of knowledge, health literacy and self-awareness. It requires motivation and persistence, and a supportive environment health system and broader green and built environment.

A particular challenge is the numerous different stakeholder groups that have a vested interest in people leading healthy lifestyles. With over 40-50 different stakeholders, each with their own agenda and interpretation of how to encourage healthy lifestyles, there is a real tendency to overlook other constituencies. This creates a silo effect which is inevitably duplicative, certainly confusing to the self-carer, and ultimately impedes the efforts of policymakers.

Another universal difficulty is the lack of a common framework of understanding of what is involved in following a healthy lifestyle. Many public health programmes have a ‘vertical’ approach to tackling single issues (e.g. tobacco smoking or physical exercise). This contrasts the holistic approach of considering the self-carer as a whole person.

In our view, person-centred interventions and policy prescriptions that consider and promote the individual’s self-care capabilities are key to creating a society that actively seeks the routine adoption of healthy lifestyle choices and behaviours. The activities involved with self-care are conveniently visualised in the “Seven Pillars of Self-Care” illustrated in figure 1 below:

Figure 2: The Seven Pillars of Self-Care Framework

QUESTION 2(b)

ARE THERE EXAMPLES OF GOOD PRACTICE IN THE UK/DEVOLVED NATIONS, OR ELSEWHERE?

There are many excellent public health programmes and examples of good practice in Public Health England and the NHS. We argue that any intervention that improves the health and wellbeing of individuals, no matter what age, will ultimately support longevity and increase health span. Around the world there are many healthy lifestyle programmes deserving wider recognition and further development. An outstanding country example is Australia. Table 2 below characterises a relevant sample of primary prevention public health programmes in the England.

Table 2: primary prevention public health programmes to support longevity and vitality in ageing

QUESTION 4

HOW COMPLETE IS THE UNDERSTANDING OF BEHAVIOURAL DETERMINANTS AND SOCIAL DETERMINANTS OF HEALTH IN OLD AGE, AND OF DEMOGRAPHIC DIFFERENCES?

Human beings are complicated. Studies have found a wide range of barriers to the routine adoption of healthy lifestyles at an individual level which include: physical ability, beliefs, perceived importance, comorbidities, financial constraints, inadequate symptom recognition, ethnic and cultural perceptions, insufficient information, negative emotions, psychological stressors, nutrition challenges, past experiences, low self-initiative, social integration and personal preferences. Many (vertical) programmes have been shown to effectively tackle tobacco use, unhealthy diet, physical inactivity and the harmful use of alcohol. However, there is need for further research into health behaviours and determinants.

Focusing on the individual perspective means focusing on self-care capacities and capabilities. From the person-centred perspective, the following self-care elements are key, and need be considered on a daily basis and throughout life, in sickness and in health:

a)    The activities of self-care (the 7 pillars, holistically, during the day, over the life course from age 5 to 105)

b)    The self-carer’s attitudes, behaviours and habits, and the process of self-care (Capability, opportunity and motivation. Mindfulness/self-awareness/agency. Maintenance, monitoring and management. Persistence and resilience)

c)     The social context and social capital of the self-carer (The home and community, the health system and the broader green and built environment)

All three elements describe in other terms the importance of demography, behavioural and social determinants for healthy lifestyles.

There is a great need for further academic research into these areas, which has in the past been rather neglected, or with work restricted in silos. To address this, our Self-Care Academic Research Unit (SCARU) was inaugurated in 2017 an remains to date as the only university research academic unit dedicated specifically to the study of self-care was was inaugurated in 2017. Subsequently, the International Centre for Self-Care Research (ICSCR) based in Rome and funded by the Australian Catholic University was formed in June 2019.

QUESTION 11

HOW FEASIBLE IS THE GOVERNMENT’S AIM TO PROVIDE FIVE MORE YEARS OF HEALTH AND INDEPENDENCE IN OLD AGE?

The elephant in the room is in the politics of promoting a healthy lifestyles in a democracy. What is the relationship between the State and the individual? The Secretary of State for Health illustrates and navigates this unspoken tension well in the following statement:

“Prevention is about ensuring people take greater responsibility for managing their health. It’s about people choosing to look after themselves better, staying active and stopping smoking….but focusing on the responsibilities of patients isn’t about penalising people. It’s about helping them make better choices, giving them all the support we can, because taking the tough decisions is never easy.” (Mr Matt Hancock, 5 Nov 2018)

Addressing NCDs and other lifestyle diseases requires a multifaceted approach, including tackling environmental issues and addressing people’s behaviours. Unhealthy diets and obesity are due in part to the wide easy availability of junk food, but they are also the result of the over-consumption of calories and the unhealthy food choices. Urban design to encourage physical exercise is vital, but it still requires the individual to make a consistent effort themselves. Environmental changes alone are not sufficient.

A real public discussion is needed around people taking greater responsibility for managing their own health and wellbeing, not just about their rights to health or unlimited healthcare. It may be noted that the consequences of poor lifestyle behaviours are not only experienced by the individual, but may also result in a number of negative “externalities” with implications to the family, the social network, the community and the wider health ecosystem.

3.    SUMMARY & CONCLUSION

Self-care is a potential win-win opportunity for all stakeholders in health, starting with the self-carer. It can be a win for governments through healthier, more productive citizens and reduced pressure on health and social system services and budgets. It can be a win for healthcare professionals – doctors and nurses will have more time to focus on keeping people well and for more serious cases, and pharmacists may be able to offer a wider range of health and wellness services. It can be a win for the commercial sector – better self-care will expand the rational use of products and services and offer opportunities for the development of new products and services. However, major challenges exist for all stakeholders, in adopting, maintaining and supporting healthier lifestyles.

In our view there are many emerging technologies that will help people to self-care and lead healthier lifestyles. This potential notwithstanding, it is possible for people to lead healthier lives without reliance on technology. One challenge is that current technologies are often supplier-led (tech innovation driven), rather than needs/demand-led.

The Government’s aim to provide 5 more years of health and independence is reasonable. However, maintaining a good quality of life in these additional 5 years is only possible if individuals are empowered to and choose to self-care through the adoption of good lifestyle choices and behaviours.

This year has been particularly exciting as we saw the publication of the BMJ special supplement on self-care (April), the launch of the International Self-Care Research Centre in Rome (June) and the publication of the WHO consolidated guidelines for self-care interventions (July). Many countries have incorporated aspects of self-care into policies and promoted some innovation and notable practices. However, all countries are a long way from implementing robust and meaningful policy prescriptions designed to promote individual and population self-care capabilities, shift professional practices, or reorient healthcare systems towards a preventative ethos. While the importance of achieving a salutogenic health model has been acknowledged in theory and in some global policy rhetoric from the UN and the WHO, we are a very long way from real transformation.

It is now more important than ever to stress the singular importance of taking individual responsibility for health. Self-care is integral to the government’s approach to personalisation, so that individuals of all ages and from all walks of life can be at the heart of decision making about the issues that matters to them the most. By developing self-care capacity and capability in individuals, social networks & societies, we can help prevent, delay or better manage the progression of lifestyle diseases which have reached epidemic proportions across the world.

People value their independence and the opportunity to make their own choices and to take control - regardless of whether or not they have a long term physical or mental health condition, a complex need, or whether it be a simple desire to maintain vitality in ageing, the planning of their retirement or their end of life care. The study and application of self-care is therefore vitally important to everyone, from educators to schools, employers, the workforce and governments.

19 September 2019

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