Primary Care Reports – Improving Care, Patients with Long Term Conditions, Clinical Health Coaching by Global Business Media

SPECIAL REPORT

Improving Care for Patients with Long Term Conditions through Clinical Health Coaching Clinical Health Coaching: The Empowered Patient Means Transformation of Care Long Term Health Conditions The Long Term Impact of Long Term Conditions A New Way of Managing Long Term Conditions Self-Care in Action

Sponsored by

Totally Health: Clinical Health Coaching Published by Global Business Media

Published by Global Business Media Global Business Media Limited 62 The Street Ashtead Surrey KT21 1AT United Kingdom Switchboard: +44 (0)1737 850 939 Fax: +44 (0)1737 851 952 Email: info@globalbusinessmedia.org Website: www.globalbusinessmedia.org Publisher Kevin Bell Business Development Director Marie-Anne Brooks Editor John Hancock Senior Project Manager Steve Banks

What is Clinical Health Coaching? Why Clinical Health Coaching? Totally Health Clinical Health Deliverables Case Studies: [Case Study 1] Chronic Disease Management (CCG population) [Case Study 2] Integrated with Technology [Case Study 3] Benefits for GP practices

Long Term Health Conditions Long Term Health Conditions; A Sign of the Times The Prevalence and Distribution of Long Term Health Conditions

The Long Term Impact of Long Term Conditions

Production Manager Paul Davies

A New Way of Managing Long Term Conditions

For further information visit: www.globalbusinessmedia.org

Peter Dunwell, Medical Correspondent

ÂŠ 2016. The entire contents of this publication are protected by copyright. Full details are available from the Publishers. All rights reserved. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, electronic, mechanical photocopying, recording or otherwise, without the prior permission of the copyright owner.

Camilla Slade, Staff Writer

Impact of Long Term Conditions on the Patient Impact of Long Term Conditions on Healthcare Services Impact of Long Term Condition on Healthcare Budgets

Material in advertisements and promotional features may be considered to represent the views of the advertisers and promoters. The views and opinions expressed in this publication do not necessarily express the views of the Publishers or the Editor. While every care has been taken in the preparation of this publication, neither the Publishers nor the Editor are responsible for such opinions and views or for any inaccuracies in the articles.

John Hancock, Editor

Advertising Executives Michael McCarthy Abigail Coombes

The opinions and views expressed in the editorial content in this publication are those of the authors alone and do not necessarily represent the views of any organisation with which they may be associated.

The Challenge of Long Term Health Conditions Self-Care, a Patient Centred Way of Managing Long Term Conditions What is Self-Care?

Self-Care in Action

John Hancock, Editor

The Self-Care Model Benefits of a Self-Care Programme Making a Self-Care Model Work Who Would be Right for Self-Care?

References 16

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

Foreword M

ODERN DEVELOPED world healthcare

wider wellness issues, such as smoking and obesity.

systems have had great success managing

This is achieved by clinical health coaching, working

to reduce or delay for many years deaths

directly with patients to develop understanding of each

from acute medical conditions. However, that

person’s experiences and their desired outcomes.

has generated an increased number of

We then take a look at long term health conditions,

conditions requiring management over a long

their prevalence and some of the reasons why

period and, with the rising age of populations

there has been an explosion of such conditions

in developed countries, a cumulative rise in the

and consequent significant rise in the numbers of

number of long term medical conditions with

people living with such conditions. Camilla Slade

which people are living.

then considers the impact of long term conditions

Alongside this, poor avoidable health behaviours

on patients, of course, but also on the other people

(alcohol, smoking, obesity…) make growing

who find themselves involved, including clinicians

numbers of people reliant on healthcare services

and healthcare systems. Next, Peter Dunwell offers a

simply to manage their everyday lives. The costs and

different way of managing long term conditions with

burden are projected to become unsustainable unless,

the idea that people with the conditions can become

among other things, a better care delivery model can

partners in their own care plan rather than mute

be implemented.

recipients of whatever care procedures the system

This Report looks at such a model whose use is

might offer. Finally, we set out the benefits of a self-care

growing. Self-care does not abrogate the clinician’s

model, again on the patient and others, before looking

role in supporting a patient but does offer the

at the need for a proper self-care support structure

patient a degree of responsibility for the tasks that

and considering what skills a patient will need to self-

constitute care.

manage their care programme and how they might

In the opening article by Emma-Jane Roberts, Chief

gain those skills.

Operating Officer of Totally Health, looks at the ways in which individuals can make positive changes in their lives which address long term health conditions and

John Hancock Editor

John Hancock has been Editor of Primary Care Reports since launch. A journalist for more than 25 years, John has written and edited articles, papers and books on a range of medical, management and technology topics. Subjects have included management of long-term conditions, elective and non-elective surgery, Schizophrenia, health risks of travel, local health management, and NHS management and reforms.

2 | WWW.PRIMARYCAREREPORTS.CO.UK

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

Clinical Health Coaching: The Empowered Patient Means Transformation of Care Emma-Jane Roberts, Chief Operating Officer, Totally Health: Clinical Health Coaching

HEN HEALTHCARE is designed to empower self-management, people with Long Term Conditions and their carers play a more active role in managing their own health and reducing their need for help from the NHS. Our approach at Totally Health is to adapt and reflect each person’s level of knowledge, skills and confidence around managing their condition and to increase their knowledge, to empower them and to provide support and influence behaviour changes. Totally Health is a national-award-winning specialist provider of Shared Decision Making and Clinical Health Coaching services, the aim of which is to help individuals make positive changes in their lives which address long term health conditions and wider wellness issues (e.g. smoking and obesity). We provide tailored one-to-one clinical health coaching to enable patients to gain the knowledge, skills and confidence to become active participants in their own health and healthcare, reducing their reliance on both primary and secondary healthcare services.

The Totally Health model is proven to complement and support existing health care pathways. It delivers lasting changes for patients, more effective condition management, better compliance with treatment, and an improved interaction with available health services. Our vision builds on proposals to ‘liberate’ the NHS by putting patients at the centre of decision making about their own care, enabling them to have more control over their condition and therefore co-creating better outcomes for them and for health and care systems. The Health Foundation has recently published findings suggesting that effective self-management is the key to person centred care i.e. care that is personalised, coordinated and enabling. At Totally Health we achieve this by working directly with patients to develop an understanding of each person’s experiences and their desired outcomes, which enables our Clinical Health Coaches to provide tailored support. Our coaches take into consideration the individual’s quality of life, abilities, aspirations, preferences, disability, emotions, social support, confidence and sense of wellbeing. WWW.PRIMARYCAREREPORTS.CO.UK | 3

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

The Health Foundation has recently published findings suggesting that effective selfmanagement is the key to person centred care i.e. care that is personalised, coordinated and enabling

What is Clinical Health Coaching? Clinical Health Coaching helps patients to gain the knowledge, skills, tools and confidence to become active participants in their care so that they can reach their self-identified health goals. At Totally Health our coaches have five principal roles: providing self-management support, facilitating communication between clinician and patient, helping patients to navigate the health care system, offering emotional support, and providing a continuity of support for the patient. Over a quarter of the population in England has a Long Term Condition and an increasing proportion of these people have multiple conditions. The Five Year Forward View notes that ”Long Term Conditions are now a central task of the NHS”. We believe caring for these needs requires a partnership with patients over the longer term rather than providing single, unconnected “episodes” of care. Helping patients thrive in the presence of these diseases requires a paradigm shift in health care delivery models; moving from “What’s the matter” to “What matters to you?”. This means moving away from a paternalistic and dependent consultation model of ‘fixing’, to one that is empowering and increases patient activation, confidence, compliance and healthy behaviours, which are all needed to improve outcomes and reduce healthcare costs. At Totally Health, we can help you to deliver this. We believe our clinical health-coaching model empowers the patient to extend their health care outside the traditional health and social care environments and into their real, everyday life and enables them to take ownership of their condition and its management. Our clinical health coaches train patients in seven support domains of self-management: providing information, teaching disease specific skills, promoting healthy behaviours, imparting problem-solving skills, assisting them to cope with the emotional impact of chronic illness, providing regular follow up and encouraging people to be active in their care.

Why Clinical Health Coaching? The considerable and increasing impact of longterm conditions on morbidity, mortality, quality of life and healthcare costs are significant. • 15.4 million people in England are recorded as having have a Long Term Condition, and an increasing number of these have multiple conditions (the number with three or more is expected to increase from 1.9million in 2008 to 2.9million by 2018). • People with Long Term Conditions use a significant proportion of health care services: o 50% of all GP appointments o 70% of days spent in hospital beds, and 4 | WWW.PRIMARYCAREREPORTS.CO.UK

0% of hospital and primary care budgets 7 in England Health care providers have the difficult task of trying to manage chronic disease care in complex service systems that are poorly designed to motivate, equip and empower patients to make behaviour change. Long Term Conditions represent large and costly chronic healthcare challenges. Self-management and preventative measures can reduce costs effectively. Despite differences between diseases, the expectations and demands placed on the patients are similar: to cope with multiple medications and comorbidities, to alter behaviour, to deal with social and psychological impacts of symptoms and to interact with multiple providers. Clinical Health Coaching is a relatively new concept for the NHS, although it is well established in other parts of the world, where it has been shown to be a highly effective model of care. Our Clinical Health Coaching services are delivered by experienced nurses, specially trained as coaches working through telephone interventions, who provide a powerful means of motivating patients to change thinking patterns and behaviours to drive better health outcomes. Totally Health provides the leading Clinical Health Coaching service in England that can be delivered either alone or aligned with other pathway elements, e.g. augmenting Care Planning and Clinician Activation: two elements of the NHS Long Term Condition delivery system, ‘The House of Care’. Totally Health Clinical Health Coaches act in a non-directive manner to empower patients to take an active and empowered role in managing their health, educating them about their condition, treatment and prevention. The confidential oneto-one telephone dialogue between the patient and their individual clinical health coach, at times convenient to the patients and without the need for travel, helps them to discuss how lifestyle changes can positively impact their health status, set goals to change behaviours and provides mentoring to support achieving those goals.

Totally Health Clinical Health Deliverables Totally Health has an innovative, proven model of medically-driven whole-person clinical health coaching that delivers sustainable behavioural changes. Our first patient was recruited into the service in December 2012 and so far, over 1,200 patients have been referred into the clinical health coaching service across England and results show: • Over 35,000 coaching sessions have been delivered •5 9% average reduction in GP Appointments (most achieved in a CCG was 70%)

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

•4 8% average reduction in Community Matron appointments (most achieved in a CCG was 57%) •7 2% average reduction in Out of Hours (most achieved in a CCG was 89%) •7 2% average reduction in Unplanned Admissions (most achieved in a CCG was 75%) •5 0% reduction of 50% in MSK referrals for secondary care management We achieved all this by utilising our Totally Health recruitment clinical manager and assigning each patient a personal clinical health coach for the duration of the service. They have dedicated time to educate patients, listen to their concerns and correct any misunderstandings. The patients are encouraged and supported to reach agreed goals with treatment and lifestyle changes. Examples include smoking cessation, weight reduction, exercise and diet modification. Our Clinical Health Coaching has led to increased patient confidence and condition awareness, empowering patients to self-care and to take necessary steps to control symptoms and avoid complications. Following on from our intensive Clinical Health Coaching programme for Chronic Disease Management, patients are offered maintenance coaching so they can then remain supported and can contact their named clinical health coach if they are anxious about any aspect of their health and wellbeing during a step down maintenance pathway process. In addition to the Chronic Disease Management, Totally Health also provides other Clinical Health Coaching services, including:

•A dmission Pressures: helping to keep people well and reduce the risk of crises in those months that exacerbate conditions, e.g. cold spells that can aggravate respiratory conditions and Ramadan that can exacerbate complications of diabetes. •H ospital discharge support: our coaches offer telephone support and reassurance, to bridge the clinical gap between hospital and home, and so relieve pressure on GPs. •W ellness: our coaches can help support people in making healthier life choices such as smoking cessation, increasing physical activity and healthier eating and assisting the NHS prevention agenda and supporting employees to remain in employment and at work •P atient Decision Aids for Shared Decision Making: Totally Health provides the shared decision making services and support for the national programme in England.

Case Studies [Case Study 1] Chronic Disease Management (CCG population) We have worked with a number of CCGs across England to support their QIPP programmes in the reduction of emergency admissions and increase capacity within the health system to cope with demand. While technology can be an effective way to improve the reach of disease management interventions, these are less effective unless supported through consistent follow-up and inter-personal interaction. Our Clinical Health Coaching is a collaborative process characterised WWW.PRIMARYCAREREPORTS.CO.UK | 5

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

Health care providers have the difficult task of trying to manage chronic disease care in complex service systems that are poorly designed to motivate, equip and empower patients to make behaviour change

by motivational communication, where patientdefined goals related to disease management, and patient acceptance of accountability for decisions made uses different sets of selfmanagement tools to promote adoption of an active role in self-care by the patient. Health coaching evidence from the USA confirms that it can improve quality, effectiveness and costeffectiveness of disease management. Wendy Norton, Head of Health Coaching, Totally Health, said, “Health coaching for long term condition management and decision support really puts the patient at the centre of the process. People with long term conditions or those facing difficult health care choices can feel overwhelmed by the condition and its associated treatments: one of the values of health coaching is that, at all times, patients feel involved and in control which improves self-esteem and can elevate self-efficacy. Our service makes it easier for an individual to identify when things are starting to go wrong, so that they can be supported to take immediate and appropriate action rather than waiting until the situation has worsened, requiring medical intervention or hospitalisation which could otherwise have been avoided.” [Case Study 2] Integrated with Technology Integrated health coaching services, conducted amongst targeted cohorts of patients following risk stratification exercises to identify the most 6 | WWW.PRIMARYCAREREPORTS.CO.UK

appropriate individuals, and supported by telehealth, can be hugely beneficial. Research continues to question the effectiveness of standalone telehealth initiatives, with critics claiming that telehealth reinforces patients’ dependency on Health Care Practitioners to manage their care. However, as part of targeted clinical health coaching programmes, patient interaction with health coaches encourages individuals to take greater responsibility for the management of their condition, and empowers them to engage in decisions about their care. We worked with a Midlands CCG to evaluate the scale of impact of a combined intervention using clinical health coaching linked with telehealth and specialist nurse interventions triggered by biometric data in a redesigned service for COPD patients with a history of two or more prior unscheduled COPD admissions in the previous 12 months. The number of admissions decreased at a statistically significant rate from 3.13 admissions per patient to 1.02 over the 12-month period. The overall net saving to the CCG over the 12-month period was £117,550. Emma-Jane Roberts, Chief Operating Officer, Totally Health, said: “Reducing avoidable emergency admissions improves the quality of life for people with long term and acute conditions and their families, as well as reducing pressures upon the resources of local hospitals and GPs”.

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

Professor Azhar Farooqi, GP and chair for the Leicester City Clinical Commissioning Group, said: “The success of this new system is fantastic news for patients. We fully support innovation and working with service providers outside of the NHS to help us deliver the enormity of the long term conditions agenda.” [Case Study 3] Benefits for GP practices The emergence of long term conditions is the dominant challenge to health and care systems. Moreover, the pattern of long term conditions is changing. Although great strides have been made in tackling individual conditions, increasingly individuals have to cope with multiple conditions. Society has changed and people have different expectations, which means the traditional role of the professional with a patient will need to be transformed. We are currently working with a Midlands GP practice with a population of 15,000 to identify, recruit and provide clinical health coaching across a range of long term conditions and co-morbidities. Our programme is providing support to the practice to free up their clinicians to deliver other core services, emergency care and management of the complex patients requiring diagnostic interventions.

Health coaching evidence from the USA confirms that it can improve quality, effectiveness and cost-effectiveness of disease management

National Recognition FINALISTS; November 2015; Technology Enabled Care Services; Innovation in Healthcare Awards; East Midlands Academic Health Science Network WINNERS; November 2014; Clinical Team of the Year (Respiratory); The General Practice Awards WINNERS; November 2014; Excellence in Healthcare Collaborations and Partnerships; PMEA Dr Durairaj Jawahar, GP and COPD clinical lead for the Leicester City Clinical Commissioning Group: “Our patients get the support of managing their own condition at home. We know patients are happier and recover quicker when their care is managed at home. We are really pleased that the service has evidenced the benefits and the programme has enabled patients to avoid an admission.” Emma-Jane Roberts, Chief Operating Officer Totally Health, said: “Winning three national awards for our service is testament to how services external to the NHS and those within it can be integrated successfully to not only deliver high quality care to patients, but patients get the support of managing their own condition at home.” WWW.PRIMARYCAREREPORTS.CO.UK | 7

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

Long Term Health Conditions John Hancock, Editor

What they are, why they are a growing challenge, who have them and the cost

When patients selfcare and equally feel supported in doing so, they are more likely to have greater confidence and a sense of control, to have better mental health and less depression and to reduce the perceived severity of their symptoms, including experienced pain

N ITS 2011 paper, ‘Care Planning: Improving the Lives of People with Long Term conditions’1 the Royal College of General Practitioners stated, “Patients with long term conditions do not want to be defined by those conditions and… by working in partnership with their GPs, they do not have to be.” The paper continues, “… when patients self-care and equally feel supported in doing so, they are more likely to have greater confidence and a sense of control, to have better mental health and less depression and to reduce the perceived severity of their symptoms, including experienced pain.” But, perhaps we are running ahead here. Before we even address the topic of this paper it will be instructive to understand what are considered long term conditions, who are affected by them and what changes are occurring in the ways in which long term conditions present and run.

Long Term Health Conditions; A Sign of the Times he list of long term conditions is lengthy but T includes any conditions with which a patient will have to live for an indeterminate time or for the rest of their life. To name but a few more familiar examples, they can range from diabetes and cancers to arthritis, COPD (chronic obstructive pulmonary disease), HIV/AIDS, heart disease, obesity and related conditions, mental health conditions, dementia and the results of other problems such as alcohol and drug misuse and smoking. There are many others but space does not allow for them all to be listed. Chronic diseases have always been with us but a “combination of prevailing life-style factors including diet, lack of physical activity and smoking have contributed to the rising incidence of chronic disease in all parts of the globe, accounting for the majority of premature deaths in all but the lowest income countries.”2 This statement, from the European

8 | WWW.PRIMARYCAREREPORTS.CO.UK

Observatory on Health Systems and Policy, continues to draw a link between growing prosperity and chronic disease or long term conditions and to add the worrying prediction that such conditions and the burdens they impose will grow in the years to come. The potential for growth is perhaps the most worrying aspect of long term health conditions inasmuch as it will expand those parts of society that feel isolated from the mainstream with all the personal consequences to which that can lead. Also, as multiple long term conditions in one patient add to the complexity of their care needs, they might feel an ever increasing sense that their lives are governed not by their own will but by the multiple, though often uncoordinated, scheduling requirements of the healthcare system. The other major consequence affects that healthcare system itself with a growing proportion of its priorities and resources having to be used on simply maintaining those with long term conditions rather than on improving the health management and outlook of the whole population. Given the above, it is perhaps not surprising that, “A key feature of current health policy is the focus on long term conditions…”3 It is also significant in the terms of this report that the BMC Health Services paper quoted adds that, “Policy concerning the management of long term conditions gives high priority to active patient participation in delivery of health care, and to the importance of self-management.”

The Prevalence and Distribution of Long Term Health Conditions In England, the Government records4 that more than 15 million people have long term conditions and these people account for 70% of expenditure on health and social care in the country. The King’s Fund5 further qualifies those statistics with the information that. “Long term conditions are

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

more prevalent in older people (58 per cent of people over 60 compared to 14 per cent under 40) and in more deprived groups (people in the poorest social class have a 60 per cent higher prevalence than those in the richest social class and 30 per cent more severity of disease).” That the conditions that often become long term are most prevalent among the lower socio-economic groups where also, their presentation is often worse, is borne out by UK Department of Health statistics. They suggest that, while 33% of those from professional occupations are likely to suffer a long term condition at some time, that figure rises to 52% among unskilled occupations. It is also the case that people living in deprived areas will have multiple health problems 10-15 years earlier than people living in affluent areas. Also from the King’s Fund we learn that long term conditions account for 50% of GP appointments, 64% of hospital outpatient appointments and 70% of hospital inpatient bed days. Moreover, not only is the number of people with individual conditions increasing, but the numbers of patients with multiple and complex long term conditions is also rising. From these prevalence levels alone it’s easy enough to see why most healthcare professionals believe that there has to be a better way to manage long term conditions than the traditional care model. Certainly, Dr Martin McShane, NHS England’s national director for people with long term conditions, interviewed in the Guardian6 in January 2014, expressed the view that, the NHS in its current form is not well set up to look after patients who are medically complicated, especially if they have several long term

conditions, such as arthritis, heart failure and the early signs of dementia. While the total number of people with long term conditions is expected to stay at around 15 million, the number with three or more conditions is expected to rise from 1.9 million to 2.9 million by 2018. Professor Gillian Leng, Deputy Chief Executive for NICE7, would not disagree: “An estimated 6 million people in England aged 60 and over are living with more than one long term health condition.“ As the number of older people in society increases, this figure is expected to rise. A recent report by Age UK warned that a further one million older people in England could be living with multiple long term conditions by 2020. A key element in any management programme for long term conditions must be the people themselves. The Institute for Public Policy Research (IPPR) in its report ‘Patients in Control’8 asked 2,500 people with long term conditions how they felt about their condition, their attitudes towards and experience of its management. Far from an acceptance that their lives should be subject to the schedules and decisions of others, these patients wanted a more active and involved part in the management of their condition citing areas such as ‘a named contact’, ‘ownership of medical records’, better ‘information and advice’, involvement with their ‘healthcare plans’ and control over their ‘personal health budgets’. It might be a far cry from the ‘centralised command and control’ way of managing patients but, perhaps, in light of modern attitudes as well as the sheer and growing numbers of people involved, it might be a better way for the future.

WWW.PRIMARYCAREREPORTS.CO.UK | 9

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

The Long Term Impact of Long Term Conditions Camilla Slade, Staff Writer

As the number of people living with long term health conditions increases, the immediate and cumulative effect on patients and healthcare systems will be enormous

A problem with any long term condition is the co-morbidities that accompany it, sometimes as a direct clinical consequence of the original condition and sometimes because of its lifestyle limiting aspects

10 | WWW.PRIMARYCAREREPORTS.CO.UK

ONG TERM health conditions affect society at all levels from the patient with the condition through their family, friends and carers to the national healthcare system, both in its structure and in the way it has to allocate resources.

Impact of Long Term Conditions on the Patient A problem with any long term condition is the co-morbidities that accompany it, sometimes as a direct clinical consequence of the original condition and sometimes because of its lifestyle limiting aspects. So, while the initial problem might be obesity, say, the resulting strain on the body might well lead to an accompanying heart condition and/or diabetes with all the problems of those conditions. Equally, being limited as a result of their condition as to what they can do, patients might become depressed and start to neglect themselves which, as readers will know, can result in a downward spiral of poor outcomes. The Centre for Mental Health9 in 2012 came up with the startling finding that, “the additional cost of treating long term conditions for those with depression and other mental health problems is between £8-13 billion a year.” Interestingly, “The report [concluded] that the costs of caring for people with long-term conditions could be reduced if the NHS was to manage the mental health needs of these people more effectively...)” It is those mental health challenges that are the focus of the BMJ article, ‘Long term effect of depression care management on mortality in older adults…’10 “Prospective studies have consistently shown an association between depression and increased mortality in older adults… A strong association exists between depression in late life and factors that increase mortality risk, such as poor adherence to medical treatment and self-care for diabetes and cardiovascular disease, health behaviours such

as smoking and lack of physical activity, cognitive impairment, and disability.” While there are often medical or surgical procedures that can address aspects of a longterm condition (weight loss surgery, for instance) and might well improve the clinical risk of mortality, it is clear that there is a mental aspect to this in which a sense of not being in control of one’s own life plays a significant part. And yet, from an institutional management point of view, there is logic to the traditional care system. The European Observatory on Health Systems and Policy11 explains it; “Hospitals have the advantage of confining the patient in one place, waiting for a series of investigations or a sequence of treatments to be undertaken. The patient is seen when it is convenient for the healthcare providers. Organizationally, this makes it easy to deliver complex packages of care, but it also brings major disadvantages for the patient, whose liberty is restricted.” (author’s emphasis). Those ‘major disadvantages might be summed up as a reduction in quality of life and that can be a significantly poor outcome from any system of managing long term conditions that does not have the patient at its centre. And we have to remember that it is not only the individual with the long term condition but also their family, friends and support network who have to take the strain if the care programme is designed to suit the bureaucratic convenience of the healthcare system rather than taking into account the continuing need of all these people to live fulfilling lives.

Impact of Long Term Conditions on Healthcare Services We’ve already seen in Johns Hancock’s preceding article that in England the care of people with long term conditions accounts for 70% of the costs of health and social care. But it isn’t only about cost: we’ve also seen that people with long term conditions account for about

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

50% of all GP appointments (some studies put that as high as 80%), 64% of outpatient appointments and 70% of inpatient bed days. And when patients have multiple conditions, the challenges can multiply: as the European Observatory on Health Systems and Policy (above) puts it, “The implications for health systems and society as a whole are considerable. People with chronic health problems are more likely to utilize healthcare, particularly when they have multiple problems.” But if people with long term conditions can impact the delivery of services, it is within the delivery of those same services that changes could improve the patient experience and, in so doing, reduce the burden of their condition on the healthcare system. The UK Department of Health paper, ‘Improving the health and well-being of people with long term conditions’12 sets out the challenge; “Effective LTC [long term conditions] management depends on more than just providing information to individuals and their families. It requires a supported process whereby people who live with LTCs work to appraise their current lifestyle choices, think about important goals for them as

individuals and work towards gaining the confidence to attain these goals. A multidisciplinary team of health and social care professionals may be involved in this process, depending on the complexity of the individual’s need.”

Impact of Long Term Condition on Healthcare Budgets Of course, changes like that will require some level of expenditure at the outset but, in the long run, will reduce the costs associated with those statistics (above) of the extent to which people with long term conditions now dominate healthcare time. We’ve already seen that long term conditions account for 70% of health and social care budgets in England but, in money terms that means £7 in every £10 of budgets totalling some £152bn (King’s Fund13 and UK Public spending Review14), i.e. long term conditions cost the UK over £100bn a year in 2015/16 and rising. That is clearly not a sustainable model to carry into the future but there are new ways of thinking being considered as alternatives as we’ll see in the following article.

WWW.PRIMARYCAREREPORTS.CO.UK | 11

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

A New Way of Managing Long Term Conditions Peter Dunwell, Medical Correspondent

Patients can become partners in their care programme rather than recipients of pre-ordained care packages

There is now an urgent need to transform how GPs treat people with these conditions, and to support people themselves to take more control over their health

12 | WWW.PRIMARYCAREREPORTS.CO.UK

The Challenge of Long Term Health Conditions Picking up from where Camilla Slade left off in the preceding article, it is no exaggeration to say that the situation with long term conditions represents a crisis for the UK’s health and social care systems. In January 2014 Dr Martin Mcshane, who was NCD until January 2016, responsible for long term conditions in the UK NHS, expressed that view in an interview for The Guardian15, “The challenges posed by patients with chronic medical conditions are so great that they represent the ‘healthcare equivalent to climate change’ and must force the NHS to undertake a major rethink of how it cares for such patients...” he explained. In the same article, Professor Chris Ham, Chief Executive of the King’s Fund Health think tank, added, “There is now an urgent need to transform how GPs treat people with these conditions, and to support people themselves to take more control over their health.” The European Observatory on Health Systems and Policies, in its report ‘Managing chronic conditions’16 agrees but with an important caveat; “The anticipated benefits include improved quality of care and, by preventing or delaying complications, reduced (emergency) admissions and long hospital stays, although initial evidence from pilots casts some doubt on whether this can be achieved.” And there, in the last sentence, lies the rub: how to bring about a situation where patients take greater responsibility for the management of their own long term conditions. The King’s fund17 suggests a similar caveat in that “Self-management programmes have been shown to reduce unplanned hospital admissions for chronic obstructive pulmonary disease [COPD] and asthma (Purdy 2010) and to improve adherence to treatment and medication (Challis 2010), but evidence that this translates into cost savings is more equivocal. A cost analysis performed in the United States

did indicate that expenditure in other parts of the system can be reduced (Stearns et al 2000).” In short, self-care for people having long term conditions is good but turning that good into real cost savings will require more than just good intentions.

Self-Care, a Patient Centred Way of Managing Long Term Conditions Among other things, it will require that patients with long term conditions understand that selfcare will hand them a high degree of control over their own lives, self-determination and self-management if they will undertake some responsibilities such as to take their medicine properly, do some exercise and tackle those lifestyle issues (smoking, alcohol, over eating, lack of exercise) which might have contributed to or now be exacerbating their condition. They also need to understand and be confident that self-care does not mean coping without support. NHS England in its paper ‘Enhancing quality of life for people with long-term conditions’18 explains, “The NHS should be supporting people to be as independent and healthy as possible if they live with a long-term condition such as heart disease, asthma or depression, preventing complications and the need to go into hospital. If they do need to be treated in hospital, the NHS should work with social care and other services to ensure that people are supported to leave hospital and recover in the community.” The paper sets out areas of action, including ‘Helping patients take charge of their care’. The ‘responsibility with self-care’ theme is also present in the European Observatory on Health Systems and Policies report (above) “Patients and their families need to be partners rather than passive recipients; all staff, not just doctors, need to be viewed as part of the solution and encouraged to innovate and search for better

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

ways of delivering appropriate care. Many of these diseases and their painful complications could have been prevented by earlier measures to prevent obesity and to encourage smoking cessation; the ‘lessons learned’ need to be present in more than new care pathways but also expressed in ways to prevent many of these crippling diseases.” It pulls no punches and urges clinicians and those delivering care not to do so, either. However, it is also acknowledged that selfcare needs a care plan if it is to work which the Royal College of GPs (RCGP)19 sums up as, “Care Planning is about making more effective the dialogue between the patient and GP that is so vital to the care we provide every day and changing the doctor-patient relationship into a doctor-patient partnership.”

What is Self-Care? There are several ways in which that partnership for self-care and responsibility can be achieved but they all require that both the patient and the care deliverer understand how this model differs from traditional care models and learn the new techniques required to make it work.

One support system that sits between traditional care models and wholly self-care models is telehealth and telecare of which the UK Department of Health (DoH) explains20, “We want to help people to manage their own health condition as much as possible. Telehealth and telecare services (which include items like blood pressure monitors and alarms for old people who have fallen over and need help) are a useful way of doing this.” Moreover, DoH research revealed that use of this self-care involvement reduced death rates by 45%, visits to accident and emergency by 15% and emergency admissions to hospital by 20%. The UK NHS supports self-care as a means for patients to regain control of their lives21. “Living with a long-term condition brings challenges and it’s important to have the confidence, support and information to take control of your condition. This is called self-care, which means looking after yourself in a healthy way, whether it’s taking your medicine properly or doing some exercise.” Importantly, the paper continues to assure patients that self-care does not mean being left alone but can bring enormous benefits, as the next article sets out.

WWW.PRIMARYCAREREPORTS.CO.UK | 13

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

Self-Care in Action John Hancock, Editor

How self-care works, the benefits it offers and who might be ready to be coached for a self-care programme

A self-care programme is not so much an alternative to traditional care models as a collaborative method of delivering care in which the patient is an active and key partner

HE PREVIOUS articles have laid out the challenge of long term conditions, explained what it means to live with a long term condition and introduced the idea that new thinking on care models is available for patients who are capable of and willing to participate as partners in their own care programme. This final article will explore the self-care model a little more, consider how it can improve quality of life and outcomes for those who use it and set out what is entailed in selecting a patient for a self-care programme, and, as importantly, preparing them for the programme and supporting them in the programme.

The Self-Care Model The King’s Fund22 offers a summary of self-care or self-management to be viewed, “in two ways: as a portfolio of techniques and tools to help patients choose healthy behaviours; and as a fundamental transformation of the patient-caregiver relationship into a collaborative partnership.” Tracy Watts writing for The Health Foundation23 goes further, “… self-management is complicated. All patients self-manage to some degree already because they have to – most of the time they are not meeting with doctors or nurses and they have to manage their condition at home. Where they are doing this successfully then the challenge is helping them to recognise this, and where they are struggling the challenge is to support them in making behaviour changes.”

Benefits of a Self-Care Programme Another term used is ‘patient empowerment’, which embodies one of the key benefits of a self-care programme. As early as 2011, BMC Health Services24 stated, “Patient empowerment is viewed by policy makers and health care practitioners as a mechanism to help patients with long-term conditions better manage their health and achieve better outcomes.” It certainly seems that the awareness that comes with self14 | WWW.PRIMARYCAREREPORTS.CO.UK

care makes it more likely that patients will be able to act sooner to better control symptoms and avoid complications. As well as benefits for the patient, there are benefits for the system in self-care models. The Royal College of General Practitioners (RCGP)25 explains these as, “Giving patients the autonomy to self-manage their condition, with GP and primary care support, saves the NHS time and money and will lead to reduced hospital admissions, reduced A&E attendance and reduced medication expenditure, as well as improved patient satisfaction.” And, according to the same paper, for every £100 spent encouraging self-care, some £150 worth of benefits can be delivered. Beyond patients, their GPs and the healthcare system, family, friends and carers for people with long-term conditions will also enjoy the benefits of a more confident and satisfied patient with less need to make visits to clinical facilities.

Making a Self-Care Model Work While the idea of people with long term conditions taking responsibility for elements in their own care programme is attractive, it is unlikely to work unless the patient has access to training and support. A self-care programme is not so much an alternative to traditional care models as a collaborative method of delivering care in which the patient is an active and key partner. The benefits are demonstrable, as previous articles have shown, not only in how a patient feels when they are not simply a treatment unit in the healthcare system, but also through real improvements in outcomes. In the same way that any care plans will be regularly visited, self-care plans need to be updated to reflect the changing needs of patients either whose condition is improving, who become affected by multiple comorbidities or whose condition is progressive and therefore bound to change with time. The plan will also need to be tailored to each person so that their ownership of it is natural.

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

The RCGP (above) again; “… when patients self-care and equally feel supported in doing so, they are more likely to have greater confidence and a sense of control, to have better mental health and less depression and to reduce the perceived severity of their symptoms, including experienced pain. These benefits combined can improve the quality of life for a patient with a Long Term Condition immeasurably.” The paper also highlights the benefits for GPs who, with less time taken by routine visits, can devote more time and resource to improve their services for all patients which, in turn, will result in further efficiencies and, perhaps, less people developing long term conditions.

Who Would be Right for Self-Care? Of course, not every patient will be right for a self-care model. To help commissioning practices decide the best plan for a patient, the UK Department of Health (DoH) in its paper, ‘Improving the health and well-being of people with long term conditions’26 offers a useful set of practical suggestions and ‘Top Tips’.

Summarising the Health Coaching approach used in the East of England, the UK National Health Executive27 sets out the stages that a clinician should cover in assessing a patient‘s suitability for self-care and the conditions under which it will work best. It also identifies the changes in roles between patient and clinician to support such an approach and describes the role of a coach; “The coach is a healthcare professional trained in behaviour change theory, motivational strategies, and communication techniques, which are used to assist patients to develop intrinsic motivation and obtain skills to create sustainable change for improved health and wellbeing.” While projections for the numbers of people with long term health conditions might vary, none of them suggest either low or falling numbers and the experience of those working in the field is that the prevalence of such conditions is likely to continue to rise as the population ages and unhealthy lifestyles prevail. So settling on a better model for care of people with long term conditions is sensible for any healthcare system.

WWW.PRIMARYCAREREPORTS.CO.UK | 15

IMPROVING CARE FOR PATIENTS WITH LONG TERM CONDITIONS THROUGH CLINICAL HEALTH COACHING

References: 1

Royal College of General Practitioners (RCGP) ‘Care Planning Improving the Lives of People with Long Term Conditions’ www.rcgp.org.uk/~/media/Files/CIRC/Cancer/Improving%20the%20Lives%20of%20people%20with%20LTC%20-%202012%2005%2009.ashx

European Observatory on Health Systems and Policies, ‘Caring for people with chronic conditions’ www.euro.who.int/__data/assets/pdf_file/0006/96468/E91878.pdf

BMC Health Service Research http://bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-13-263

8 May 2015 UK Government policy: long term health conditions

https://www.gov.uk/government/publications/2010-to-2015-government-policy-long-term-health-conditions/2010-to-2015-government-policy-long-term-health-conditions

5 The King’s Fund ‘Long term conditions and multi-morbidity’ http://www.kingsfund.org.uk/time-to-think-differently/trends/disease-and-disability/long-term-conditions-multi-morbidity 6 The Guardian, ‘NHS could be ‘overwhelmed’ by people with long term medical conditions’ http://www.theguardian.com/society/2014/jan/03/nhs-overwhelmed-long-term-medical-conditions 7

NICE https://www.nice.org.uk/news/article/integrated-care-critically-important-for-older-people-with-social-care-needs-and-multiple-long-term-conditions

IPPR, ‘Patients in control’ www.ippr.org/files/publications/pdf/patients-in-control_Sept2014.pdf?noredirect=1

Centre for Mental Health, ‘Long term conditions and mental health: the cost of co-morbidities’ www.centreformentalhealth.org.uk/long-term-conditions

The BMJ, ‘Long term effect of depression care management on mortality in older adults: follow-up of cluster randomized clinical trial in primary care’ www.bmj.com/content/346/bmj.f2570

European Observatory on Health Systems and Policies, ‘Caring for people with chronic conditions’ www.euro.who.int/__data/assets/pdf_file/0006/96468/E91878.pdf

UK Department of Health www.yearofcare.co.uk/sites/default/files/pdfs/dh_improving%20the%20h%26wb%20of%20people%20with%20LTCs.pdf

The King’s Fund, ‘The [2015] Budget: Health and Social Care Funding’ www.kingsfund.org.uk/sites/files/kf/field/field_publication_file/Budget%20briefing%20July%202015%20final_0.pdf

UK Public Spending Review www.ukpublicspending.co.uk/current_spending

The Guardian, ‘NHS could be ‘overwhelmed’ by people with long-term medical conditions’ www.theguardian.com/society/2014/jan/03/nhs-overwhelmed-long-term-medical-conditions 15

European Observatory on Health Systems and Policies, ‘Managing chronic conditions’ www.euro.who.int/__data/assets/pdf_file/0008/98414/E92058.pdf

King’s Fund www.kingsfund.org.uk/projects/gp-commissioning/ten-priorities-for-commissioners/self-management

NHS England www.england.nhs.uk/resources/resources-for-ccgs/out-frwrk/dom-2/

8 May 2015 UK Government policy: long term health conditions

www.gov.uk/government/publications/2010-to-2015-government-policy-long-term-health-conditions/2010-to-2015-government-policy-long-term-health-conditions

NHS Choices, ‘Your health, your way. Your NHS guide to long-term conditions and self care’ www.nhs.uk/planners/yourhealth/Pages/Yourhealth.aspx

King’s Fund www.kingsfund.org.uk/projects/gp-commissioning/ten-priorities-for-commissioners/self-management

The Health Foundation www.health.org.uk/blog/self-management-it%E2%80%99s-easy-isn%E2%80%99t-it

BMC Health Service Research http://www.bmchealthservres.biomedcentral.com/articles/10.1186/1472-6963-13-263

UK Department of Health www.yearofcare.co.uk/sites/default/files/pdfs/dh_improving%20the%20h%26wb%20of%20people%20with%20LTCs.pdf

National Health Executive http://tiny.cc/wbb08x

16 | WWW.PRIMARYCAREREPORTS.CO.UK

Primary Care Reports The leading specialist online research and networking resource for General Practitioners and other senior primary care professionals.

• Up to the minute news and other content available to all site users on a free-of-charge, open access basis. • Qualified signed up members are able to access premium content Special Reports and interact with their peers using a variety of advanced online networking tools. • Designed to help users identify new solutions, understand the implications of different choices and select the best options available. • Thought Leadership – Advice and guidance from internationally recognised primary care key opinion leaders. • Peer Input – Contributions from senior primary care professionals. • Independent Editorial Content – Expert and authoritative analysis from award winning journalists and leading industry commentators. • Unbiased Supplier Provided Content. • Designed to facilitate debate. • Written to the highest professional standards.

Visit: www.primarycarereports.co.uk