Fundamental Aspects of Long Term Conditions

By Helen McVeigh

Underpinned by relevant epidemiology, demography and policy, this book explores the management of long-term conditions. It discusses communication and multidisciplinary working, including discussion of the student nurse's role. Each chapter includes learning points and uses a questioning/reflective approach, which draws on the reader's own experiences.

• Language: English
• Publisher: Mark Allen Group
• Release date: May 23, 2016
• ISBN: 9781856424783

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Title page

Fundamental Aspects of Long-Term Conditions

A Guide for Students of Nursing and Health

Edited by Helen McVeigh

Publisher information

2016 digital version converted and published by

Andrews UK Limited

www.andrewsuk.com

Quay Books Division, MA Healthcare Ltd, St Jude’s Church, Dulwich Road, London, SE24 0PB

© MA Healthcare Limited 2009, 2016

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 prior permission from the publishers

Note

Health care practice and knowledge are constantly changing and developing as new research and treatments, changes in procedures, drugs and equipment become available.

The author and publishers have, as far as is possible, taken care to confirm that the information complies with the latest standards of practice and legislation.

Contributors

Jasmin Amoroso MA, B. Ed (Hons) Practice Educator, Specialist Practitioner DN, RN

Senior Lecturer in Nursing, De Montfort University, Leicester

Gill Ayling

Full time carer

Jacqui Day MA, PG Dip Healthcare Education, RM, BA (Hons)

Senior Lecturer in Mental Health Nursing, De Montfort University, Leicester. Jacqui is the academic lead for mental health within the university

Ron Eldridge MA, RGN, RMN, NDN Cert

Independent Nurse Prescriber and Community Matron, Leicester City Community Health Service

Karen Ford MSc, BSc(Hons), RHV, RGN

Senior Lecturer in Primary Care and Non-Medical Prescribing Lead, De Montfort University, Leicester

Chris Knifton SBStJ, MSc, MA, LLB(Hons), BSc(Hons), FAETC, RNLD, Dip SW, Dip AROM, Dip Counselling and Psychotherapy, Dementia Care Mapper (Adv)

Senior Lecturer in Nursing, De Montfort University, Leicester

Deborah Lewis MSc, RGN, DN Cert

Senior Lecturer in Cancer and Palliative Care, Birmingham City University Faculty of Health, Edgbaston, Birmingham

Jean Martey RN, Independent Prescriber, City Guilds 7303

Parkinson’s Disease Nurse Specialist; Secretary to the National Parkinson’s Disease Nurse Association

Helen McVeigh MA Learning and Teaching, BSc (Hons) Community Health Nursing, RNT, RGN

Senior Lecturer in Primary Care, De Montfort University, Leicester

Teresa Pratt RNMH, Dip He Mental Health, BSc Specialist Nursing Practice (Mental Health), C & G Further and Adult Education Teachers’ Certificate

Community Mental Health Nurse, Leicestershire Partnership Trust

Paul Rigby MA. BA (Hons). RMN. Dip Ad Ed. Dip Nurs. Dip Health Care Practice (THORN). Senior Lecturer

Senior Lecturer in Mental Health Nursing, De Montfort University, Leicester; Community Mental Health Team, Leicestershire Partnership NHS Trust

Tony Robinson

Person with Parkinson’s

Ruth Rojahn MA Learning and Teaching, BA Nursing Practice, PG Dip (Educ), RGN, DN Cert, CPT (DN)

Senior Lecturer in Primary Care, De Montfort University, Leicester

Janice Strefford BSc (Hons) Community Health Nursing, RN

Practice Nurse

Dr Ira Unell PhD

Senior Lecturer in Substance Misuse and Course Director for the MSc in Drug and Alcohol Treatment at Leicester University Medical School

Cheryl Utecht MA, BA(Hons), RGN, ONC, DN(Cert)

Principal Lecturer at De Montfort University, Leicester

Acknowledgements

I would like to express my appreciation to all those who supported me in this venture. To colleagues, practitioners and individuals who freely gave their time and agreed to contribute.

To John for his encouragement and support.

To Ruth for listening and proof reading.

To Gary for his patience and support.

Helen McVeigh

December 2009

Foreword

Long-term conditions is an extremely important addition to the Fundamental Aspects series. The implication of increasing life expectancy is that many people now live with what have been termed ‘long-term conditions’. Most people over the age of 50 years have some form of long-term health problem. For most, this is a relatively minor and easily treatable condition, such as raised blood pressure, some joint pain, eyesight deterioration, or mild diabetes, while for others the condition may be more serious.

Possibly one of the most distinguishing features of any long-term condition is the effect it has on the lifestyle not only of the person with the condition, but their family, friends and colleagues. This is brought out with considerable force in the chapters written by ‘patients’ and ‘carers’. As nurses, so often we only see the immediate medical problem the patient is presenting with, and while that is important in terms of assessment and management, it must not be seen in isolation from the holistic picture, which so often, only the patient is aware of - hence the concept of the ‘expert patient’.

In editing this book, Helen McVeigh has brought together a number of clinical specialists, university lecturers, patients with long-term conditions and carers. As you read through individual chapters and then the complete book, you will begin to appreciate not only the medical implications of long-term conditions, but in addition you will gain an insight to what it feels like to be labelled in this way. If you can have some empathy into that experience, then you will be a far more understanding nurse.

John Fowler

Phd MA BA DipN Cert.Ed. RGN RMN RCNT RNT

Principal Lecturer in Nursing

De Montfort University

Series Editor

Fundamental Aspects of Nursing

Introduction

Providing support and care for individuals with a long-term condition is an essential feature of modern health care. Over 15 million people in England currently have a long-term condition, and it is predicted that these numbers will continue to rise (Department of Health [DH], 2008). The impact of long-term conditions will affect every one of us in some way. For many of us this may be first hand as a sufferer, for others it will be in providing care or support to a partner, family member or friend.

The DH defines long-term conditions as ‘those that cannot at present be cured but can be controlled by medication or other therapies’ (DH, 2007). Living with a chronic illness offers no rosy end-point; unlike acute illness, where full recovery is expected, there is no return to normal health. The length, progress and severity of the illness will mean that the individual has to come to terms with living with their condition. For the individual this will often necessitate lifestyle changes and modifying expectations for the future.

As nurses, our understanding of how a long-term condition influences an individual is often guided by our medical and physical knowledge of disease processes. We need to remember that living with a chronic illness will impact on all aspects of life. There will be significant psychological, social and emotional costs of living with a long-term condition. A holistic nursing perspective acknowledges that practice should be underpinned with a comprehensive understanding of all factors that impact on the quality of life for an individual; physiological, psychological, social, spiritual and environmental. We also need to understand and acknowledge the experiential experiences of the individuals we care for. In addition, nursing practice needs to evolve in response to the changing expectations of individuals, society and healthcare provision. Our success in providing effective and long-lasting quality interventions may well be reliant on successfully balancing our understanding of all these aspects of care.

This book aims to raise your awareness of long-term conditions, their management and the implications of living with chronic illness. The book takes a patient-centred, holistic approach, which aims to help you understand that an individual’s response to having a long-term condition is both complex and unique to them. The focus throughout explores long-term conditions in relation to the adult patient. Although some long-term conditions may begin in childhood, the concept of disease management in childhood and the implications this raises is considered to be a separate topic.

Chapter 1 introduces the subject and places long-term conditions in context, and looks at the impact current policy has on healthcare provision. It explores the notion of chronic illness and identifies a framework for management which introduces the concepts of self-care and the expert patient. The themes raised in this chapter are echoed in the approach and structure of subsequent chapters.

The following chapters focus on specific conditions taking a proactive approach that considers management, the role of relevant services, coping strategies, quality of life and self-management. While chapters have focused on individual conditions, it is important to be aware that many individuals may have more than one condition, or indeed complex comorbidities. It is also important to recognize that many conditions will shorten life expectancy and Chapter 14 considers the topic of palliative care and end-of-life decisions. The issue of lifestyle choice and the influence this has on both the development of and progress of long-term conditions is of particular relevance. Chapters 12 and 13 explore the issues of obesity and alcohol use, while smoking is discussed within Chapter 5 in relation to chronic obstructive pulmonary disease (COPD).

Management is not just the remit of health care, as living with a long-term condition affects all aspects of a persons’ life; home, work, relationships, environment, spirituality, and psychological wellbeing. The ‘real life’ impact of living with a long-term condition is considered in Chapter 8, which highlights the personal reflection of a patient. Coping with chronic illness impacts on the quality of life of not only the individual concerned and Chapter 9 emphasizes the personal reflection of a carer. A coordinated approach involving the patient, carers, primary care, secondary care, and social care provision is fundamental to effective management strategies and the provision of high quality care that meets the needs of both the individual and communities. Chapter 15 explores the concept of multi-professional collaboration and identifies the myriad of services that are available to support individuals in managing their conditions, while Chapter 16 considers the future and the use of technology in managing and supporting health care.

Using this book

The chapters of this book have been designed with a structured approach. Chapters are introduced with a list of suggested learning outcomes. Each chapter highlights the epidemiology and demography of specific conditions and draws attention to relevant policy supporting health care. A needs-led focus on the patient is used, including physical, social, psychological, spiritual, cultural, and environmental issues. Many of the contributors have used case history examples and scenarios to illustrate aspects of need and the issues discussed. Within each chapter, you will find questions related to content and points for reflection.

This book sets a challenge to student nurses and those embarking on their nursing career pathway, that supporting patients with long-term conditions is the responsibility of all nurses. An individualized, person-centred approach is fundamental to care provision. This book should make you think about how you can make a difference in the lives of those managing with a long-term condition. It should enable you to take a holistic perspective in the care, management and support of these patients.

‘When you leave the clinic you still have a long term condition, when the visiting nurse leaves your home you still have a long term condition. In the middle of the night you fight the pain alone. At the weekend you manage without your home help. Living with a long term condition is a great deal more than medical or professional assistance.’

Department of Health (2005:2).

References

DH (2005) Supporting people with long term conditions. An NHS and social care model to support local innovation and integration. DH, London. ref: 4230

DH (2007) Long-term conditions: Background. http://tinyurl.com/kw6n3v (accessed 15 December 2009)

DH (2008) Raising the profile of long term conditions: A compendium of information. DH, London. ref: 8734

Chapter 1: Long-term conditions in context

Helen McVeigh

The management of long-term conditions is a great challenge for the health services. This chapter places long-term conditions in context by exploring the factors influencing the effective management of chronic disease, and identifying the policies that underpin the drive to provide appropriate services to meet this need. It examines the role of practitioners in meeting this agenda and highlights some of the challenges and problems that may arise.

Reading this chapter and reflecting on your own experiences should enable you to achieve the following learning outcomes:

An understanding of how long-term conditions can be effectively managed and the implications for healthcare provision

A raised awareness of the policies and strategies underpinning the long-term conditions agenda

Identify the roles and scope of practice of health professionals in managing long-term conditions

An insight into the concept of self-management.

Background

Since its inception in 1948, the NHS has aimed to provide a service that offers high quality health care based on a core principle to meet the needs of everyone, regardless of the ability to pay. In recent years, the Government has recognized that the biggest challenge to healthcare provision lies in the effective management of long-term conditions. Approximately 15.4 million people in England are living with a long-term condition - this figure equates to approximately 60% of the adult population (Office for National Statistics [ONS], 2006). The majority of these individuals are likely to be elderly. Estimates suggest that three quarters of those over 75 years will suffer from chronic illness and half of those will have more than one condition (Department of Health [DH], 2005a). There is also inequity in the distribution of chronic disease as incidence is frequently higher in disadvantaged communities (DH, 2008a).

It is important to consider the root causes of the high burden of chronic disease. Twentieth century advancements have made fundamental changes to the demographic make-up of our population. The Western world has seen increasing life expectancy, falling birth rates in developed countries and an increasing older population, in part a result of the post-war ‘baby boom’ generation reaching retirement age. Forecasts indicate that the level of chronic disease is set to increase, with the percentage of those over 65 years of age living with a long-term condition likely to double by 2030 (World Health Organization [WHO], 2005). This problem is not just confined to the Western world. Globally, 60% of all deaths can be attributed to chronic disease (WHO, 2005). Projections for 2030 indicate that three out of the four leading causes of global mortality will be a result of chronic disease, notably ischaemic heart disease, cerebrovascular disease (stroke), and chronic obstructive pulmonary disease (COPD) (WHO, 2007).

Reflection

Consider why there has been an increase in life expectancy

What health and social factors may have influenced this?

The past century has seen huge changes in our living and working environments, with better working conditions, improvements in housing and sanitation, and a raised awareness of public health. In 1901, life expectancy was only 48.5 years for men and 52.4 years for women, and mortality rates indicate that infectious disease was the most common cause of death, with 25% attributable to respiratory infectious disease (Griffiths and Brock, 2003; ONS, 2008a). Premature death was also a significant factor, with infant mortality accounting for 25% of all deaths (Griffiths and Brock, 2003). Early 20th century advances saw the introduction of new medicines, the development of antibiotics, the development of insulin, and the implementation of mass immunization and vaccination programmes. Increasing wealth and accessibility to a variety of foods has influenced diet and nutrition.

Furthermore, since the introduction of the NHS in 1948, there have been great advances in clinical science and significant technologies that enable us to live for longer. Surgery has become increasingly sophisticated, medicines and treatments have been developed to control and limit the progression of disease, computerized technology has revolutionized communication, while screening and immunization programmes help to prevent or identify disease earlier. Current life expectancy in the UK is 76.9 years for men and 81.3 years for women (ONS, 2008b). The impact of ageing and living with chronic disease can be seen if we look at these figures in relation to healthy life expectancy and disability-free life (Table 1.1).

As well as an increased life expectancy, personal health expectations have been raised - we all want the opportunity to live high-quality, healthy lives, free from illness and disability. Our aspirations for the future in terms of our own health may be to live longer, but also to live better; in other words, we expect a higher quality of health. However, not all advances have led to a healthier, longer life, as some of the lifestyle choices we make have negatively impacted on the burden of chronic disease, placing increasingly high risk on the development of chronic conditions. Evidence shows that respiratory deaths are no longer high as a result of infectious disease, but risk factors such as smoking have elevated their incidence and tobacco-related death is likely to be responsible for around 10% of deaths globally by 2015 (WHO, 2007). Nutritional excesses and the availability of cheaper products high in fat have led to rising levels of obesity, accounting for at least one death in every 13 within the EU (Banegas et al, 2003).

The effective management of long-term conditions is highlighted as a key priority of the DH. People with a long-term condition are disproportionate users of the NHS (Wilson et al, 2005). Figures indicate that:

2% of patients with long-term conditions account for around 30% of unplanned hospital admissions (DH, 2005b)

80% of GP consultations relate to long-term conditions (Scott, 2004)

5% of inpatients account for 49% of all inpatient bed days (DH, 2008a)

72% of all hospital bed days are for patients with a long-term condition (DH, 2008a)

An estimated 50% of medication is not taken as prescribed (DH, 2005c).

Approximately 78% of healthcare spending in the UK can be linked with the management of long-term conditions. If we also consider projections for an increasing ageing population, it is likely that in the future this figure will rise (Fletcher, 2005; DH, 2008a). In fact, by 2020 the WHO predict that chronic disease will be the primary cause of disability and the most costly problem for health services, not only in the UK, but worldwide (WHO, 2002; 2005).

To meet these spiralling needs, the Government identified a framework aimed at improving care for those with long-term conditions (DH, 2004a; 2005b). The foundations for this policy direction were initiated within the NHS Plan (DH, 2000) and echoed in the National Service Framework for Long-Term Conditions (DH, 2005c), which highlighted the need to focus healthcare priorities towards effectively managing long-term conditions:

‘... to improve health outcomes for people with long-term conditions by offering a personal care plan for vulnerable people most at risk; and to reduce emergency bed days by 5% by 2008 through improved care in primary care and community settings.’

Department of Health (2005b: 3)

Identified aims include ensuring communities have an effective approach to the care and management of long-term conditions, reducing the reliance on secondary care, strengthening primary care provision, and ensuring care is patient-led and personalized to individual requirements. This policy direction clearly shifts the responsibility for the effective management of long-term conditions into the primary care arena. Although key aims are the improvement of health, underlying aims are focused on reducing the financial burden of avoidable healthcare use and particularly within secondary care (Dixon et al, 2004; Hunter, 2005). Our Health, Our Care, Our Say (DH, 2006) and Choosing Health (DH, 2004b) make it clear that better preventive and earlier intervention strategies are integral to improved health and wellbeing. In addition, increasing control and personal choice for individuals over their healthcare needs, and improving access to services and tackling health inequalities are highlighted as central to providing effective services. Our Vision for Primary and Community Care (DH, 2008b) indicates that by 2010 all 15.4 million people with a long-term condition should have a personalized care plan to support their needs. Lord Darzi (DH, 2008c) notes that ‘giving patients more control over their care including the information to make healthy choices ... will reduce their chances of poor health and dependency on the NHS’ (DH, 2008c: 37). Overall, policy direction is underpinned by an approach that reflects aspirations for healthier futures.

The framework for managing long-term conditions, the ‘NHS and social care model’ (DH, 2005b), identifies an infrastructure using a range of resources: the health and social care environment, local community resources, decision support tools, and clinical information systems (Figure 1.1). Management is met through a variety of levels of care:

Case management

Disease management

Supported self-care

Promoting better health.

Figure 1.1. The NHS and social care long-term conditions model (From: DH, 2005b)

The model aspires to better prepared and proactive health and social care teams, and strives for better informed and empowered patients. Overall aims focus on the following principles (DH, 2005b; 2008a):

Earlier detection of chronic disease

Good control to minimize the effects and reduce complications from chronic disease processes

Provide effective medicines management

Reduce the number of crises for patients

Promotion of independence and the empowerment of patients

Prolong and extend the quality of life for those with a long-term condition.

The delivery system examines the profile and needs of patients with long-term conditions within the UK. The results can be viewed as a triangle with the bulk of patients living with a long-term condition capable of self-management and situated at the bottom tier of the triangle, while the 3–5% of those with the most complex needs occupy the top tier (Figure 1.2).

Figure 1.2. Delivery system Long-Term Conditions (LTC) model (From: DH, 2005b)

Analysis of the composition of the needs of these individuals indicates that support and/or intervention may be required on three levels (DH, 2005b):

Level 1: approximately 70–80% of those with long-term conditions, those requiring more support to self-manage

Level 2: high-risk patients who need active management and ongoing monitoring or review

Level 3: approximately 3–5% of those with complex, often multiple conditions who require a case management approach.

The overall objective is to target health intervention according to level and type of need. Those individuals identified as the highest risk are inevitably the most frequent users of NHS resources and may require more intensive support.

What is a long-term condition?

If we are examining long-term conditions, it is useful to define what we mean by chronic illness. In the simplest terms, it is illness that cannot be cured or as put in the words of one patient, ‘something that does not get better, it is always there’. As such, managing subsequent health care moves away from traditional expectations as a health professional, to improve health or make someone better. We need to recognize that managing long-term conditions is a complex and life-long process for which the health professional may provide greater or lesser input at any one time. Although we acknowledge that chronic disease and illness may mean there is no cure, the great majority of people diagnosed with a chronic condition only seek to proactively manage their illness when they feel unwell. Although some chronic disease is characterized by ever-present symptoms, for others (e.g. diabetes, coronary heart disease) the asymptomatic element may lead patients to deny the existence and increases the potential for making inappropriate health/lifestyle choices. For many patients with a long-term condition, what is important is to know the difference between feeling well and being well.

Consider the chronic asthma sufferer who feels well and is able to take part in all the work and leisure activities he/she would like to, apart from occasional breathlessness on exertion. This person may only access healthcare support at times of ill-health (e.g. a chest infection following influenza), which has caused an exacerbation in his/her symptoms. Patients require assistance to maintain their health status even if they are fully aware of their illness and the impact this has on them. The challenge to the health professional lies in identifying the level of support required and being able to access those individuals to offer timely advice or intervention. Consider again the asthmatic person whose medication includes both preventive treatment (e.g. Seretide, beclametasone) and that giving instant relief (e.g. salbutamol); at the notion of feeling well, he/she has stopped taking his/her preventive medicine a number of weeks/months before the acute episode of a chest infection. Patients often require ongoing support to understand their condition and the implications of the choices they make. In making their choices, it is important they can make an informed decision or, as Gawande (2007) notes, that they know which odds they are playing. The challenge is to find the balance between providing health advice and support in ways which are acceptable and understandable, and to acknowledge that decisions are often made in the context of not only the knowledge of their disease, but beliefs, values, responsibilities, and personal choice.

Many patients will have more than one condition, particularly when examining the profile of those with advancing age. In some cases one condition may lead to the development of another. For example, poorly-controlled diabetes may lead to renal failure. Although there are a myriad of conditions that come under the umbrella of a ‘long-term condition’, the main focus of service provision is targeted at those conditions that are either more prevalent and/or impact highly in terms of financial burden to the NHS. Coronary heart disease accounts for 1 in 5 deaths in men and 1 in 6 in women (ONS, 2008b); nearly 7 million people in the UK are hypertensive (Quality and Outcomes Framework [QOF], 2006/07); heart failure affects around 707 000 (Allender et al, 2008); there are 2.5 million diabetics in the UK, with projections that this will rise to 3 million by 2012 (Diabetes UK, 2009); there are 766 000 COPD sufferers who are the most expensive users of NHS budget (British Thoracic Society, 2006); and there are around 8.5 million people in the UK with arthritis (Arthritis Research Campaign [ARC], 2009). Although it is paramount that these highly visible conditions are effectively targeted, it is equally important that health provision considers the needs of all those with a long-term condition.

Case management

The 3–5% of high-risk patients identified as those with more complex needs require intensive support using a case management approach. Case management describes a proactive approach to care delivery, which will identify those individuals with a long-term condition who are most at risk and facilitates the management of care in partnership with the individual and their carers (NHS National Workforce Projects, 2006). The case manager coordinates the patient’s journey through health and social care services using a holistic approach that encompasses assessment, planning and the delivery of individualized care. Scott (2004) suggests this role of care coordinator can be likened to that of a ‘search engine in human form’, enabling patients to effectively negotiate their path through the NHS. Case management principles highlighted in the Government’s long-term condition agenda indicate that the community matron would act as the case manager. The fundamental aims of this role are to improve quality of life and ensure that a patient’s condition remains stable (DH, 2005a). Factors such as being adaptable to the needs of local communities, and the role of educating other health professionals and local agencies in the proactive management of long-term conditions are also significant (Billingham, 2005).

The role and scope of the community matron is a significant evolutionary step for primary care nursing. Although there may be local variations in the interpretation of the role across the country, a community matron is an experienced and skilled nurse who will provide advanced nursing care combined with case management in order to improve quality of life, maintain wellbeing and manage acute exacerbations of those with complex needs in chronic disease (DH, 2005a). Working as a high-level practitioner with complex care packages requires additional competency and a wide range of skills (Table 1.2). To function effectively, these should include (DH, 2005d):

Diagnostic and assessment skills

Aetiology and treatment options

Skills in change management

The role of primary care in managing acute sector demand

Case management principles

Medicines management and experience in nurse prescribing.