CLINICAL FOCUS
Practical barriers to achieving self-management of lymphoedema Garry Cooper Adult Lecturer, School of Nursing, Midwifery and Social Work, Birmingham City University; British Lymphology Society Trustee Email: [email protected]
ABSTRACT
Supporting patients in achieving the goal of self-management of their longterm condition is fraught with challenges. This support may begin with matters that can be addressed through education or training. However, some matters cannot be controlled, such as the impact of the ageing population. This article proposes and discusses some of the current factors that affect compression therapy and the overarching goal of self-management in this area of treatment.
KEY WORDS w Patient self-management w Staff education w Patient support w Collaboration
S14
care closer to home within the constraints of a dwindling budget (Dowler, 2011). However, this is only one issue affecting the ability to deliver day-to-day care to patients in the wider context.The ability to remove these barriers goes beyond a single person and a willingness to be an advocate for the patient. It requires a collective consciousness and willingness to unite towards an agreed common goal for change, which would bring about an end to a perpetual cycle of ignorance and lack of recognition from a national perspective.
General factors affecting lymphoedema and compression therapy The factors that have been selected for discussion and their impact upon compression therapy include prevalence figures, knowledge/awareness, staffing levels and the ageing population. How these are resolved or tackled is part of a larger debate, particularly given that they only represent some of the challenges.
Patient self-management Focusing upon self-management is a mandate to
‘ensure the NHS becomes dramatically better at involving patients and their carers, and empowering them to manage and make decisions about their own care and treatment’. (Department of Health, 2012b) There is also evidence indicating that patients who are an active part of their self-management through effective support and education experience improved health outcomes (Epping-Jordan et al, 2004; Greene and Hibbard, 2012; Hibbard and Greene, 2013). There is also a budgetary and cost impact relating to this group of patients, as it is suggested they account for at least 50% of all GP appointments, 64% of outpatient appointments and 70% of all inpatient bed days (DH, 2012a). To the best of the author’s knowledge, research has not yet established how many patients with lymphoedema and chronic oedema have multiple comorbidities, and how many are frequent users of primary and acute services. However, the research regarding the impact of both conditions within the physical/psychological context infers that they could be part of this group (for example, suffering from cellulitis or depression (Cooper, 2012)). The focus
© 2014 MA Healthcare Ltd
L
ymphoedema and chronic oedema are long-term conditions that are incurable. The condition has multiple causes that result in the manifestation of oedema within any given part of the body (International Lymphoedema Framework (ILF), 2006: Table 1). Over 15 million people have a long-term condition in England (for example, hypertension or depression) (Coulter et al, 2013). This figure is projected to remain relatively stable over the next 10 years (Department of Health (DH), 2012a) but the number of patients diagnosed with multiple conditions is projected to rise from 1.9 million to 2.9 million over the same period (DH, 2012a). This article discusses the issue of patient self-management in the context of lymphoedema, chronic oedema and compression therapy, which is considered to be the cornerstone of lymphoedema treatment. Self-management has become a key facet of lymphoedema treatment in recent years and involves the patient learning, understanding, managing and making supported decisions about their long-term condition (DH, 2012a). Self-management is not a new concept, with multiple programmes and initiatives focusing on the process (see, for example, the Department of Health (DH) (2012a) Expert Patients Programme). This discussion is set against the multiple factors that affect, and at times prevent, self-management from being fully achieved. A number of Government policies have been devised following one of the biggest NHS restructures since its creation in 1948 (Carter, 2011). Each of these policies aims to bring about cultural and service shift from acute to primary care, while attempting to deliver quality
Chronic Oedema October 2014
sh Journal of Community Nursing.Downloaded from magonlinelibrary.com by 193.061.135.080 on January 19, 2015. For personal use only. No other uses without permission. . All rights rese
CLINICAL FOCUS
Incidence and prevalence There is some uncertainty over the prevalence of lymphoedema and chronic oedema in the UK (Moffatt et al, 2003; Franks et al, 2008; Cooper, 2012). There have been a number of individual studies that have either proposed ratio figures, or described and commented on what is occurring within a specific geographical location (Moffatt et al, 2003; Franks et al, 2008; Cooper, 2013). However, these figures merely estimate the impact of lymphoedema and chronic oedema upon the population. At the moment, no central Government agency in England collects data on the condition. This is not the case in Wales and Northern Ireland, which have implemented strategies that recognise and recommend the provision of services for those patients with or without a diagnosis of lymphoedema (Department of Health, Social Services and Public Safety (DHSSPS), 2004; Welsh Assembly Government (WAG), 2010). Specialist lymphoedema services exist in England, but issues of inequity in service provision have been raised as a concern by those involved in lymphoedema (Cooper, 2012). Despite the presence of services, lymphoedema has yet to be fully recognised as a condition in its own right in England, with limited acknowledgement through clinical guidelines (National Institute of Health and Care Excellence (NICE), 2009; 2014). These guidelines only acknowledge one potential cause of lymphoedema— breast cancer—with limited recognition of other secondary or primary causes (Table 1). Scotland has extended the recognition of secondary lymphoedema through the Scottish Intercollegiate Guidance Network (SIGN), which recognises its impact within gynaecological cancer (SIGN, 2008). Although this is a limited acknowledgement and recognition of lymphoedema, it offers a potential route towards greater awareness. However, with estimated figures suggesting that the prevalence of lymphoedema among the general population is between 0.13% and 2%, the impact upon the commissioning of services has yet to be established (Moffatt et al, 2003; ILF, 2006).
Funding and commissioning services The funding and commissioning aspect of services is essential when considering how self-management is delivered and patients are supported. There have been different constructs of chronic condition management, with a current focus upon the ‘House of Care’ approach (Coulter et al, 2013). The House of Care has now been adopted as a central concept in NHS England’s plans for improving care of people with long-term conditions (McShane and Mitchell, 2013). Lymphoedema and chronic oedema treatment should be considered a part of this concept, particularly when it necessitates a responsive local
S16
commissioning system (Coulter et al, 2013). However, the absence of a national strategy, or the recognition of all causes within national guidelines, will arguably only lead to a perpetuation of inequity in service provision (SIGN, 2008; NICE, 2009; 2014). Fortunately, a national tariff has been devised by the British Lymphology Society (BLS) to assist in the commissioning of services using other supporting documents (BLS, 2013). It is certainly the case that data collection by central agencies or a national report would assist in understanding the impact of the condition and assist in the commissioning of local services set against a national benchmark.
Knowledge and awareness Limited or absent knowledge of lymphoedema and chronic oedema has been highlighted as an area of concern in terms of patient care, with recent research supporting this notion (Franks et al, 2008; Cooper, 2012; Davies et al, 2012). Attempts have been made to fill the gaps in knowledge and awareness—for example, through the creation of link nurses and health-care programmes. These ideas now exist alongside national campaigns promoting awareness (for example, the BLS’s Lymphoedema Awareness Week). Knowledge of the conditions is crucial, as is the development of appropriate skills to assist in the management and implementation of self-management—processes consistent with current campaigns such as the Queen’s Nursing Institute’s (QNI’s) ‘Right Nurse, Right Skills’ campaign (QNI, 2012).
Specialist training Despite campaigns focusing upon awareness and expansion of knowledge, it has been highlighted within two prevalence reports from the West Midlands that there are insufficient numbers of lymphoedema specialists, with one service closing at the time of the recent report (Cooper, 2013; 2014). This presents a number of issues with regard to the diagnosis and management of patients who may have lymphoedema or chronic oedema. This has relevance for implementation of the House of Care model—potentially resulting in difficulties occurring with the escalation of patient cases and referral to appropriate specialists, and the de-escalation of patients to other health professionals (DH, 2012a; Coulter et al, 2013). However, the lack of focus on training has been cited as a problem beyond lymphoedema, particularly within district nursing (DN) education (QNI, 2013; Griffiths and Rafferty, 2014). A report by the QNI (2013) suggested that the number of qualified district nurses within the workforce fell from 10 446 in 2002 to 6381 in 2012. This is particularly concerning when there has been an emphasis on care closer to home and the supposed economic benefits (Royal College of Nursing (RCN), 2013a). Efforts have been made within Government policy to remedy the current situation, but plans such as these may take a number of years to come to fruition and achieve their aims (Hudson, 2014). It can be inferred that fully achieving and supporting patients in self-management in an effective manner requires
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upon self-management is not a new concept; however, there has been emphasis upon greater collaboration between services and health professionals due to the potential negative impact on the patient. This is something that applies to all long-term conditions and their complications (Coulter et al, 2013).
Chronic Oedema October 2014
sh Journal of Community Nursing.Downloaded from magonlinelibrary.com by 193.061.135.080 on January 19, 2015. For personal use only. No other uses without permission. . All rights rese
CLINICAL FOCUS
Lymphoedema
Chronic oedema
Primary lymphoedema causes:
Dependency/immobility
Milroy’s disease
Heart failure
Meige’s syndrome
Venous oedema
Turner syndrome
Obesity
Secondary lymphoedema causes:
Advanced cancer
Trauma/tissue damage Malignant disease
Ageing population The ageing population and its impact upon services within the UK is a factor that cannot be controlled. Cracknell (2010) states that 10 million people in the UK are over 65 years old, and this figure is projected to increase by 5.5 million in the next 20 years. It is suggested that 8 out of 10 people aged 65 and over will require some care and support, with 32% projected to have moderate-to-severe disabilities (HM Government, 2012; Wittenberg et al, 2012). These figures sit alongside the 670 000 people in England who currently have a diagnosis of dementia (HM Government, 2012).
Venous disease
Care delivery
Infection
This presents challenges with regard to the delivery of care, due to the continuing constraint of public expenditure (Crawford and Emmerson, 2012). The cost implications in the provision of social care for this group is estimated to rise to £12 billion by 2020, which is an increase of 37% on the £9.3 billion spent in 2010 (Wittenberg et al, 2012). However, the care of those with chronic disease is estimated to increase to £14.4 billion by 2022 (Wittenberg et al, 2012). These costs do not take into account care delivered by family and friends, with an estimated 50 hours per week delivered for free by 5 million people in England (HM Government, 2012). However, changes are occurring in the way that patients engage with their care (Royal College of General Practitioners (RCGP), 2012). This involves the patient being allocated a budget that is either held by themselves or another party. This can be spent on social care and certain health services that would assist in raising patients’ quality of life through tailored care (Cooper, 2014). These tools and resources can be used for patient self-management of their conditions—especially lymphoedema and chronic oedema.
Inflammation Endocrine issues Dependency/immobility
appropriate knowledge, skills, training and the availability of clinical specialists.
Staffing levels The knowledge and skills of community staff is one factor, but the impact of low staffing levels and their negative impact upon patient outcomes has been highlighted as a cause for concern (Francis, 2013). A review of safe staffing levels was recommended within the hospital setting, with the idea that these figures should be made available for public scrutiny on the NHS Choices website. However, the recent focus upon hospital services highlights a lack of guidance within primary care. It is anticipated that this recommendation will be constructed in the future, with the RCN supporting guidance in this area (RCN, 2013b). It has already been noted that, over the past decade, there has been a shift towards care closer to home, with suggestions of greater integration and collaboration (Coulter et al, 2013; RCN, 2013a). However, while staffing levels in the hospital setting have risen as a result of the Francis report (2013), they have fallen within primary care by 4.5% since 2009, which equates to 2165 nurses (Ford, 2014). This creates a question over how to deliver care to patients with long-term conditions such as those with lymphoedema and chronic oedema, and how to achieve the goal of selfmanagement with a diminished workforce and budget. This is especially relevant when recent research suggests that a 7% increase in deaths is associated with every additional patient on a nurse’s caseload (Aitken et al, 2014). It may be inevitable that workloads will increase due to financial constraints and the focus upon meeting the £20 billion cost saving in NHS England by 2015 demanded by the Government (Dowler, 2011). Furthermore, it has been suggested that community health services will receive funding that is 20% below acute services (Hudson, 2014). There is no simple solution to this problem beyond the development of greater efficiency measures, or the possible redesign of services.
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Compression therapy One of the most important components of lymphoedema and chronic oedema is compression therapy (ILF, 2006; Cooper, 2012). This section discusses how the factors mentioned can affect the goal of self-management in lymphoedema.The term ‘compression therapy’ encompasses a number of components, including compression bandaging, hosiery and wrap-based systems (ILF, 2006; 2012). Examples of the therapeutic benefits include increased lymphatic drainage, increased microcirculatory blood flow and fluid movement (ILF, 2006; 2012). The definition of lymphoedema and chronic oedema focuses upon the negative impact caused by the accumulation of lymphatic fluid, with its removal and control being considered as beneficial (Cooper, 2012). However, patients need to receive appropriate support and education to manage their condition in addition to this, while community staff and other health professionals need to acquire a level of knowledge, skill and time to implement the evidencebased care required for these patients (ILF, 2006). Despite the above requirements from the perspective of the patient
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Table 1. Potential causes of lymphoedema and chronic oedema
Chronic Oedema October 2014
sh Journal of Community Nursing.Downloaded from magonlinelibrary.com by 193.061.135.080 on January 19, 2015. For personal use only. No other uses without permission. . All rights rese
CLINICAL FOCUS
and the health professional, it has already been pointed out that the community workforce has reduced over a period of time, despite the increase of their workload and an ageing population that has become more complex in its health requirements (Coulter et al, 2013; Hudson, 2014). This does not mean that patients do not receive care, but rather that the quality and effectiveness may be diminished or harder to achieve, especially in regard to supporting patients to self-manage their condition.
Cellulitis Self-management can assist in reducing the occurrence of cellulitis, which is a known complication of lymphoedema and chronic oedema. It is estimated that the cost of cellulitis is £96 million, and has led to 400 000 bed stays (per year) in the NHS (ILF, 2006; Levell et al, 2011). Patients can play an active part in reducing the risk of infection, for example skin care, but also within early recognition and treatment, thereby avoiding costly hospital admissions (ILF, 2006; Coulter et al, 2013). The cost of cellulitis is only one example of a complication within this patient group that affects both the patient and the NHS. The impact of the condition is yet to be established—and this in turn affects the support that patients receive (Cooper, 2012). Most local contracts for community health services (CHSs) are currently set on a block-contract basis (Monitor, 2013). However, the absence
of data on the prevalence of a condition may lead to the commissioning of CHSs that are unable to meet the needs of this patient group—both in terms of staff numbers and resources (Monitor, 2013; Hudson, 2014). Patient needs extend beyond CHSs and may require the involvement of other services, such as social services or care agencies, for example, due to difficulties in donning or doffing garments on a daily basis (despite the availability of aids). Furthermore, these requirements may extend to other aspects of self-care, such as skin care (ILF, 2006; Cooper, 2012).
Personal budgeting Patients have the ability to obtain personal budgets (for both health and social care), the aim of which is to empower patients within the realm of their care (RCGP, 2012). However, this may require advice and support, which is a key role for community staff in the promotion of selfmanagement (RCGP, 2012). Community staff cannot work alone, and will need to work collaboratively with other members of the multidisciplinary team (ILF, 2006; Coulter et al, 2013). This is due to the range of types of support that patients may need, particularly when the aim is to move towards greater patient self-management (Coulter et al, 2013).
Conclusion This article considers some of the main issues affecting the goal of patients achieving a reasonable level of self-
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sh Journal of Community Nursing.Downloaded from magonlinelibrary.com by 193.061.135.080 on January 19, 2015. For personal use only. No other uses without permission. . All rights rese
management. The factors are not an exhaustive list, but represent some of the current issues being debated within health care. Despite the acknowledgement that certain factors cannot be altered, such as age, it is understood that other factors can be improved through a greater understanding of its impact, such as prevalence figures. It is important that health professionals recognise their boundaries and limitations, and address these through education/training. It is recognised that achieving greater levels of patient selfmanagement requires a collaborative approach, especially where the impact of multiple comorbidities is considered. The health-care environment is changing. This can be a challenge, but also an opportunity for change that could benefit those who are underrepresented. It is up to health professionals to decide upon the perspective to hold and the action to take. BJCN Accepted for publication: 16 September 2014 Aiken L, Sloane D, Bruyneel L (2014) Nurse staffing and education and hospital mortality in nine European countries: a retrospective observational study. Lancet, February 26. http://tinyurl.com/q6j3jyx (accessed 8th September 2014) British Lymphology Society (2013) National Tariff. BLS, Oxfordshire Carter P (2011) ‘Nursing showed its power in the saga of the health reforms’. Nursing Times, 21 June. http://tinyurl.com/l42xbmu (accessed 12 September 2014) Cooper G (2012) Lymphoedema treatment in palliative care: a case study. Br J Nurs 21(15): 897–903 Cooper G (2013) Lymphoedema prevalence in the West Midlands region. J Lymphoedema 8(1): 17–20 Cooper G (2014) Lymphoedema prevalence 2013–14 (West Midlands). Presentation, British Lymphoedema Society conference, Birmingham, 5–8 October Coulter A, Roberts S, Dixon A (2013) Delivering Better Services for People with Longterm Conditions: Building the House of Care. Kings Fund, London. http://tinyurl. com/ld62h7o (accessed 16 September 2014) Cracknell R (2010) The Ageing Population: Key Issues for the New Parliament. House of Commons Library Research. House of Commons, London. http://tinyurl. com/mews8ms (accessed 10 September 2014). Crawford R, Emmerson C (2012) NHS and Social Care Funding: The Outlook to 2021/22. Nuffield Trust, July. http://tinyurl.com/ml4x425 (accessed 16 September 2014) Davies R, Fitzpatrick B, O’Neill A, Sneddon M (2012) Lymphoedema education needs of clinicians: a national study. J Lymphoedema 7(2): 14–24 Department of Health (2012a) Long Term Conditions Compendium of Information, 3rd edn. http://tinyurl.com/p2drc92 (accessed 28 August 2014) Department of Health (2012b) The Mandate—A Mandate from the Government to the NHS Commissioning Board: April 2013 to March 2015. http://tinyurl.com/ ohmgdux (accessed on 28 August 2013) Department of Health, Social Services and Public Safety (2004) Lymphoedema Service: Report of the Lymphoedema Services Review Group. http://tinyurl.com/ l72o3fz (accessed 16 September 2014) Dowler C (2011) Carter warns reforms could be ‘biggest disaster in his-
KEY POINTS
w Factors that can affect patient self-management include: patient engagement, lack of patient support, limited knowledge/awareness, insufficient staff/resources and insufficient collaboration w Patient self-management requires collaboration and coordination across health and social care boundaries w Recognition of professional boundaries, and the importance/responsibility of supporting and educating patients is key to achieving.
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tory’ of NHS. Nursing Times, 11 April. http://tinyurl.com/mtyhfrb (accessed 16 September 2014) Epping-Jordan J, Pruitt S, Bengoa R, Wagner E (2004) Improving the quality of health care for chronic conditions. Qual Safety Health Care 13(4): 299–305 Francis R (2013) Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. Stationery Office, London. http://tinyurl.com/anb9zme (accessed 16 September 2014) Ford S (2014) Risk from hospital nurse cuts ‘also applies to community’. Nursing Times. http://tinyurl.com/lx37tdh (accessed 10 September 2014) Franks P, Pearson J, Sneddon M (2008) Lymphoedema: service provision and needs in Scotland. Research Report, University of Glasgow. http://tinyurl.com/kauzvev (accessed 17 September 2014) Greene J, Hibbard J (2012) Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. J Gen Intern Med 27(5): 520–6. doi: 10.1007/s11606-011-1931-2 (accessed 17 September 2014) Griffiths P, Rafferty M (2014) Failing to invest in the nursing workforce puts patients at risk. Nursing Times, 4 June. http://tinyurl.com/l25htsk (accessed 17 September 2014) Hibbard J, Greene J (2013) What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Affairs (Millwood) 32(2): 207–14 HM Government (2012) Caring for Our Future: Progress Report on Funding Reform. Stationery Office, London. http://tinyurl.com/ml4x425 (accessed 16 September 2014) Hudson B (2014) Policy paradox and political neglect in community health services. Br J Community Nurs 16(9): 428–31 International Lymphoedema Framework (2006) International Consensus: Best Practice for the Management of Lymphoedema. Medical Education Partnership, London. http://tinyurl.com/nywtxv6 (accessed 17 September 2014) International Lymphoedema Framework (2012) Compression Therapy: A Position Document on Compression Bandaging. http://tinyurl.com/nto9qqh (accessed 18 September 2014) Keeley V (2009) Chronic oedema of the lower limb: causes, presentation and management priorities. In: Skills for Practice: Management of Chronic Oedema in the Community. Wounds UK, Aberdeen: pp. 4–9. http://tinyurl.com/nf6b96k (accessed 17 September 2014) Levell N,Wingfield C, Garioch J (2011) Severe lower-limb cellulitis is best diagnosed by dermatologists and managed with shared care between primary and secondary care. Br J Dermatol 164(6): 1326–8. doi: 10.1111/j.1365-2133.2011.10275.x McShane M, Mitchell E (2013) Patient experience: put individuals at the centre of care. Health Service Journal 123(6359): 26–7 Moffatt C, Franks P, Doherty D et al (2003) Lymphoedema: an underestimated health problem. QJM 96: 731–8 Monitor (2013) Local Price-setting and Contracting Practices for NHS Services without a Nationally Mandated Price. http://tinyurl.com/nf6b96k (accessed 17 September 2014) National Institute for Health and Care Excellence (2009) Early and Locally Advanced Breast Cancer: Diagnosis and Treatment. Clinical Guideline 81. http://tinyurl.com/ pdsn3jb (accessed 17 September 2014) National Institute for Health and Care Excellence (2014) Advanced Breast Cancer (Update): Diagnosis and Treatment. Clinical Guideline 81 (addendum). http:// tinyurl.com/odxw2h2 (accessed 17 September 2014) Queen’s Nursing Institute (2014) Right Nurse, Right Skills campaign. http://tinyurl.com/m3e88xj (accessed 17 September 2014) Queen’s Nursing Institute (2013) Report on District Nurse Education in England, Wales and Northern Ireland 2012/13. http://tinyurl.com/mng9xkx (accessed 17 September 2014) Royal College of General Practitioners (2012) Personal Health Budgets: Guide for GPs. http://tinyurl.com/masaml9 (accessed 17 September 2014) Royal College of Nursing (2013a) Moving Care to the Community: An International Perspective. http://tinyurl.com/q4k8ezx (accessed 17 September 2014) Royal College of Nursing (2013b) Safe Staffing Levels: A National Imperative—The UK Nursing Labour Market Review 2013. http://tinyurl.com/kvjr3f7 (accessed 17 September 2014) Scottish Intercollegiate Guidelines Network (2008) Management of Cervical Cancer: A National Clinical Guideline. SIGN Guideline 99. http://tinyurl.com/p4pzv3g (accessed 17 September 2014) Welsh Assembly Government (2010) A Strategy for Lymphoedema in Wales: Designed for Lymphoedema. http://tinyurl.com/7valssd (accessed 17 September 2014) Wittenberg R, Hu B, Comas-Herrera A (2012) Care for Older People: Projected Expenditure to 2022 on Social Care and Continuing Health Care for England’s Older Population. Nuffield Trust, London. http://tinyurl.com/q5qnhyo (accessed 17 September 2014)
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CLINICAL FOCUS
Chronic Oedema October 2014
sh Journal of Community Nursing.Downloaded from magonlinelibrary.com by 193.061.135.080 on January 19, 2015. For personal use only. No other uses without permission. . All rights rese
Practical barriers to achieving self-management of lymphoedema Garry Cooper Adult Lecturer, School of Nursing, Midwifery and Social Work, Birmingham City University; British Lymphology Society Trustee Email: [email protected]
ABSTRACT
Supporting patients in achieving the goal of self-management of their longterm condition is fraught with challenges. This support may begin with matters that can be addressed through education or training. However, some matters cannot be controlled, such as the impact of the ageing population. This article proposes and discusses some of the current factors that affect compression therapy and the overarching goal of self-management in this area of treatment.
KEY WORDS w Patient self-management w Staff education w Patient support w Collaboration
S14
care closer to home within the constraints of a dwindling budget (Dowler, 2011). However, this is only one issue affecting the ability to deliver day-to-day care to patients in the wider context.The ability to remove these barriers goes beyond a single person and a willingness to be an advocate for the patient. It requires a collective consciousness and willingness to unite towards an agreed common goal for change, which would bring about an end to a perpetual cycle of ignorance and lack of recognition from a national perspective.
General factors affecting lymphoedema and compression therapy The factors that have been selected for discussion and their impact upon compression therapy include prevalence figures, knowledge/awareness, staffing levels and the ageing population. How these are resolved or tackled is part of a larger debate, particularly given that they only represent some of the challenges.
Patient self-management Focusing upon self-management is a mandate to
‘ensure the NHS becomes dramatically better at involving patients and their carers, and empowering them to manage and make decisions about their own care and treatment’. (Department of Health, 2012b) There is also evidence indicating that patients who are an active part of their self-management through effective support and education experience improved health outcomes (Epping-Jordan et al, 2004; Greene and Hibbard, 2012; Hibbard and Greene, 2013). There is also a budgetary and cost impact relating to this group of patients, as it is suggested they account for at least 50% of all GP appointments, 64% of outpatient appointments and 70% of all inpatient bed days (DH, 2012a). To the best of the author’s knowledge, research has not yet established how many patients with lymphoedema and chronic oedema have multiple comorbidities, and how many are frequent users of primary and acute services. However, the research regarding the impact of both conditions within the physical/psychological context infers that they could be part of this group (for example, suffering from cellulitis or depression (Cooper, 2012)). The focus
© 2014 MA Healthcare Ltd
L
ymphoedema and chronic oedema are long-term conditions that are incurable. The condition has multiple causes that result in the manifestation of oedema within any given part of the body (International Lymphoedema Framework (ILF), 2006: Table 1). Over 15 million people have a long-term condition in England (for example, hypertension or depression) (Coulter et al, 2013). This figure is projected to remain relatively stable over the next 10 years (Department of Health (DH), 2012a) but the number of patients diagnosed with multiple conditions is projected to rise from 1.9 million to 2.9 million over the same period (DH, 2012a). This article discusses the issue of patient self-management in the context of lymphoedema, chronic oedema and compression therapy, which is considered to be the cornerstone of lymphoedema treatment. Self-management has become a key facet of lymphoedema treatment in recent years and involves the patient learning, understanding, managing and making supported decisions about their long-term condition (DH, 2012a). Self-management is not a new concept, with multiple programmes and initiatives focusing on the process (see, for example, the Department of Health (DH) (2012a) Expert Patients Programme). This discussion is set against the multiple factors that affect, and at times prevent, self-management from being fully achieved. A number of Government policies have been devised following one of the biggest NHS restructures since its creation in 1948 (Carter, 2011). Each of these policies aims to bring about cultural and service shift from acute to primary care, while attempting to deliver quality
Chronic Oedema October 2014
sh Journal of Community Nursing.Downloaded from magonlinelibrary.com by 193.061.135.080 on January 19, 2015. For personal use only. No other uses without permission. . All rights rese
CLINICAL FOCUS
Incidence and prevalence There is some uncertainty over the prevalence of lymphoedema and chronic oedema in the UK (Moffatt et al, 2003; Franks et al, 2008; Cooper, 2012). There have been a number of individual studies that have either proposed ratio figures, or described and commented on what is occurring within a specific geographical location (Moffatt et al, 2003; Franks et al, 2008; Cooper, 2013). However, these figures merely estimate the impact of lymphoedema and chronic oedema upon the population. At the moment, no central Government agency in England collects data on the condition. This is not the case in Wales and Northern Ireland, which have implemented strategies that recognise and recommend the provision of services for those patients with or without a diagnosis of lymphoedema (Department of Health, Social Services and Public Safety (DHSSPS), 2004; Welsh Assembly Government (WAG), 2010). Specialist lymphoedema services exist in England, but issues of inequity in service provision have been raised as a concern by those involved in lymphoedema (Cooper, 2012). Despite the presence of services, lymphoedema has yet to be fully recognised as a condition in its own right in England, with limited acknowledgement through clinical guidelines (National Institute of Health and Care Excellence (NICE), 2009; 2014). These guidelines only acknowledge one potential cause of lymphoedema— breast cancer—with limited recognition of other secondary or primary causes (Table 1). Scotland has extended the recognition of secondary lymphoedema through the Scottish Intercollegiate Guidance Network (SIGN), which recognises its impact within gynaecological cancer (SIGN, 2008). Although this is a limited acknowledgement and recognition of lymphoedema, it offers a potential route towards greater awareness. However, with estimated figures suggesting that the prevalence of lymphoedema among the general population is between 0.13% and 2%, the impact upon the commissioning of services has yet to be established (Moffatt et al, 2003; ILF, 2006).
Funding and commissioning services The funding and commissioning aspect of services is essential when considering how self-management is delivered and patients are supported. There have been different constructs of chronic condition management, with a current focus upon the ‘House of Care’ approach (Coulter et al, 2013). The House of Care has now been adopted as a central concept in NHS England’s plans for improving care of people with long-term conditions (McShane and Mitchell, 2013). Lymphoedema and chronic oedema treatment should be considered a part of this concept, particularly when it necessitates a responsive local
S16
commissioning system (Coulter et al, 2013). However, the absence of a national strategy, or the recognition of all causes within national guidelines, will arguably only lead to a perpetuation of inequity in service provision (SIGN, 2008; NICE, 2009; 2014). Fortunately, a national tariff has been devised by the British Lymphology Society (BLS) to assist in the commissioning of services using other supporting documents (BLS, 2013). It is certainly the case that data collection by central agencies or a national report would assist in understanding the impact of the condition and assist in the commissioning of local services set against a national benchmark.
Knowledge and awareness Limited or absent knowledge of lymphoedema and chronic oedema has been highlighted as an area of concern in terms of patient care, with recent research supporting this notion (Franks et al, 2008; Cooper, 2012; Davies et al, 2012). Attempts have been made to fill the gaps in knowledge and awareness—for example, through the creation of link nurses and health-care programmes. These ideas now exist alongside national campaigns promoting awareness (for example, the BLS’s Lymphoedema Awareness Week). Knowledge of the conditions is crucial, as is the development of appropriate skills to assist in the management and implementation of self-management—processes consistent with current campaigns such as the Queen’s Nursing Institute’s (QNI’s) ‘Right Nurse, Right Skills’ campaign (QNI, 2012).
Specialist training Despite campaigns focusing upon awareness and expansion of knowledge, it has been highlighted within two prevalence reports from the West Midlands that there are insufficient numbers of lymphoedema specialists, with one service closing at the time of the recent report (Cooper, 2013; 2014). This presents a number of issues with regard to the diagnosis and management of patients who may have lymphoedema or chronic oedema. This has relevance for implementation of the House of Care model—potentially resulting in difficulties occurring with the escalation of patient cases and referral to appropriate specialists, and the de-escalation of patients to other health professionals (DH, 2012a; Coulter et al, 2013). However, the lack of focus on training has been cited as a problem beyond lymphoedema, particularly within district nursing (DN) education (QNI, 2013; Griffiths and Rafferty, 2014). A report by the QNI (2013) suggested that the number of qualified district nurses within the workforce fell from 10 446 in 2002 to 6381 in 2012. This is particularly concerning when there has been an emphasis on care closer to home and the supposed economic benefits (Royal College of Nursing (RCN), 2013a). Efforts have been made within Government policy to remedy the current situation, but plans such as these may take a number of years to come to fruition and achieve their aims (Hudson, 2014). It can be inferred that fully achieving and supporting patients in self-management in an effective manner requires
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upon self-management is not a new concept; however, there has been emphasis upon greater collaboration between services and health professionals due to the potential negative impact on the patient. This is something that applies to all long-term conditions and their complications (Coulter et al, 2013).
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CLINICAL FOCUS
Lymphoedema
Chronic oedema
Primary lymphoedema causes:
Dependency/immobility
Milroy’s disease
Heart failure
Meige’s syndrome
Venous oedema
Turner syndrome
Obesity
Secondary lymphoedema causes:
Advanced cancer
Trauma/tissue damage Malignant disease
Ageing population The ageing population and its impact upon services within the UK is a factor that cannot be controlled. Cracknell (2010) states that 10 million people in the UK are over 65 years old, and this figure is projected to increase by 5.5 million in the next 20 years. It is suggested that 8 out of 10 people aged 65 and over will require some care and support, with 32% projected to have moderate-to-severe disabilities (HM Government, 2012; Wittenberg et al, 2012). These figures sit alongside the 670 000 people in England who currently have a diagnosis of dementia (HM Government, 2012).
Venous disease
Care delivery
Infection
This presents challenges with regard to the delivery of care, due to the continuing constraint of public expenditure (Crawford and Emmerson, 2012). The cost implications in the provision of social care for this group is estimated to rise to £12 billion by 2020, which is an increase of 37% on the £9.3 billion spent in 2010 (Wittenberg et al, 2012). However, the care of those with chronic disease is estimated to increase to £14.4 billion by 2022 (Wittenberg et al, 2012). These costs do not take into account care delivered by family and friends, with an estimated 50 hours per week delivered for free by 5 million people in England (HM Government, 2012). However, changes are occurring in the way that patients engage with their care (Royal College of General Practitioners (RCGP), 2012). This involves the patient being allocated a budget that is either held by themselves or another party. This can be spent on social care and certain health services that would assist in raising patients’ quality of life through tailored care (Cooper, 2014). These tools and resources can be used for patient self-management of their conditions—especially lymphoedema and chronic oedema.
Inflammation Endocrine issues Dependency/immobility
appropriate knowledge, skills, training and the availability of clinical specialists.
Staffing levels The knowledge and skills of community staff is one factor, but the impact of low staffing levels and their negative impact upon patient outcomes has been highlighted as a cause for concern (Francis, 2013). A review of safe staffing levels was recommended within the hospital setting, with the idea that these figures should be made available for public scrutiny on the NHS Choices website. However, the recent focus upon hospital services highlights a lack of guidance within primary care. It is anticipated that this recommendation will be constructed in the future, with the RCN supporting guidance in this area (RCN, 2013b). It has already been noted that, over the past decade, there has been a shift towards care closer to home, with suggestions of greater integration and collaboration (Coulter et al, 2013; RCN, 2013a). However, while staffing levels in the hospital setting have risen as a result of the Francis report (2013), they have fallen within primary care by 4.5% since 2009, which equates to 2165 nurses (Ford, 2014). This creates a question over how to deliver care to patients with long-term conditions such as those with lymphoedema and chronic oedema, and how to achieve the goal of selfmanagement with a diminished workforce and budget. This is especially relevant when recent research suggests that a 7% increase in deaths is associated with every additional patient on a nurse’s caseload (Aitken et al, 2014). It may be inevitable that workloads will increase due to financial constraints and the focus upon meeting the £20 billion cost saving in NHS England by 2015 demanded by the Government (Dowler, 2011). Furthermore, it has been suggested that community health services will receive funding that is 20% below acute services (Hudson, 2014). There is no simple solution to this problem beyond the development of greater efficiency measures, or the possible redesign of services.
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Compression therapy One of the most important components of lymphoedema and chronic oedema is compression therapy (ILF, 2006; Cooper, 2012). This section discusses how the factors mentioned can affect the goal of self-management in lymphoedema.The term ‘compression therapy’ encompasses a number of components, including compression bandaging, hosiery and wrap-based systems (ILF, 2006; 2012). Examples of the therapeutic benefits include increased lymphatic drainage, increased microcirculatory blood flow and fluid movement (ILF, 2006; 2012). The definition of lymphoedema and chronic oedema focuses upon the negative impact caused by the accumulation of lymphatic fluid, with its removal and control being considered as beneficial (Cooper, 2012). However, patients need to receive appropriate support and education to manage their condition in addition to this, while community staff and other health professionals need to acquire a level of knowledge, skill and time to implement the evidencebased care required for these patients (ILF, 2006). Despite the above requirements from the perspective of the patient
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Table 1. Potential causes of lymphoedema and chronic oedema
Chronic Oedema October 2014
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CLINICAL FOCUS
and the health professional, it has already been pointed out that the community workforce has reduced over a period of time, despite the increase of their workload and an ageing population that has become more complex in its health requirements (Coulter et al, 2013; Hudson, 2014). This does not mean that patients do not receive care, but rather that the quality and effectiveness may be diminished or harder to achieve, especially in regard to supporting patients to self-manage their condition.
Cellulitis Self-management can assist in reducing the occurrence of cellulitis, which is a known complication of lymphoedema and chronic oedema. It is estimated that the cost of cellulitis is £96 million, and has led to 400 000 bed stays (per year) in the NHS (ILF, 2006; Levell et al, 2011). Patients can play an active part in reducing the risk of infection, for example skin care, but also within early recognition and treatment, thereby avoiding costly hospital admissions (ILF, 2006; Coulter et al, 2013). The cost of cellulitis is only one example of a complication within this patient group that affects both the patient and the NHS. The impact of the condition is yet to be established—and this in turn affects the support that patients receive (Cooper, 2012). Most local contracts for community health services (CHSs) are currently set on a block-contract basis (Monitor, 2013). However, the absence
of data on the prevalence of a condition may lead to the commissioning of CHSs that are unable to meet the needs of this patient group—both in terms of staff numbers and resources (Monitor, 2013; Hudson, 2014). Patient needs extend beyond CHSs and may require the involvement of other services, such as social services or care agencies, for example, due to difficulties in donning or doffing garments on a daily basis (despite the availability of aids). Furthermore, these requirements may extend to other aspects of self-care, such as skin care (ILF, 2006; Cooper, 2012).
Personal budgeting Patients have the ability to obtain personal budgets (for both health and social care), the aim of which is to empower patients within the realm of their care (RCGP, 2012). However, this may require advice and support, which is a key role for community staff in the promotion of selfmanagement (RCGP, 2012). Community staff cannot work alone, and will need to work collaboratively with other members of the multidisciplinary team (ILF, 2006; Coulter et al, 2013). This is due to the range of types of support that patients may need, particularly when the aim is to move towards greater patient self-management (Coulter et al, 2013).
Conclusion This article considers some of the main issues affecting the goal of patients achieving a reasonable level of self-
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sh Journal of Community Nursing.Downloaded from magonlinelibrary.com by 193.061.135.080 on January 19, 2015. For personal use only. No other uses without permission. . All rights rese
management. The factors are not an exhaustive list, but represent some of the current issues being debated within health care. Despite the acknowledgement that certain factors cannot be altered, such as age, it is understood that other factors can be improved through a greater understanding of its impact, such as prevalence figures. It is important that health professionals recognise their boundaries and limitations, and address these through education/training. It is recognised that achieving greater levels of patient selfmanagement requires a collaborative approach, especially where the impact of multiple comorbidities is considered. The health-care environment is changing. This can be a challenge, but also an opportunity for change that could benefit those who are underrepresented. It is up to health professionals to decide upon the perspective to hold and the action to take. BJCN Accepted for publication: 16 September 2014 Aiken L, Sloane D, Bruyneel L (2014) Nurse staffing and education and hospital mortality in nine European countries: a retrospective observational study. Lancet, February 26. http://tinyurl.com/q6j3jyx (accessed 8th September 2014) British Lymphology Society (2013) National Tariff. BLS, Oxfordshire Carter P (2011) ‘Nursing showed its power in the saga of the health reforms’. Nursing Times, 21 June. http://tinyurl.com/l42xbmu (accessed 12 September 2014) Cooper G (2012) Lymphoedema treatment in palliative care: a case study. Br J Nurs 21(15): 897–903 Cooper G (2013) Lymphoedema prevalence in the West Midlands region. J Lymphoedema 8(1): 17–20 Cooper G (2014) Lymphoedema prevalence 2013–14 (West Midlands). Presentation, British Lymphoedema Society conference, Birmingham, 5–8 October Coulter A, Roberts S, Dixon A (2013) Delivering Better Services for People with Longterm Conditions: Building the House of Care. Kings Fund, London. http://tinyurl. com/ld62h7o (accessed 16 September 2014) Cracknell R (2010) The Ageing Population: Key Issues for the New Parliament. House of Commons Library Research. House of Commons, London. http://tinyurl. com/mews8ms (accessed 10 September 2014). Crawford R, Emmerson C (2012) NHS and Social Care Funding: The Outlook to 2021/22. Nuffield Trust, July. http://tinyurl.com/ml4x425 (accessed 16 September 2014) Davies R, Fitzpatrick B, O’Neill A, Sneddon M (2012) Lymphoedema education needs of clinicians: a national study. J Lymphoedema 7(2): 14–24 Department of Health (2012a) Long Term Conditions Compendium of Information, 3rd edn. http://tinyurl.com/p2drc92 (accessed 28 August 2014) Department of Health (2012b) The Mandate—A Mandate from the Government to the NHS Commissioning Board: April 2013 to March 2015. http://tinyurl.com/ ohmgdux (accessed on 28 August 2013) Department of Health, Social Services and Public Safety (2004) Lymphoedema Service: Report of the Lymphoedema Services Review Group. http://tinyurl.com/ l72o3fz (accessed 16 September 2014) Dowler C (2011) Carter warns reforms could be ‘biggest disaster in his-
KEY POINTS
w Factors that can affect patient self-management include: patient engagement, lack of patient support, limited knowledge/awareness, insufficient staff/resources and insufficient collaboration w Patient self-management requires collaboration and coordination across health and social care boundaries w Recognition of professional boundaries, and the importance/responsibility of supporting and educating patients is key to achieving.
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tory’ of NHS. Nursing Times, 11 April. http://tinyurl.com/mtyhfrb (accessed 16 September 2014) Epping-Jordan J, Pruitt S, Bengoa R, Wagner E (2004) Improving the quality of health care for chronic conditions. Qual Safety Health Care 13(4): 299–305 Francis R (2013) Report of the Mid Staffordshire NHS Foundation Trust Public Inquiry. Stationery Office, London. http://tinyurl.com/anb9zme (accessed 16 September 2014) Ford S (2014) Risk from hospital nurse cuts ‘also applies to community’. Nursing Times. http://tinyurl.com/lx37tdh (accessed 10 September 2014) Franks P, Pearson J, Sneddon M (2008) Lymphoedema: service provision and needs in Scotland. Research Report, University of Glasgow. http://tinyurl.com/kauzvev (accessed 17 September 2014) Greene J, Hibbard J (2012) Why does patient activation matter? An examination of the relationships between patient activation and health-related outcomes. J Gen Intern Med 27(5): 520–6. doi: 10.1007/s11606-011-1931-2 (accessed 17 September 2014) Griffiths P, Rafferty M (2014) Failing to invest in the nursing workforce puts patients at risk. Nursing Times, 4 June. http://tinyurl.com/l25htsk (accessed 17 September 2014) Hibbard J, Greene J (2013) What the evidence shows about patient activation: better health outcomes and care experiences; fewer data on costs. Health Affairs (Millwood) 32(2): 207–14 HM Government (2012) Caring for Our Future: Progress Report on Funding Reform. Stationery Office, London. http://tinyurl.com/ml4x425 (accessed 16 September 2014) Hudson B (2014) Policy paradox and political neglect in community health services. Br J Community Nurs 16(9): 428–31 International Lymphoedema Framework (2006) International Consensus: Best Practice for the Management of Lymphoedema. Medical Education Partnership, London. http://tinyurl.com/nywtxv6 (accessed 17 September 2014) International Lymphoedema Framework (2012) Compression Therapy: A Position Document on Compression Bandaging. http://tinyurl.com/nto9qqh (accessed 18 September 2014) Keeley V (2009) Chronic oedema of the lower limb: causes, presentation and management priorities. In: Skills for Practice: Management of Chronic Oedema in the Community. Wounds UK, Aberdeen: pp. 4–9. http://tinyurl.com/nf6b96k (accessed 17 September 2014) Levell N,Wingfield C, Garioch J (2011) Severe lower-limb cellulitis is best diagnosed by dermatologists and managed with shared care between primary and secondary care. Br J Dermatol 164(6): 1326–8. doi: 10.1111/j.1365-2133.2011.10275.x McShane M, Mitchell E (2013) Patient experience: put individuals at the centre of care. Health Service Journal 123(6359): 26–7 Moffatt C, Franks P, Doherty D et al (2003) Lymphoedema: an underestimated health problem. QJM 96: 731–8 Monitor (2013) Local Price-setting and Contracting Practices for NHS Services without a Nationally Mandated Price. http://tinyurl.com/nf6b96k (accessed 17 September 2014) National Institute for Health and Care Excellence (2009) Early and Locally Advanced Breast Cancer: Diagnosis and Treatment. Clinical Guideline 81. http://tinyurl.com/ pdsn3jb (accessed 17 September 2014) National Institute for Health and Care Excellence (2014) Advanced Breast Cancer (Update): Diagnosis and Treatment. Clinical Guideline 81 (addendum). http:// tinyurl.com/odxw2h2 (accessed 17 September 2014) Queen’s Nursing Institute (2014) Right Nurse, Right Skills campaign. http://tinyurl.com/m3e88xj (accessed 17 September 2014) Queen’s Nursing Institute (2013) Report on District Nurse Education in England, Wales and Northern Ireland 2012/13. http://tinyurl.com/mng9xkx (accessed 17 September 2014) Royal College of General Practitioners (2012) Personal Health Budgets: Guide for GPs. http://tinyurl.com/masaml9 (accessed 17 September 2014) Royal College of Nursing (2013a) Moving Care to the Community: An International Perspective. http://tinyurl.com/q4k8ezx (accessed 17 September 2014) Royal College of Nursing (2013b) Safe Staffing Levels: A National Imperative—The UK Nursing Labour Market Review 2013. http://tinyurl.com/kvjr3f7 (accessed 17 September 2014) Scottish Intercollegiate Guidelines Network (2008) Management of Cervical Cancer: A National Clinical Guideline. SIGN Guideline 99. http://tinyurl.com/p4pzv3g (accessed 17 September 2014) Welsh Assembly Government (2010) A Strategy for Lymphoedema in Wales: Designed for Lymphoedema. http://tinyurl.com/7valssd (accessed 17 September 2014) Wittenberg R, Hu B, Comas-Herrera A (2012) Care for Older People: Projected Expenditure to 2022 on Social Care and Continuing Health Care for England’s Older Population. Nuffield Trust, London. http://tinyurl.com/q5qnhyo (accessed 17 September 2014)
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CLINICAL FOCUS
Chronic Oedema October 2014
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