Chapter 1
Managing Chronic Conditions: The Policy Context
Beverley Matthews
NHS Kidney Care and Liver Care, UK
Introduction
The rising incidence and prevalence of chronic conditions presents a serious challenge to the effectiveness and sustainability of current and future healthcare services. A major issue is the increasing number of people with multiple chronic conditions and health services that continue to be organised around specific diseases. It is evident that chronic kidney disease (CKD) encompasses a spectrum of health states, and that these can be negatively affected by other chronic conditions and age-related problems such as memory impairment and mobility issues. Similarly, socioeconomic factors such as deprivation also adversely influence health outcomes. In effectively meeting the diverse needs of people with chronic conditions, a population management approach is required whereby the focus of care is based on the level of need and extends beyond traditional disease-specific approaches. Successive health policies reflect this shift with initiatives such as âOur health, our care, our sayâ (Department of Health 2006) and the long-term conditions National Service Framework (Department of Health 2005) aimed at services being delivered through a âwhole systems approachâ. Continuity of care is required across Âtraditional organisational boundaries through more effective collaboration of professionals. Key to this approach is engaging and supporting the patient in self-management. This chapter provides an overview of the changing context of healthcare services, including the innovative work of NHS Kidney Care in working across healthcare sectors and the current policy work which supports a more integrated and collaborative approach in supporting people with chronic kidney disease.
Chronic kidney disease in context
The effective management of chronic or long-term conditions poses a significant challenge for healthcare systems across the world. In England, around 15 million people have a long-term condition. While the number of Âpeople in England is likely to remain relatively steady, the number of people with multiple chronic conditions is expected to rise by a third over the next 10 years. People with long-term conditions account for 29% of the population in England, but are the most frequent users of healthcare services, accounting for 50% of all general practice appointments and 70% of all inpatient bed days. It is estimated that the treatment and care of those with long-term Âconditions accounts for 70% of the primary and acute care budget in England. This means around one-third of the population accounts for over two-thirds of the spend (Department of Health 2011). More significant than the impact on resources is the effect that long-term conditions have on quality of life. Each year around 170 000 people die prematurely in England, with the main causes being cancers and circulatory diseases. The proportion of people with a Âlimiting long-term condition in work is a third lower than among those without (Department of Health 2011).
Healthcare services continue to be organised around specific conditions. Even for people with a single chronic condition, care is typically provided across a number of different health professionals and organisations. The resultant discontinuity and fragmentation of care can add to an already high disease burden (Nolte & McKee 2008) at the same time as increasing care costs through the duplication of interventions, omissions in treatment and miscommunication. Patient safety is also threatened (Boerma 2006). Whilst improvement initiatives have typically focused on optimising the clinical aspects of chronic care, this alone has not been as effective as wider initiatives that have included service redesign (Coleman et al. 2009, Curry & Ham 2010, Goodwin et al. 2012). How and where care is provided has important implications for the effectiveness and sustainability of long-term care, and strong primary care is considered to be central to improving patient outcomes and controlling costs (Roland et al. 2007). Patient-centred care, self-management support, improved continuity and coordination have all been identified as key contributors of quality in chronic care but can only be delivered through patients, professionals and organisations working more collaboratively together (Wagner 1996, Greaves & Campbell 2007).
Chronic kidney disease (CKD) describes abnormal kidney function and/or structure. It is common, frequently unrecognised, and it often exists together with other conditions (for example, cardiovascular disease and diabetes). The risk of developing CKD increases with age, and some conditions that coexist with CKD become more severe as kidney dysfunction advances. CKD covers a spectrum of health states including an asymptomatic period which is potentially detectable. Tests for CKD are both simple and widely available, and there is evidence that treatment can prevent or delay progression, reduce or Âprevent the development of complications and reduce the risk of cardiovascular Âdisease. In cases where progression cannot be prevented, kidney function may deteriorate to stage 5, requiring life-saving dialysis, a kidney transplant or Âconservative management.
Estimates suggest that there about 4.5 million people in England with CKD. Since 2006, the prevalence of CKD has been reported annually in general practice and has seen a steady rise from 3% to 4.3% in 2009/10. However, compared with an estimated prevalence of 8.8%, diagnosis and ascertainment nationally is still only around half of the expected prevalence. Overall, there are an estimated 1.95 million people in England with undiagnosed CKD, who are therefore untreated and at risk of faster disease progression.
The policy context
In 2010, the UK government set out its long-term vision for the future of the National Health Service (NHS) and health services in England in the NHS White Paper, Equity and Excellence: Liberating the NHS. It committed to put the patient at the heart of services through greater choice and control including:
- greater shared decision making and the principle of âno decision about me without meâ
- greater choice of treatment and access to information
- a focus on personalised care that reflects individualsâ health and care needs, supports carers and encourages strong joint arrangements and local Âpartnerships
Legislation to support this policy direction has since been enacted in the Health and Social Care Act (2012). The White Paper also committed the NHS to focus on outcomes and the quality standards that deliver them. The governmentâs objectives are to reduce mortality and morbidity, increase safety, and improve patient experience and outcomes for all. To this end, quality standards, developed by the National Institute for Health and Clinical Excellence (NICE), will inform the commissioning of all NHS care.
This approach builds upon and develops further the improvements achieved by the implementation of the National Service Frameworks (NSFs). The NSFs set clear quality requirements for care, based on the best evidence of what treatments and services work most effectively, seeking to ensure an equity of services irrespective of where they are delivered. The NSF for renal services (Department of Health 2004â05) placed a strong emphasis on identifying the condition early in primary care settings, slowing down its progress and minimising its impact on peopleâs lives. It led to significant improvements in the way kidney disease is managed. The NICE quality standards take this further and are a set of specific, concise statements that act as markers of high-Âquality, cost-effective patient care, covering the treatment and prevention of different diseases and conditions. Derived from the best available evidence such as NICE guidance and other accredited sources, they are developed Âindependently by NICE in collaboration with the NHS, social care professionals, their partners and service users. The quality standards are organised around five national outcome goals or domains, covering the breadth of NHS activity (Table 1.1), and they address the three dimensions of quality: clinical effectiveness, patient safety and patient experience. They enable:
Table 1.1 NHS Quality and Outcomes Framework: five domains, three dimensions.
Domain 1 | Preventing people from dying prematurely | |
Domain 2 | Enhancing quality of life for people with long-term conditions | Effectiveness |
Domain 3 | Helping people to recover from episodes of ill health or following injury | |
Domain 4 | Ensuring people have a positive experience of care | Experience |
Domain 5 | Treating and caring for people in a safe environment and protecting them from avoidable harm | Safety |
- health and social care professionals to make decisions about care based on the latest evidence and best practice
- patients to understand what service they can expect from their health and social care providers
- NHS trusts to quickly and easily examine the clinical performance of their organisation and assess the standards of care they provide
- commissioners to be confident that the services they are providing are high quality and cost-effective
NICE published its quality standards for chronic kidney disease in 2011 (Table 1.2).
In addition to informing commissioning decisions, quality standards can also be aligned with the NHS funding system to encourage providers to follow best practice. In 2011, a best practice tariff for renal dialysis was introduced, paying significantly more for dialysis sessions that are delivered through definitive access (arteriovenous fistula or graft) than for those that are not. This is known to be better for patients because the faster flow rates result in more effective and efficient dialysis and it is much safer because of the reduced risk of infection. The level of the tariff was set so that providers with 75% (increased yearly by 5% to meet the Renal Association clinical guidelines of 85%) of their patients on definitive access would receive the same level of funding as under the previous system. In addition to rewarding services that do better than this, the tariff also provided a strong lever for those that were below this level to bring their services in line with best clinical guidance.
Table 1.2 NICE quality standards for chronic kidney disease.
National Institute for Health and Clinical Excellence (2011) âChronic Kidney Disease quality standardâ. London: NICE. Available from www.nice.org.uk. Reproduced with permission.
1 | People with risk factors for CKD are offered testing, and people with CKD are correctly identified. |
2 | People with CKD who may benefit from specialist care are referred for specialist assessment in accordance with NICE guidance. |
3 | People with CKD have a current agreed care plan appropriate to the stage and rate of progression of CKD. |
4 | People with CKD are assessed for cardiovascular risk. |
5 | People with higher levels of proteinuria, and people with diabetes and microalbuminuria, are enabled to safely maintain their systolic blood pressure within a target range 120â129 mmHg and their diastolic blood pressure below 80 mmHg. |
6 | People with CKD are assessed for disease progression. |
7 | People with CKD who become acutely unwell have their medication reviewed, and receive an assessment of volume status and renal function. |
8 | People with anaemia of CKD have access to and receive anaemia treatment in accordance with NICE guidance. |
9 | People with progressive CKD whose eGFR is less than 20 mL/min/1.73 m2, and/or who are likely to progress to established kidney failure within 12 months, receive unbiased personalised information on established kidney failure and renal replacement therapy options. |
10 | People with established renal failure have access to psychosocial support (which may include support with personal, family, financial, employment and/or social needs) appropriate to their circumstances. |
11 | People with CKD are support... |