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The number of people living in the UK with a long term condition is increasing rapidly. As healthcare provision improves and the availability of healthcare increases, the number of people living longer increases. The proportion of the population aged over 80 years will increase to one in twelve over the next 25 years, and one in four will be over the age of 65 years. (Health Delivery Directorate Improvement and Support Team, 2009)
As people get older their health may begin to change and are more likely to suffer from illnesses and chronic conditions. At present, care for people with long term conditions, particularly older people, is reactive and interventions generally only take place after an event or exacerbation of a long term illness. A system change by NHS Scotland aims to deliver an integrated, coordinated and preventative health and social care system, especially for people with long term conditions (NHS Scotland, 2007).
Definition of a Long Term Condition
A long term condition (also called chronic condition) can be defined as health problems that require ongoing care and management over a period of years or decades (WHO, 2012). Long term conditions can sometimes be referred to as chronic diseases. They are conditions that last for a year or longer and can greatly impact on a person’s life which may result in the person requiring continued support and care. Long term conditions can affect children as well as adults and is not only the elderly who can be affected. It is also not just confined to physical illness but it can also include a range of mental health illnesses. Amongst the most common long term conditions are diabetes, epilepsy, heart disease, chronic pain, arthritis, some mental health problems, asthma and chronic obstructive pulmonary disease (COPD) (NHS, 2012).
Socio-Political Context of Delivery of Care
In the past, care for people with long term conditions was generally reactive and unplanned (DHSSPS, 2011). People with long term conditions are twice as likely to be admitted to hospital, and tend to have longer hospital stays. They also account for over 60% of hospital bed days used. Most people who need long term residential care have complex needs from multiple long term conditions (The Scottish Government, 2012).
Scotland’s approach to the management of long term conditions is based upon the Chronic Care Model developed by Ed Wagner and his colleagues at the MacColl Institute for Healthcare Innovation. This model suggests that if conditions are created to support a partnership that is productive between people who are knowledgeable and are capable of implementing changes and with those who have the long term conditions, then this can be positive steps towards improving the way care is delivered (The Scottish Government, 2009).
In the past, care for people with long term conditions was generally reactive and unplanned (DHSSPS, 2011). In 2007, The Scottish Government developed an action plan to better manage care for people with long term conditions. Adopting Wagner’s Chronic Care model, The Scottish Governments plan was reflected in Better Health, Better Care. The 6 domains of the Chronic Care Model have been mapped to 6 key components of the model for long term conditions care in Scotland:-
Multi-professional care teams and their partnership with people with long term conditions
Self management of LTC’s strategy Gaun Yersel
primary care, hospitals, and social work integrating care
Integrating evidence-based medicine and clinical guidelines into care and support delivery processes
Sharing of Data through supportive information systems
Assuring appropriate delivery of care through the national performance framework, HEAT targets and the Community Care Outcomes Framework
How the care is delivered
In order to deliver a proactive and coordinated care management approach for people with complex and changing needs, health and social care professionals require a range of competencies and skills. Health professionals that work together to deliver this anticipatory care are community nurses, community psychiatric nurses, social workers and care managers (HDDIST, 2009).
Anticipatory and Advance care planning (ACP) both adopt a “thinking ahead” philosophy of care. This allows practitioners and their teams to work with patients and their family members to set and achieve common goals to make sure the right course of treatment has been chosen and is carried out at the right time for the best interests of the patient and their family members or support network (The Scottish Government, 2010). Advance care planning is the term most commonly referred to in end of life care, although it does incorporate the writing of wills or “Living Wills” now known as advance directives or advance decisions which can be done by the well person early on in life to plan for what may happen at the end of life. Anticipatory care planning is more commonly applied to support those living with a long term condition to plan for an expected change in health or social status. It also incorporates health improvement and staying well. Completion of a common document called an anticipatory care plan is suggested for both long term conditions and in palliative care (The Scottish Government, 2010). Anticipatory care, as an approach, was pioneered in the 1960s by Van den Dool in The Netherlands and Julian Tudor Hart in Wales. Both approaches involved identifying patients who were at high risk of specific diseases or conditions. This was achieved by reviewing patient medical records when the opportunity arose during routine consultation or when the patient made contact with their medical practice (O’Donnell et al, 2012).
As an individual’s condition appears to be more complex it may be useful to discuss legal and practical issues, as well as individual care and support preferences. As the needs and dependency of an individual increase, it may become appropriate to discuss end of life preferences (Scottish Government, 2009). The Anticipatory Care Plan may then include information about the person’s:
concerns and personal goals
the persons own understanding of their illness and how it will progress
a person’s own wishes for end of life care, including preference of where care is carried out, as well as their views about the level of interventions, treatments and whether CPR is wanted (Scottish Government, 2009).
The Scottish Government (2010) has outlined its commitment to developing a health service that tackles inequalities in health, addressing both health and social determinants, and to delivering a health service that moves away from a reactive, episodic model of care, where the patient is a passive recipient, to a system that anticipates health needs before they arise and that delivers continuous, integrated, preventive care with the patient as partner. Such a model of care has been termed anticipatory care (O’Donnell et al, 2012).
Recently, the Scottish Government has established Keep Well, a national programme of anticipatory care targeting deprived populations at risk of developing cardiovascular disease (CVD), which brings together a number of the active ingredients important to anticipatory care (O’Donnell et al, 2012). NHS Health Scotland provides the national programme management role for Keep Well. Established before the implementation of this government programme, The National Coronary Heart Disease Demonstration Project, Have a Heart Paisley, was a Scottish Government-funded national health demonstration project (2001-2008) hosted by NHS Greater Glasgow and Clyde. It was a partnership between the local community, primary and secondary care and the local authority (NHS Health Scotland, 2012). The initial project was established to reduce heart disease and promote healthier, longer lives for the people of Paisley. It was one of four projects outlined in the Governments White paper ‘Towards a Healthier Scotland’. ‘Have a Heart Paisley’ moved into its second phase in 2005 – 2008 which narrowed its focus and allowed an opportunity to build upon phase one. An anticipatory care report published in 2007 by Sridharan et al, outlined challenges for interventions such as Keep Well that are based on the vision described in Delivering for Health such as Identifying individuals within the different levels of disadvantage. Instead of a broad approach to identify a deprived area, a more focused approach may be required to help identify poor people in those deprived areas. The problem is that individuals with the greatest need (e.g. multiple disadvantaged populations with co morbid conditions) may be overlooked and the standard sampling frame such as a Central Data Repository (CDR) may not harness or identify populations with multiple disadvantages (Sridharan et al, 2007).
The Long Term Conditions Collaborative (LTCC), aims to support patients to develop person centred care that is effective, safe, timely and reliable, makes best use of the skills of the multi-professional team, and is supported by good communication and sharing of information across teams and care settings (The Scottish Government, 2010).
Models of Care
The Kaiser Permanente pyramid is a chronic care model which was developed by the Kaiser Permanente Health Institute in the United States. This chronic care model is not a fixed model and people can move up and down the levels as their condition, ability to cope and their general sense of well-being changes (The Scottish Government, 2009). Kaiser Permanente focuses on integrating organisations and disciplines. People with long term conditions are organised and managed according to need, with intensive management targeted at those at highest risk (NHS, 2006).
Research carried out by Baker et al (2012) aimed to identify a population who were at risk of admission to hospital and to provide an anticipatory care plan (ACP) for them. Baker et al (2012) aimed to determine whether, using primary and secondary care data to identify this population and then applying an ACP, can help to reduce hospital admission rates. The results of Baker et al (2012) study showed that whilst not significant, having an ACP and a co-ordinated team based approach can reduce admission rates and reduce hospital bed days. Baker et al (2012) found that a reduction in admission rates is mediated by an increase in transfers out from secondary hospitals to the community hospital and home. Several factors enabled this to happen: improved community support from families and carers who had a better understanding of the course of a disease, care workers who were able to prevent admissions and provide rapid support on discharge, as well as a coordinated approach and good liaison between the case manager, local nursing, and the practice (Baker et al, 2012).
Cleland, Moffat & Small (2012) carried out research to explore stakeholder views of the utility and design of a community-based anticipatory care service (CBACS) for COPD.
The key benefits of this service were seen to be reducing hospitalisation, educating patients in self-management in order to improve self-care and reduce acute admissions, and coordination of health and social care (Cleland et al, 2012).
ZuWallack & Nici, (2010), wrote an article describing the problems associated with the current care delivery approach for people with COPD. ZuWallack & Nici (2010) proposed a “Chronic Care model” for the primary care of people with long term illnesses such as COPD. This model had many similarities to the care approach set out in Better Health, Better Care, with 6 similar components. ZuWallack & Nici (2010) found that the integrated care approach is ideally suited to the management of chronic diseases, such as COPD. They claimed that Integrated care is patient centred but not limited to the traditional boundaries of the disease and is not overwhelmed by the complexities of the multi-morbid patient. ZuWallack & Nici (2010) claims that there is great emphasis on self management strategies and the co-ordination of care, all of which increase the lines of communication amongst the agencies involved in the care being delivered.
Role of the Case Manager
The evolving role of case manager in delivering anticipatory care to patients with long term conditions is key to ensuring that care and services for the individual are co-ordinated and do not become fragmented, confusing and overwhelming. It is an opportunity to make best use of the advanced level of knowledge, skills and competencies that District Nurses have developed (HDDIST, 2009). Good communication, co-ordination and information sharing within and between multi-disciplinary teams are essential to ensure that where a person moves between different care settings, for example between primary care and specialist services provided in secondary care, these transitions are seamless and co-ordinated (DHSSPSNI, 2012).
IN 2009, Information Services Division (ISD) developed The SPARRA tool. It identifies people who have entered a cycle of repeat admissions to hospital in the previous 3 years and predicts their risk of future hospitalisation. The information on the SPARRA lists supports the patient’s local team to provide the proactive, planned and co-ordinated care required for people with complex or frequently changing needs. Instead of reactive or crisis care, people and their carers will receive an improved service through a more robust assessment and care planning approach. Delivering continuous, supportive care with a single point of co-ordination improves the experience for the person and their carer; supports care at home and may prevent avoidable hospital admissions (ISD, 2009). SPARRA is only one way of identifying people at high risk of admissions. People who may benefit from care management can be identified by sharing local intelligence at Practice and locality team meetings and by using other community risk prediction tools (ISD, 2009).
End of Life Care
Palliative care has been described as the active total care of patients whose disease is not responsive to curative treatment. Problems can be encountered with the availability of medicines during the out-of-hours period. To maintain effective symptom control it is important that sufficient quantities of appropriate palliative care drugs, including CDs, are available to anticipate deterioration in the patient’s condition (NHS Scotland, 2012). Just in case’ boxes support anticipatory prescribing and access to palliative care medication for patients at the end of life. Adequate quantities of the appropriate medicines (including Controlled Drugs) are prescribed for the patient and stored in an identifiable container – the ‘just in case box’ – in the patient’s home or care home. This is intended to prevent unnecessary delays in symptom management especially out of hours and at weekends (NHS Scotland, 2012). The GP will assess the individual needs of the patient and will issue a prescription for the appropriate medication If symptoms develop the nurse can administer the appropriate drugs without having the delay of contacting the GP to prescribe them (NHS Scotland, 2012).
Making appropriate plans to meet a person’s changing needs and aid timely transitions to end of life care are critical components of the quality improvement process in health and social care (NHS, 2011). Care planning harnesses the care of people with and without capacity to make their own decisions. The assessment undertaken is person centred and it aims to establish the persons needs, preferences and personal goals relating to their own care and the decisions made to meet these goals with the available resources (NHS, 2011). It can be oriented towards meeting immediate needs, as well as predicting future needs and making appropriate arrangements or contingency plans to address these (NHS, 2011).
Where a person lacks capacity to decide, care planning must focus on determining their best interests. This can be achieved through discussions with the person’s family or close friends or carers and any decisions made must act to protect the person’s best interests (NHS, 2011).
Advance care planning (ACP) is a process of discussions with an individual and their care provider to determine the person’s wishes should their illness deteriorate in the future. ACP’s can lead to an advance statement, an Advance Decision to Refuse Treatment (ADRT), a Do Not Attempt Cardiopulmonary Resuscitation (DNACPR) decision or other types of decision, such as appointing a Lasting Power of Attorney (NHS, 2011).
In conclusion, planning should be tailored to individuals – a ‘one size fits all’ approach will not work (NHS, 2011). Individuals have the right to live well with their conditions that are managed holistically and within the boundaries of their own personal needs and desires. Everyone involved with the care planning for an individual should be available for opportunities for follow-on conversations and support. Discussing potential risks and benefits associated with different treatment options will help people make choices and have confidence in agreed treatment and care plans (NHS, 2011).
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