VOL: 98, ISSUE: 12, PAGE NO: 48
Teresa Coe, BSc Psychology, RGN, RSCN, Dip Asthma Care, is asthma team leader;Alison Nettleship, RGN, RSCN, Dip Asthma Care, is paediatric asthma nurse, Whipps Cross University Hospital NHS Trust, London;Tony Haggar is a professor at Middlesex University Business School
Chronic illness is placing an increasingly large burden on health care resources. In the UK one in three individuals has a chronic illness and in the USA the four top chronic diseases (cardiovascular disease, cancer, chronic obstructive pulmonary disease and diabetes) account for 72% of deaths. This is consistent with most other industrialised countries (Murray and Lopez, 1996). This burden is likely to increase in the future because elderly people are most vulnerable to chronic disease and the UK’s population is ageing.
Chronic illness is placing an increasingly large burden on health care resources. In the UK one in three individuals has a chronic illness and in the USA the four top chronic diseases (cardiovascular disease, cancer, chronic obstructive pulmonary disease and diabetes) account for 72% of deaths. This is consistent with most other industrialised countries (Murray and Lopez, 1996). This burden is likely to increase in the future because elderly people are most vulnerable to chronic disease and the UK’s population is ageing. Redbridge and Waltham Forest Health Authority (RWFHA) was aware of the continuing pressures that chronic illness was placing on its health providers but had not quantified the extent of the problem. It therefore sponsored a study to understand fully how chronic illness was affecting the health of its population and examine the way patients accessed services in its hospitals and primary care facilities. The study concluded the following: - The pressures caused by emergency demands adversely affected providers’ capacity to cope, to the detriment of quality and elective services; - Consequently, the patients’ experience was often traumatic and left clinical carers dissatisfied and dismayed at the quality of care they were obliged to administer; - Much of the emergency pressures resulted from patients with acute exacerbations of chronic illness; - Unless a radical change took place in the way services were delivered, existing patterns of care would continue despite the most heroic efforts of NHS staff.
Calculating the burden of chronic illness
Detailed quantitative research was conducted (three years’ data) to identify which chronic conditions consumed the most resources. These were grouped into six health resource groups (HRGs), which are broadly equivalent to biological systems - for instance, respiratory and cardiac - and a picture was drawn up in terms of hospital admissions, bed days and prescription costs. Chronic illness was confirmed as a major contributor to the health authority’s difficulties. It was implicated in 44% of non-elective admissions and consumed 64% of all hospital non-elective bed days.This consumption of resources was driven by the high prevalence of chronic illness in the population and the fact that people who are chronically ill are often elderly and infirm, leading to long in-patient stays and high re-admission rates. A further objective was to examine the quality of the patient’s journey through the system, with a particular emphasis on understanding how chronically ill patients were managed within primary and secondary care and across their interface. The picture that emerged was of a local health service in deep crisis, struggling to meet the needs of its population. Within secondary care high levels of emergency admissions were disrupting other important processes, such as elective admissions, and this was leading to difficulties in meeting waiting list targets and maintaining an acceptable quality of care. Meanwhile, primary care was being squeezed between the competing pressures of rising patient demands and delays in obtaining secondary care opinions for patients. There was an impression of a health system which was reactive to unabated emergency demand, with little opportunity to draw breath and take a more strategic and considered view about how to tackle its problems. The study concluded that there was an overwhelming need for change. Present services were finding it difficult enough to cope with the current demand, let alone deal with the increases in chronic illness expected in the future. There was unanimous agreement within the local health service that a modernising agenda was needed to improve existing patterns of service in a way that would assist them in delivering services of quality in a dignified and acceptable way for patients.
A new model of care for people with a chronic illness
The health authority embraced the need for total re-engineering of the continuum of care for chronically ill patients. It therefore undertook a review of different health care systems of industrialised countries, with the aim of developing a care model for the management of chronic illness. Following the review, it concluded that progress could be made only if greater emphasis was placed on managing patients and their diseases throughout the life cycle. This should include improving prevention, raising patients’ understanding of their diseases, ensuring management was evidence-based and, most importantly, ensuring effective collaboration between the different disciplines required to maintain patients at home. A new model of care, comprehensive care coordination (‘C3’), was developed, based on this understanding. It involved four key components: - Demand management - gives patients, GPs and other health care professionals access to information and support that leads to more appropriate levels of resource utilisation. Examples include care plans, telephone triage, self-care and educational programmes; - Disease management - manages the full course of the illness, from prevention to diagnosis to outcome, with the objective of sustaining a patient along a pathway of health. The intention is to identify when patients may be veering off this pathway and to intervene to bring them back to their previous level of health; - Episodic care management - instigated when a patient has an acute exacerbation and requires intervention. The acute event is managed according to evidence-based pathways and protocols to ensure rapid resolution and to manage the immediate post-event period. An example is integrated care pathways, which manage the in-patient period and the discharge and review process; - Care coordination - the ‘hub’ of C3. The intention is to coordinate all services around the patient to provide the most effective care. For these components to be successful, it was considered vital to support them with relevant incentives, appropriate technology and structures to maintain performance improvement.
Piloting the model of care
It was decided to pilot the new model of care across two diseases (asthma and heart failure). This would allow a full understanding of the service needs and its potential impact on investment strategies, training requirements, staffing needs and other issues that would need to be planned for. After examining a number of options for modernising the model of care, it was considered essential that C3 would need to be implemented across both primary and secondary care and would require the engagement of all care agencies in the health economy, including social services. The pilots would also focus on providing care for a particular group of patients suffering from a particular disease. This ensured that they would not be constrained by current service models, but would cut across organisational boundaries to deliver a more holistic service to patients than would otherwise be possible. Only in this way would it be possible to deliver the full range of benefits to the chronically ill. The service was also designed to support, rather than replace, established services, while providing more intensive care to selected patients. Asthma and congestive heart failure were selected for the pilot for the following reasons: - Both were key local priorities; - They cause significant (avoidable) morbidity and consume significant resources; - They have well established guidelines and management programmes; - Evidence suggests that they offer significant opportunities for improvements in key indicators, using C3 methodologies; - Improvements could potentially be demonstrable within time constraints; - They offer benefits to both primary care and secondary care; - Historically, there had been strong working relationships between primary and secondary care. Multidisciplinary teams were brought together to design the pilots’ service structures and protocols. Team members included primary and secondary care doctors and nurses, social workers, health visitors, therapists and patient representative groups. Each pilot has a team of specialist nurses managing approximately 100-150 patients each on a case management basis. They will focus on the most vulnerable patients, as these are likely to gain the greatest benefits from C3. The service will be proactive and patients will be regularly contacted to review their care programme. The new service will operate across the primary/secondary care interface, so patients will be seen wherever needed and most appropriate - in hospital or clinics, over the phone or at home. The nurses’ key roles include: - Educating patients and their carers in the disease; - Reviewing patients proactively and regularly to ensure compliance and identify any early signs that they might be encountering difficulties; - Managing patients according to protocols agreed between primary and secondary care; this includes initiating or changing medications and ordering diagnostic tests; - Coordinating services around patients to ensure they have the necessary support to remain at home; - Accessing specialist advice whenever this is felt to be appropriate; - Providing support and advice to GPs, practice nurses and other health care professionals to raise standards of care for all patients, not simply those taking part in the pilots; - Identifying how services can be improved and initiating new ways of working with local providers to improve the coordination of services. The pilots have been operating since the beginning of the year, and the asthma service is described in detail below.
The asthma service
The improvement of asthma services had been identified as a local priority. Recent figures from the National Asthma Campaign (NAC) suggest that five million people in the UK are receiving treatment for asthma and that this treatment is costing the NHS 850m a year. Half of this is spent on the 22% of patients who experience acute asthma attacks (National Asthma Campaign, 2001). However, health care costs only amount to a third of the total cost of asthma to society, as it results in the loss of over 18 million working days each year (National Asthma Campaign, 1999). Asthma is only one of many chronic illnesses that are putting an increasing burden on health care resources (National Asthma Campaign, 2001). It is estimated that one in three people in the UK have a chronic illness, and this is set to rise because of our ageing population. Young people also represent a significant proportion of those with chronic illness (Department of Health, 1999). The team currently consists of two nurses - an H-grade lead nurse and a G-grade paediatric nurse. A G-grade adult nurse is due to start shortly. All the nurses hold diplomas in asthma care and have considerable experience of caring for people with the condition. The team will see anyone over the age of five with a diagnosis of asthma whose GP is in one of Waltham Forest’s two primary care trusts. This is essential because clinical responsibility for patients remains with the GP. Patients who do not have a GP are given advice on how to get one. The team receives referrals from acute services, including out-patients, adult wards, the paediatric unit, A&E and paediatric A&E. Primary care referrals come from GPs, school nurses, health visitors, practice nurses and district nurses. Patients and carers can self-refer, and the team is also establishing links with NHS Direct, two local GP deputising services and local pharmacists. On receiving a referral the team contacts the GP to gain consent to see the patient. If patients are on the hospital’s acute wards they are seen before discharge to assess their asthma knowledge and inhaler technique. If they meet the team’s referral criteria they receive information about the project, and if they want support from the team a follow-up appointment is arranged to take place at a time and place convenient for the patient, ideally within two days of discharge. Seeing patients during acute admissions is often a good opportunity for providing essential information and advice concerning asthma management. The team therefore endeavours to see all patients who are admitted with asthma, even if they are not suitable to join the project. Referrals from other sources are seen within two weeks at a time and place convenient for the patient. Many are seen in clinics across the borough if they prefer not to be seen at home.
The first consultation
This takes about an hour and a half, during which the nurse explains the project, ensuring the patient is aware that the service is a pilot at present and that information may used for audit and to support the project. Patients are also reassured that the service is voluntary and that they are free to leave at any time. An initial assessment is then made, including the following: - Full medical history; - Full history of their asthma (previous acute attacks, admissions, triggers and symptoms); - The patient’s knowledge of their asthma, their medication, how it works and inhaler technique; - Smoking history; - Vaccination history. An explanation of asthma and how the medicines work is given. Team members feel it is important to encourage patients to learn their drugs’ names, doses and when they should take them. This is the first step towards patients and carers taking ownership of the disease and is necessary before self-management can be discussed and encouraged. Patients are given a diary at this consultation to record peak flows and symptoms and are encouraged to do this for at least two weeks to enable the team to confirm their diagnosis (if this is required) and establish the initial level of control. Following this and all subsequent appointments a summary of the visit and a note of any changes in medication are sent to the GP and the patient. A follow-up appointment is arranged, but patients are encouraged to ring their named nurse in between appointments if necessary.
The second consultation
This usually takes place two weeks later. At this and every subsequent consultation the nurse completes an asthma assessment form, which involves recording current medication and asthma symptoms, which are assessed using the following three questions: - Over the past month have you had your usual asthma symptoms (for instance, cough, wheeze, breathlessness or chest tightness) at night? - Have you had your usual asthma symptoms during the day? - Has your asthma stopped you from carrying out your normal activities? Physical assessment includes pulse, blood pressure, respiratory rate, chest signs (wheeze, breathlessness and cough) peak flow and/or spirometry. The patient’s knowledge of asthma is also assessed, including how their drugs work, doses and when they are taken, understanding of the disease process and how to recognise worsening symptoms. The asthma diary is reviewed, and the nurse and patient create a self-management plan if the patient feels this would be helpful (Box 1). This is individual to each patient and is either based on their symptoms or on peak flow readings. Some patients do not want a self-management plan, preferring to leave the responsibility for altering medication with health professionals. These patients are encouraged to ring their asthma nurse for advice. Patients are also encouraged to have influenza and pneumovax vaccinations, and those who smoke are encouraged to stop. One member of the team is currently undergoing smoking cessation training. Patients also receive a copy of their notes at this visit. These form part of their client-held record and are theirs to keep. They are encouraged to write any comments or questions in their notes and to take the notes along when they visit other health professionals so they can also write in them (Box 2). The team has a patient group direction that is due to be ratified by the drugs and therapeutics committee shortly, so they will be able to initiate treatment and adjust doses following the British Thoracic Society stepwise asthma guidelines (1995). They can make and receive direct referrals, admit and discharge patients, manage patient caseloads and contribute to the organisation of local services. The team also works across primary and secondary care and manages patients according to evidence-based protocols that have been agreed by members of both primary and secondary care. Subsequent visits are arranged according to the severity of the patient’s symptoms, their asthma knowledge and compliance. The aim is to empower patients or carers to manage their own asthma. When they are able to do this and their symptoms are minimal their care is transferred back to the GP and practice nurse. Until then, appointments are arranged as frequently as required - this can be weekly, if needed, and telephone support is available in between. It is expected that the team will be able to look after a total of 500 patients at any one time. This is only a small fraction of people with asthma in Waltham Forest, but it is expected that these will be the hardest to manage, either because they have severe asthma, are non-compliant or do not have access to ongoing support. It is hoped that the team will have an indirect effect on patients they are not actually seeing through the support and advice they offer to practice nurses and other professionals and spreading good practice. While there were areas of excellent asthma care in the area before the team was developed, this was not consistent, and it was noticed that inhaled steroids were underprescribed compared to similar areas. The team’s remit is to ensure that all asthma patients in the area have equal access to support and advice. It is believed that the team’s input will reduce A&E attendance, hospital admissions and inappropriate GP attendance. It should also increase uptake of inhaled steroids and vaccinations, expand the number of those who quit smoking and improve patient satisfaction. Patients have been involved with the development of the service through patient focus groups and having representatives from the community health council on the design team. A full evaluation of the two pilots should be completed by the end of June.
National Asthma Campaign Providence House Providence Place London N1 ONT website: www.asthma.org.uk National Respiratory Training Centre The Athenaeum 10 Church Street Warwick CV34 4AB