A CHRONIC PROBLEM
Chronic diseases have a huge impact on people's quality of life and on their families, and it consumes a large proportion of health and social care resources.
As a result, the Government is at last taking chronic disease seriously. Previously left on the margins of NHS policy, it is now in the spotlight, with implications for nurses across primary and secondary care.
Although the term 'chronic disease' is commonly used, it is gradually being replaced by 'living with a long-term condition' to avoid emphasis on the disease rather than the person.
The Government is keen to tackle chronic disease management because the impact of chronic disease on individual patients and the NHS is enormous. There are several statistics to choose from to back this up:
- About 60% of adults report some form of long-term or chronic health problem
- People with long-term health problems are significantly more likely to see their GP (accounting for about 80% of GP consultations), to be admitted as an inpatient (on average about twice as likely, given a particular problem) and stay in hospital for longer
- Use of the NHS increases with the number of problems reported (the 15% of people with three or more problems account for almost 30% of inpatient days). The Department of Health (DH) estimates that, overall, 10% of patients account for 55% of hospital inpatient stays and just 5% of inpatients account for 42% of inpatient bed days.
- The World Health Organization estimates that by 2030 the incidence of chronic disease in the over 65s will have doubled.
The Government wants to provide a much better service for patients with these conditions. The benefits to patients of staying out of hospital are clear but there is also strong evidence of the benefits to the whole service (see Box 1, right).
In the past few years, the Government has been making moves towards chronic disease management, particularly with the introduction of national service frameworks (NSFs) and the Expert Patient Programme. This summer, however, the Government has pushed chronic disease management right to the top of its priority list with two key publications.
Public service agreements
Public service agreements (PSAs) are the basis of the DH's commitment to the Treasury on what it will achieve, starting from next year.
This time the DH has included chronic disease management and improving patient experience among the five targets, neither of which featured last time in 2002.
The PSA requires the NHS to 'improve health outcomes for people with long-term conditions by offering a personalised care plan for vulnerable people most at risk; and to reduce emergency bed days by 5% by 2008, through improved care in primary care and community settings for people with long-term conditions.'
The NHS Improvement Plan
The NHS Improvement Plan, published in June, also draws attention to the health and cost benefits of effective chronic disease management. It prioritises the need for better information about and for patients, as well as improved support and care for people with chronic conditions, provided closer to their home (Box 2).
Between 2004 and 2008, nurses will need to concentrate on improving services for patients with long-term conditions using three key priorities. These are presented in the NHS Improvement Plan as a pyramid showing the levels of support for patients (see Figure 2).
First level: self-management
People with long-term conditions can often live healthier lives when they are supported to manage their chronic disease. This can help them to prevent complications, slow down deterioration and avoid getting further conditions. The majority of people with long-term conditions fall into this category.
The Expert Patient Programme (EPP), set up in April 2002, runs national training courses to help people with long-term conditions develop new skills to manage their illness.
Compared with other patients, 'expert' patients report that their health is better, and they cope better with fatigue, feel less limited in what they can do and are less dependent on hospital care.
By 2008, the Expert Patient Programme will be in effect throughout the whole of the NHS. What does this mean for nurses?
- The management of a condition by the patient requires the delivery of personalised systematic support
- You need to draw up clear, individualised care plans to support the involvement of individuals in their own care. This process should include agreeing personal goals and how an individual's condition is to be managed until their next review
- You should identify their health, social care and education needs and decide how these will be met and who will be responsible for delivering each service
- You also need to ensure patients get high-quality, structured and continuous education, locally organised and developed in consultation with the people who have the condition
- Lastly, you should be involved in conducting regular reviews, based on accurate registers and care plans.
Second level: disease management
People in this group need more proactive support in caring for themselves, with particular support on avoiding complications or severe phases of illness and slowing the progression of their disease.
Disease management involves multidisciplinary teams providing high-quality evidence-based care to patients, often through a specialist nurse, following agreed protocols and pathways for managing specific diseases. It requires good information systems - patient registries, care planning, shared electronic health records.
The national service frameworks and the National Institute for Clinical Excellence guidance provide the frameworks for many of these conditions. Scotland and Wales have similar agreements. The rolling programme of NSFs was launched in April 1998. There is usually one new framework a year and this year the subject is long-term conditions (Box 3, p15).
The new contract for GPs provides strong financial incentives to those practices that seek out patients who can benefit from such support.
What does this mean for nurses?
To work in this way means:
- You need a clear understanding of who in your area has a chronic condition and where they receive their care
- You need to maintain accurate registers which can be used to invite patients in once or twice a year to check their condition
- You need to regularly audit registers so that those who have trouble managing their condition are easily identified. Registers should highlight newly diagnosed patients who may be struggling to adjust to their condition.
Third level: Case management
This is for a smaller group of patients who may often have three or more long-term health problems, and require more active and specialist care to meet their complex needs and provide a proper personalised service.
Research has shown that case management can improve patients' lives dramatically, reduce emergency admissions to hospital and enable patients to return home more quickly.
The results of a pilot of active management of conditions at Castlefields Health Centre in Runcorn, Cheshire, showed a 15% reduction in admissions for older people and the average length of stay fell by 31%, from 6.2 days to 4.3 days.
There are four main case-management approaches, which are organised by private health-care companies from the US.
- Evercare. This uses advanced nurse practitioners to identify and monitor older people, often with multiple chronic diseases, who account for a disproportionate amount of unplanned acute care. The nurses then review and manage their care intensively to minimise the chances of further admissions. Since April 2003, nine primary care trusts (PCTs) have been adapting and implementing this model of care for at-risk elderly people (Box 4, p15). The pilot ended in the summer and an interim evaluation of the project is expected this month. An initial study by Evercare, published in May, reported that this high-risk population represented just 3% of people over 65, but was responsible for 35% of unplanned hospital admissions. Also, the new advanced primary nurse role can lead to better co-ordination of pro-active care of older patients and better collaboration with GPs and geriatric consultants (see case study, left).
- Kaiser. Some PCTs have been piloting an approach developed by the Kaiser Permanente Group (Box 5, right). The organisation is helping them to develop integrated and co-ordinated services, with the focus on managing chronic conditions to avoid unnecessary admissions to hospital. The Kaiser approach uses the pyramid (Figure 1), which focuses on supported self-care, specialist disease management and individual case management.
- Wagner or ICIC model. This Improving Chronic Illness Care model focuses on the essential interplay between an informed, active patient and a prepared, pro-active practice team. It emphasises the need for six policy and service components to be in place to get the best results:
- Organisation of health care
- Clinical information systems
- Delivery system design
- Decision support
- Self-management support
- Community resources and policies.
It is widely used in the USA and in some places in the UK (see case study overleaf).
- Pfizer. In February 2004, Pfizer Ltd and Haringey TPCT launched a 15-month pilot programme designed to provide individualised support for 600 patients within the London borough suffering from diabetes, heart failure and coronary heart disease. Four full-time care managers or 'health coaches' provide regular coaching interventions for patients based on their individual needs. The care managers, all qualified nurses, use InformaCare decision support software developed by Pfizer Health Solutions as the basis for a system of telephone based co-ordinated care. Patient recruitment is well under way and telephone care management has started. The initial experiences of getting the project started will be published towards the end of 2004.
A review by Matrix Research and Consultancy (see Resources) of three of the approaches was undertaken between January and March 2004. The pilots being compared were Northampton PCT using Kaiser, Haringey using the Pfizer Healthcare Solutions InformaCare approach and Walsall PCT using Evercare. The report was published in the summer. Table 1 lists the core elements of each.
What does this mean for nurses?
This level of care has perhaps the greatest impact for nurses with the Government's target for the NHS to recruit 3000 community matrons. The role of the community matron is equivalent to the case management models currently being piloted, such as the advanced primary nurses in the Evercare model and the Castlefields model. This role provides an excellent development opportunity for district nurses.
As a community matron you will:
- Assess patients' needs and then work with local GPs and primary care teams to develop tailored, personal plans
- Act as a main contact point for the patient and co-ordinate help from professionals who can prevent worsening health or hospitalisation
- Be responsible for planning, managing and co-ordinating the care of people with highly complex needs living in their own homes and communities
- Be responsible for the quality of care, visibility to patients and carers and the authority to act to improve standards
- Need to be competent in high level physical and psychosocial assessment, pharmacology and medicines management, communication, and working across organisational boundaries.
Many of these policy drives may seem to apply to primary care nurses only. However, the Government is keen to stress that none of its targets can be met without support from acute trusts. The Government's targets for personalised care plans and cutting bed days cross primary and secondary care and make certain that the whole system is tackled rather than just short-term fixes.
The idea of greater joint working between primary and secondary care providers to achieve better chronic disease management for patients was highlighted by a report of a joint working party of the Royal College of Physicians, the Royal College of General Practitioners and the NHS Alliance (see Resources).
Highlighted in the report is the challenge of joint working in the UK. It also recommends setting up joint clinical directorates that span primary and secondary care to improve understanding between the groups involved.
Although the case-management approach is useful, there is a danger that by concentrating on the tiny minority of 'high-risk' patients, PCTs could get diverted from the wider chronic disease management agenda.
There has also been concern that US for-profit companies pose a threat to the state funded principles of the NHS. For this reason, some of the companies are likely to act in a consultancy role to the NHS or be involved in data collection and analysis rather than necessarily taking on the delivery of care on a large scale.
Though experts reckon the targets set by the Government are achievable, the extra workload in primary care is likely to fall on nurses and there are concerns over whether there are enough nurses and whether the primary care sector is yet ready to take on the extra workload.
It is likely that the companies involved in case management projects will expand to other strategic health authorities as well as Wales, Scotland and Northern Ireland. The UK pilots have also been fairly narrow in scope, studying very elderly people based in their own homes, the target population may widen in future.
Nurses are fundamental to good chronic disease management both in becoming community matrons to deliver case management and in helping patients to look after themselves and in adhering to national service frameworks and guidelines.
Chronic disease management
- Poor management of chronic disease leads to unnecessary admissions to hospital for patients and costs to the NHS
- There are three levels of chronic disease management: self care, disease management and case management
- Primary and secondary care nurses have an important role in helping patients manage chronic disease better.
Consultant Nurse for Older People and Vulnerable Adults, and Professional Lead for Advanced Primary Nurses, Bristol North PCT
'When we advertised the role of advanced primary nurse it attracted much interest from both community and acute staff who wanted to develop autonomous, advanced, clinical roles.
'As an indicator of high risk we used over 65 years of age and two admissions in a year. The data on hospital admissions is being collated now but we know that over 98% of patients and their carers rated the service as excellent, very good or good. Over 98% felt they were involved as much as they wanted to be. Surprisingly, this high-risk patient group were largely unknown to existing services. Only 33% were on an active district nurse caseload and 24% on a social services caseload. This taught us the importance of using data to identify high-risk populations.
'The nurses were given extra training so they now have more medical skills such as physical examination, diagnosis and prescribing. They worked with patients with multiple conditions so there was one person with an overall view who could liaise with the key worker in hospital and set realistic rehabilitation goals and be involved in the discharge plan.
'The nurses attend six-weekly meetings with hospital, GP, social services and intermediate care staff to look at the cases of people who have attended hospital to see what could have been done to prevent admission. This helps identify recurring issues.
'Nurses who are starting a chronic disease management programme need first of all to try to identify the groups they need to work with and then set clear targets such as to improve quality of life, decrease GP visits, or improve control of diabetes. Then they need to look at how to achieve it - are our services patient focused or service focused? Flexible services like telephone appointments, email consultations, group teaching sessions and evening appointments can make huge differences to response. Sometimes patients who are at highest risk do not attend our services and this requires creative thinking and partnership working for the situation to improve.
'Research has shown that concordance with treatment improves with individualised, patient focused models and this has always been a strength of nursing, which can now show benefits in better outcomes for patients.'
Chief Executive, Redbridge Primary Care Trust, is leading a team to improve the health of people suffering with chronic illnesses in North East London Strategic Health Authority. This is part of a project involving NHS chief executives across the sector
'In North East London we are taking a whole systems approach to managing long-term conditions. It will be based on the Improving Chronic Illness Care (ICIC) model. We will be promoting self-management and patient empowerment through the development of case management and the Expert Patient Programme.
'To ensure this is successful we will also be working very closely with our social care and voluntary sector colleagues who are key to this agenda. Nursing roles and competencies will be developed to meet the new challenges.
'The ICIC model takes a holistic approach to managing high-quality care. It centres on the community, health system, self-management support, decision support and clinical information systems. The end result is healthier patients, more satisfied providers of care and cost savings.'
Good chronic disease management
- Use of information systems to access key data on individuals and populations
- Identifying patients with chronic disease
- Stratifying patients by risk
- Involving patients in their own care
- Co-ordinating care (using case managers)
- Using multidisciplinary teams
- Integrating specialist and generalist expertise
- Integrating care across organisational boundaries
- Aiming to minimise unnecessary visits and admissions
- Providing care in the least intensive setting.
Resources and websites
RCPL, RCGP, NHS Alliance. (2004)Clinicians, Services and Commissioning in Chronic Disease Management in the NHS. Available at www/rcgp.org.uk/corporateposition/chronic-disease-nhs.pdf
The NatPaCT websitewww.natpact.nhs.uk/contains the Chronic Disease Compendium, put together by the DH, the NHS Improvement Plan and the Matrix Research and Consultancy Ltd report Managing Chronic Disease: What to do as a health and social care community - learning from Kaiser, Pfizer and United Healthcare in England.
Other useful websites include: