VOL: 101, ISSUE: 25, PAGE NO: 46
Elisabeth Bryant, BSc, RGN, Nurse Practitioner Diploma, CPT, is programme leader for chronic disease management, National Respiratory Training Centre, Warwick
Alan has been admitted to hospital three times in the past six months with exacerbations of chronic obstructive pulmonary disease (COPD). His wife, Pam, who has diabetes and dementia is admitted to the local nursing home on each occasion, because Alan is her main carer. At home the specialist respiratory nurse from the hospital, the GP and practice nurse provide support. The community nursing team visit Alan and Pam regularly, but Alan gets overtired within weeks of being discharged because of the round-the-clock care that he wants to give his partner of 56 years.
Nurses in primary, secondary or tertiary care, are familiar with the needs of patients who have been coping with illness for a long time (see the case study of Alan above).
Assisting people to maintain their dignity as well as the daily functions of living while they struggle with increasing disability has always been at the core of nursing. What is new is the recognition by governments and international organisations such as the World Health Organization that, by 2020, chronic disease will be the main cause of death globally (Epping-Jordan et al, 2001).
The global increase in long-term conditions and chronic ill health means that health care resources must be urgently redirected to prevention and treatment of chronic disease and that health agencies must take action to improve clinical care and outcomes for chronic conditions (Box 1).
NHS initiatives for chronic disease
The NSF for Long-term Conditions looks specifically at neurological disorders, but suggests that much of the guidance can apply to anyone living with a long-term condition (DoH, 2005a). It outlines 11 quality requirements that need to be fully implemented by 2015, and which are designed to offer comprehensive and timely support to help people with neurological disease.
There is no NSF for respiratory disease but respiratory clinicians who want to improve patient care may strengthen their case by referring and aspiring to the quality requirements in the NSF for Long-term Conditions.
The NHS strategy for the management of long-term conditions (DoH, 2005b) outlines three levels of need in people with such conditions who require different levels of health care involvement:
- Effective disease management;
- Integrated care.
The ideal service therefore involves review and access to help, so that the support that is provided promotes confident independence and as much self-care as possible.
Trudie has had moderate asthma since childhood, but since having a young family of her own her symptoms have become more troublesome. She has found it difficult to attend the surgery at a suitable time, and it was only after admission to hospital for a severe episode that she and her practice team have looked at how to manage her asthma together. After a thorough review, including discussing her fear of becoming dependent on medication and the difficulty of getting a clinic appointment, Trudie and the practice nurse developed an action plan. Trudie now knows how to use the inhalers effectively and how to recognise a worsening of her asthma. Furthermore, much of her regular asthma review will be done by telephone.
The case of Trudie highlights the importance of training health professionals how to listen to patients so that they know how to tailor interventions to enable the patient to remain in control. Ultimately, it is only Trudie who can make self-care work, which is why it is important to identify the issues that matter most to the patient and then work out how to manage any problems.
Newman et al (2004) looked at the effectiveness of 63 programmes of self-management interventions for asthma, diabetes and arthritis, with significantly different formats and methods. Cognitive behaviour therapy, goal-setting and problem-solving all produced benefits in the short term, but the long-term impact has not yet been evaluated. Sometimes patients are not keen to take on the responsibility for changing their situation, and it is only by sensitive planning of small steps that the health professional can demonstrate that change is possible and worthwhile (Asen et al, 2004).
Often, people with respiratory disease value support from each other (see Useful web sites).
Effective disease management
Sam, a smoker of 35 years, lives on his own and had been coping with a chronic productive cough and frequent chest infections for the past five years. He was treated with courses of antibiotics, and had a chest X-ray two years ago. His breathlessness did not improve a great deal in between episodes of infections and he was afraid that he had undiagnosed lung cancer. He was attending a smoking cessation open session at the local health centre and asked the nurse there about his breathing problems. After spirometry and a computed tomography (CT) scan, Sam was diagnosed with moderate COPD and bronchiectasis. He is still trying to give up smoking, and has been enrolled on the pulmonary rehabilitation course in the civic centre. He now has the confidence to walk to the weekly sessions.
Patients like Sam want rapid expert diagnosis and needs assessment. In a manifesto last year from the Long-term Medical Conditions Alliance entitled 17 Million Reasons, one of the three key areas identified for improvement in chronic disease services was diagnosis. For more information see: www.17millionreasons.org
Other issues highlighted were:
- The need for good quality information so that individuals can make informed choices;
- The need for the patient and clinicians to develop a care plan that draws together an integrated pathway that is held by the patient.
Both the guideline for COPD from the National Institute for Clinical Excellence (NICE, 2004) and the new General Medical Services Contract (NHS Confederation, 2004) underline the need for sound diagnosis and consistent review.
But diagnosis is not enough. Nurses working with people with COPD are also measuring the impact of the disease on the patient’s life. Assessing breathlessness, walking distance and health status inform treatment and support, and help to measure progress (Bellamy and Booker, 2004).
Many patients with COPD and other long-term respiratory conditions are clinically depressed (Bellamy and Booker, 2004), and may need medication and input from the mental health team. Skilled listening, and recognition by the nurse of how they feel, can help to relieve the isolation. Implementing a service that meets individual needs and produces quality improvement, demands careful planning, and good liaison between practice and community teams, and between primary and secondary care. Examples of shared planning can be found in Supporting People with Long-term Conditions (DoH, 2005b).
Holt (2005) has drawn together the basic requirements for running a primary care COPD service in line with the new GMS (general practice) contract and the NICE (2004) guidelines on the management of COPD.
Kate is 83, and has severe COPD, congestive cardiac failure and bilateral macular degeneration. Her daughter, who lives 10 miles away, is her main carer, but is struggling to be available when her mother needs her. Kate has a much-loved dog, and does not want to leave her home. She has just been discharged from hospital after an episode of bilateral infected leg ulcers and an exacerbation of COPD.
There are many people with multiple complex problems such as Kate’s who need someone to bring together all the threads of care, and build a flexible, responsive plan that reduces illness and hospital admissions, and increases patients’ control over their illness. The strategy outlined in Supporting People with Long-term Conditions (DoH, 2005b; 2005c) introduced the concept of community matrons - experienced nurses with highly developed case management skills who would manage 50-80 patients.
Health communities are expected to have 3,000 community matrons in post by March 2007 in order to be able to provide case management for the most vulnerable patients. Studies in pilot sites have shown a reduction in the length of stay in hospital and an increase in quality of life outcomes when there is overall case management by advanced practitioners (Hutt et al, 2004).
Primary care trusts need to look at the resources that are available locally (Hutt et al, 2004). Community nurses and specialist nurses have often built up integrated pathways that already enable smooth transition and early discharge. Targeted training of existing staff can equip them to become potential community matrons.
In areas where patients are not receiving timely care, new roles may be developed. Currently, the competence framework for case management of long-term conditions is under consultation that is being conducted by Skills for Health (www.skillsfor health.org.uk), but the community matron will need to use a combination of nursing, medical and social care competences, and will be co-ordinating care across organisational boundaries.
Health professionals are part of the support team for patients living with a long-term condition. The local service should provide robust planning so that continuity of care is protected. The clinical team is there to listen, to diagnose and to treat, but the patient is, or should be, the person who holds the care plan.
Breathe Easy Clubs: Breathe Easy is the support network of the British Lung Foundation. It provides information, support and friendship to all people living with a lung condition, their family, friends and carers. Further information: www.lunguk.org/
Expert Patient Programme: www.expertpatients.nhs.uk
Diploma of Higher Education in Chronic Disease Management. Level 2 module: Principles of Managing Long Term Conditions.
The education alliance between the National Respiratory Training Centre, Warwick Diabetes and Heartsave has developed distance learning courses, validated by the Open University, to meet the needs of health professionals working in the area of chronic disease.
For further details, visit: www.nrtc.org.uk