People with serious long-term conditions have been encouraged to learn about and manage their own conditions by accessing courses such as the Expert Patients Programme (Expert Patients Programme Community Interest Company 2011). Healthcare professionals have taught patients how to titrate their medication, plan their appointments with GPs, text or telephone support groups and update their prescriptions on line.
In 2005 the National Service Framework for Long-term Conditions (Department of Health 2005) set out policy aims for people living with chronic disease. These included:
- Giving people choice, through services planned and delivered around their individual needs.
- Supporting people to live independently and play their full part in society.
- It is widely agreed that taking control of a long-term condition is empowering and promotes physical and mental wellbeing. However, to self-manage their health, patients need to be able to:
- Access information about their medicines and advice about taking them.
- Understand test results and what they mean for management of their condition.
- Find sources of reliable and up-to-date health information to meet their needs.
- Find out about national and local support groups and organisations.
- Access generic or condition-specific education programmes.
- Gain access to technologies to assist them in self-monitoring and self-medicating (British Medical Association 2007).
Barriers and problems
Patients may face bureaucracy and barriers to managing their own conditions, leaving them feeling disempowered and frustrated, and therefore critical of self-management. Admission to residential homes can place constraints on patients’ ability to contact medical staff directly and limit their access to technology that they previously used, such as electronic scales to assist in the management of heart failure.
Patients entering residential care are likely to have deterioration in their physical or mental wellbeing, and are likely to experience discomfort and a possible reduction in self-esteem. It may be argued that as nurses we should be supportive of the skills and knowledge they have gained and view them as the expert in managing their condition.
Early in the patient’s stay, systematic assessment should establish what the person previously did to manage their condition, what specific knowledge they have about signs that indicate they are becoming unwell, or at what stage they require further healthcare support. Increasingly, people with long-term conditions monitor their physiological observations and staff should understand what parameters are normal for that patient.
Nurses have a duty to advocate for patients (Nursing and Midwifery Council 2008) and in a care setting this may mean reducing barriers to medicine management or enabling access to other health and social care professionals.
Duty of care
Conversely, we may need to support patients for whom physical management of their own care is difficult but who retain the knowledge and skill to direct care to increase their wellbeing. This may mean altering organisation-wide policies, such as physiological measurements that trigger contacts to GPs, particularly if the person’s normal parameters fall outside what is considered to be safe.
People entering a care setting are rarely physically fit and well and our duty of care means we must evaluate an individual’s wellbeing over time. If a patient has become too unwell then we must provide support to ensure their safety, but this should mean focusing on what the patient is able to do for themselves, not what they are unable to do.
Residential care is a perfect opportunity to maintain and promote self-management, because access to healthcare professionals, who are skilled at promoting this, occurs daily and each interaction is an opportunity for mutual education. To support this, nurses caring for patients in residential settings must have the competencies required to manage long-term conditions, and the knowledge and skills of nurses in residential settings should be comparable with that given to patients in their own homes.
References
British Medical Association (2007) Enabling People with Long-term Conditions to Self-manage their Health: A Resource for GPs. BMA, London.
Department of Health (2005) National Service Framework for Long-term Conditions. DH, London.
Expert Patients Programme Community Interest Company (2011) Self-care Reduces Costs and Improves Health –
The Evidence. EPPCIC, London.
Nursing and Midwifery Council (2008) The Code: Standards of Conduct, Performance and Ethics for Nurses and Midwives. NMC, London.