People with long term conditions should be involved in the development of self management tools. A trust explains how they consulted patients to meet their needs
Terry Robinson, MSc, BSc, Dip, RGN, is specialist respiratory nurse, Harrogate and District Foundation Trust.
Robinson T (2010) Developing self management plans to help people with COPD to control their condition. Nursing Times;106: 17, early online publication.
This article describes how a self management plan for people with COPD was developed and implemented following consultation with patients and the multidisciplinary team.
Keywords COPD, Long term conditions, Respiratory care
- This article has been doule blind peer reviewed.
The Department of Health (2010; 2006) recommends self management tools for all people with long term conditions, such as those with chronic obstructive pulmonary disease (COPD).
The Harrogate and District Foundation Trust respiratory team consulted extensively with patients who have COPD and the respiratory multidisciplinary team to inform the development of an individualised management plan for use in primary, intermediate and acute care.
The framework underlying the hand held record encompasses three components: patient-centeredness, collaboration and evidence based practice.
Identifying the plan’s content
We asked 50 patients with a confirmed diagnosis of COPD to complete the Bristol COPD Knowledge Questionnaire (White et al, 2006). While the mean length of time from diagnosis was over five years, the results revealed many patients knew little about their condition and were unaware of strategies to manage it.
Following the questionnaires, six patients with COPD and four carers, all of whom were recruited from the local British Lung Foundation Breathe Easy group, attended a focus group. This highlighted many of the gaps in knowledge identified by the questionnaire, and participants provided advice on how information should be presented and the type of language and terminology that should be used in a management plan.
A second focus group involving members of the respiratory multidisciplinary team was held. This group consisted of doctors, nurses and a physiotherapist working across primary, intermediate and acute care. It was set up to discuss the findings from the questionnaires and patient/carer focus group and decide the content, design and implementation of the management plan. The plan’s aims are listed in Box 1.
Box 1. Aims of the management plan
- Increase patients’ knowledge about their condition
- Give them control of their illness
- Provide information about sources of support to patients and carers
- Provide rapid access to advice and treatment when required
- Improve continuity of care
Management plan structure
The final document includes an envelope containing information on:
- Aims of COPD care;
- How the condition affects the lungs;
- The benefits of keeping physically active;
- Individual respiratory and medical history;
- Information about respiratory medicines and individual medication plan;
- Use of oxygen and nebulised therapies;
- Identifying symptoms of an exacerbation and individual management plan;
- Goal setting for the patient, carer and healthcare professionals.
A launch meeting was held and all healthcare professionals working with people with COPD in the community and hospital were invited to find out more about the management plan. Patients were then given the record following hospital admissions, at routine clinic appointments in outpatient departments or at their GP surgery. Community nurses give the record to those who were confined to home.
A pilot of a patient and carer education group was also organised for one hour a week for four weeks. Specialist and community nurses facilitated the group in the community and attendees were given the management plan on the first week. Sessions included: how respiratory drugs work; concordance; managing breathlessness; identifying exacerbations; and self management. The evaluation of the course was extremely positive and further education groups have been organised.
Using the record
The record contains information about patients’ normal health status and they are encouraged to bring their record to all consultations with healthcare practitioners. It is anticipated that it will be useful when patients see staff who do not know them, such as out of hours GPs.
The hand held record is now being used widely throughout the local primary care trust. The community respiratory nurse specialists are running education sessions for practice nurses and GPs on how to use the record. A palliative care insert is currently being developed, to be given to patients at an appropriate time.
The aim of this initiative was to improve the patient experience by developing new ways of working. This was the first nurse led initiative in the local acute trust which looked prospectively at patients’ knowledge gaps and information needs before developing a new service.
Developing and implementing the COPD hand held record has highlighted the knowledge gaps of those with the condition and also of healthcare professionals. Working in an integrated way with patients, carers and colleagues from primary, intermediate and acute care has helped bridge these gaps.
- This project was runner up in the poster presentation competition at the ARNS conference 2009.
Department of Health (2010) National Strategy for COPD (Draft Consultation). London: DH.
Department of Health (2006) Supporting People with Long Term Conditions to Self Care. London: DH.
White R et al (2006) Bristol COPD Knowledge Questionnaire (BCKQ): testing what we teach patients about COPD. Chronic Respiratory Disease; 3: 3, 123-131.