The National Lymphoedema Framework Project.
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Phil Morgan, PhD, RGN, RCNT, is post-doctoral research fellow
Debra Doherty, MSc, RGN, is clinical project director, Lymohoedema Framework; Christine Moffatt, PhD, MA, RGN, DN, is professor of nursing, and co-director; Peter Franks, PhD, is professor of health sciences, and co-director, all at the Centre for Research and Implementation of Clinical Practice, Thames Valley University, LondonThe project is collaborating with the Lymphoedema Support Network, a national patient support group. This will help to ensure that services really do meet the needs of patients. There is also collaboration with the British Lymphology Society and the wound care and compression industry, who are all working to ensure that appropriate products are developed and made available to patients.
The original epidemiology study (Moffatt et al, 2003) highlighted that care is mainly based on the underlying cause of the lymphoedema, and is mainly focused on cancer-related oedema, with most services and resources being provided by specialist practitioners, often in hospitals. This focus on hospital-based specialist provision can mean that patients have to have complicated lymphoedema before treatment is made available. Many of these patients may have reached this stage because of a lack of early recognition of the problem and appropriate intervention. The main thrust of this project is, therefore, to develop an effective service for patients with lymphoedema from whatever cause, by developing the skills and knowledge of community health care practitioners such as GPs, community and practice nurses and carers in social care settings to ensure early recognition of the problem, followed by treatment and long-term management. Focus of the project
The principal focus of the project is to develop, implement and evaluate an integrated, primary care trust-based model of care for patients with lymphoedema. There are three stages to the project: - Evaluating current care (baseline); - Developing and implementing the new service; - Evaluating the effects of the new service. The research design allows for a comprehensive evaluation of a wide range of outcomes including clinical data, quality of life, the patient experience and the cost-effectiveness of care. With funding from the King's Fund, the project began in one primary care trust in South West London in February 2002. It has since been launched nationally, with 17 such trusts across England taking part. These trusts are currently implementing and evaluating primary care-based lymphoedema services based on national standards and a best practice document that have been developed through the consensus process. This integrated approach to lymphoedema management has a number of anticipated benefits, notably to reduce the number of patients with complications from lymphoedema, such as acute infections leading to hospital admission, and to ensure early identification and effective care based on agreed standards. By these means, some of the psychological distress associated with lymphoedema should be able to be prevented. It is hoped that such a model of care will improve the quality of life for many people with lymphoedema.