SMASAC Short Life Working Group on Lymphoedema - Lymphoedema Care in Scotland, Achieving Equity and Quality

Executive Summary

• Lymphoedema is a common and under-recognised condition, affecting up to 21,000 people in Scotland.
• Those at risk include patients with a family history of lymphoedema, cancer, inflammatory joint disease, burns, chronic oedema, immobility and recurrent cellulitis.
• Early recognition and initiation of treatment can prevent complications in those at risk.

• Primary care needs to be supported as the main burden of care falls on primary care to support the patients to manage the condition and its complications, and to signpost patients to relevant materials.
• The priorities identified by lymphoedema patients are: receiving the best treatment for lymphoedema care; a prompt diagnosis; being able to access treatment quickly; rapid treatment of cellulitis; prompt replacement of hosiery; GP/lymphoedema care provider being aware of the condition; access to care locally; and being supported to self-manage.

• Management consists of skin care, physical therapy to maximize lymph flow and venous return, compression therapy and psychosocial support. Surgery is necessary for a small number of severe cases.
• Supported self management is an essential part of modern treatment of lymphoedema.
• There is currently a wide variation in the organisation and delivery of lymphoedema services across Health Boards.
• A comprehensive NHS Scotland Lymphoedema Service, based on a tiered approach is suggested.
• Improved education and training for all health professionals involved in lymphoedema care is necessary.
• Further recommendations include improved coding, development of QPIs, a SIGN guideline for lymphoedema and suggestions for research funding streams.