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

Introduction

Lymphoedema is a serious long-term condition, often under-recognised and under-reported by the NHS in Scotland. There are thought to be approximately 20,000 people living with lymphoedema in Scotland. In this Scottish Medical and Scientific Advisory Committee (SMASAC) report we provide information on the nature and extent of the problem, diagnosis and management (including supported self management). We go on to make a number of recommendations for SGHSCD, territorial Health Boards, NHS Education Scotland and Healthcare Improvement Scotland which we believe will help improve both equity and quality of care for patients with this condition. We have focused on using whatever evidence is available and highlight areas where further research is needed.

The overall approach we suggest is that of coordinated, equitable and accessible services across Scotland supported by developing education and training of appropriate skills and knowledge for health professionals who may deal with lymphoedema whether that is in general practice, the community or more specialised settings. Access to a specialised surgical opinion for a small proportion of patients most severely affected is an important recommendation.

We highlight the problems of obesity and immobility which can contribute to deterioration; to address these we suggest ideas for supported self management as well as other modalities of treatment for patients. Timely advice and education could have a significant role in reducing the incidence and severity of lymphoedema. We believe that such anticipatory and preventive approaches could make a substantial difference to the quality of life of many patients with this under-recognised and complex condition. Our recommendations should be seen in the context of the forthcoming integration of health and social care in Scotland, set out in the Public Bodies (Joint Working) Bill 2013.

This report builds on several previous strands of work.

A Scottish Medical Advisor's Scientific Advisory Group (SMASAC) developed a draft pathway for lymphoedema care in 2009. Work undertaken by Breakthrough Breast Cancer made an initial set of management recommendations in 2011. Macmillan Cancer Support has developed further recommendations through work hosted by the Health and Social Care Alliance for Scotland (ALLIANCE). The need for national recommendations on the treatment of people with or at risk of lymphoedema was recognised in 2012 by the CMO, Sir Harry Burns.

In June 2012 SMASAC therefore convened this Short Life Working Group on Lymphoedema with a view to producing these recommendations. Members (Appendix 1) were co-opted from SMASAC (specialist clinical representatives), the Macmillan Lymphoedema Project (Project Manager), the University of Glasgow, and the Scottish Lymphoedema Practitioners Network. We have also sought the views of patients with lymphoedema, and this is reflected in our findings and recommendations. The inaugural meeting of the Working Group was held in September 2012 with a view to presenting final recommendations to SMASAC in September 2013.

Initial work by the University of Glasgow and the Macmillan Lymphoedema Project (Sneddon et al 2008) identified inequity of service provision across Scotland, especially for patients with a diagnosis other than breast cancer. Some services are poorly resourced and there is evidence that many clinicians have significant learning needs. Lack of recognition of the condition and its treatment may impact on clinical management and mean opportunities to prevent complications are missed. Some patients have substantial distress and unmet physical and psychological support needs.

Due to the similarity of the ambitions of both the SMASAC Short Life Working Group and the Macmillan Lymphoedema Project for Scotland we felt that the joint production of national recommendations would use the strengths of both approaches, involving specialists, general practitioners and nurses, lymphoedema professionals and patients, and this is reflected in this report. We propose a model which is a comprehensive NHS Scotland Lymphoedema Service based on a tiered approach.

I am very grateful to all members of the group for their substantial contributions to the report and the commitment and energy that they have shown over the past year. I believe that in the NHS in Scotland, we now have a firm basis for improving both equity and quality of care for patients with lymphoedema.

Dr John Gillies

Chair