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

Appendix 6: Further Information and Guidance

Detailed international and national guidance is available for professionals from the International Lymphoedema Framework (www.lympho.org), British Lymphology Society (www.thebls.com) and Lymphoedema Scotland (www.lymphoedema-scotland.org).

Patient specific information is available from the Lymphoedema Support Network (www.lymphoedema.org), Macmillan Cancer Support (www.macmillan.org.uk; this is cancer specific) and NHS Inform (www.nhsinform.co.uk/cancer/treatments/lymphoedema).

Information on generic resources for self management and supported self management can be obtained from the Health and Social Care Alliance for Scotland (the ALLIANCE; www.alliance-scotland.org.uk/what-we-do/self-management). Lymphoedema-specific self management information is available via the Macmillan Lymphoedema Project for Scotland Top Tips for the Self Management of Lymphoedema - A Guide. The Guide was co-created with people living with lymphoedema over two workshops and postal responses during Lymphoedema Awareness Week 2012. The Guide is also accessible via the Macmillan Cancer Support Lymphoedema webpages and NHS Inform.

Generic learning resources for healthcare workers to develop knowledge and understanding to support self management are available from NHS Education for Scotland: http://www.nes.scot.nhs.uk/education-and-training/by-theme-initiative/self-management/supporting-self-management.aspx. BMJ Learning has produced a module on lymphoedema: http://learning.bmj.com/learning/home.html

'Gaun Yersel' A Self Management Strategy for Scotland was launched in 2008 in partnership between the Scottish Government and the Long Term Conditions Alliance for Scotland. The strategy states that partnership with the individual is central to self management during five key life stages: diagnosis, day to day living, progression, transitions and end of life. Gaun Yersel recognised that successful self management depends on professionals understanding and enabling a person-centred approach in which the individual is the leading partner in managing their own life and condition(s). http://www.scotland.gov.uk/Publications/2008/10/GaunYersel.

The Lymphoedema Support Network (LSN) is a national UK charity which provides the largest information resource to support people with lymphoedema, including fact sheets, self management DVDs and a regular newsletter (www.lymphoedema.org). It also promotes a network of support groups across the UK and has an on-line community, the Lymphoedema Support Network (http://lsn.healthunlocked.com/), which enables people to get answers to their health questions from other people living with lymphoedema, thereby supporting self management.

In addition to the above lymphoedema-specific information, generic self management information was developed by the Health and Social Care Alliance for Scotland's (ALLIANCE) My Condition, My Terms, My Life Campaign. This campaign aims to help improve public understanding of what self management means for people living with long term medical conditions and encourages people with long term medical conditions, and the people looking after them, to adopt a self management approach. http://www.myconditionmylife.org/.

Lymphoedema Scotland (http://lymphoedema-scotland.org) provides advice for professionals on how they can provide self management support. Information on offer includes skin care and cellulitis, compression garments, movement and exercise, massage, and weight and lymphoedema. The site also provides links to other useful resources including the British Lymphology Society (www.thebls.com), which has a large amount of information and resources for professionals (NB membership is required to access some resources).

Empowering Cancer Nurses in Europe (EONS) (http://www.cancernurse.eu) is a pan-European organisation dedicated to the support and development of cancer nurses. Through their individual members and national societies they engage in projects to help nurses develop their skills, network with each other and raise the profile of cancer nursing across Europe.

Spring Soiree Event Report: Developing a Vision and Priorities for Lymphoedema Care in Scotland (2013). Health and Social Care Alliance Scotland/Macmillan Cancer Support. Available at:- http://www.alliance-scotland.org.uk/what-we-do/projects/macmillan-lymphoedema-project-scotland/