Friday 7th September 2012
Rhian Davies, Macmillan University Teacher, writes about the development of the Macmillan Lymphoedema Academy.
Lymphoedema affects around100,000 people in the UK.
It is a swelling in an arm, leg or other body part because of a build up of fluid in the body's tissues. It can occur as a result of cancer treatment or because of cancer itself.
While the availability of services has improved in the last 20 years, people with cancer have told Macmillan that access to help and support remains varied. Services for those affected by non-cancer related lymphoedema are even more patchy.[3,4,5]
Most people at risk of, or affected by lymphoedema, could be helped to recognise signs and symptoms and to self-manage. However, once people have lymphoedema, they are likely to require specialist support at some point in their care pathway.
Between 2006 and 2009, Macmillan spent around £1.7 million on lymphoedema initiatives for both cancer and non-cancer related lymphoedema. One such initiative was the Macmillan Lymphoedema Education Project (MLEP), which started in 2003.
The Peacock Charitable Trust funded the project with Macmillan's support. The overall aim was to develop teachers in lymphoedema management, with a focus on manual lymphatic drainage (MLD) – a specialised, gentle type of massage.
MLD training had been difficult to access as there were very few teachers based in the UK. It was anticipated that by increasing the number of training opportunities for NHS and hospice staff, it would be possible to increase the number of lymphoedema-trained healthcare professionals in the UK.
The three-year project was led by Dr Jacquelyne Todd, Consultant Physiotherapist (Lymphoedema), who was trained by Drs John and Judith Casley-Smith to teach the Modern management of lymphoedema course. She was assisted by Catherine Groom, MLD Therapist and teacher of the Casley-Smith technique.
The techniqueis an approach to decongestivelymphatic therapy, which involvesspecialised massage, compression,exercise and skin care.Ten healthcare professionalsincluding nurses, physiotherapists andan occupational therapist, took partin the teacher training programme,during which the curriculum wasstandardised and teaching materials were developed.
After completing the programme in 2006, these professionals developed the Macmillan Lymphoedema Academy
(MLA), which offers registered healthcare professionals accredited and non accredited courses across the UK.The group also peer reviews teachers to maintain standards.
Over 500 professionals have successfully completed one of the many courses offered. There is the added benefit that someone trained to this level may be supporting three or four others, teaching lymphoedema care locally, and managing a caseload of patients who would otherwise not be managed adequately.
Working with Macmillan to extend the work of the group has been rewarding for the teachers, and has improved the skills of many professionals who have attended the courses. Patients within and beyond the UK are now feeling the benefits of this work.
The influence of the MLA now extends beyond the UK. Two members represent the MLA on the board of Casley-Smith International, a collective of international teachers of Casley-Smith technique. Dr Todd has been key to writing the curriculum for training future Casley-Smith teachers anywhere in the world so that there are consistent standards of Casley-Smith MLD education internationally.
Casley-Smith International and the MLA will continue to update and modernise learning materials through its website.
Community of practice
In 2010, the MLA broadened its remit beyond education and has since become the Macmillan Lymphoedema Academy Community of Practice. The community has reviewed patient information resources and developed:
- a 3D educational tool to demonstrate lymphotomes and watersheds to lymphoedema students (available at Learn Zone).
- genital and lower limb prosthetic models to teach lymphoedema students, patients and their carers the skills of bandaging genital oedema.
Rhian discusses lymphoedema
1. Lymphoedema Support Network website. (accessed 4 December 2011).
2. Macmillan Cancer Support. Specialist lymphoedema services: An evidence review [PDF, 74kb]. 2011.
3. Lam R, Wallace A, Burbidge B, Franks PJ. and Moffatt C J. Experiences of patients with lymphoedema [PDF, 193kb]. Journal of Lymphoedema. 2006. 1(1):16–21.
4. Davies R. An Investigation of the Education Needs of Health Care Professionals in Scotland in relation to Lymphoedema Care [PDF, 268kb]. 2012.
5. Sneddon M, Pearson J and Franks P. Lymphoedema: Service Provision and Needs in Scotland. 2008. University of Glasgow and Macmillan Cancer Support.