Lymphoedema Community of Practice | Breast Cancer Awareness Month | Guest Blog

22 October 2020 - by David Allen

As part of Breast Cancer Awareness month, nurse consultant Mary Woods from the Royal Marsden Hospital tells us more about lymphoedema, a condition that can be caused by cancer treatment, and what is being done by the London Lymphoedema Community of Practice to develop and improve the care provided.

“Cancer related lymphoedema is a long-term incurable condition affecting the lives of many people who have undergone treatment for cancer. Despite advances in cancer treatment, swelling can develop at any time in areas of the body where lymph nodes have been removed or irradiated. Living with lymphoedema can significantly impact on psychological wellbeing and quality of life.  Management of the condition can be challenging, requiring the right advice at the right time from skilled therapists able to support people with lymphoedema to be free from infection and able to successfully self-manage and control their swelling. 

People who have undergone treatment for breast cancer can develop lymphoedema in the arm or breast on the affected side. The risk of developing swelling follows the surgical removal of one or more lymph nodes and / or irradiation treatment completed in lymph node areas. Early access to advice and support, and the adoption of daily health behaviours aimed at ensuring the skin is kept healthy and free from infection, coupled with appropriate exercises to encourage lymph drainage can minimise the risk of developing lymphoedema. If swelling develops, a skilled lymphoedema therapist will identify priorities in its management and utilise a range of approaches to treatment. The overall aim is to reduce and control any swelling and provide the person affected with the knowledge and skills to self- manage their lymphoedema on a daily basis. 

In order to improve the outcome of those affected, lymphoedema therapists in London have formed a ‘Lymphoedema Community of Practice (CoP)’ with the aim of providing a professional platform for the discussion of relevant issues. The opportunity to share best practice, learn and support each other has enabled lymphoedema therapists in the CoP to identify where standards of care in their area can be improved and to enable them to develop personally and professionally.

The group was formed two years ago and has received support from the Transforming Cancer Services Team (TCST), Macmillan and a skilled facilitator. Meetings have been held three times a year and over this short period of time, the group has worked together on several projects. Collaborative projects have included a full review of The Commissioning Guidance for Lymphoedema Services for Adults Living with and Beyond Cancer which was launched in March 2020, and a pilot project to establish the benefit of a minimum dataset which resulted in two conference presentations at national level.  

One of the strengths of the group is its diversity. Lymphoedema therapists work in different settings with different experiences and these provide a rich insight into the range of problems and concerns that exist and influence the standard of care provided for people with lymphoedema. 

Further long and short- term projects are planned for the CoP over the forthcoming year to build on the work achieved so far and we are now funded by the North East London Cancer Alliance. It is hoped that the group will expand further and that the collaboration between lymphoedema therapists will continue to reduce fragmentation of services and facilitate discussions which raise the standard of care for people with lymphoedema across London.”

People with lymphoedema can obtain further information and support from The Lymphoedema Support Group (LSN) www.lymphoedema.org

Lymphoedema therapists can obtain further information and support from The British Lymphology Society (BLS) www.thebls.com

Professionals wishing to join the webinar for the launch the Commissioning Guidance for Lymphoedema Services for Adults living with and beyond cancer on November 3rd from Eventbrite https://www.eventbrite.com/e/webinar-launch-of-commissioning-guidance-for-lymphoedema-services-tickets-124060836301

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