New guidance for commissioning lymphoedema care

Patients living with and beyond cancer to have better lymphoedema care

Healthy London Partnership is today publishing new guidance for commissioners to improve the quality of life for people with lymphoedema in London. The guidance identifies the gaps in services, how improvements can be made, what a good service looks like and how services can be evaluated. It also identifies the key education and training needs for the wider workforce and how they can be addressed. Download the guidance.

Dr Karen Robb, Macmillan Rehabilitation Clinical lead, Healthy London Partnership’s Transforming Cancer Services Team and author of the report said: “Lymphoedema can have a devastating impact on people surviving cancer, including uncontrolled pain, recurring episodes of infection, having to take time off work, or stop work completely.” 

“We found that reducing risks, early diagnosis, early intervention and help with self-management are fundamental to better outcomes for patients with lymphoedema and better value for money for the NHS. Ultimately, good lymphoedema care empowers individuals and makes a real difference to people’s lives.”

“This new guidance will help commissioners in London reflect on their current understanding of lymphoedema services, benchmark their services against best practice and provide the best available lymphoedema services for their communities.”

Dr Alexander Norman, Cancer Clinical Lead, NHS Richmond CCG and a member of Healthy London Partnership’s task and finish group said: “The challenges faced by services in London are long-standing and there are marked differences in the care that patients with this condition receive. It is clear there’s a need to change and this new guidance is a blueprint for the changes that the NHS can make to improve lymphoedema services in London.  

“The guidance provides a clear view of how to improve services across London and demonstrates "what good looks like" and a standard to be replicated as a commissioner.  This not only saves time but allows me to hit the ground running.  Effective treatments for cancer have resulted in a significant increase in the number of survivors – now we need to improve the quality of life for these individuals with lymphoedema”.

Despite some excellent lymphoedema services in London, there is still significant variation in waiting times for treatment and access to treatment of the capital. This is important because while lymphoedema is incurable, early diagnosis and treatment is crucial to achieving the best outcomes. There is much that can be done to improve symptoms, relieve pain and maximise quality of life and function for people with this condition.

England currently spends more than £178 million on admissions due to lymphoedema and it has been estimated that for every £1 invested in lymphoedema services, the NHS saves £100 by keeping people well and out of hospital.

Linda Patel, a breast cancer survivor who developed lymphoedema in her arm following a mastectomy said: “Put simply I was lucky, I believe that early intervention and the availability of lymphoedema service made all the difference to me. I am now free of the need for regular hospital appointments and I am able to self-manage my condition. My lymphoedema is an inconvenience but not a disability, but unfortunately this is not the case for other cancer survivors.”

There is considerable opportunity to make cost savings as well as improving the experience of patients surviving cancer through investment in specialist lymphoedema services. Accurate prescribing and dispensing of garments as well as education and training, of both the specialist and non-specialist lymphoedema workforce, are clear priorities moving forward.

The full report “Commissioning guidance for lymphoedema services in London" is available to download 



Notes to editors:

Healthy London Partnership formed in April 2015. It has been working across health and social care, and with the Greater London Authority, Public Health England, NHS England, London councils, Clinical Commissioning Groups, and Health Education England. We have united to amplify the efforts of a growing community of people and organisations that believe it is possible to achieve a healthier, more liveable global city by 2020.

Lymphoedema occurs when tissue swells due to a failure of lymphatic drainage and it can affect any part of the body. Lymphoedema can be classified as ‘Primary’, where there is an inherited lymphatic abnormality or ‘Secondary’, where the lymphatic system is damaged by trauma, disease or infection. People with certain types of cancer, including breast, gynaecological, urological, head and neck and melanoma, are at risk of developing secondary lymphoedema.

Although the focus of this guidance is on lymphoedema due to either cancer and/or cancer treatment it could be used in the planning of all lymphoedema services, regardless of cause.

People who are obese are particularly at risk of lymphoedema as well as those with medical conditions such as venous insufficiency, cellulitis, inflammatory conditions, uncontrolled skin conditions, heart, renal or liver failure and metabolic disturbances.