Transformation Partners in Health and Care > Resources > Commissioning guidance for lymphoedema

Commissioning Guidance for Lymphoedema Services for Adults Living with and Beyond Cancer 2020 – Guidance for commissioners to improve the quality of life for people with lymphoedema in London. 

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The aim of this revised guidance developed by TCST and the London Lymphoedema Community of Practice is to support Integrated Care Systems (ICS) in delivering high quality personalised care for people living with lymphoedema. This updated guidance builds on the work published in 2016 which was well received and had impact both regionally and nationally.

Since the 2016 Guidance, there has been an increase in the lymphoedema workforce in North East London, South East London, South West London and West Essex. In contrast, there has been a decrease in staffing in North Central London and North West London, and North West London is now a top priority for development of lymphoedema services.

This revised guidance:

  • Provides a high-level overview of lymphoedema and the key strategic challenges
  • Identifies how services are currently commissioned in London, identifying the gaps in services and workforce, and outlines where improvements are needed
  • Clearly sets out what a good service looks like, how it can be evaluated and what it could achieve in practice
  • Identifies the key education and training needs for the wider workforce and how they can be addressed
  • Outlines how the Guidance should be implemented and evaluated
  • Maps all of the specialist services in London and West Essex.


Recommendations for system leaders/commissioners

  • To commission lymphoedema at a STP level
  • To ensure that this guidance is referenced in Sustainability and Transformation Plans (STPs) and that lymphoedema (both primary and secondary) is reviewed in each Integrated Care System (ICS) as part of managing cancer as a long-term condition.
  • To ensure that there is better awareness of lymphoedema in primary care teams and that residents have equal access to lymphoedema services across London.

Recommendations for providers

  • Continue to support their staff to participate fully in the Lymphoedema COP
  • Ensure service users are central to all key decisions about their care, the principles of supported self-management are fully embedded in their services and that all patients have an individualised care plan. Signpost users to the online ‘Cancer Care Map’ as appropriate.
  • Develop plans, where necessary with Health Education England, for workforce education and training and succession planning.
  • Embed the lymphoedema minimum dataset as part of routine clinical practice
  • Include lymphoedema management in Trust’s Cancer MDT Operational Policies.
  • (NHS providers only) Ensure that ICD code I89.0 is used to record in-patient and outpatient lymphoedema activity and the appropriate ICD codes for cellulitis (a range exists dependent on the site of infection).

Recommendations for the third sector

  • To promote this Guidance and work with the NHS to explore opportunities for enhancing services and patient care.
  • To work with the NHS to consider educational initiatives to support workforce and service development e.g. funding lymphoedema development posts, training tissue viability/wound care staff in cancer care.
  • To work with the NHS to help support awareness raising and education on lymphoedema care within the wider workforce.

MDS spreadsheet

Minimum Dataset for Lymphoedema Services

This spreadsheet is designed to help you collect a minimum dataset to describe the types of patients attending your lymphoedema clinic and demonstrate workload and capacity. The drop down menus ensure that the data you collect will be comparable with that collected by other services using this tool. Please ensure that you add text wherever you select the ‘other’ option. Also, there is a comments box at the end of the row to capture any other information you wish to include.

Acknowledgement: This MDS spreadsheet has been adapted from the work done by Kay Morris, Ireland and the BLS MDS form.

Template business case

Template business case – lymphoedema services Commissioners can use this document to create a business case to take to their board to help develop a lymphoedema service in their area.

The template business case is a practical tool based on, and to be used alongside, the commissioning guidance for lymphoedema services published in March 2020. Although the template business case focuses on the commissioning of services for adults living with and beyond cancer, it can be used for the commissioning of all lymphoedema services, whether cancer related or not.

Lymphodema services can be commissioned at a Sustainability and Transformation Plan (STP) or local area level. Our cancer team recommends that a comprehensive lymphoedema service is commissioned at STP level. This service should align with STP objectives and have the appropriate support for implementation. We believe this approach will be the most sustainable, will deliver better economic benefits, and will ultimately produce better outcomes for patients.

Within this document, there are sections where commissioners need to add in local information, and these sections are clearly highlighted. Commissioners can delete sections and appendices if they are not required and can also use their own branding on the document.

Service specification

Lymphoedema Service Specification

A service specification is a practical tool based on, and to be used alongside the commissioning guidance for lymphoedema services published in March 2020, and the business case. It describes all aspects of a good lymphoedema service and can be adapted for local use.

Community of practice report

Lymphoedema Community of Practice Report

A key recommendation of the Commissioning Guidance for Lymphoedema Services for Adults Living with and Beyond Cancer was to ‘scope the feasibility of developing a pan-London Lymphoedema Network to provide peer support, disseminate knowledge and skills, share good practice and improve research and development opportunities.’


On Tuesday 3 November the pan London guidance was launched at our virtual event “Lymphoedema Guidance for adults living with and beyond cancer”
The slides can be downloaded here.  Watch the webinar below.