MDT Reform
Personalised Care

What is lymphoedema?

Chronic Oedema/Lymphoedema is a chronic swelling that can affect any area of the body but usually the arms and legs. It develops when the lymphatic system does not work properly. This can have an impact on a person’s physical, psychological and social wellbeing. The sooner you treat this, the better outcomes for the patient. In  early 2019 the Macmillan Greater Manchester Lymphoedema Programme was set up as a two year programme to understand the needs of people at risk of and affected by Lymphoedema across Greater Manchester.

There are two causes:

Lymphoedema can be heredity/ congenital

Overload, blockage or damage to lymphatic system it can be the result of a cancer treatment, an infection, injury, inflammation of the limb, or a lack of limb movement.

A recent study showed that approximately 1 in 7 cancer patients will develop lymphedema (by Rockson et al 2019) – Cancer-associated secondary lymphoedema
The project was required to:
  • Gather information about what lymphoedema were available and examples of good services

  • Write a Gap Analysis Report

  • Develop a Greater Manchester approach for all lymphoedema

  • Work with the commissioners and services to inform what changes are need to achieve the GM Lymphoedema approach

  • Support CCGs with information if required for business cases for additional funding

  • Work with services to develop tools to help transform their services and people at risk of lymphoedema

The approach would ensure Greater Manchester to have a cost effective, pro-active and sustainable delivery of lymphoedema that
  • Identifies people at risk, regardless of the cause of their lymphoedema

  • Supports self- management

  • Reduces co- morbidities caused by lymphoedema

  • Provides timely assessment and treatment for chronic oedema/lymphoedema

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Key People

The Programme Team consisted of 5 roles

  • Macmillan Programme Manager, Debra Allcock @DebAllcock

  • Macmillan User Involvement Facilitator, Laura Tickle

  • Macmillan Project Support Officer, Molly O’Shea (from March 2020)

  • Macmillan Clinical Lead, Karen Livingstone (January 2019 – January 2020)

  • Macmillan Quality Improvement Facilitator , Alison Reddicen (January 2019 – March 2020)

  • Macmillan Project Support Officer, Melissa Shaw (February 2019 – November 2019)

Latest News

The project ended in December 2020.  It was agreed that Greater Manchester would strive towards a Lymphoedema System Approach to ensure consistency and accessibility to treatment for chronic oedema/lymphoedema:

Greater Manchester would work together to achieve the co-produced GM set of standards statements

Download Here

The project listed to to people affected by lymphoedema when developing the system

Download Here

The programme established 16 work priorities

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  • Information and Analysis Framework

    An Information and Analysis Framework was developed during the set up of the programme to understand the data required to write a  robust gap analysis.

  • Gap Analysis Report and Appendices

    In December 2019 a GM Gap Analysis Report was shared to the programme’s key stakeholders showing  the variations in lymphoedema provision across Greater Manchester, identify the competency levels of the wider workforce and understand good practice in GM and nationally.

  • GM Lymphoedema Set of Standards

    These set of standards have been taken from a number of service specifications, national guidance and good practice. These standards are based on the GM Lymphoedema system approach.

  • GM Lymphoedema Pathway

    A strategic pathway to evidence the pathway that Cancer, Primary Care, Community and End of Life and Palliative care workforces need to developed within their pathways to ensure chronic oedema/lymphoedema risk reduction, early identification , appropriate treatment and supporting the self-management of patients

  • GM Locality Documents

    A series of meetings were held with each locality in GM and a specific document was created to show the provision of lymphoedema in each locality including an action plan for each locality to work towards

  • The Programme’s Final Report

  • User Involvement  Final report

  • Personalised Care – Guidelines for Self-management

    For consistency across GM it was agreed that a care plan template would be developed. Based on a number of sub group meeting it was clear that the lymphoedema services would prefer GM guidelines for a care plan to follow to enable them to deliver personalised care but to a specific standard. The guidelines have been produced based on a personalised care approach and have been shared with all the services to embed into their practice.

  • Report Spec for prevalence of lymphoedema

    A data specification for primary care data coding has been developed to understand the know prevalence in each CCG area. Each CCG will have Business Intelligence teams to support you to gain a report to understand your known lymphoedema prevalence. Attached is a copy of the report request

  • GP Diagnosis Template Letter

    A template letter has been provided to each lymphoedema service to send to GP’s for each new patient indicating which SNOMed code is required for each patient. This is to improve accuracy of recording.

  • Top tips for wider workforce

    The programme in combination with lymphoedema practitioners created a top tips document for community nurses, primary care and the GM network looking to develop similar for the other risk workforce. This includes information on early identification, risk reduction and how to appropriate access lymphoedema services. This addresses learning and development for wider workforce.

  • Gateway C – Late Effects Module

    Gateway C is an England e-learning tool for primary care workforce regarding cancer has developed a Managing Physical Effects module. Within the module the Macmillan Clinical Lead is discussing the risk of lymphoedema, what that patients can do to reduce their risk in developing the condition and how to recognise the condition in its early stages.

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