Lymphoedema

Introduction

The Macmillan Greater Manchester (GM) Lymphoedema Programme was a two year programme that commenced in January 2019 until December 2020. The partnership between Macmillan Cancer Support and Greater Manchester Cancer was set up to understand the need for people at risk and affected by lymphoedema across GM.

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.

Powerpoint presentation: What is Lymphoedema?

There are two causes:

Primary Lymphoedema – Lymphoedema can be heredity/ congenital

Secondary lymphoedema – 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

Patient Stories

Janet’s Story

Judith’s Story

Liz’s Story

Nina’s Story

Noreen’s Story

Rick’s Story

Key People

Laura Tickle
Debra Allcock

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.

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

The programme established 16 work priorities:

Resources

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
MGM Evaluation Framework
The programme used the Logic Model and MEL framework to evaluate the programme work streams.

Tools Developed to support the set of standards

Skin Videos

A short video on cellulitis and lymphoedema
Introduction to skin care for lymphoedema
Skin Care video for Head and Neck lymphoedema
Skin care video for lymphoedema of the leg
Skin care video for lymphoedema of the arm
Skin care video for breast lymphoedema

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. Visit GatewayC here.

GM Cancer, Lymphoedema practitioners and commissioners are still going to be working on the following after December 2020

Projects  NarrativeContact details
Transformation network for lymphoedemaA group of lymphoedema practitioners, Tissue viability leads and management of services will be working together to deliver against the project’s handover work plan to continue transforming lymphoedemaFollow them on Twitter @MGMLYMPH
Hosiery guidelines/ formularyHMR CCG are leading on this with a project recommendation to complete a proof of concept pilot. The project submitted a scoping document to the Greater Manchester Medicine Management Group for this piece of work to be agreed. Additional financial impact information was required. You can request a copy of the scoping documentJan Teece HMR CCG
End of treatment summariesLymphoedema is now mentioned in the end of treatment summaries for the relevant tumour groups. Any future adaptations will appropriately include lymphoedemaGM Cancer’s Personalised Care Programme
Manchester Amputation Reduction StrategyThe programme has worked with Manchester Amputation Reduction Strategy (MARS) to incorporate lymphoedema, wet leg and red leg pathway. This programme’s Clinical lead and vascular consultant,  Nas Ahmed from Manchester Foundation Trust.  Nas Ahmed

Lymphoedema Services in Greater Manchester

Lymphoedema ServiceAreas CoveredCriteriaContact details
St Ann’s Hospice lymphoedema ServiceSalford, Stockport, Bolton, Trafford, Manchester, WiganCancer and non-cancer related lymphoedemaTel 0161 702 5421
St Ann’s Referral
Christies Lymphoedema ClinicAll GM LocalitiesCancer related lymphoedemaChristie Referral
MFT Nightingale lymphoedema serviceAll GM localitiesBreast cancer related lymphoedema only 
Bury TVN and lymphoedema serviceBuryCancer and non-cancer related lymphoedemaBury Referrals
Bolton Hospice lymphoedema serviceBoltonCancer related lymphoedemaVia Christies referral
HMR INT lymphoedema serviceRochdaleCancer and non-cancer related lymphoedemaHMR Referrals
North Manchester Community Lymphoedema ServiceNorth Manchesternon-cancer related lymphoedemaNorth Manchester Referrals
Oldham TVN and lymphoedema ServiceOldhamCancer and non-cancer related lymphoedemaOldham Referrals
SRFT Breast cancer physioSalfordBreast cancer related lymphoedema onlySalford Referrals
Tameside and Glossop Community lymphoedema serviceTameside and GlossopCancer and non-cancer related lymphoedema0161 922 4888 Option 3
Wigan and leigh lymphoedema serviceWigan and LeighCancer and non-cancer related lymphoedema 

Additional resources

This is a large number of online resources available and these are a number of them as of 2020. Other resources can be found completing an online internet search.

Prehab4Cancer

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Visit the new Prehab4Cancer website

12 March 2020
Important changes to the Prehab4Cancer Programme in response to Coronavirus (COVID-19)

As a precautionary measure, the Prehab4Cancer programme is making important changes in response to the current Coronavirus (COVID-19) outbreak. Face to face sessions are suspended, with patients receiving telephone assessment and follow-ups. Please see the leaflet below for more information.

Introduction to Prehab4Cancer

Prehab4Cancer is a transformation project which will facilitate up to 2000 people, living in Greater Manchester,  who are newly diagnosed with cancer, to engage in exercise, nutritional screening and have improved emotional well-being. The importance of preparation ‘Prehabilitation’ and active recovery pathways in cancer are being increasingly recognised by cancer patients and healthcare providers around the world.

(more…)

Cancer Education

The Education Transformation Programme aims to provide free education and training to any cancer care giver across the Greater Manchester and East Cheshire system, to ultimately drive standards and improve patient care and experience. We will improve the GM patient’s cancer outcomes and experience through delivery of education which will empower the GM workforce to meet the following key priorities:

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Reaching the right people

We are building a Greater Manchester Cancer network to so we can communicate with people based on their job title and interest areas for all upcoming activities and news across the system.

The ‘Events Hub’ on the Greater Manchester Cancer website will provide the details of educational opportunities across GM and East Cheshire. This will promote equal access to education opportunities, reduce duplication and optimise the use of the education resources currently available in the system.

Our Twitter page communicates our latest updates on all education and training – Follow us here: @GMCEducation

How we can work together

Are you holding an event? By teaming up with us you can:

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Let us know about you

Are you holding an event? Please email the Education Team so we can discuss your event and any other questions you may have. 

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