Adding life into years for cancer patients with lymphoedema

Dr Karen Robb, Macmillan Rehabilitation Clinical Lead for our Transforming Cancer Services Team, explains how we’re working to support cancer patients affected by lymphoedema in London.

I have worked as a specialist cancer physiotherapist for over 20 years and have spent the majority of my clinical time working with people living with the consequences of cancer and its treatment.

Lymphoedema has been an area of great concern for both patients and clinicians for as long as I can remember.

For those who don’t know, lymphedema is the chronic swelling of a body part that is caused by a failure or malfunctioning of the lymphatic system.

Usually developing in the arms or legs, it can be due to an inherited abnormality or due to damage to the lymphatic system by disease or trauma.

In some people, cancer causes changes in the lymphatic system which results in lymphoedema.

In London we estimate that there are approximately 800 individuals with lymphoedema in each borough.

Many will say that lymphoedema care has not been given the funding or priority it deserves over the years, and I agree wholeheartedly with that viewpoint.

There will always be competing priorities in an NHS with limited resources and growing demands on its services.

Right now, in cancer care, the main competing priorities are cancer waiting times and diagnostics. Improving these areas is vital to improving outcomes in cancer and few would question their importance.

However, is it conceivable that a healthcare system that devotes its attention to adding years to life without an equal focus on adding life into years is ultimately neglecting an important aspect of patient care.

We know that lymphoedema is incurable, lifelong and has a significant impact on the quality of life of patients and their loved ones.

We know that specialist lymphoedema services help manage and reduce swelling, improve quality of life, and stop patients developing infections and needing antibiotics and hospitalisation.

We know that helping people to reduce their risks, diagnosing patients early and helping them to look after themselves are all fundamental not only to the patient but also to to achieving patient outcomes and financial sustainability for the NHS.

Ultimately, we know that good lymphoedema care empowers people and makes a real difference to people’s lives.

Yet services within London are currently fragmented and vary significantly from one borough to the next. Despite some excellent services we know that there are still significant waiting times and limited or no access in some areas. The issues and challenges facing many services are long-standing.

I was delighted to lead the work within Healthy London Partnership’s Transforming Cancer Team to develop resources to support commissioners provide comprehensive lymphoedema services to Londoners.

In August 2016, we published Commissioning guidance for lymphoedema services for adults living with and beyond cancer.

A multidisciplinary task and finish group that included clinical experts, service users, commissioners, the voluntary sector and NHS strategic leads supported this work.

Following feedback from commissioners, we have now published a template business case.

The template business case is a practical tool and is designed to be used alongside the commissioning guidance to help commissioners when approaching their Boards and making a case for better lymphoedema services in their area.

The business case includes an overview of lymphoedema, why high quality services are important and has several sections where commissioners can add in their local data to help build a case for change. Our main recommendation is that is that a comprehensive lymphoedema service is commissioned at STP level.

Although the focus of the commissioning guidance and template business case is on lymphoedema due to either cancer and/or the treatment for cancer, we believe it will also be useful in the planning of all lymphoedema services, regardless of the cause.

We hope these resources will support commissioners in London to examine their lymphoedema services, benchmark themselves against best practice and work with others to deliver the best possible care for their communities.

We will continue to work with a wide range of partners across London to support decisions about the commissioning of lymphedema services and support commissioners to establish high quality services.

Our ultimate goal is to make sure wherever, whenever and however someone finds themselves with lymphoedema, they have timely access to the best available care and support.

About Karen

Karen is a specialist in cancer rehabilitation and trained as a physiotherapist in Scotland, graduating in 1992. Her career has spanned virtually all of the domains that contribute to improving the care of cancer patients and she has held clinical, academic, research and strategy posts. Karen is currently Macmillan Rehabilitation Lead for the Transforming Cancer Services Team in London, where she supports commissioners to make decisions about rehab services. In previous posts Karen has been Regional Lead for Rehabilitation for NHS England in London and Consultant Physiotherapist for Cancer services at Barts Hospital.

For more about Healthy London Partnership’s work to improve lymphoedema services contact karen.robb3@nhs.net

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