Breakthrough Breast Cancer today published a report claiming more needs to be done across the NHS to meet the needs of breast cancer patients who develop lymphoedema after their treatment. The recommendations, which form part of Breakthrough's 'Constant Reminder? Living with Lymphoedema' report, aim to ensure everyone who develops lymphoedema after breast cancer has access to services that can give them the best possible quality of life.

Lymphoedema can occur following some forms of breast cancer treatment and is caused by a build up of excess fluid in the tissues. This can cause long term swelling in the arm, hand or upper parts of the torso. Although the physical effects are clear to see, it is often the psychological and social effects that have the greatest impact and can lead to low self esteem and depression. Although breast cancer treatment is not the only cause of the condition, it is estimated that at least one in five patients who undergo surgery for the disease will go on to develop lymphoedema in their arm.

Breakthrough surveyed 200 people who had experienced lymphoedema after breast cancer treatment and found that in some parts of England, patients are not getting access to vital care for the condition due to inequalities in services provided. This means that in some cases people have to travel long distances, wait for treatment, or even go without the services they need. The report suggests, amongst other things, that monitoring of lymphoedema patients, education and training for healthcare professionals and local referral guidelines all need to undergo change to improve patient experience.

Maggie Alexander, Director of Policy, Education and Influencing at Breakthrough Breast Cancer, says,

"This condition can have a real impact on everyday life -some people find it difficult to work, wear normal clothes, or undertake everyday tasks such as gardening or playing with children and grandchildren.

With more people surviving breast cancer, we need to make sure that people who develop lymphoedema after breast cancer treatment have the care they need to live their lives with the best possible quality of life. Unfortunately we have found that some patients simply aren't being given the access to services they need to help them live with their lymphoedema.

We hope our Constant Reminder report will spur people on to push local commissioners and healthcare professionals to implement a series of changes, that will allow for an improved quality of life for all lymphoedema patients."

About the report

-- The National Cancer Action Team (NCAT), in early 2010, published a care pathway for the treatment of patients with or at risk of lymphoedema. This guidance sets out the care that all cancer patients at risk of lymphoedema, including those treated for breast cancer, should receive. Many of the recommendations in Breakthrough's report draw upon the detailed recommendations included in the NCAT pathway.

- Breakthrough has also produced a standalone campaigner's toolkit, Your guide to taking action locally - England, for people who are interested in driving forward changes on this issue in their area.

Key recommendations in the report include:

-- The number of patients diagnosed with and treated for the condition should be recorded to improve estimates of the number of cases of lymphoedema in their area

-- A range of appropriate lymphoedema services should be commissioned through primary, cancer and specialist lymphoedema services and appropriate treatments should be provided. These should be available to all patients who need them in the area. The appropriate setting for care should be considered based on patients' needs (e.g. community care and secondary care)

-- Education and training should be given to all healthcare professionals (including primary care, cancer, palliative, and allied healthcare professionals) regarding lymphoedema signs and symptoms and best practice for risk reduction and management

- Local referral guidelines and systems should be developed to enable relevant primary, cancer and palliative healthcare professionals to refer directly to local lymphoedema services.

Breast cancer in the UK

- Nearly 48,000 women are diagnosed with breast cancer each year in the UK.
- Breast cancer is the most commonly diagnosed cancer in the UK.
- 1 in 8 women in the UK will develop breast cancer at some point in their lifetime.
- Around 1,000 women die of breast cancer every month in the UK.
- Around 300 men are diagnosed with breast cancer every year in the UK.
- More women than ever in the UK are surviving breast cancer thanks to better awareness, better screening and better treatments.

Source:
Breakthrough Breast Cancer