Secondary Breast Cancer Pledge

Two of the UK’s leading breast cancer charities – Breakthrough Breast Cancer and Breast Cancer Care – have teamed up with York and Scarborough Hospitals to help identify areas of good practice as well as improvements to services for people diagnosed with secondary breast cancer.

The Trust has signed up to the Secondary Breast Cancer Pledge, in commitment to providing the best possible care to patients diagnosed with secondary breast cancer living in and around York, North Yorkshire and the North East Yorkshire coast.

Improvements were identified through patient questionnaires, and patients were also included in discussions to agree on the best way to go about implementing the required changes.

One significant request from patients was to have a single point of contact within the breast care team once diagnosed.  The hospital teams have committed to providing this by allocating each secondary breast cancer patient a named key worker to act as an advocate, co-ordinate care, and provide support and information as needed on a one-to-one basis.

Of the 50,000 women and 400 men diagnosed with breast cancer each year in the UK, it is still not known exactly how many of these patients will go on to develop secondary breast cancer – cancer that has spread beyond the breast or armpit to other parts of the body.  Secondary breast cancer cannot be cured but it can be treated and controlled, sometimes for a number of years.

Margaret Ralph, 70, from York who was diagnosed with secondary breast cancer in 2012, said: “Being told that your cancer has spread is an incredibly frightening time and when you hear those words it can be very difficult to process the information you are being given.

“One of the goals set out today is to ensure that a nurse either sits-in on this appointment with you or makes contact within five working days to ensure that any changes being made to your treatment plan are understood and answer any questions you may have once the news has sunk in.

“It is such a good idea to get input from patients themselves, as we are the ones who know what it is like to live with cancer.  I’m proud to have had a hand in what I hope will be some really useful changes for other patients like myself in the near future.”

Catherine Wood, Senior Involvement Officer at Breakthrough Breast Cancers said : “Patient engagement is at the heart of this initiative; we hope that by joining forces with Breast Cancer Care, we can make a real difference to the lives of people living with secondary breast cancer across the UK, and the friends and families that surround them.

“With the introduction of increasing numbers of new and improved treatments, many people can live for months and sometimes years with secondary breast cancer,but they do have very specific needs.  In order to ensure their needs are met, and that the best possible care is provided, it is imperative that the voices of these patients are heard.”

Sylvia Ward, UK-Wide Services Manager at Breast Cancer Care said: “We know from our specialist work in this field that people living with a secondary breast cancer diagnosis need care and support to meet their complex needs.  Many tell us they feel invisible and ignored.  Depression and anxiety can be common experiences amongst this group.  They may be dealing with ongoing side effects of treatment like chronic fatigue, are living with uncertainty about the future and face difficult decisions about end-of-life care.

“Despite this, so many people across the UK tell us that the support they had when diagnosed and treated for primary breast cancer just isn’t there after a secondary breast cancer diagnosis and the Secondary Breast Cancer Pledge aims to address this.”

Jackie Frazer, Breast Clinical Nurse Specialist at York Hospital said: “Listening to patients’ experiences is invaluable and that’s why this project has been so important. 

“We are constantly looking at ways to enhance the care we offer and the development of our pledgehas allowed us to get a full picture not only of what we are doing well but also what we can be doing to improve our service in future to ensure that we are giving people the best care possible.

“We look forward to implementing the changes highlighted and I also want to thank all of the team here and the surveyed patients who have worked so hard over the past year on this.”

The Department of Health-funded programme builds on Breakthrough Breast Cancer’s Service Pledge for breast cancer, which has revolutionised expectations for 30,000 breast cancer patients at more than 50 hospitals across the UK.

02 June 2014