Strictly embargoed until: 00:01 Monday 19th March 2012
For media enquiries:
Sophie Howells: sophie.howells@breastcancercare.org.uk, 0207 960 3450
Laura Ellis: laura.ellis@breastcancercare.org.uk 0207 960 3505
Out of hours: 07702 901 334
Pilot finds majority of secondary breast cancer patient data can be collected via
existing channels but support is still lacking
The results of a landmark secondary breast cancer data collection project will be announced
today (Monday 19th March 2012) at the NCIN Breast Cancer Workshop in Birmingham. The
pilot reveals that, as deemed mandatory in Improving Outcomes: A Strategy for Cancer, it is
possible to collect the vast majority of data needed to effectively commission and plan
services for people in England with recurrent and secondary breast cancer through existing
NHS data sources. As further evidence of the importance of recurrent/metastatic data
collection, the pilot found that supportive care offered to secondary breast cancer patients is
currently lacking.
Fifteen breast units in England, and their associated regional cancer registries, collected data
on recurrent and metastatic breast cancer patients between June and November 2011. The
project, led by the National Cancer Intelligence Network (NCIN), Breast Cancer Care, the
West Midlands Cancer Intelligence Unit and the Association of Breast Surgery, highlighted
areas for improvement in data capture but, encouragingly, found that 81% of the 598 patient
records matched reports on the National Cancer Waiting Times Monitoring Dataset
(NCWTMDS) and 94% were found in NCWTMDS and/or the cancer registry data.
However, the pilot also found that four years since support charity Breast Cancer Care called
for change, almost half (47%) of the 598 patients identified were not recorded as having been
referred to a breast or palliative care clinical nurse specialist or any other key worker following
the diagnosis of their recurrence/metastasis. This reinforces what anecdotal accounts
frequently indicate – that patients with recurrent and metastatic breast cancer are continuing
to miss out by not being offered the same level of specialist information and support routinely
available to primary breast cancer patients in England at diagnosis.
This demonstrates a worryingly lower level of information and support available to people with
secondary breast cancer compared to that routinely available to patients with a primary breast
cancer diagnosis in England.
Sue Keir has been living with secondary breast cancer for the past xx years and has been
campaigning for change with Breast Cancer Care for six. She said:
“I’m extremely heartened by this progress in data collection. For so long I and thousands of
others have felt invisible and ignored. But what it also confirms, yet again, is that support is
still woefully lacking and all the time we do not know how many people are living with
secondary breast cancer in England, support cannot be adequately planned for or provided.”
Dr Emma Pennery, Breast Cancer Care’s Clinical Director said:
“This is a first, important step in terms of recurrent/secondary breast cancer data capture, and
analysis of a group of patients who so often miss out on information and supportive care. The
pilot has shown that recurrent/metastatic data collection will not be an additional burden on
clinicians. Instead, with existing channels already capable of capturing the majority of data,
the focus can now be on encouraging clinicians to input data and ensuring data accuracy.
“This project is promising in how it has already encouraged some multi-disciplinary teams to
dedicate time specifically to discuss metastatic breast cancer patients and address how they
manage this patient group. This approach allows for planning of comprehensive treatment
plans. The challenge now is to roll this out across the country and utilising findings to improve
access to support for all patients with recurrent/metastatic breast cancer.”
Dr Gill Lawrence, Director of the West Midlands Cancer Intelligence Unit said:
“This project has been an encouraging start. Differences between Multi-disciplinary Team
pilot data and the available matched data from the National Cancer Waiting Times Monitoring
and cancer registry datasets suggest a need to work on the correlation between patient
clinical data, cancer waits submissions and registry data. Notwithstanding the variation
currently seen, there is strong potential to clearly identify patients with recurring and
secondary breast cancer if we build on what has been achieved so far.”
Di Riley, Associate Director for Clinical Outcomes at the National Cancer Intelligence
Network (NCIN), said:
“We are already proficient at capturing information relating to new patients with cancer, but
this project helps to ensure that support and resources are targeted at those that need it most
across the full pathway, including people with recurrent/metastatic breast cancer. And, as we
roll the pilot out across England, we hope to learn more about the treatment given this patient
group.
“High quality cancer intelligence is critical to improving cancer survival and the NCIN strives to
carry out more of this type of work to ensure information is captured across every stage of
cancer patient’s treatment.”
Ends
To receive a copy of the report, for more information or to interview a spokesperson
please contact:
Laura Ellis
Press and PR Officer, Breast Cancer Care
0207 960 3505
Laura.ellis@breastcancercare.org.uk
Note to editors
About the pilot project
Fifteen breast cancer units across England took part in the pilot for six months from June to
November 2011. They identified 598 patients with recurrent and/or metastatic breast cancer
who were then matched with the National Cancer Waiting Times Monitoring Dataset
(NCWTMDS) and with data received by cancer registries.
The Secondary Breast Cancer Taskforce was a two-year initiative, set up in 2006 by Breast
Cancer Care in recognition that people with metastatic (secondary) breast cancer were not
receiving the best possible standard of care. A national coalition of healthcare professionals,
charities, policy makers and people with metastatic breast cancer, the Taskforce identified
gaps in the treatment, support and care of people living with metastatic breast cancer,
through surveys, research and expert consensus.
About Breast Cancer Care
Breast Cancer Care is here for anyone affected by breast cancer. We bring people together,
provide information and support, and campaign for improved standards of care. We use our
understanding of people's experience of breast cancer and our clinical expertise in everything
we do. Visit www.breastcancercare.org.uk or call our free helpline on 0808 800 6000.
About the National Cancer Intelligence Network (NCIN)
The National Cancer Intelligence Network (NCIN) is a UK-wide initiative working to drive
improvements in standards of cancer care and clinical outcomes by improving and using the
information collected about cancer patients for analysis, publication and research. Visit
www.ncin.org.uk for more information.
About the West Midlands Cancer Intelligence Unit
The West Midlands Cancer Intelligence Unit is the regional cancer registry for the West
Midlands and the NCIN lead registry for breast cancer. Visit www.wmpho.org.uk/wmciu for
more information.
About the Association of Breast Surgery
The Association of Breast Surgery represents healthcare professionals treating malignant and
benign breast disease in the UK, Ireland and worldwide. It focuses on education, audit and
guidelines to enhance the treatment of patients with breast disease. Visit
www.associationofbreastsurgery.org.uk for more information.